Spondylitis Association of America

I've been thinking about the old "Symptoms not Found" thread we started last year. I think it would be helpful to start a new thread that regulars, newcomers, and lurkers might find useful when checking for symptoms that other people experience. Maybe there are even clusters of certain symptoms. THAT would be intersting to look at. I know Friend in KY was doing this on his website.

Here are a few thoughts about it...narratives/stories should not be posted...just a straight-forward listing of symptoms.

1. bone pain
2. chest/rib pain
3. pain in the lower back
4. migraine
5. neck pain
and so on......

Telling stories ought to be done in regular posts. That's an important part of sharing our illness/changes that AS has brought to our lives. I had no idea that other people suffer from bone pain. It was a completely new symptom for me. I think such a post would be helpful.

Is this doable??????


trying to get over a three-day migraine

(EDIT: Changed title)
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 06/13/07 10:34 PM
May as well give it a shot. Depending on the response, we will keep it stickied.

We'll use this thread smile

hip pain either one side, or bilaterally
swelling joints such as knees, elbows, wrists
plantar fascitis
extreme fatigue
mouth sores, such as canker sores
easily damaged tendons or muscles that take a long time to heal
  • Inflamation of eyes, particularly in the am
  • Feel like I have the flu for 1-2 hours after waking in the morning..the more I sleep, the worse I feel
  • 3 disks in the lowere back in the process of fusing
  • lesions on my pelvis
  • lost two inches in height in the past 5-10 years due to spinal curvature and deterioation
  • severe pian and numbness in lower back and hips
  • pain and inflamation in elbose, knees, neck
  • continual pain in right achilles tendon
  • significant asymetrical hearing loss in both ears
  • increased "burning" pain and numbness in lower back and hips with prolonged walking or standing
  • Neuroligical symptoms such as memory loss and dyslexia
  • Fatigue..require more rest

These are what come to mind...
*Deep pain in buttox ("sit bone")
*Hips feel like they are in a vise grip by late afternoon
*numbness elbow to pinky finger
*heel pain
*Some excersize helps but is difficult to do
*Trouble sleeping
*feeling of wanting to slouch all the time
*brain fog comes and goes
*pain radiates down back of leg from buttox
1) Knee pain daily (am-pm)(severe some days)
2) Rib pain (especially when first laying down or moving certain ways)
3) Shoulder blade pain (every day)
4) Like having the flu (usually after 6 p.m. and upon getting up)
5) Always greeted by the Chicken of Depression instead of the Bluebird of Happiness.
6) pain in lower back (pain goes thru buttocks down back of legs).
7) Neck pain daily.
8) Shoulder pain daily.
9) Hip pain (usually one or the other, or both)
12) FATIGUE (sorry, its a biggee)
12) Heel pain (some days yes, some days no)
13) Pain inbetween shoulder blades (worse after 6 p.m)
14) Trouble sleeping more than an hour or two at a time all nite.
15) Jaw pain (left side, on & off)
16) Just kidding about # 5. laugh sorta
(ps) also, I have a problem with what feels like RLS when trying to sleep...except that I get it in my arms also.
here's my list:
-low back pain
-joint pain diffuse
-radiating pain from hips to ankles
-joint stiffness increased in AM
-burning mouth syndrome
-swollen ankles
-swollen submandibular glands
-red eyes on and off
-trigger points throughout body
-new this year: difficulty breathing due to decrease chest expansion
-h/o plantar fasciitis
-severe reflux in past requiring surgery
-h/o kidney stones
-h/o vulvodynia
I believe most of these are related. Diagnosed with undifferentiated spondolopathy.
confused confused eek
* low back pain (severe at times)
* buttock pain (severe at times) and goes down the back of my legs
* significant decrease range of motion
* fatigue (severe at times)
* sternal pain
* stiffness after sitting or laying down
* difficulty sleeping because of pain
* feel like someone's pushing on my back (really have to be conscience of my posture)
* left shoulder and left knee pain
* occasional plantar faciitis

I think that's all, but everyday is a little different!
three disc fused in lower back
ribcage pain
back shoulder blades hurt
pelvic pain
loss of appitite
sleep deprevation and confusion
socially inept
healing from a cut takes forever
neck pain and stiffness (might be from skatebaord falls though)
1.PAIN IN HIP JOINTS 2.fatigue 3.headaches 4.waking up in the early morning stiff 5.sometimes trouble breathing 6. low back pain neck pain 7. low grade fevers.
oh and i forgot irregular periods now in menapause and i am 33 could be from AS OR DRUG THERAPY TREATMENT .
1. low back pain
2. hip pain
3. increase curvature of spine
4. disc deterioation and stenosis
5. neck pain
6. less flexability
7. kearitis 3-4 times a month
8. weakness in left leg and pain
9. buttock pain
10.pain in hands and arm, shoulders
1. Flue like feeling much of the time
2. pain in both hips
3. Pain in both wrists (swollen)
4. knee pain both
5. fatigue fatigue fatigue!!!!!!!!!!!!!all day
6. lage weak can't walk ( walk like Yoda)
7.Shoulder pain especially the right
8. right arm weakness to the point I can't ues a hair dryer
9. damage in both hips and shoulders as seen on bone scan
10. migraines ( take topamax and frova)
11. low back pain can't travel long distant in a car
12. large scaly patch PsA on my lft tiba (covers most of my leg)
13. Pleurisy about 4 times a year
14. aderformed chest bone
Most of the time I have very little pain. I do have stiffness on cold days, and occassional flare ups of pain for a few days at a time.

*My pain consists of full back pain.
*radiating pain in hips and down legs.
*neck pain
*pain in upper arms and elbows
*difficulty breathing (especially with exercise)
*rib stiffness and pain
• Joint pain in hands & feet/Heel pain
• Nail psoriasis/sausage fingers & toes
• Bilateral hip & SI pain
• Recurring Sciatica
• Multiple herniated/bulging disks & advanced OA for my age
• IBS/Colitis
• Numbness in legs & feet, loss of reflexes in extremities
• Loss of bladder control
• Sleeping difficulties/Night Sweats
• Significant, rapid weight loss just prior to DX
• Severe fatigue prior to Enbrel
• Most recent symptom - pain in ankles (very bad some days)
* Severe left ankle swelling and pain. Now deforming
* Severe knee pain that comes and goes with some swelling. This was where my AS started (way back in High School).
* Right hip pain, during the day, and especially if I sleep on that side
* Chest/Rib pain mostly near sternum
* Upper back pain whenever I have Chest/rib pain
* Severe lower back pain if I lay flat on my back
* Frequent Night Sweats, trouble staying asleep
* severe fatigue during the first four hours awake each day
* Chronic numbness in the tip of my left big toe
* New minor pain in right hand, both shoulders
* occasional dry, itchy patches of skin
* constipation/intestinal inflammation before I started anti-inflammatory meds
~feet pain
~knees ache and wobbly
~legs above knees cramp
~sides of legs cramp below and above knee
~both hips (currently only from sleepin on)
~low back pain each side
~butt pain each side (not currently)
~pain runs down leg (not currently)
~mid back pain around ribs to sides
~ribs hurt sides (mostly during sleep)
~sternum pain (not currenlty)
~shoulders hurt (may not be AS, could be neck)
~elbows ache and painful when left in one position
~wrists ache
~neck pain - can't look down

~shoulder blades
~can not lay on back, severe low back pain
~can not lay on stomach, severe sternum pain
~STIFFNESS that doesn't wear off until around lunch time. It is horrible getting up in the morning, everything hurts from sleeping the night before. Must take something to sleep all night.
*sharp pain in the secrum
*pain when sitting on conforming chair/couch
*sharp and constant pain in the lower back/secrum
*heaviness in limbs
*pain in hips that make it difficult to walk
when excercising
*swelling in fingers
*migraines & sharp piercing ice pick headaches
*extreme fatigue
*blurred vision
Early years,
1. low back pain, mild
2. pain in neck, knees moderate pain
3. mild fatigue most of the time
4. shoulder pain and ribs mild to moderate pain
Last 5 years. Overdrive
1. Fatigue like the flu most of the time
some brief periods of improvement
2. CHRONIC PAIN Moderate to Severe
Neuropathic Pain- shooting Electrical PAIN
3.LOSS of some range of motion in neck
When this hurts you cannot concentrate
4.Shouders and thoracic /currently almost no pain
5.Elbows, Hands ,Wrists, sharp pains,
swelling in fingers and sometimes numbness.
7.Knees now have moderat pain/enthesitis
11. TMJ my jaws have been hurting moderate plus
12. Finger Joints just started having first
time pain this year, calcifications
13. Ribs are sore to touch
14.EYES dry scratching feeling
15.starting to have mild balance problems
16. developed Lung problems, last two years
Sleep Apnea, Asthma
18.heart valve involvement
19.anxiety and depression that I mostly control with Lexapro
20.Nails have ridges, skin inflammation behind both ear lobes.
I,m tired of writting thats enough wink
1. pain in shoulder blades
2. pain in elbows
3. plantar fasciitis
4. pain in the sacro-iliac joints
5. upper back pain
6. diagnosed with arthritis in right little finger prior to AS diagnosis
7. neck pain
8. TMJ
9. arthritis in knees
10. hip pain
11. numbness when sleeping on arms
12. arthritis in the tarsometarsals
13. bursitis (left elbow and suspected hips)
14. ankle enthesopathy
-severe iritis
-cramping in legs
-swelling in knees and ankles
-hip and si pain
-lower back pain
-stiffness and pain in hands and wrists
-stiffness upon waking up
-always hot 24/7
-rib pain when sleeping
-do not sleep all night
-severe achilles pain and sometimes burning on ball of foot
I guess it's time to list me symptoms:

1. stiffness midback and between shoulder blades
2. pain lower back and on tailbone sometimes
3. left-shoulder pain
4. hand and wrist pain
5. right-knee pain
6. right-ankle pain
7. plantar fasciitis left foot
8. migraine headaches of worsening severity
9. neck----snaps and crackles
10. bone pain (that's a new and recent symptom)

The heck of all this is the pain tends to move around and not even be consistent from one day to the next. The back aches and pains are pretty constant.

Originally posted by fall_of_moonbeams:
I guess it's time to list me symptoms:

The heck of all this is the pain tends to move around and not even be consistent from one day to the next. The back aches and pains are pretty constant.

That is one reason why we are so hard to diagnose. I have had most of your symptoms, except for the bone pain.
Jerry has AS, fibro, torn discs and undiagnosed crohns.

low back pain
thoracic pain (used to crack and get relief, much harder to crack now, and very stiff)
plantar fasciitis
shin splints
feet swell terribly
buttock pain
cannot sit for more than 10 minutes
cannot stand or walk for any length of time
feeling of broken glass in his stomach
feeling of 'battery acid' in his intestines
constipation/diarrhea alternating within hours of each other (explain that one??)
very tight muscles in his calves and close to his spine (muscle spasms?)
neck pain
swelling of hands and difficulty moving his fingers, esp in the morning
can barely move in the morning because of stiffness
occasional blurred vision and eye pain (never has had iritis)
achilles tendonitis
difficulty sleeping
almost total fusion in both SI joints
stenosis in S1 through L5

I mentioned the above conditions he has, because it's hard to tell which symptoms belong to which condition.

Here are my symptoms:


- lower back pain
- diminished range of motion in right shoulder
- fatigue
- flu-like symptoms several times a week (especially if I am in the office or on my feet most of the day)
- jaw pain
- swollen gums
- swollen knuckles in my hands (worse in the morning)
- burning behind my knees
- insomnia
- diminished breathing due to swelling in breast bones
- colitis


- knees and hips lock-up (caused quite a few falls on my stairs)
- swollen glands
- gout
- hair loss
- upper back pain
- ankle pain
- frequent infections
- difficulty staying hydrated
25 yr old - female - Hla b27 negative
AS dx 5/2007- began Enbrel same day

current symptoms on Enbrel-occaisional motrin
s fusion
hip fusion
gait changes
cervical neck stifnees/decreased ROM-right,left,up,down
interrupted night sleep
spine pains mild/crackling
easily becomes cold
observed crabbiness

pre Enbrel
Unremitting pain 1 1/2 years til dx and enbrel
for 7 years flares 1-2 weeks at a time every 1-2 months
bi lateral sciatica - culminating in leg weakness, tendon tightening (was unable to fully straigten right leg at ankle, knee, and hip for 3 or more month while walking prior to enbrel)
Chest tightness to,
shortness of breath to,
chest pains
3 bouts iritis
always hot
pain with sitting
unable to be on feet over time sometimes 10 min was too long
hip pain
sleeping on side most comfortable
interrupted sleep
morning, afternoon and evening pain and stiffnes
mild frequent/almost daily headaches
poor gait during flares
during flares afraid to be bumped or jostled, even someone sitting on the couch next to her elicited "be careful"

lifelong ?
sweaty palms, feet
mild but very frequent headaches
allergies to cats
earaches and strep throat problems-age 5 removal and tubes- tubes needed again at 12

I think that's it.
in the beginning:

back pain (mid & lower) about 2 months in duration every couple years


neck & shoulder pain came on for about 4 months, had to do physical therapy and cortisone shots
(could not use arm without significant pain)


pain in neck with nodes??
shoulder pain & stiffness
mid and lower back pain & stiffness
butt pain radiating to thigh
hip pain & stiffness
ankle, heel and bottom of foot pain and stiffness
wrist pain with nodule and swelling
Knee pain ( on the top of knee) burning pain
all of the above made worse after inactivity
sometimes hurts just to lean back against couch or pillows
hurts to sit
occasional rib soreness, especially after sleeping
malaise/flu-like symptoms/feelings
low-back pain
Sacroiliac joint pain (feels like tailbone pain)
Heel pain
ankle and foot pain
swollen feet and ankles
jaw pain/TMJ
"shrinking" (have lost an inch in heighth)
intermittent wrist pain w/ swelling
stomach complications
34-year-old female with prior history of rheumatic fever (October 2006)

* Cyclic fever (12-14 day cycle) with fever spiking over 101°F since January 2007
* Severe plantar fascitis pain in left foot (affects my gait)
* Intermittent pain in left achilles tendon
* Stiffness after lying down or sitting
* Joint and tendon pain in left elbow
* Tendon pain in both knees
* Muscle spasms
* Numbness in groin after prolonged sitting
* Severe right ankle joint pain with horrible swelling
* Severe right foot pain (small foot bones)
* Ankle, feet, knees, and calves swell after activity or prolonged sitting
* Joints crack, pop, and grind in lower back, hips, knees, ankles, wrists, and elbows
* Fatigue ranging from mild to severe
* Intermittent sore throats
* Unbearable tailbone pain some days
* "Buzzing" (vibrating) feeling in left foot
* Pins and needles and numbness in feet and hands
* Trouble sleeping
* Reduced concentration
* Sore spots on body (I cringe when family members want to hug me)
* Mild muscle weakness & loss of coordination (dropping things all the time)
* Mild balance problems
33 year old male
-stiffness; limited flexibility
-pain in lower back, upper back and neck
-brain fog; lapses in concentration
-joints pop in knees, shoulder blades, wrists, ankles, arms
-occasional numbness in upper right leg
-leg weakness; unable to stand in one place for a long period of time
-pinch nerve problems mainly in lower back
-hunched over upper back
-loss of one inch in height
lower back pain
knee pain
ankle pain
stomach problems, both diareah and constipation
wind pains
morning stiffness
*joint pain, all joints including fingers & toes

*severe pain and stiffness in cold temperatures

*loss of social life (lol)

*Reynaud's, telangiectasias


*endometriosis and recurrent miscarriage (3/3)


*joints pop all the time

*finger/toenail changes - twisting, flattening, ridges

*fingers "turning" (as in bending sideways at joints, like RA hands)

*rosacea (face, tummy, 1 arm)


*fainting spells and balance problems

*mild iritis

*mild rash on hips and thighs since onset



*occasional bone pain

*ulcer from pain meds (this has to be included)

Also, should note that my sibs have AS, RA, Fibro, MS and melanoma; cancer and depression rampant in the family as well
1. Unrelenting enthesis on several sites in right foot and left hand.
2. Intermittent enthesis in knees, hips, elbows, etc.
3. Stiffness and soreness in spine, esp mid to lower.
4. Regular low grade fever.
5. Morning stiffness, weakness, nausea.
6. Major swelling of left big toe (dactylitis).
7. Swelling of fingers and toes.
8. Achiness of wrists, ankles, feet, knees, spine, etc, not constant and depends on how effective the NSAID is.
9. Hives over the knuckles and all over hands.
10. Headache.

Other: T1 Diabetes, fibromyalgia, IBS, rosacea, various muscular/mechanical issues.
1. FATIGUE! This is so huge.
2. Pain in lower back, early spinal fusion in lower disks
3. Pain in shoulders and neck, like they are on fire
4. Trouble sleeping - falling and staying asleep
5. Pain worse in the morning and right before bedtime
6. Migraines
7. Knee pain, inflamation
8. Numbness in back of legs (new)
9. Night sweats (not menopause or medication related)
10. Balance problems
11. Weekness
mine are similar
*stiffness/ache between midback and shoulder blades
* heels feel like I am stepping on coals in am
* If I sit or stand too long I also look like Yoda
* throbbing bone pain in lumbar area
* brain fog and speech problems before meds
* word finding difficult
* shoe size 2 sizes larger in last 2 years
* can't wear my rings due to sausage fingers
*wrist , ankle knee pain intermittent
* stomach bloating/ new Chrohns DX
* Feel like an 80 year old in a 30 yr old body
* fatigue
* unable to sleep
* 2 bilateral herniated disc requiring surgery.
* eyes bloodshot and goopy
* cannot tolerate heat. flu like symptoms
* heart conductivity problems
* aquired Asthma at age 30
* night sweats day sweats
* muscle twitches 24/7
* trigger points /shoulder trapezeius
Tired of blabbling good nite
very lucky not to have been worse
AS some 50 yrs
Iritis only in one eye so far
very painful hips
very painful neck
failed kidneys
blocked arteries
very painful rib cage
ankle bones
knee bones and hip bones
in fact every bone in turn
and most annoying itchy skin
unable to sit stand walk for long other than that Im doing well chin up always
Hip pain
Back Pain
Knee pain
Sciatic comes and goes
Stiff neck
Chest pain comes and goes
...lol..what doesn't hurt...
-lower back pains
-hip pains
-groin area/bladder problems
-ribs sore
-intestinal problems/bowel problems due to stomach cramps
-fatigue to the extreme,one of the worst symptoms i think
-loss of appetite
-morning stiffness lasts anywhere 2-4hrs
-extreme difficulty sleeping due to postional pains
-STRESS!!! my poor brain
-hard marble like knots in muscle tissues
-diminished sex drive due to groin discomforts, very distracting, still works but hard to care frown
-shoulders and neck
- and i hate complaining all the time
-i also hate feeling like i should hide all this pain.....
Bilateral Sacroiliitis
Sclerotic and eroded SI Joints fused bilaterally
Buttock pain continued
Pelvic/groin pain continued
Osteistis Pubis
Hip pain bilaterally
Osteoarthrosis of the knee bilaterally/w effusion and edema
Carpal Tunnel syndrome
Tendonitis/Bursitis of the shoulder bilaterally
Moderate to severe oteoarthritis/w chronic pain on motion of the cervical spine
Thoracic spine pain/stiffness
Secondary Fibromaylagia
Secondary Myofascial pain
Chest pain (Costochondritis)
Iritis (generally left eye only and infrequent)
Halux Rigidus L/R big toe with bone spurs
Achilles tendonitis
Flattening of both arches
Adult degenerative scoliosis in the upper T-spine
Facet arthopathy
Degenerative joint disease (DJD)
Persistent LB Pain/Pain on motion/loss of ROM are very prevalent for me
HLA-B27 positive w/elevated CRP and SED rate

***Note: This is a list of increased symptomology from going 20 years without a diagnosis. I have probably left something out but you get the gist.
i am not diagnosed yet but here r my symptoms.
1.severe SI joint pain
2. stiffness and aching in all my joints
3. exhaustion
4. trouble sleeping
5. trouble sleeping too much
6. night sweats
7. numbness in toes
8. sciatic pain
9. irritability
10. depression
11. severe muscle spasms in my back
12. severe muscle spasms in my neck that has caused straightening in my cervical area
13. hip pain
14. swelling in my fingers
I have been just checking in and reading, not posting much due to much pain in many areas and thus difficulty sitting/typing/reading/the full list, just like the rest of you... So just catching up on the symptoms list. My best answer is probably simply: YES, YES, YES, YES, YES, & YES

But here goes, to the best of my memory, which is not very good right now due to the stupid brain fog and now fibro fog, and probably some medication issues...

~Childhood onset
~So-called "growing pains"
~Acute inflammatory arthritis
~AS with SI joints and multiple other joint involvement
~HLA-b27 positive
~Sciatic nerve
~Muscle spasms throughout the body
~Muscle cramps throughout the body
~Chronic and acute sinus infections
~Metabolic Syndrome (Diabetes, High BP, Obesity)
~Poly Cystic Ovarian Syndrome (caused diabetes and the obesity)
~Irritable Bowel Syndrome with alternating diarrhea and constipation
~Nausea/vomiting when the pain is high
~Dizziness/Vertigo (separate from the Meniere's)
~Meniere's Disease
~Positional Vertigo
~Plantar fasciitis
~Degenerative Osteoarthritis
~Lumbar Spondylosis
~Cervical Spondylosis
~Hair loss (chunks/hand fulls)
~Thyroid disorder
~Another hormonal imbalance (gynecological)
~Dry eyes/morning mucus or sand in the eyes
~Blurry vision
~Cluster Headaches (have snapped off two teeth during these while clenching my jaw)
~Difficulty sleeping due to extreme pain
~Waking up in pain throughout the night
~Bladder and bowel control problems (also retention problems)
~Dry skin
~Constant itching sensation
~Brown patches developing on skin due to PCOS, and also from the rashes
~Raynaud's Phenomenon
~Sausage fingers and toes
~Swelling in hands, face, toes, feet, legs at strange times - no correlation to being on my feet for example
~Fever (nearly constant for over 30 years)
~Elevated CPR and SED rate
~Extreme fatigue
~Tendency to drop into low blood sugar easily
~Hypersensitivity reaction to cigarette/cigar smoke
(will now wind up with an infection, and maybe even in the hospital)
~Limited range of motion due to the fibromyalgia and the AS
~History of urinary tract infections
~Kidney function is now becoming impaired, and the nephrologist says kidney disease is beginning to set in
~Pain in every muscle, tendon, ligament, joint, area of the body... if I own it, it hurts in some way and in some form
~Swollen and deformed joints (also red, hot and sweaty to the touch)
~Night sweats
~Inability to do anything for any length of time, such as stand, walk, sit, lay down, recline
~Having a much harder time concentrating on any mental tasks, even those that I usually find pleasurable such as reading
~Numbness, tingling and/or pins & needles sensations running from my neck through my shoulders down my arms to my fingers and from my back through my buttocks down my legs to my toes
~ An arm or a leg suddenly goes completely limp, numb and useless - just dead weight: when I am standing or walking this has actually caused me to fall down twice when my leg went dead on me and I had nothing to grab
~Severe mouth sores
~Constantly peeling/splitting/cracked finger and toe nails
~Highly sensitive to senses: so smells, lights, textures/touch, sounds, tastes may bother me that do not bother others

I have more stupid symptoms, but I have had to stop multiple times to accomplish this much. I know I kept saying "Yes!" as I was reading the other entries. I wish nobody had any of these, and I really wish no one else would ever again be stricken with AS or any other autoimmune disease/disorder.
Dx: October 2006

1. Fatigue
2. Hip pain & pain around my SI joints
3. tendonitis
4. pain and stiffness in metapharyngeal joints & dactylitis
5. Pain & tenderness along spots of my ribs and sternum (have trouble breathing)
6. bursitis
7. epicondylitis & wrist pain
8. My ankles (sometimes knees) swell when I stand or walk too long on a daily basis
9. Pain around my scapula (shoulder blade)
10. TMJ pain and locking
11. Lower back pain (occurs in patches)
12. recurring episodes of iritis or something
13. muscle cramps
14. photophobia (I have to wear sunglasses or I get headaches)
15. Trouble sleeping probably cause of the pain and having to sleep just on my back.

Geez, I hope thats it. I'm not sure if all of those are AS related because I also have general allergy issues.

Hey does anyone else have problems with what feels like an ear infection/loss of hearing? My doctors tell me its just my allergies and my flonase seems to work for but I am just curious.
I grew up swimming in creeks, rivers, and all kinds of places we wouldn't ever let our kids dive into now, and never had an earache. Now I have one ear well I have two, but I have one, the left that hurts, and the gland under it gets sore, and it pops and makes noise...scary:) And it is not swimmer's ear. I thought it was and it may well be just part of my overall sinus problem.
When I started enbrel, my sinuses went nutz, along with bronchial spasms and eventually pneumonia. I already knew I had athsma but found out during a really bad case of pneumonia around Christmas that I have fibrosis in my lungs, another little gift from AS. Oh joy! I believe that was the most frightening of all the gifts this disease has given me. I can live with the pain, and the stooped kyphosis, but the fibrosis is a progressive disease, and I am going to have to fight that on a daily basis with nebulizer, inhalers, singulair at bedtime, and on and on. Sorry, got long winded (typing, not breathing:).
My only symptom is softball sized swelling in my knees every 10-14 days. After reading the list of symptoms others have listed here, I'm beginning to wonder about my diagnosis. Can a person have an illness similar to Spondylitis that we're missing because I just coincidentally happen to be HLA - B27 positive?
Here I go:

Severe wrist pain, both sides (this is how it all started for me)
Thumb joint problems, both sides
Plantar's Fasciitis
Severe tendinitis at Achilles-both sides
Pain in the balls of both feet
Lower back/butt pain
Bursitis issues in left shoulder
Neck pain (getting worse over time)
Extreme fatigue-Enbrel helped immensely with that
Ankle pain/feeling like they will snap
Shin pain -in my shin bones
Pain at the groin-from hip?? both sides
Secondary fibromyalgia-

Just a note; I never had any swelling at all, 'cept a little in the left ankle. I also rarely had an elevated sed rate. I doubt that I would be diagnosed, even now, without the MRIs on both wrists and my back.
Where do I start?
-started as unexplained leg cramping (thought I
had a DVT)
Moved up and settled into my knee thus..
-severe unexplained knee pain and swelling
without prior injury, warm and
tender to touch,unable to kneel
-decreased range of motion to effected joint
-range of motion increases and pain subsides the
more I walk, but overdoing it also causes pain
to worsen
-increased back pain, at times unable to sit
for lenghty time
-xray showed severe SI inflammation bilaterally
no changes in knee xray
-Hla-B27 positive
-history of sciatic problems (shooting pain from
hips down legs, feels like hips are giving out,
butt pain)
-fusion of sacral area to lower lumbar (relate
to injury, back hyperextention in highschool)
-inability to bare weight on effected leg
-occasional neck pain and stiffness
-occasional feeling of having difficulty getting
a good breath in (dyspnea)and wheezing
Dx. with adult onset asthma, inhalers
ineffective, antihistamines some effective
-occasional irritability
-loose stools with feeling of constipation
-occasional hyperactive bowel sounds
-occasional stomach cramps
-rib discomfort (costochondritis)
-elevated D-dimer
-EKG normal
-Chest CT normal
-chest xray normal
-Sed rate elevated
-elevated C-reactive protein
-elevated cholesterol LDL, decreased HDL
-stools negative for bacteria (see footnote at
-wild fluctuation in Blood pressure (unusual to
normal)highs and extreme lows,
-occasional light headedness
-pin prickly (pins and needles poking
sensations) in chest, arms, face, etc.
-numbness and tingling in hands and feet
-occasional difficulty swallowing saliva
-problems with getting particles in tonsils,
causing sore throat
-recurrent tonsilitis (negative for strept)
-burning, sore sensation in throat and tonsils
-dry mouth
-headaches relieved by antihistamines only
-sensitivity to light (photophobia)
-occasional weight loss with nausea
-temporary anxiety
-occasional all over body muscle pain, soreness
and tenderness (feels bruised to the touch)
-heart palpitations on minimal exertion and at
night, wakes me up unable to breath for short
period of time
-chest tightness
-occasional stabbing pain in lower left abdomen
-occasional stabbing pain in upper middle back
on right (associate with generalized
-one time pain in ureter, bladder area
-chills and sweats
-veins on legs coming to surface
-ear fullness and discomfort
-occasionaly feels like film over eyes
-normal temp in 97's, has been in 98's, but no
typical 'fever'
-no vomiting
-no hot joints, only warm
-itchy rash on head, unresponsive to any
shampoos though responsive to ABT when had
pneumonia several years prior, but came back
-new rash looks like psoriasis, on elbow, within
past year, responsive to cream with
antibacterial, antifungal properties
-occasional pains in areas of prior injury
-tendonitis of wrists reflare of prior injury
-sometimes Ibuprofen effective, sometimes not
-one time sores in mouth

BEWARE: Crazy thing is...all this did not start until exposed and reexposed to bacteria Salmonella Tennessee from recent Peter Pan recall. From the peanut butter itself, and the jelly I used to make Peanut butter and jelly sandwhiches with the same knife. I have not been dx. with Reactive arthritis (formerly known as Reiter's syndrome) but Psoriatic Arthritis because the causative organism cannot be found!!

Day 1 reexposure 2 hours after...difficulty breathing and audible wheezing, irritability. Day 2 joint pain reoccurred and ROM and stiffness recurred muscle pain, fatigue, and allover soreness. Still difficulty breathing but no wheezing.
Day 3 loose stools and feeling of constipation, stomach cramping, nausea, weight loss begins.
Day 4 anxiety, veins in legs to surface, fatigue, photophobia, heartburn. chest tightness, stabbing pains in back and abdomen, numbness in hands and feet, chills, sweats..no fever, BP normal, WBC's normal, no vomiting.
(all signs of Typhoid fever without the fever)and signs of infection
Day 5 same
Day 6 add generalized lympodanopothy, chest pain and tightness, anxiety, elevated BP, elevated pulse, increased LDL cholesteral, decreased HDL
Normal EKGs and stress test. Palpitations.
Day 7 symptoms improving with exception of joint pain ie knee and lower back, anxiety decreasing
Terrible spasm between my shoulder blades
Pain in Shoulder Blades
Tongue Ulcers
Rib/Sternum Pain
Difficulty Breathing
Crepitus in Neck and T-Spine
Hip Pain and Sub-luxation
Lower back stiffness
Loss of natural curvature in the C-Spine
Scoliosis of T-Spine
Plantar Faciitis
Insomnia due to pain
Terrible spasm between my shoulder blades
Pain in Shoulder Blades
Tongue Ulcers
Rib/Sternum Pain
Difficulty Breathing
Crepitus in Neck and T-Spine
Hip Pain and Sub-luxation
Lower back stiffness
Loss of natural curvature in the C-Spine
Scoliosis of T-Spine
Plantar Faciitis
Insomnia due to pain
Hi everyone...this is my first post. I'm almost 48, diagnosed with AS at 23, but it started in my senior year of high school.
My symptoms are: 1)Sleeping has become my biggest problem. I also have developed what feels like RLS but is in my arms also. I recently tried a Fentanyl patch for a couple months but stopped because I didn't like the way it made me feel. So I thought the RLS stuff was just withdrawls from me stopping, but maybe not. Ok...so lousy sleep...big problem, because it seems the more you lie down the worse you feel,yet your tired all the time. Make sure your sleep areas are very soft, the couch seems best for me.2)Stiff and sore neck, I can move my ears toward my neck about a half inch.3)Obviously like everyone else plenty of back pain...the severity seems to come and go.4) Fatigue....I set many daily goals for myself in the morning and seem to find a reason for not doing many of them...but it's usually just because of fatigue.5)Chest pain..I've had this from the start, before I was diagnosed I can remember doctors giving me shots of cortisone into my chest when I was 18 or 19 because they thought I had a torn muscle in my chest. Also expanding the chest with deep breathing is difficult...but do it every day! 6)Knee pain...but I'm not sure it's related, could just be knee pain. 7)Within the last few years I've developed some intestinal issues, not sure why, but it's like I'm all over the board from one extreme to the other for no apparent reason. 8) Eye issues, in the morning I have trouble focusing on anything on my way to work, but that goes away in about an hour. 9) Anybody ever have trouble swallowing, some days I have to move my head kind of forward to swallow, or tilt it to one side...weird. 9) Last but certainly not least, constant ringing in my ears...the quieter the worse it is, so just another added sleep distractor. I think thats it for me...many of you sound worse off than me and I hope the best for all of you. Some day I would like to talk about whether we could have allergies of some sort, and what types of medications are working best for every one....thanks, Ron
I guess I want to add for newbies reading this that these are severe cases for the most part. Remember that AS does not progress to severe for most of us. Don't get too freaked out when you read this thread.

For me after 15 years of AS:
two years of SI pain until left one fused --no pain for 13 years now

Neck stiffness -- comes and goes

Back pain at lower ribs coritsone shots really helped me here

Iritis -- off and on in alternating eyes for 13 years. This has been quiet now for 18 months.

Kness are my worst spot. Alternating Bursitis and fluid in the knees. Not a lot of pain just really stiff.

Foot pain but it comes and goes as well.
Drizzit, I have to politely disagree
with you on that one. I think there
is a misconception that spondy does
not progress to severe in most cases. Perhaps
this is why most people don't know what we
have, or really seem to care. Spondy is
portrayed as mild disease that can be easily
managed and should not knock one on one's butt.
As a med student AND a patient, I can say
the more severe cases are really more frequent than mild to moderate. This country has done a
poor job of collecting data about a lot of autoimmune diseases, with AS and related conditions being overlooked more often than most.
I am not trying to frighten anyone, or pick a fight. I'm just being honest.
I guess we agree to disagree then. I agree we have done a lousy job of tracking autoimmune diseases.

Here is the only long term study of AS I have found. It followed patients for over 33 years. A majority of AS cases did not result in spinal restriction. These numbers are not that far off the Amgen numbers of 30% severe and fused AS patients.

Of 51 Canadian war veterans with ankylosing spondylitis followed from 1947-1980 (ie 33 years) the disease progressed to severe spinal restriction in 21 (41% or 2 in 5) people. Those people who progressed to severe disease after 33 years had already got severe disease within the first 10 years of symptoms. Those who did not develop severe disease did not have severe X ray changes in the first 10 years. This means the severity of disease can be predicted in the early years. A predictable pattern of disease emerges within the first 10 years of disease.


We can totally agree to disagree. But, please
not that the last year of follow up for these
patients is 1980, and we have different
criteria for diagnosis and progression and better imaging techniques. Also, most of the references listed are quite old. The American Academy of Rheumatology has recently changed their
description of the disease to acknowledge that
AS is much more disabling than previously recognized, and that improved diagnostic techniques are needed to ensure that
people are not waiting years to be diagnosed.
There are much more recent studies that
30% of people with AS are forced to change
jobs or leave the work force entirely
because of AS.
If you go to www.pubmed.com and type in
"spondylitis"+ disability you will find
studies from 2006-2007 that support this.
I understand but also remember those patients were probably at least in their 60's in 1980 and began to die off. Mild to moderate cases of AS may not ever be diagnosed as the patients will make due with OTC meds so the official data is not representing all cases. 30% of people leaving the workforce due to severe AS is consistent with my numbers as well.
Hello, this is my first post. I am 46 yrs old. My symtoms started while I was still in high school. I was told I had pulled both hamstrings (playing basketball). When my symptoms continued, I thought it was because I had not stayed on crutches for the full two weeks as the doctor had recommended. For the next 27 years I went to MANY doctors and was told I had eveything from bulging disk, rheumatism, siatica and so on. I began to have major muscle pain in the front of my thighs. I was sent to a rheum because my ESR was 50. Finally a dx - AS.
All my symptoms now make sense.

  • SI joint pain ( alot in the beginning)
  • low back pain (all day long now)
  • sternum pain
  • crepitus in neck (w/ constant muscle burning)
  • fatigue
  • restless leg syndrom
  • neuropathy of both feet
  • standing or walking for extended periods cause worsening back pain
  • sitting extended periods causes legs to tingle
  • the constant inflammation has caused my heart to beat to fast
  • difficulty bending over because of L spine fusion (3 disk)

As a result of AS, while I was on the smallest dose of prednisone, I sat on the side of the bath tub to hard and broke my hip. I now have a plate and 7 pins in my hip and have lots of trouble with it.
I have passed the HLA-B27 gene on to my son and he to has developed AS.
I have been on Enbrel 2 different times, once for 3 months and the other for 4 months. Lost my health insurance both times. mad Am I the only one who is frustrated with our health care? I am so grateful for Enbrel (it is the only medication I have taken that caused most of the pain to go away), but if people don't have health insurance and make to much to get it free (but not enough to pay $1500 a ,month)what good is it.
Sorry, just needed to vent.

hey Sara, you should talk to your doc about Humira, they have a payment plan to help people with no ins. when i applied i was told it would cost $3oo/mth i wasn't approved because of income. my symtoms
pain and stiffness
lower back hips neck shoulders feet heels leg weekness :

I was more-or-less diagnosed yesterday after the last round of spinal x-rays. Just waiting for the genetic test (HLA - B27 -- is that right?) to see if my (in my doctor's words) "90 percent sure diagnosis turns into a 99 percent sure".

I'll vent later on these boards, but for now I wanted to list my history of symptoms. I've looked forward (in a wierd way) to doing so for awhile, because this topic on this board led me to self-diagnose and guide my doctor in the right direction in terms of tests (good doctor, that he didn't get offended). Anyhow, when I googled a couple of my symptoms, and found this site and this list, my jaw dropped so hard that I called my friends and took the rest of the day off from work. So, in the spirit of someone else who may google things, here's my list (the dates are approximate:

-- age 20: My "waist" falls apart on the left side. My Dad calls it my "butt pain" (thanks Dad), but suddenly I can hardly walk. I take 180 degree right turns to turn left for awhile. I suffer with ocassionally excrusiating pain in my left leg for two years.

-- age 22: I go to the doctor, finally. Major hospital, major city -- they find nothing wrong -- send me to physical therapy, my insurance gets screwed -- and long story, short -- they didn't get the money they thought they should get, and I didn't go to the doctor (except for a broken arm playing softball) for another 11 years.

-- age 22-23: other things start happening. Wicked shoulder-blade pain trying to sleep next to my then-girlfriend for an entire night. Lower back pain trying to carry light backpacks trivial distances.

-- age 25: my right leg starts having the same problems my left leg did. Really bad (see below) -- nothing that followed after it has been nearly as painful.

-- age 27: I start having problems jogging. I could still jog, because I learned that, with my body, as long as I took some aspirin and alternated "elipical machine" exercise, I could get my legs to work most the time. The pain also moved from my "butt" to my groin for some reason.

Anyhow, my chest joints started hurting when I jog(I didn't know about costal joints at the time, but figured after a few months if I wasn't dead yet, I was okay). Stil an occasional pain, but not always.

age 25: I started getting rashes on my hands and feet constantly. It might just be dyshidrotic eczema -- but just to mention that.

late 20s, early thirties: Problems getting off off chairs and sofas without little stabs of pain and occassional grunts. People saying things like "c'mon old man" (in endearing ways). Occassional this and that with things like getting in cars or laying down flat.

age 30: By now every sofa and chair I own has "lumbar support". Mostly, at this point, I make sure I have enough back pain when I go shopping so I can sit in chairs I'm shopping for and pick out the right one.

age 31: I tell another "then girlfriend" that I can't sleep in the same bed anymore (and it was a good 1000 dollar bed) and sleep on the couch the rest of the time I know her

age 32: My parents visit and start talking about my posture and how if it doesn't improve they are worried about me being a "hunchback". Someone at a professional conference asks me if I have "back problems" without knowing me.

Last month: I figure I'm turning 33 and probably should have a "family doctor". I make an appointment and mention the pains as an afterthought (I think I'd really just gotten so use to it that I thought myself I was a hypochondriac). He does nice little tests like the "sed test" (ESD) and the C-protein tests, and I end up with inflammation scores roughly 6-7 times higher than average (70 and 6, if anyone's curious).

Even though the pain is hard to describe because it travels around so much (all on the torso and waist, though -- like I said to him -- it's easier to describe where it isn't) and is reasonably mild most of the time -- he stuck with the story and the spinal x-rays eventually told the rest.

Anyhow -- that's my first post and brief version. Can't wait to see what's coming next.

Seriously, though, this specific topic here helped me prepare mentally a lot for what came about. While no one should get too wrapped up in self-diagnosis, it sure felt familiar to me by the time I got mine.

So I hope everyone keeps writing about their symptoms to help out folks who might be searching.
Rico Fan,
I'm sorry your symptoms are so severe! You
will find all the support you could ever hope
for on this board. I actually had to laugh
when I read your statement about having
to sleep on the couch, and your then girlfriends (I don't mean that
offensively at all!
I'm just 2 years younger than you and I too
have gone through several significant others (boyfriends in my case), partly because they could not deal with my sleep issues wink I still can't get my Dad to stop calling me early in morning on weekends. The concept of being unable to sleep
just doesn't get through to people who don't deal with chronic pain.
Welcome to the board,
Hey Downhiller,

Thanks for the good word. It's funny that my symptoms have come across as "severe" -- because I never thought of them that way. Hell, I was throwing a baseball around with a friend the other day and impressing him with my mighty 50 mph fastball smile

But, the doctor did say it seems liked I might have a severe case because of my inflammation levels and an elevated alkaline phosphatase score -- which I take it indicates "bone remolding".

After reading the other symptoms I'm glad I haven't had things like bad fatigue (although I think frequently waking up at night and popping some aspirins in between does encourage a certain desire to stay in bed a good nine hours) or iritis (your story about Dad calling too early on weekends was great!)

So far I'm trying not to be nervous about what's to come, and often wish I could go back to the idea of these just being "aches and pains". But now I have a chance to fight, which is good.

Anyhow, I don't want to clog this great threat with small talk. I hope someone is considering it for research purposes, even if it might be a bit of a biased sample.

1: ACCUTE IRITIS 1998/2000/2005

SI joint pain
thoracic spine pain and limited ROM
dry eyes
plantar faciitis
achillies tendon pain
hands stiff and swollen
hip pain and Right Hip locked (needs replaced)
sleep in a chair most nights

Juanita in Ohio
1. Neck stffness and pain radiating up he back of my head

2. Knee pain

3. Left sacral joint
Here goes:

Burning lower back pain

When bending touch air 20 inches above ground

Tendenitis, bursitis in many joints, moves around. One day shoulder next hips

Ankles swollen

Wake up in middle of night in terrible pain

Stiff in morning for an hour or two

Extreme fatique (need a new word for that)

Pain in hips, shoulders, ankles, lower back, neck, wrists, hands

Diagnosed with Psoriatic Arthritis, which includes spondylitis.

- Pain
Lumbar spine
Upper back and ribcage
Neck, leading to migraines
Big toe, right foot
Jaw joint (comes and goes)

- Fatigue
- Unable to sleep more than 4 hours (until I started taking amitriptyline)
- Night sweats
- Psoriasis
- Onycholysis (nail problems)
- Dry, itchy eyes

The worst of these symptoms is the migraines, closely followed by the fatigue, which I find just crushing most days.
As with others, my symptoms come and go and pains travel from one area to another, sometimes within a couple minutes.
Some of the symptoms scare me and cause me anxiety because I never know if they are from the AS or something else (ie. chest pain from AS vs. heart attack?)

-constant pain in hips/buttocks (mostly right side
- degenerative SI joints
- pain traveling down back of legs
- pelvic pain
- pain in both knees (right more)
- tight calf muscles
- tight muscles through back
- pain in mid back area
- pain in rib cage radiating around right side
- pain in sternum and chest
- shortness of breath from decreases rib expansion
- headaches
- blurred vision
- dizziness
- always cold
- trouble staying hydrated (have had to go to ER for rehydration with IV's several times)
- racing heartbeat
- depression
- anxiety
- trouble sleeping from pain and anxiety
- "tires of always complaining about pain"
- always STIFF
I just got diagnosed a few days ago, but from the symptons listed on this site, I guess you could say that I have had AS for some time now. Here are some of mine:

-Severe full back pain (All day/Everyday)
-Severe hip/knee/ankle/hand pain
-Trouble sitting/standing for long periods
-Waking up at least 5 times during the night

I have been seeing a pain mgt specialist for 3 months now, and with the help of Soma (muscle relaxer (2/night) to help me sleep at night) and Oxycodone (3-5/day) for the severe pain, I have been able to cope with the symptoms for the most part.
has anyone heard of torturous aorta
Here are my symptoms, not sure if AS or not, but here they are...

-Pain and stiffness in neck
-Pain and stiffness in entire back (though most pain in concentrated in the middle section)
-Pain in rib cage
-Knee pain
-Pain in hips
-Pain in fingers
-Heel pain
-Shoulder pain
-Si joint pain (x-rays shows deterioration in both)
-Rapid heartbeat (during non-activity)
-Easily out of breath from simple tasks (going up the stairs very slowly (13 stairs in my apartment) gets me out of breath where I have to lie down afterwards
-Frequent (2-3/day) headaches
-Unable to fall asleep/stay asleep (wake frequently, 3-5 times a night because of pain)
-Frequent urination (15-20 times a day)
-Stomach problems (frequent pain, gas, upset stomach)
-Easily tired out

That is pretty much all my symptoms.

It is Saturday am, up for hours, I've been researching. My story...about 6 years ago dx'd with fibro, chronic pain, fatigue. Unable to take Nsaids for colon ulcers formed. I worked, past tense, 10 years for a physician, never missed work, 40-50 hrs/week. Went out on temp disability, could not stand the pain anymore, particularly in hips, knees and feet. Was getting ready to return to work and was fired July 12th. During this time had repeat CT of the SI joints, (had one ine Jan 2007) confirms acute SI inflammation, cystic formation, bones where they aren't supposed to be, etc. Realy had a "flare" of what I thought was the fibro when fired, developed trigeminal shingles. Knew immediately that was what it was so case was mild, thank God, but residual pain is horrid. Finally I feel validated, it's not in my head! I can legitimately say I hurt ALL the time. Pain is spreading now to neck, elbows, hands. Genetically tested negative. The doc wants me to consider Enbrel or Humira, see him next week, the side effects scare me and the price could drive one to bankruptcy. Hoping someone will hear my plea for conversation...just don't know what to do or where to start. ANY thoughts are appreciated. All my years in family practice and ophthalmology, the giving of self to someone else, then tossed away like garbage, I miss my patients and they miss me. You guessed it, I'm in a funk. Nickname me Sami, no. cal I thank you confused
1) constant, chronic, searing, burning pain in right SI joint
2) pain radiates down my leg until it feels numb
3) can't sit or stay in any position for long period of time
4) can't sleep at night because it hurts to roll
5)iritis-oh my God, does that hurt. Damaged my vision
6) Range of motion in all directions is limited
7) Neck has been surgically fused now because the vertebrae were herniating and fusing
8) Can't turn my head to drive (couldn't before the surgery either). I hate not being able to rotate.
9) Unstable on my feet, fall easily and break bones (most recently pelvis x2 and wrist)
10) Fatigue, oh lets not even go there!
11) Feel swollen constantly because of inflamation
12) Hands and fingers are swollen, in pain and have cysts all over them.
13) Oseoarthritis as well now, bad knees (snap, crackle, pop goes the weasel walking up the stairs)
14) Blurred vision (is that part of this?)
15) Migraines-who knows why, probably somewhat due to stress of AS!
16) Sleep apnea
And the beat goes on...
But I'm positive and upbeat because I have no choice.
This is my first time posting as Zack-O however not my first time posting here. (I used to post as Zackylosing, but had that email deleted and forgot my password.)

My mom also has AS and has the early menopause symptom.

(my symptoms are almost memorized after moving and seeing 4 new doctors hehe)

These symptoms are listed in order of most to least annoying.


1. Severe lower/mid back bone p.
2. Shoulder/upper back intermittent p
3. Rib intermittent bone pain.
4. Deep butt/high hamstring/hip radiating P
5. Finger P(sucks for a guitar player)
6. Elbow P in a small spot in joint
7. Heel p w/walking or standing 4 30min+
8. Very seldom Ankle P (unable to walk)
9. Constant Hicups (learned how to stop)
10. Food/water constantly stuck in throat
11. Cancer Sores constantly
12 Used to have Morning flu-thingy
13. W/out pain killers cannot sleep at night more than a few hrs.

One more thing... I used to be very active, and a really crazy kid. I used to Skate and Snowboard and I've broken both ankles and my wrist once and my collar bone 3 times.

My lower/mid back pain, when im not on Pain-Killers, hurts worse then any broken ankle or broken wrist after 1 hr of the bone being broken.

is this normal for A.S.?
- Iritis in left eye, dry & sore
- very poor strength in hands
- left knee very sore
- head aches in the left side of the head
- constanting going the washroom after eating
- tired most of the time
- can't sleep with out sleeping pills
I'm new but here are my symptoms.
- Lower back pain predominantly on right side near dimple area, horrible at times.
- dislocated vertebrae in my neck for no reason, just turned and bam out they went.
- IBS to the point of almost passing out.
- Acid reflux
- Fatigue
- Recent dx of lupus,
- two daughters also symptomatic and tested positive for gene.
- stomach ulcer
- pain in first knuckle of both hands at times
- can't sit, or stand for long periods of time
- Plantar facia - surgery, still some pain
- Gall bladder, sudden attack, removed
- Carpal tunnel right hand - surgery, much better, but still have some problems.
- Numb feeling on outside of upper left leg, worse with prolonged walking or exercise
- Terrible tennis elbow in left and starting in right
- hair loss (due to lupus)
- Depression and anxiety medication for years
- Noticed mental slowing, can't remember what I'm doing, where I'm going for a second.
- Arms go completely numb if I sleep on my back.
- Adjust position a lot to sleep, wiggle alot.
- Neck still acts up sometimes, feels like shoulders are going up around my ears. Takes days to go away.

It's hard to tell what is lupus and what is AS, symptoms sound a lot alike. Can't take Embrol, will make Lupus worse, so have to suffer
I have just recently been to a Rhumatologist and after reading the pamplets and seeing the symptoms here, I probably have had this for many, many years and have been miss-diagnosed for some 40 years!! Hopefully after correct diagnosing and treatment, things will get better. Will post more later.

Hope to all,
1. Intermittent ankle and big toe swelling/stiffness
2. Finger swelling/stiffness
3. Mid back stiffness, spine pain, muscle strain
4. Low back weakness
5. Occassional mild TMJ discomfort
6. Mild discomfort righ hip
7. Right shoulder discomfor-worse with movement

Previously diagnosed with psoriatic arthritis, but over the last year developing shoulder and jaw pain-wondering if might have AS instead. I have a positive HLA-B27 marker.
I don't know which of these are AS related, but here they are:

horrible lower back pain
butt pain
twitching in left thigh
crawling feeling behind right knee
eye/head pain (this is recent)
achy feeling often
depression (this is new...last couple of weeks)
IBS (big time, defines my life!)
had very bad "growing pains" as a kid
recently it has been suggested that I have AS by my GP following a long history of joint pain and stffness.I am waiting for Xrays and tests
Symptoms are
1 Altered sensation in right leg and upper limb,not a loss of sensation but a heaviness and stiffness that has become more painful over the years resulting in stiff and swollen joints.eg I havnt been able to use a manuel can opener for about 15 years .

2 Pain and stiffness in hips,low back and ribs
3 difficulty timing the swallow of fluids like cups of tea so I am frequently spilling or choking
4 general clumsiness
5 fatigue interspersed with bouts of energy which I pay for later
6 Night sweats or chills .If its a hot night I cannot sleep but in the morning I am less stiff than if it was a chill night

I have lived with the hip and low back pain since I ws 14 and X rays at that time were fine .Over the years I have found that exercise is the key to controlling the problem and havnt been too worried .In passing I mentioned to my doctor the stiff feeling in my upper limb a couple of years ago as I had had some falls and then everything went crazy and I was tested for MS and Lupus .MRI scans were fine and the bloods were inconclusive for lupus so I just left it alone as the whole experience had been very worrisome for my family.
This summer though it has taken me increasingly long to get going in the morning.It used to be about 30 to 60 minutes for me to get going but now I dont loosen up for a couple of hours sometimes it takes all day ,this is tricky when you are doing a school run and you cannot reach your feet to put your shoes on.
I have lost a lot of trunk extension this summer as I now can no longer lie face down on the floor to stretch and cannot reach the line to peg out washing without going up on to my toes to compensate for the lack of flexibility.
The final straw has been finding I am unable to reach the toilet paper in the wallholder in the bathroom due to lack of rotation.

My question is are visual difficulties associated with AS.
I have had a few bouts of iritis [treated with steroids ]over the years which I know may be related.But also I have in the past 18months lost my night vision for driving and have difficulty with speed perception .Is this likely to be related or is it a symptom of old age ??
I am 43 and despite the above view myself as pretty healthy.
Want to say hello and for me i have had problems with my joints for as long as i can remember.Finally got a dx in Aug this year.I have PsA and possibly AS.
List of symtoms:
Back Pain
Hip Pain
Knee Pain
Shoulder Pain
Finger Pain
Toe Pain as well as my feet
Stomach Problems
Eye Pain(not that often)

Im on two types of painkillers,NSAIDs was given Sulfasalsaine but had a reaction so now i have a choice whether to take..Leflunomide or Methotrexate.
Would like some ppls views on these if possible please.
These arent everyday, but what ive expierenced:
-Extreme hip pain - mostly on Left, usualy in buttocks.
-Achillies tendon in AM
-Pain between spine and scapula in left side when I take deep breaths
-Low back pain in AM

Doesnt seam like much, but my hips are always in pain. And I'm sure you all know that interferes with every movement I make. Im only 2 years in since my symptoms began, so I guess Im lucky compared to most of you. Is that what I should be expecting for my future?
I'm new here also, and have PA, RA, etc. Pa is the bugger for me.

-Pain levels of 5-6 in knees, wrists, spine, hips, ankles.
-Very uncomfortable stiffness and lack of mobility.
-Hard to walk far - the pain in the lower back and hips becomes so painful and strained.
-Cervical spine stiffness
-Neuropathy in hands and feet
-psoriasis on feet, and palms of hands, then smatterings of it (patches) on legs, elbows and upper arms.
-Depression (a more recent problem)
-Swelling in knees - big puffy cotton candy puffed knees. frown I'm told it's permanent synovial swellings - have had 22 joint aspirations and on the path for knee replacements
-wrists swollen - double carpal tunnel surgeries needed.
-weakness in connective muscles

It's definitely a struggle carrying around these diseases. I feel for all of us.
-hip pain, both sides
-sacral pain (BUTT)
-moderate knee pain on and off
-back pain and stiffness mostly in AM
-heel pain, in AM and usually only one heel
-neck pain and stiffness
-low back pain
-pain in back of thighs
-My most bothersome pains right now are in my hips and back of legs when I sit.
Posted By: T Re: Spondylitis Symptoms - List Your Symptoms Here - 10/12/07 07:42 PM
I have not been diagnosed with this disease but I really wonder if I dont have it:
chronic lower back pain near pelvis (within last 2 yrs)
back stiff in Am or after extended sitting (within last 2 yrs)
TMJ (had for last 20+ yrs),
plantar fascitis (last 5 yrs),
often have discomfort in neck and between shoulder blades.
X-rays fine
no $ for MRI

An active type of massage ( I cant remember the name) seems to help my back. If I get it done every 3-4 wks Im much more mobile. Is massage helpful for anyone else?
Im kind of afraid to get diagnosed. ( I have ostrich syndrome wink ) This disease seems quite debilitating over time frown . I would love to hear if anyone else had these types of symptoms early on.
I had all the classic symptoms in a mild way. They have been taken care of with by removing starch,lactose from my diet, but the
initiating action,
lack of stamina,

are a real bother still.

My symptoms have been fairly mild...the odd back pain or eye redness and dryness, etc. I did have tingling in my left hand but apparently was due to an entrapped Ulnar nerve. I had surgery two weeks ago for that. However, I to have had some issue with joints. Mostly with my right knee hurting a bit and even a little swelling. I wonder if this is why I get some tingling and numbness in my foot as well. Then again, I was told I have a bulging disk in my back which causes pain in my right leg and foot from time to time and now the tingling. Ugh.

Any of you had great success with the no starch diet?
I must say that there is part of me that finds this thread terribly depressing, I do think it is important though and have read it a few times. I wrote my symptoms down to post and afterward will tear it up and throw it away, because I find it terribly depressing to think of them all at once-it is bad enough having to experience them all the time.

hip pain
butt pain
lower back pain
groin pain
wrist pain
big toe pain
plantar fascitis
pain between my shoulder blades
eye pain occasionally
dry/red eyes
neck pain
chest pain(big time during allergy season)
pain in my thumbs&index fingers
joints popping(think cereal-snap,crackle, pop)
problems sleeping(want to sleep all the time, but do so very poorly)
diarrhea all the time/vomiting occasionally
ribcage pain
excessive sweating
fall more often(seem to not be able to "catch myself after a certain point)
constantly feel like I have the flu
difficulty staying hydrated
bone pain-especially with fevers

I guess it is more than some and less than others, but plenty for me. I know there are some that I have forgotten, and some that are so occasional I did not list, but you at least get the idea.
I am HLA-B27 negative and female, and these are my symptoms, starting about 3 years ago (except hip pain which began 10 years ago), and increasing ever since. None of these have healed and gone away as I had hoped:

-Feet (plantar fasciitis and ball of foot pain)
-Knee/quad tendon (left), pain and swelling
-IT band tendinitis, right side
-Hips/Greater Trochanter pain & stiffness, right side
-Buttocks deep pain, right side
-Elbows (tendinitis), Forearms, & Wrists pain & inflammation
(My tendons seem to be susceptible to inflammation)
-Low Back pain & stiffness, right side
-Mid-spine pain and stiffness
-Neck inflammation after some exercises
-Fatigue from chronic pain
-Difficulty sleeping due to back pain
I think one nice addition to this thread would be to have people list any treatment they have had or diet, supplementation changes they made and the result? Seems a lot have had great results with diet and supplementation. Maybe everyone could add this to the end of their post?
I think one nice addition to this thread would be to have people list any treatment they have had or diet, supplementation changes they made and the result? Seems a lot have had great results with diet and supplementation. Maybe everyone could add this to the end of their post?

Anyone have issue swallowing?
I have PsA

pain in wrist, finger ligaments, tendons
heel spurs
morning stiffness in feet
sore large toes
psoriatic foot and fingernails
pain in spine , ribs
low & mid back pain & stiffness
deep buttock pain - both sides
coccyx pain
spinal stinosis resulting in nerve compression
degenerative discs
periodic neck and shoulder pain
tingling, burning below knees
My 12 year old son was just diagnosed, so here goes:
1.VERY swollen ankles, slightly swollen knees
2 plantar fasciitis with extreme pain both feet
3.Stiff in morning for a few hours; hips knees ankles
4. fatigue
5. compensates for ankle and foot pain by walking on outsides of feet; now appears bow-legged
6. some scaling on lower legs

I took him in almost a year ago for the heel pain but after xrays we were told it was from too much soccer. Finally got a referral after the swelling started.

On the positive side I can say that after going to Children's Hospital LA and seeing some of the diseases other children are living (and dying) with, I guess maybe we are lucky????
- occasional low back pain
- thorasic region of back aches a lot with muscle spasms in that area.
- occastional uveitis or episcleritis in right eye.
- tingling, numbness and pain in right foot. Occasionally a little in left foot. tingling in fingers.
- shivers and some twitching at night in bed. This has happened recently but only when cold. Still odd.
- right leg feels weird and kind of anxious? Hard to explain.
- arms felt week a few nights during sleep.
- fatique
- loss of appetite.
- pain in right foot turned into twitching after a leg workout.
- left leg numb in middle of night, had to stand up and start walking around to awake the leg and feel normal. Scary.
This is me over the past three weeks:

Can you please give me your thoughts on these symptoms? Could still be AS?

It all started with pins and needls in my right foot, got worse through the days till it hurt to walk on the ball of my right foot.
Then I started getting pain in the joints around the big toe and again in the ball of the foot...then some of the same in the other foot but not nearly as bad. Then for a day, I had pins and needles in in the lower legs and that was scary. I was shaky on my feet. That has since dissapeared.
Then, one night, I woke up with my lower left leg a sleep and that scared the heck out of me. Those were the worst and startling symptoms and haven't returned.
Last night I had some tingling in the palm of my right hand and also remember one night having it in the tips of me left hand and occassionally the face. I still had the irritated right eye as well.
Quite a few nights I start to feel a little nauseous in the middle of the night and this can continue into the morning.
Fatigue was really bad for a few days during mid day hours...then cleared up.
Yesterday afternoon and evening I almost felt normal.
Today, I was a little nauseous in the morning and now feel fine.
The only symptoms I have now are tenderness in the ball of the right foot...barely noticable in the left foot. Mostly right foot.

I'm new to this board, but not AS. started at 16, I'm now 40. I'm going to list alot of things, maybe they are or aren't related to the AS, but it may help others.

1. stiffness and pain began in SI joints
2. stiffness and pain in my entire back, hips, shoulders, ankles knees and neck.
3. pain in pelvic bones
4. trouble sleeping. there is not position to lay in which something doesn't hurt
5. feels like RLS in my legs and arms when I try to sleep.
6. IBS
7. Asthma
8. depression
9. memory loss
10. I get a black "spot" in my vision at night sometimes, comes and goes
11. constant fatigue
12. muscle spasms in my back when I try to bend at the waist for too long.
13. Degenerative disk disease, which has resulted in 3 ruptured disks.
14. pain in my heels and big toe
15. feeling like I have the flu in the morning and evening
16. alot of trigger points and tendonitis. I can't remember what it is like not to hurt in those areas.
17. sudden sharp pains in my ribs.
18. TMJ
19. Muscle twitches that last for several days then stop
20. pain moves around. one area hurts for a while and when it stops, something new is aching. (this drives my husband nuts)
21. dry scaling skin on my legs.
22. ridges and bumps in my fingernails
23. my spine, neck and knees pop crackle and grind everyday
24. If I take a deep breath my back "crackles"
25. Bad GERD, to the point that I was having alot of trouble swallowing and choking on food

Have you been checked for other issues or diseases other than AS? What do you mean by a black spot in vision? Do you mean like a flaoter which are common with various eye issues. It is like a small dot or squiggle like a hair or spec on your eye that floats around. Hence, if you look straight ahead, it will slide down on your eye and move out of vision. Does that sound right?

Also, what is bad GERD?

Gastric esophogeal reflux disease=acts like regurgitation, the pyloric valve is flappin both ways allowing foods to reflux back up.
  1. Severe lower back pain.
  2. Stiffness when I first get up.
  3. Left knee motion painful after any amount of rest.
  4. Right knee has been replaced.
  5. Chest pain if I have to take a deep breath.
  6. Severe neck pain.
  7. Cirrhosis. And I never drink anything with alcohol!
  8. Renal cystic disorder.Years and years of nsaids!
  9. Tinnitus in the left ear that interferes with my balance all the time.
  10. I have hypercalcemia. I don't know what the connection is.
  11. I have nerve damage in my left thigh and foot.
  12. My back problems started with a burst fracture of L-1. It then fused to L-2. The fusion has been brokes twice since.
  13. Oh, I have 6 lumbar vertebrae. Or I did have 6 Lumbar.....
  14. I am constantly tired, suffer from depression, and can't loose weight.
  15. I feel like a weather indicator. Any change on the way and I feel it before it gets here.

The way I see it, things could be worse. I don't have the IRS on my back too!
It's funny, I know many of you feel that your joints are weather indicators, but mine have never been affected either way.
My joints like cold much better than hot and humid. I swell more in the summer, but other than that, pain levels are not affected by the barometric pressure or weather changes.

Hi, I live in the Las Vegas area so it's not cold at all. I used to live in northern Minnesota. That was cold. We don't get "weather" here, just variable barometric pressure and some change in relative humidity which is usually low. When the humidity goes up so does my pain level. Barometric pressure changes, if fast enough, hurt going up or down. It gets to 120F here but, like the locals say,"It's a dry heat." and that does not bother me. I have circulatory problems in my legs when I am sitting. When the temperature is cold, relatively, my legs ache and my feet turn blue, however even when it is hot and I sit down my feet still turn blue so its not the temperature. They just don't feel cold. Does that make ANY sense? David O
I'm newly diagnosed with Psoriatic Arthritis and Spondylitis and new to the boards too.

I only have very mild "plaque" psoriasis on my scalp. Very small patches and small amount. I thought it was strange to have PsA, but have just a teeny bit of Psoriasis and only on my scalp (which I have had since I was like 13). Was told by my Rheumy, it doesn't matter if it's mild or not. Even if you only have very mild Psoriasis, you can get PsA. (Maybe that will help some of you out there who are confused like I was about that?)

Started out years ago with pains and swelling in:

The pains listed above lasted about 8 months and then all of a sudden went away for about 4 years! Then, they came back, and this time around they again started in my wrists and fingers and knees, but then slowly "moved" to new areas and this time around the pain is much, much worse. My spine is now one of my biggest problems. My Rheumy said that I now have Spondylitis as well. She said some PsA people have a mild form of PsA, while others who have more moderate to severe PsA often develop Spondylitis too. She also said that those of us who have PsA and are HLA B27+ are more likely to get Spondylitis than those who have PsA and are not B27+. Thought that was interesting. I guess about 70% of PsA people are B27+.

Now my pains are in:
back/spine pain (biggie for me)
fingers (not as often as before)
my jaw (but only has happened twice)
fatigue/no energy (A LOT!)
slow to get out of a chair...like an "old" lady
generally move and walk slow or limping
very stiff, especially in the morning or after sitting for a while
now have a hard time sleeping at times due to pains

Sometimes I feel just pain, sometimes joints ache, sometimes I have sharp pains that I feel in areas again and again and aches like in my shoulders. Sometimes the pain and aches can go from my shoulder down my arm to my elbow and on, etc. You all know how it goes for the most part.

my symptoms include:
hip pain deep inside the buttock
ankle/heel pain
chest pain at the bottom of my ribcage
neck pain
lower back pain
wrist pain
weight loss (accredited to stress and depression)
overall loss of strength
What is "plaque" psoriasis? I have a very small patch of a scabby material on my head about the size of a small button and it had been there for most of my life. Is that PsA? Is this all tied in with AS?
richedie-it very well could be psoriasis. Everyones psoriasis is different and there are different forms/stages. Such as I have mild "plaque" psoriasis on my scalp, as I mention above. I only have a very teeny small amount and they are smaller than the top of an eraser on a pencil. I don't even really have any of the raised, red areas that are common with plaque psoriasis. Just a little bit of pink areas. Mine are small scabs with a red center. Psoriasis can change forms, and it seems like in my family (where most of my dad's family has it) it gets somewhat worse as you age.

I would suggest seeing a Dermatologist if you want to and see what he/she thinks about your patch area. PsA, at least people with PsA AND Spondylitis (because then you have mostly spinal pain, problems, and fusing like in AS) and people with AS can have very similar symptoms, except for eye problems. Seeing a Derm. would help confirm if it's psoriasis and therefore most likely PsA and not AS. It only takes a very small amount, as I've said about myself, to have PsA. Many primary Drs don't seem to get that, but Rheumatologist and Dermatologist do. Seems strange, but it's true. Good luck!

I was diagnosed with PsA and I had very little of the psoriasis on my scalp. I've suffered with butt, and lower spine pain for at least five years. Now that I'm on MTX I no longer have any of the psoriasis on my scalp. I really wish that I had seen a Rheumatologist four and a half years sooner. I hope that you can get the proper diagnosis and treatment. Good-luck to you! smile
My father has psoriasis pretty bad....and it upsets me he has to go through that.

Come to think of it, mine is small as well like the top of an eraser on a pencil as you said.

It has been there for probably 15 years or so. What would a Derm or Rheumy do about it? they haven't been able to do anything for my father. It seems the least of my problems!
posted November 23, 2007 10:16 AM
My father has psoriasis pretty bad....and it upsets me he has to go through that.

Come to think of it, mine is small as well like the top of an eraser on a pencil as you said.

It has been there for probably 15 years or so. What would a Derm or Rheumy do about it? they haven't been able to do anything for my father. It seems the least of my problems!

As a side note I see people mentioning kidney stones. these tend to be caused by excess protein in the diet, expecially animal protein.
richedie- I am sorry that your dad has psoriasis pretty bad. What a Derm or good Rheumy would be able to do is tell you if it is FOR SURE psoriasis (which most likely it is with your dad having it also), and therefore they would be able to tell if you have PsA or AS. As I said, both have similar symptoms, especially if you have PsA and Spondylitis too so it can be hard to tell for sure. BUT, having psoriasis, to any degree, usually means that it's most likely PsA instead of AS. It's just good to get a proper diagnosis, however treatment for both can be similar. In time your Rheumy would most likely be able to figure out if it is PsA or AS from X-rays and exams. That would be the only reason to see a Dermatologist.
As for your dad, I understand that the TNF med. Enbrel is really helpful for most people in clearning up their psoriasis, whether they have a mild form or more severe case of it. So, maybe that's something your dad could look into? A lot of people with PsA are on Enbrel (or Humira) and many people on it who have PsA not only see an improvement in the amount of pain and fatique they have, but their psoriasis clears up. There are not TV commercials for Enbrel stating it's ability to clear up psoriasis, so that might help him? What have you been diagnosed with?

Well, here goes mine: Diagnoised back in 1983 as ankylosing spondinitis. In 2005 added Psoratic Arthritis.
1) Neck is full fusion
2) Iritis in both eyes
3) Limited in ROM in both arms, shoulders
4) Swelling in arms, wrists, hands, and fingers
5) Rheumotoid arthritis as well
6) Both hips in pain
7) Pain in knees (Trick knees)
8) Leg cramps
9) Deep pain in right leg,above the ankle, below the knee. (I always thought it was bone pain. Now I know for sure from reading some of your posts.)
10) Ankle pain, swollen
11) Swollen feet
12) Bunyan toes
13) All toes curl to left for left foot, right for right foot
14) Bone trying to protrude out from underneath, have calouses on bottom of foot and side of foot.
16) Sleepless in MN
17)I am now having swallowing problems...Primary doc thinks its due to my neck infusion in connection with AS. (I tend to agree with him.)
18) Some fusion in spinal column.
19) Sometimes shortness of breathing.
20) Most recently and disturbing...very sharp pain in chest. Hmmm..
Originally posted by norskegirl74:
richedie- I am sorry that your dad has psoriasis pretty bad. What a Derm or good Rheumy would be able to do is tell you if it is FOR SURE psoriasis (which most likely it is with your dad having it also), and therefore they would be able to tell if you have PsA or AS. As I said, both have similar symptoms, especially if you have PsA and Spondylitis too so it can be hard to tell for sure. BUT, having psoriasis, to any degree, usually means that it's most likely PsA instead of AS. It's just good to get a proper diagnosis, however treatment for both can be similar. In time your Rheumy would most likely be able to figure out if it is PsA or AS from X-rays and exams. That would be the only reason to see a Dermatologist.
As for your dad, I understand that the TNF med. Enbrel is really helpful for most people in clearning up their psoriasis, whether they have a mild form or more severe case of it. So, maybe that's something your dad could look into? A lot of people with PsA are on Enbrel (or Humira) and many people on it who have PsA not only see an improvement in the amount of pain and fatique they have, but their psoriasis clears up. There are not TV commercials for Enbrel stating it's ability to clear up psoriasis, so that might help him? What have you been diagnosed with?

Interesting, no disticnt tests have diagnosed me with anything but they are pretty surte it is AS. I tested positive fore B-27 about 15 years ago but inconclusive ever since - most likely a poor lab. My back MRI and XRay look normal althouhg I have some bulging disks and narrowing.

Maybe I do have PsA and not AS? I have had odd back pain from time to time but nothing out of the ordinary. Then, about a month ago I started having pins and needles in my feet and lower leg...which lead to pain in the ball of the right foot and numb toes when walking. Then in my hand sin my sleep....most of that has stopped. This also included nausea and even numbness on my head and parts of the face.
I was tested for MS but cleared.

I still have the off and on eye problems as well which are annoying. I would also wake up with pains in on knee, sometimes the hands. Most all these symptoms have stopped....with the exception of some icy pain in the feet, if that makes sense. At least now I walk without a limp.

I only have the one spot on my head and maybe that is psoriasis. Can I just have my Rheumy make the determination?

Celiac disease came up again as has Peripheral Neuropathy.
richedie- I am not sure. I know my Rheumy was able to tell it was psoriasis when she did an exam and I would think most could, but I am not sure. I also believe, as flip who posted above, you can have several auto immune diseases, so you could have AS and PsA both. You have similar symptoms to me, and I also have spinal inflammation and pain (spondylitis). I have the pins and needles feeling in my feet as well, and sharp pains in my chest and my shoulder, sometimes my hands. This is on top of inflammation and pain. I really don't know though. You can talk to your Rheumy about your patch spot and see what he/she says.

Originally posted by norskegirl74:
richedie- I am not sure. I know my Rheumy was able to tell it was psoriasis when she did an exam and I would think most could, but I am not sure. I also believe, as flip who posted above, you can have several auto immune diseases, so you could have AS and PsA both. You have similar symptoms to me, and I also have spinal inflammation and pain (spondylitis). I have the pins and needles feeling in my feet as well, and sharp pains in my chest and my shoulder, sometimes my hands. This is on top of inflammation and pain. I really don't know though. You can talk to your Rheumy about your patch spot and see what he/she says.

Thanks, have you tried various diets? I talked to an immunologist who told me most immune diseases can be very well controlled with the right diet if you can determine the food causing the flare ups. I am trying the McDougall diet right now because I do not know what I have. It is generally vegan but I am eliminating gluten and soy after a week. If that doesn't work, I'll eliminate citrus and corn. I am going by which foods are most often listed as causing an allergic reaction or auto-immune reaction. After that, I'll try the nightshade veggies like tomatoes and potatoes
. If non of this works...I'll assume it is AS and will do the no-starch. It is never ending.
My symptoms and other thoughts:

* Teenager: bilateral knee and right shoulder pain

* Age 24: bilateral hip pain began (worse on right side). Have had three reconstructive hip surgeries to try to relieve the pain.

* Age 29: I received an injection in my shoulder to try to help the pain but, oopsies, they hit my lung and it collapsed. Spent three days hospitalized with a chest tube -- worst pain I have ever experienced. I was determined something good would come of all of this and decided I needed to get out there and become a hospital volunteer when I was better.

* Age 30: low back pain plus foot pain/heaviness in mornings that wears off after I'm up and moving around. Severe SI joint pain, particularly on right side.

* Age 30: recurrent short-lived, acute iritis first appears, continues to occur about twice a year

* Age 30: become a hospital volunteer so I can help others who aren't feeling well.

* Age 34 (this year): right ankle pain, abnormalities of SI joint appear, test positive for HLA-B27

* My 16-year-old niece (brother's daughter) was diagnosed one year ago with AS by a different doctor with similar symptoms of recurrent iritis and joint pain.

* I was diagnosed with AS three days ago on December 4, 2007, and am relieved to have a name for it all. I just started taking Sulfasalazine.

* There was a time I felt depressed by all of this, and I relied on the strength of the Lord to pull me through. I am grateful for all that I have been through as it has made me who I am today. I feel for all of you who have these diseases. God bless.
Man, I'm a glad a read this post. I have had severe hip and knee pain for 20 years, but starting last March things went crazy. I was medically discharged from the Army in 1987 and have been recieving medical treatment from the VA since. I went in for my check-up and found that my SED rate was very high and that I was severely anemic. Spent all summer being tested for what seemed like everything. My primary care physician finally sent me to a Rhuemy and he took one look at my ex-rays and told me thought I has AS. He did more blood test and told me I was HLA B27 positive in October. I've been on Sulfasalazine and Sulindac since August. I have to go see my Rhuemy in a couple of weeks and he will probably put me on injections. As far as my symptoms here goes:
Severve pain in hips
Knee pain
Shoulder pain
Heart racing
Really Bad FATIUGE
Rib pain

Glad I found this site, its nice to see I'm not alone in how I'm feeling.
In the beginning, apx age 10.
Sorry about the error- through about 39
-along with stiffness day/night,
-excruciating muscle spasms at night.
-fevers/all over joint achiness
-stiffness in the pelvis/lower spine
-heel spur developed
-unexplained achilles affliction (2 months)
-stabbing pains in lower back muscles
- day and night
-SI joint pain
-Sciatic pain
-stiff necks
-pain in the spine after sneezing/being bumped
-heavy/painful periods
-bone tenderness, especially lower spine/tail bone
-Now, at 47 - under treatment apx 1 year with fusion in my neck, a cute litte prong growing out of my pelvis
-neck stiffness & daily potential for mild to severe pain with jerking/jarring actions.
-occasional sharp pain in hip and SI joints, from mild to strong depending on the day (I can't run now)
-occasional stabbing pain lower back
-general muscle stiffness in back/neck
-occasional tender bones.
-pain also in big toe joint/ inner three fingers each hand
-tingling/nerve issues arms/hands
-itching of skin on forearms, near elbow
-irritability, some depression symptoms at times
I honestly didn't realize that there are so many other people out there with the same things going wrong with them as it is with me.
I'm not going to copy what you have all put down but I have got close to all of them but not everyone of them.
I live in pain all day long and have grown to accept it though I hate it but what else can we do.
I have been waiting for the lipping in my back to happen as I need it to fuse my back as the three fusions Ihave had need the help of the body to fuse it stronger.
Yes its seems a little strange but if this is going to work better than the fusion bring it on.
I'm glad I have actually found a place where I know that I can express myslef and people here will know hat I'm on about.
I will get onto this site more next year. So you each and everyone of you have a very Merry Christmas and a Great New Year.
ps. In my next post I will put down what I have.
Well I thought that I would put a few things that I have each and everyday to contend with.
Constant Back pain (entire)
Morning Stiffness
Foot Numbness
Constant Stomach Pains
Sleeping badly (every night)
Restlesss legs
Memory lose
Sudden onset of Pain between Shoulder Blades
Pains in shoulders
Pains in knee's
Pains in feet
Pains in ankles
Pains in hands and fingers
All the pains in are constantly there.
I have had 2 operations on my knees one operation on each shoulder and three operations on my lower back. And these are not all of what is going on I have a few more but then this would get too long winded.
SI Pain (right more than left)
Sciatica (right more than left)
Hip Bursitis (right more than left)
Knee Tendonitis (right more than left)
Ulnar nerve damage (right arm)
Thyroiditis (medication induced)
Weight loss
Sleep deprived due to pain and stiffness
Sweet's Syndrome
Kidney Stones
Teeth problems (calcified roots)
Odd radiating T-Spine pain
Nerve damage to right leg (right more than left)
Low grade fevers
Constipation (medication induced)
Type II diabetes (medication induced)
Originally posted by norskegirl74:
richedie- I am not sure. I know my Rheumy was able to tell it was psoriasis when she did an exam and I would think most could, but I am not sure. I also believe, as flip who posted above, you can have several auto immune diseases, so you could have AS and PsA both. You have similar symptoms to me, and I also have spinal inflammation and pain (spondylitis). I have the pins and needles feeling in my feet as well, and sharp pains in my chest and my shoulder, sometimes my hands. This is on top of inflammation and pain. I really don't know though. You can talk to your Rheumy about your patch spot and see what he/she says.

Well, I can't wait another second, I am seeing my Rheumy this Wednesday at 10:00am. I haven't been crazy about him but maybe I'll feel different after this appointment. I also am setting an appointment with two recommended Rheumatologists from Pennsylvania Hospital, one in January and one in March. I also made an appointment with a recommended Neurologist.

My primary doc confirmed that it is psoriasis on my scalp and also alittle bits on my one leg.

My father doesn't have it as bad as I thought. His hands were getting really bad...peeling, terrible looking. He went and saw his dermetologist who noticed it to be a complication of psoriasis and gave him this cream and gloves to wear. In two weeks, it cleared up and his hands look normal!

I may also make an appointment with a Rheumatologist who is a DO, for a different perspective. This guy won top doc awards in Philly a few years now.

Finally, I found a Wellness Center nearby that looks promisiong and they are familiar with the conditions and are noted as having success.

Certain family members are annoyed that I am seeing so many doctors with so little answers and it is stressful, but I have read it can take a long time to get answers. However, I can't continue paying these co-pays forever.
Originally posted by richedie:
I am seeing my Rheumy this Wednesday at 10:00am. I haven't been crazy about him but maybe I'll feel different after this appointment. I also am setting an appointment with two recommended Rheumatologists from Pennsylvania Hospital, one in January and one in March. I also made an appointment with a recommended Neurologist...

I may also make an appointment with a Rheumatologist who is a DO, for a different perspective. This guy won top doc awards in Philly a few years now.

Certain family members are annoyed that I am seeing so many doctors with so little answers and it is stressful, but I have read it can take a long time to get answers. However, I can't continue paying these co-pays forever.
So many rheumy's!!! eek I can see switching to another rheumy if you feel the one you are seeing isn't getting anywhere with your case. Even if you have the old lab tests and imaging studies, that doesn't mean new ones won't be ordered---THAT and copays are VERY expensive even on a good insurance plan. AS is very difficult to diagnose...it can take up to ten years for anything to show up on x-rays. If it is presumed to be AS, then you are lucky. PsA can be almost identical to AS in its presentation in broad generalities although there are specifics which differ. As for the numbness and tingling---sounds like impingement on the nerves. Can be due to AS as well.

As for finding a DO rheumy, well...why not pick one to start with? Another option would be to find a physiatrist. They work with pain and many of them ARE DO's. You run the risk of being branded as a doctor shopper which could threaten your treatment in the long run. It seems reasonable to find a new doc if the one you have isn't helping you, but you are talking about trying to see FOUR rheumy's in the space of less than three months if you can manage it.

Oh well.....not trying to throw a wrench into your holidays. It'd be nice if we all had that kind of access to a doc.

I hope you have a great time with your family and friends this week.


Thanks, I understand what you are saying....I guess I just feel I want answers and get worried when I read a lot about these complications that can require immediate attention. I really wanted a new Rheumy and had it down to two......both an PENN. The one put me on a wait list and the other I could not get in to see till March. In addition, I really ewanted to see one who was a DO......so maybe I'll have to sit down and think about this and maybe cancel some appointments. Thanks.

I have an appointment with on in January because the other one at PENN is unavailable till March. Maybe I'll see this guy and then the one in March. I still wanted to see this one DO who will see me in January as well. Is it bad to get as many opnions as possible? My curret GP recommended seeing other docs and looking around.

I also looked into an alternative approach or a Wllness center. You think that a bad idea?
I was curious...you think a Physiatrist would be a great idea? I may look into that, thanks.

I think I am going to cancel my one January appointment with the one doctor at Penn and stick with the one I have in March. They both have areas of clinical interested that interest me although the one located in Philly had Fibro on her list.

However, I am going to see a Rheumatologist locally who is a DO and lists Fibro as an area of interest. So, I am going to see my regular Rheumy Wednesday of this week and my possible new Rheumy in March. The only other will be this DO in January.

I hope I am not making a mistake cancelling with the Asian doctor at Penn who had clinical areas of interest in all the ones I have mentioned in the past.

Sometimes I think it makes sense to see a lot of different Rheumatologists because they all can specialize in different areas!
I'm not saying cancel all your appointments, but you want to pick a someone or someones who can treat you the best. Too many rheumy's may complicate the whole picture and they may refuse to treat you if you see other rheumy's. Just a thought. It would be good to ask about this when you call the different offices.

I mentioned a physiatrist becuse often they ARE DO's. I saw one about three years ago and it was a big help at the time. Often, at least in my area, they see many fibro patients. Fibro can be secondary to AS. They also deal with other pain issues.

I hope you have a wonderful holiday. smile

I hope you have a great holiday as well!

So, I am seeing my regular Rheumy this Wednesday and I'll try to open his eyes to my recent symptoms.

I still have my appointment with this one from the University of Pennsylvania hospital in March and luckily her suburban office is close. I am looking forward to meeting her.

Finally, I picked on locally who received many top doc awards in Philly and is a D.O. Rheumy. These are his areas of Special Clinical Interest:
Rheumatoid Arthritis
Alternative Medicine
Chronic Pain

I think having a Rheumy MD and a Rheumy DO may be a good strategy because they specialize in different areas.

I did cancel the other two at Penn.

Speaking of symptoms, I discovered something weird. I was feeling around my right foot to find tender, painful areas. There is an unusual spot right in the center of the ball of my right foot closer to the big tow side (almost in the little divit). I can presse and rub this and it does not hurt, but it hurts if I scratch this spot. I get sharp pains if I scratch that spot but almost nothing if I just rub or press on it.
All Finger Joint Pain / sometimes immobile
Wrist(s) Pain
Elbow(s) Pain
Ankle(s) Pain
Left Heel Accute Sharp Pain in spurts
Both Knees / Severe Pain In Spurts
Hips / hinders walking ect
Lower Back / Pxtream Pain
Upper Back / Exquisit Pain
Ribs / Exquisit Pain
Breathing / Exquisit Pain
(Upper Back,Breathing & Ribs immulate a heart attack in the first part morning. for approx 2hrs)
Upper Back & Neck / Exquisit Pain
Eyes / Get Fatigued
Bodily Fatigue
Body Stiffness
Irratable Bowl Syndrome (not to often)
Headaches / Dont know due to having to live off
of Hydrocodones 24/7
Oh and my right toe will not bend properly at times(lol)

Like Fall-Of-Moonbeams posted above me. Back pains are consistant and continous. Everything else come at will and spurattic and attacks in an instant / Not gradual come-ons.
Oh sheesh i had forgotten to list a symptom , yea both knee joint problems, I forgot. Knee problems are the most annoying when pertaining to the legs, that and heel spurts. Sorry for the second thread, just couldn't leave out my two little problem causers! (lol)
For those of you with more serious symptoms, how long did it take to come on strong? Was it a period of months with mild symptoms prior to the full blown issues?
Elaine, you can see my Rhematologist follow up in the Not much back pain??? thread.
Starting in 98 i first starting having kneee problems off and on. Eventually it started moving into small joint pains. (fingers, elbows, hips, & toes) The pain was just seriously adgitating cause it would just come without warning, hurt pretty good for about 15 minutes to 1 hour then leave as soon as it came. (big deal right?) Then around 2003, thats when my back pain started, shoulders, upper back, & lower neck. Now in 2007 lets just say that when im going through my really bad spells (2weeks ata time) my wonderfull wife has to help me up out of bed,then will have to completely dress me. IM serious, from socks to undies to whatever shirt she wants to put me in.
Then she lifts me up and sits me on our porch, and then pulls out a smoke for me to have. (during these bad spells the pain is most exquisit. Pain to such an incredible degree that with every breath you try to take you can feel this pain shoot from the center of your back and straight through your heart like a heart attact. My smoking acts as a breathing phsycle theorapy until my hydrocodones kick in for myself to be able to even lift my arms and breath properly.

I dont know about others concerning time lines richedie, but for me it was gradual. I never suspected anything to be wrong except for all the body damage i have aquired. Needless to say that after many x-rays, my medic stated that my past injuries have nothing to do with all the pain i feel. Im 30 years old and to completely date back to the begining, i guess i was around 18 when my my problems started. 21 years old when i starting taking acount that there was something starting to go wrong with me. But thats ok cause my wife is my best friend, we have a baby on the way, and my hydrocodones keep me going and smiling.

Sorry for such a long reply, im just fresh from taking my meds and they really tend to make me talk on and on and on. LOL
Good Day
Originally posted by Mr. Fish:
Starting in 98 i first starting having kneee problems off and on. Eventually it started moving into small joint pains. (fingers, elbows, hips, & toes) The pain was just seriously adgitating cause it would just come without warning, hurt pretty good for about 15 minutes to 1 hour then leave as soon as it came. (big deal right?) Then around 2003, thats when my back pain started, shoulders, upper back, & lower neck. Now in 2007 lets just say that when im going through my really bad spells (2weeks ata time) my wonderfull wife has to help me up out of bed,then will have to completely dress me. IM serious, from socks to undies to whatever shirt she wants to put me in.
Then she lifts me up and sits me on our porch, and then pulls out a smoke for me to have. (during these bad spells the pain is most exquisit. Pain to such an incredible degree that with every breath you try to take you can feel this pain shoot from the center of your back and straight through your heart like a heart attact. My smoking acts as a breathing phsycle theorapy until my hydrocodones kick in for myself to be able to even lift my arms and breath properly.

I dont know about others concerning time lines richedie, but for me it was gradual. I never suspected anything to be wrong except for all the body damage i have aquired. Needless to say that after many x-rays, my medic stated that my past injuries have nothing to do with all the pain i feel. Im 30 years old and to completely date back to the begining, i guess i was around 18 when my my problems started. 21 years old when i starting taking acount that there was something starting to go wrong with me. But thats ok cause my wife is my best friend, we have a baby on the way, and my hydrocodones keep me going and smiling.

Sorry for such a long reply, im just fresh from taking my meds and they really tend to make me talk on and on and on. LOL
Good Day
Careful Mr. Fish....diet and nutrition along with any possible exercise are our best defense. Careful with the smoking. Studies have shown your body only absorbes about half the nutrients it should compared to a non-smoker. Just a thought my friend. Take care of your self and get well. smile

Where you diagnosed with AS?
Hey Richedie! Yes A.S it is!! Oh and yes i have been finding myself really starting to care about nutrition and exercise lately. Over that last 2 months i have been slowley finding myself eating healthier. I have lost nearly 15 pounds, can not stand junk foor hardly anymore, and my brother in law is a pretty heavy guy, so he and I have started running 2 times a week. Starting at a half a mile. He can not run more cause of his situation, and i can not run more because of mine and plus of my smoking problem, so were like equal! I told my brother-in-law that if i can just feel really good about myself for once i wouldn't need smoking to fill that void you know? So were working on achieving our goals. I stared exercising because in 2 months my wife and i are going to have a beautiful baby girl and I do not want to have to have my cane with me everywhere i go while trying to play with her. Im 30 and im going to live 30, not 90!!

Are you AS also? If so has it hindered or altered you life? Example, I was in the process of getting into the police force. applied and traveled throughout different stated just to take the testings. AS took my police carreer away along with any hope of re-entering the ARMY. I was going for the Gang Devision in LA, Chorpus Christi Texas, Denver CO ect ect. I love skateboarding and freestyle bikeriding. Now Im dedicating myself in the security buisness for career term and my hobbies are Gold-Fish Collecting. LOL Quite a change huh? I was just curious if you had experience such life alterations because of A.S or other hinderances.
Well i have to get back to work, though night shifts are terribly slow, they make us do alot to make up for what we dont do.. LOL

Good Day My Friend
Mr. Fish
Hi Mr. Fish, glad to see you are making positive life changes and good luck with the little bundle of joy about to entery our life. It WILL change your life and outlook, trust me. We have a 4 year old daughter.

They think I have AS and maybe Psoriatic Arthritis. I do what I can though diet and exercise. I eat exceptionally well and am trying various diets and elimination diets to look for foods that aggravate my symptoms. I also workout almost every other day and try to walk every day. I work out with weights and go pretty heavy.

Biggest problem has become my right foot, it hurts sometimes and causes me to limp but since altering my diet to en alimination diet I have stopped limping but I still get the pins and needles in the foot or feet, soreness in my right ankle. I am constantly reading and doing research as well on this stuff.

I was an avid snowboarder but haven't done any this year. I hope to get out there soon.
Hey Richedie !! Right On about your daughter!!! I can not wait to have a daddies lil girl!!! / Oh and i HATE the pins & needle feeling in foot!! I kid you not, it's like your doing ok at the mall without a thought, then ker-pow, instant shooting pain in the heel (effects my left) and then i start limping. People stare and it can be embarrasing. But its so weird cause it can last just 30seconds or 15 minutes, and as soon as it comes, it goes leaving instant reliefe. Weights, i am taking a real liking to lifting, but it can really bring the pain on, so im starting really light. Im using my wifes fitness weights, 2 lbs and her 5 lbs and focus on tendon strengthening and muscle response threngthening.
(2400hr now = Happy New Years)
Once i can prove that my healthier eating habbits are going to stick, i would like the get with you about the stuff you diet with. And because my A.S causes bad arthritis at random with all my joints, a healthier diet could be nice, especially if it helps!!! Have a good New Years my friend, and take care of that daughter of yours!!

Good Day
Thanks man,

I am glad to hear you seem so serious about the life changes like diet and exercise. Weird thing with me is they do not know what it is for sure...could be AS, could be PsA, not sure. Weird thing is my back is pretty darn good....mostly my feet. Walking for more than 45 minutes causes pins and needles in my right foot and some aches. The middle of my back has some aches but not bad. Weird.

I am an exercie and nutrition junky, I was a trainer in the late 90s and was studying to be a nutritionist but ended up in computers. Oh well......I try to take the best care of myself I possibly can....
LOL Right on, seems funny how we end up in different career paths then what we intended! I went from nearly getting into a police department, at the same time talking to an ARMY recruiter in concernes of getting back in, down to a career in security and collecting goldfish. LOL / Its like GEE Thank You A.S ! LOL) but it is what it is. Oh and sorry that your medic's do not know exactly what your suffering from, but hopefully they will know soon. And yes its weird.
Well I need to check other forums really quick, then get back to work. They are having me investigate a theft intention. The kind where the object(s) were taken, then replaced after the missing object(s) were reported missing. The funny and bad thing is that it's a 72yr old individual, and this individual was blaming the 33 yr old individual for the crime. LOL WOW, then on top of that the elder had fabricated this whole entire story that completely contradicts everything else. Sheesh !! what fun right? Well ahve a good day...
Hi, I'm new to this site and newly diagnosed with A.S.

I've had symptoms for over 10 years, and finally at the age of 25 have a diagnosis. Ironically, I'm a health care professional myself, and have wondered for some time if A.S. could be the cause of my symptoms. Most of the doctors that I've seen have been pretty ignorant of the symptoms and are pretty resistant to having a suggestion of a diagnosis brought up to them from a patient.

My symptoms include daily headaches, neck, back and S.I. joint pain and stiffness. More recent symptoms have been sternal, rib and chest pain. Unfortunately because of the rib problems, I've also developed Thoracic Outlet Syndrome, so I'm having trouble with nerve pain and circulation to my arms.

The pain has been pretty bad and is getting worse but the worst thing is the extreme fatigue! For so long, I've wondered if the exhaustion was all in my head. (It seems out of proprotion for a young and otherwise healthy person). Does anyone find that fatigue is a huge part of this disease? And what do you do to combat it? I feel that I'm performing poorly at my job and because of the 'brain-fog' am limited socially, intellectually & mentally. For many years I've relied on coffee and it's helped me out a bit (definitly not fully cutting through the brain fog...). My rheumatologist has told me to quit all caffeine, and I'm having a pretty rough time with it.

The meds I'm on are: sulphasalazine, diclofenac and amitriptyline. I still have an incredible amount of pain. Any ideas of other drugs that would work better? I've heard a bit about TNF Inhibitors but don't really know too much about them. Are these meds commonly prescribed? Are the long term effects of these meds known?

I have a positive HLA B 27, but was diagnosed mainly based on symptoms. My rheumatologist said that testing for HLA is expensive and unnecessary (??) and was pretty mad that my G.P. even ordered it. The only other tests I've had have been x-rays which have been mostly negative (I've been told at least 30% joint change has to be present for it to show up on x-ray). Would other tests be useful? Like CT or MRI?

Sorry for all of the questions, but I'm a newbie to all of this so any suggestions are greatly appreciated! Thank you smile

well my symptoms are as follows:
1)low back pain
2)pelvis pain
3)hip pain
6)shoulder pain
7)neck pain
8)pain in my buttocks radiating down my legs
9)elbow pain
10)just plain stiffness all over
11)can't sleep on my stomach cuz I get shooting pain in my back,I have to sleep with my leg up(I look like a lawn jockey)
And to top it all off I have other aches and pains but don't know if it is related to AS
I'm slowly learning as much as I can about this and not from my doc
oh and I almost forgot about the weakness in my legs how dumb of me
I've just been on facebook and joined an AS group on there. Looking at the members I'm gobsmacked at how young they are, arthritis knows no age I guess. I'm 26 and just piecing together all of the symptoms I've had/accumulated over the past 12 years. I'm learning from your threads (TY) that a lot of my suffering, no matter how removed from 'joint pain' is to do with AS. It's so nice to put it all together, and also to know how much support there is from people suffering as young (if not younger) than I am.

What about skin irritations, has anyone had Urticaria (hives) or is this just me and completely unrelated smile
Time for me to list my symptoms; sorry my first post didn't really belong in this thread.

*Neck pain
*Daily headaches
*Thoracic spine pain
*Rib & sternal pain
*SI joint pain
*occasional involvement of other joints: wrists,elbows, shoulders, hips, knees, ankles/feet
*ocassional flare ups of plantar fasciitis
*Thoracic outlet syndrome with nerve and circulation involvement
*Myofascial pain syndrome
*Reynaud's disease
*clicking, popping, cracking...!
*brain-fog/lack of mental clarity
*?? hypermobility syndrome (not dx'd...)

tulipz smile
symptoms ok
-pain between shoulder blades
- left shoulder dull pain and bone sore when pushed
- lower back pain virtually all the time well cant stay standing or sitted for longer than 10 mins without changing positions (squirming around if sitting )
- pain in right buttock
- dull pain in right side of pelvis or top of right femur that area
- throat and chest feel hot at times
- feel dizzy when walking around like i have to concentrate not to pass out
- ribs at the back are sore to the touch
- left leg from hip to knee goes numb and gets pins and needles almost as soon as i lie on my back
- stiff neck
- feel like i want to slouch all the time and when i straighten can here my spine clicking
- pain in middle of back just right of the spine after sitting for say 20mins have to squirm to relieve
- fatigue
- pressure in head
- tingling at very top of spine just below skull
-either shortness of breath or feel like im short of breath,hard to explain
- pain in upper back right side about halfway between spine and side of body if i press on a spot on a rib get radiating pain throughout my rib bones shoulders, arm , neck but have had no injury to that part of body well no blunt force injury excuse my lack of better terms.
- heart feels like its racing when i lie on my back
- trouble sleeping
- in 2000 was found to have osteophyte in spinal canal in area just above pelvis , sorry forget the number
- described as mild scoliosis about 5 yrs ago
- fear of going places and meeting people even a doctor has prevented me from seeing one for a long time - well seeing one for above mentioned problems , have seen one about a year ago in regards to anxiety attacks etc .
- confusion
- theres a few others some which i cant recall im sure they will show up in time again
sorry for going on and thank you
I'm a newbie here not diagnosed yet but here are my symptoms.

Lower back pain constantly not severe just nagging
Lots of tendon pain (shoulders, elbows , hands)
Chest pain
Hips can be very painful (makes me kind of walk funny) LOL
inflamed throat constanstly which can be sore at times.. doc said maybe body's response to autoimmune disease.
Pain in thighs
Tailbone pain 1st symptom
Blurry vision from time to time
Wrist pain causing finger pain

Thats all I can think of at the moment.
Hopefully no more will come ha ha
Thanx x
Neck stiffness / Pain
Hip Pain
Heel Pain
Rib cage pain
Extreme Fatigue
Lower Back Pain
Pain just below Shoulder Blade
The need to curl up in fetal postion at night for relief
Eye Redness
Sudden feeling of illness for a couple hours
Feeling like I have a 40 pound weight on me and it's 3 in the morning
Difficulty breathing somtimes
I forgot some of my symptoms so I'm reposting:

Iritis (3 times)
Severe case of Shingles on my chest and back
Neck stiffness / Pain
Hip Pain
Heel Pain
Rib cage pain
Extreme Fatigue
Lower Back Pain
Pain just below Shoulder Blade
The need to curl up in fetal postion at night for relief
Eye Redness
Sudden feeling of illness for a couple hours
Feeling like I have a 40 pound weight on me and it's 3 in the morning
Restless Legs
Originally posted by Threemules:
What about skin irritations, has anyone had Urticaria (hives) or is this just me and completely unrelated smile
I'm not sure if it's related but yes I get hives almost everyday.
1. Numbness periodically in face, arm, fingers and a couple of toes.
2. Swelling around lymph glands in neck and breasts.
3. Joint pain with bursitis, tendenitis in shoulders, elbows, knees, hips, ankles.
4. Periods of severe muscle weakness and fatigue, the worst lasted six months.
5. Severe pain in hips and feet that prevents me from completing tasks, must sit down.
6. Body becomes painfully stiff, which stretching helps to releive.
7. At its worst, my whole body hurts, feels inflamed and hot and I will get a fever.
8. Dizziness, not sure if this is connected.
9. On occassion a painful sensation throughout body. Feels like the vibrating pain throughout your nerves you might feel if you slammed your hand down hard on a table.
10. Sharp pains in pelvis.
I have been getting signs of hives. I get itchy skin in different part of my body were I scratch like crazy then it welts up in that area. It could also be the new medication I am on causing this or maybe it's aggravating something already there.

Undiagnosed but signs of Psoriatic Arthritis and HLA B-27 and tendinitis and CIDP and shoulders and back problems and leg problems
Getting over (past 3 weeks)
-bilateral pain in SI joint
-pain in buttocks, low back
-difficulty walking at times


-rib and pain in right side
Hello I am new to the sight and I am hoping that this in going to end soon I have doctored for approx 9 yrs and every year I added a new symptom I was always told how do you want to feel you have four children but I would cry and say It's not normal to feel like you have the flu 24 hours a day and be so tired and ache all the time so hopefully I will go to my last of doctors on Monday and I can start treatment.

My Symptoms are
Neck Pain,
Joint Pain
muscle weakness
spine pain
my eyes hurt and are severly sensitive to light
brain fog
memory loss
fatigue all the time
rib pain very bad
chest pain
when I breathe heavy I cough
lower back pain all the time
bowel problems
when I rub my legs or arms its very tender
when I go dancing or so alot of activity I am down for days

I have been tested for Lupus and it was neg, and I was also tested for RA and it was neg. I am losing my everloving mind I hope to God I get and answer this week for my children's sake and my husband, I am no good to anyone right now.

Hello Everyone I don't know how to use this forum and how to see my replies or if someone answered me on my Quick Reply. Sorry for sounding stupid

My situation sounds simular to yours. Since I am 37 and a mom of 3 I wasn't sure if I was just getting older and pushing myself too much. I think this disease just comes on so slowly its hard to see it. For years my symptoms were periods of severe fatigue, muscle weakness and swelling in my neck around the lymph node. Now that my symptoms are more specific (hip pain ect.) I know its not normal. I still don't have a definite diagnosis because my scans did not show any signs. However the doctor feels it is a posibility and after doing my own research, I agree. For along time I have known something is wrong and it is so frustrating when I am sick and my husband askes whats wrong, I have to say it's "that thing again" because I don't have a name for it. Let us know how your doctors appointment turns out.
I also have mouth sores,planter fascitis and tendon problems.Trouble sleeping not only do to pain but just can't get comfortable.
Hello Jill

I am so happy to find someone that understands I am not happy that you are in pain and don't have a real diagnosis, anyway I will defenitly keep you informed of everything I find out this week I have a doc appt and exrays ultasounds and cat scan this week mon tues and wens. So in the mean time my prays are with you and your family. my post name now is August 1967 I was not happy when I first posted that it gave my first and last name I wouldn't care about my first name but not my last. Take I will be in touch. Alissa
Hello Britefutr,

I have every symptom that you have what do you think they might be if not related to AS I have been tested for Lupus and RA and Autoimmune Dissorders and all of my blood work came back normal which is when I started thinking well you are just a crazy person with alot of pain you shouldn't feel. So did you ever ask your doc if not related to AS what it could be? Thanks hang in there and let me know if there is anything that your doc says.
Does anyone know if your ANA was tested and it was neg could you still have Lupus. I went to a doc today and I thought I was tested for lupus and RA but he told me he never tested me for RA but my ANA was negative and he said are you still having all of these problems so I said yes and I added more so he is going to check me for the gene of AS and he is also checking for RA Lupus and everything else they took 8 viles of blood so I guess I will just wait and see what is next he wants me to see this one rheum doc but they can't see me until May 29,2008 so I am tying to find another one I will be in the psych ward by may I thought I was tested for RA and I think i am depressed that I thought for one yr that i was clear of that but I don't understand these docs sometimes I really think they are overloaded and another thing he said is he wants me to see a neouro I didn't call i am done with all this today I can't think anymore.
Hello It's me again I have a question were you ever tested for Lupus and if so what test did they run I am really frustrated right now but I guess everything is a waiting game. I hope you are having a good day. Talk to you soon
hello Alissa, welcome to the site. I love your name, my daughter is named Elissa.

As far as Lupus, it is very hard to diagnose. The blood test are not black and white, they just provide indicators to help with a diagnosis. It can take quite a long medical history to diagnose Lupus. I was never tested for lupus because by the time I got to a Rheumy I was pretty obvious AS.

Your symptoms sure sound like AS to me. I think you should see a rheumatologist. Most women take about 9 years to get their AS diagnosis. We all go through the same crap that you went through.

Let them test for RA, that's pretty easy, you either have RF factor in your blood or you don't. Your sympoms don't sound like RA, so that could by why they did not test for it. RA usually hits peripheral joints first...hands, feet, knees. RA is also more obvious, the joints look swollen, red and warm to the touch.

AS is again a little more difficult to diagnose, there are blood tests that help, but your history and pathology of symptoms is much more important. AS hits the spine, hips, shoulders first. Also the joints look normal because the AS is not attacking the joint capsule like RA does. AS is attacking the enthesis, which is the point there the tendons and ligaments attach to bone. Which is in the area of a joint of course, so it feels like joint pain.

One tip on this board - I would post specific questions as a new string on the General message board. Alot of people don't come back to this string very often.

Hope this helps

Hello Thanks ( about the Name) your daughters name is pretty also and thanks for the tip. I am so scared of Lupus and the organ thing although I know any type of this disease could affect organs maybe it's just because I have a girlfriend who has had it for a long time and a cousin that just died from it at age 56 that is way to young anyway I will have what I have and deal with it the best I can. I had a bowel obstruction 3yrs ago and before that had alot of bowel trouble and still do so I am just scared that I may have Lupus and it has already effected that organ. I just have to wait to see my rheumy in March and go from there. Thank you for everything and I wish you a good night. Alissa Ps. the reason for the smile face is because no matter how bad you feel good people always put a smile on your face and I have met good people on this sight.
Diagnosed with AS 4 months ago.
Neck and shoulder stiffness.
Cant sit or lay on floor for any length of time without getting help up.
I probably have had the disease for years but was misdiagnosed.Doctors told me that I had a sacorilliac sprain when I was in my teens.I have tried 4 different NSAIDS but cant seem to find one that takes the imflamation down. I am in Canada so I dont know if the same drugs are available as they are in the USA. Help!
I DMAC. I think you have most if not all of our drugs. Probably cheaper than we have them! Mine started in the SI also, and I was also misdiagnosed for the first 7 years. Hang in there. There are some good therapies and meds these days. Post on the general message board. I think we have some other folks from canada that can probably give you a bettr answer on the drug questions. Talk to you soon!
Update to my symptoms list since last July, 2007: Skip to the bottom, in bold.

"I have been just checking in and reading, not posting much due to much pain in many areas and thus difficulty sitting/typing/reading/the full list, just like the rest of you... So just catching up on the symptoms list. My best answer is probably simply: YES, YES, YES, YES, YES, & YES

But here goes, to the best of my memory, which is not very good right now due to the stupid brain fog and now fibro fog, and probably some medication issues...

~Childhood onset
~So-called "growing pains"
~Acute inflammatory arthritis
~AS with SI joints and multiple other joint involvement
~HLA-b27 positive
~Sciatic nerve
~Muscle spasms throughout the body
~Muscle cramps throughout the body
~Chronic and acute sinus infections
~Metabolic Syndrome (Diabetes, High BP, Obesity)
~Poly Cystic Ovarian Syndrome (caused diabetes and the obesity)
~Irritable Bowel Syndrome with alternating diarrhea and constipation
~Nausea/vomiting when the pain is high
~Dizziness/Vertigo (separate from the Meniere's)
~Meniere's Disease
~Positional Vertigo
~Plantar fasciitis
~Degenerative Osteoarthritis
~Lumbar Spondylosis
~Cervical Spondylosis
~Hair loss (chunks/hand fulls)
~Thyroid disorder
~Another hormonal imbalance (gynecological)
~Dry eyes/morning mucus or sand in the eyes
~Blurry vision
~Cluster Headaches (have snapped off two teeth during these while clenching my jaw)
~Difficulty sleeping due to extreme pain
~Waking up in pain throughout the night
~Bladder and bowel control problems (also retention problems)
~Dry skin
~Constant itching sensation
~Brown patches developing on skin due to PCOS, and also from the rashes
~Raynaud's Phenomenon
~Sausage fingers and toes
~Swelling in hands, face, toes, feet, legs at strange times - no correlation to being on my feet for example
~Fever (nearly constant for over 30 years)
~Elevated CPR and SED rate
~Extreme fatigue
~Tendency to drop into low blood sugar easily
~Hypersensitivity reaction to cigarette/cigar smoke
(will now wind up with an infection, and maybe even in the hospital)
~Limited range of motion due to the fibromyalgia and the AS
~History of urinary tract infections
~Kidney function is now becoming impaired, and the nephrologist says kidney disease is beginning to set in
~Pain in every muscle, tendon, ligament, joint, area of the body... if I own it, it hurts in some way and in some form
~Swollen and deformed joints (also red, hot and sweaty to the touch)
~Night sweats
~Inability to do anything for any length of time, such as stand, walk, sit, lay down, recline
~Having a much harder time concentrating on any mental tasks, even those that I usually find pleasurable such as reading
~Numbness, tingling and/or pins & needles sensations running from my neck through my shoulders down my arms to my fingers and from my back through my buttocks down my legs to my toes
~ An arm or a leg suddenly goes completely limp, numb and useless - just dead weight: when I am standing or walking this has actually caused me to fall down twice when my leg went dead on me and I had nothing to grab
~Severe mouth sores
~Constantly peeling/splitting/cracked finger and toe nails
~Highly sensitive to senses: so smells, lights, textures/touch, sounds, tastes may bother me that do not bother others

I have more stupid symptoms, but I have had to stop multiple times to accomplish this much. I know I kept saying "Yes!" as I was reading the other entries. I wish nobody had any of these, and I really wish no one else would ever again be stricken with AS or any other autoimmune disease/disorder."

[b] New since July 2007:
~Chronic Myofascial Pain
~Restricted chest expansion
~Chronic bronchitis
~Restricted lung disease/chronic cough/AS lung complications
~Possible heart complications from AS
~Other "itis's" due to enthesitis
~Osteophytes throughout my body
~Hypertrophic changes to my spine (throughout)
~Right OS acromiale
~Mild CNS sleep apnea
~Bleeding ulcer due to diclofenac (no H. Pylori bacteria)
Hopefully gone now - endoscopy on 3/25 to check
~Umbilical and inguinal hernias
~Diabetes has become insulin dependent due to high AS-caused
fevers and anemia, as blood sugar began sky-rocketing
~Severe vitamin D depletion
~Low potassium
~Depression issues setting in

And I'm probably forgetting some things...[/b]

I haven't been officially diagnosed yet, but here are my symptoms. Do they sound like AS to anyone else? Chronic pain in my 'sit-bones'; lower back pain; limited range of motion in the neck; knee & ankle pain; inability to fall asleep due to pain (if I get to sleep it is never a deep sleep and I'm now having to take a sleeping pill every night to make sure I stay in a deep sleep); migraines; TMJ; and many more...
Welcome, Lola!
Although I am sorry to read of your symptoms, you will find many, many caring people here. I wish I had found these boards sooner! Your symptoms sound like many of ours, within the range of the spondy diseases... but I certainly am not a doctor.

You might try posting questions you have on the General Message Board, or trying the search function for some of the many threads already posted that have many great discussions on symptoms, medications, diseases, etc.

I hope you receive the correct diagnosis and the proper care soon! Not knowing can be so frustrating, and can bring a person even lower. Hang in there, and know that you have found a community of people who will support you here.
Hi all,
New here. Was diagnosed with undifferented spondyloarthropathy in 2001.
Symptoms started after my second pregnancy with:

Severe cervical neck pain now more dull pain with decreased ROM and tons of grinding.

Significant Jaw arthritis ? from TMJ surgery 1998 ? related.

Pain in hands and feet joints

planter fasciitis and similar pain in palms of my hands.

Significant morning stiffness (well not just morning anymore)

Have ? related GI disturbances along with an autoimmune rash called pemphigoid gestationis which ofcourse did not go away after pregnancy but thankfully it is only mild.

In the last year I have had progression to include thoracic and lumbar spine along with right hip pain and bilateral shoulder pain.

Oh did I mention the overwhelming fatigue

Forgetfulness, brain fog

tinnitis (ears ring)


Chronic dry eyes

Chronic sinusitis

Sleep distrubances

Definatly increase in pain with changes in weather.

Suffer from basilar migranes and as a note have had hyperreflexia of all joints as a child. (Not sure of any relations there).

Well glad to see that I am not alone. Worse then the pain for me is the fatigue which I don't think my family truly understands.

Hi guys,
I'm new to this site which I searched for after my recent diagnosis of SA. I am a 32 yr old man, been in pain for over 10 yrs and spent thousands of dollars and hours at various doctors searching for the source of my pain. I was originally diagnosed with Fibromyalgia but recently discovered it was a secondary diagnosis of AS. I have been in pain for a long time but in the past 2 yrs there was a drastic increase in pain and decrease in mobility. I get more depressed at night and am afraid to go to bed because I know what I will have to go through to get up in the morning. My list:

1) Neck stiffness, decreased range of motion, sometimes difficult to hold my head up
2) Knee PAIN! Had various test and recently completed a series of 5 synvisc injections in each knee (worked very well)
3) Muscle pain everywhere. Sometimes the knots will get big enough to see through the skin.
4) Foot pain. Sometimes hurts to walk; sometimes have to sleep with shoes on
5) Hands in pain, numbness. I often wake up and cannot feel my hands or arms. Sometimes they get so cold I have to run them under hot water throughout the day.
6) Rib pain; taking deep breath throughout the day to feel like I get enough air
7) Back pain, lower back sore to touch, upper back stiffness and varying degrees of pain.

Flexiril (when muscle pain is too much)

So, is this normal or am I a complete whacko?
I forgot to add:
8) Endless sinus infections and allergy issues. I take Singulair, Xyzal every day, allergy shots every week; constant visits to ENT to receive steroid tapers to decrease sinus infection
9) Headaches...Usually always when I wake up. I put a small dish of medications by my bed so I can wake up at 5am to take them so I can them pull myself out of bed at 7am.
10) Sleeplessness...take ambien everynight or I just doze all night

I also agree with some of the postings I read about forgetfullness. I've always been a sharp guy, well-read, and witty. I feel that this has decreased as well.
Stiffness and low grade pain in neck, mid-back (between shoulderblades) and low back.
Pain in hips with burning pain radiating into groin area.
Achilies tenonitis, intensity of heel pain comes and goes, but almost always present
Irritiation, redness and dryness in eyes
Gastritis - drs can't find a reason for it
Pain in knees and elbows
I'm new to this board and just wanted to express my appreciation for everyone's participation. The last such forum I participated in was while going through Prostate Cancer (5+ year survivor) and it really helps to have the ear of someone who truly understands.
My first recognizible symptom began with a pinching pain between my shoulders that just wouldn't go away. I went to a chiropractor and achieved some relief but then developed pain in my sterum and ribs with every deep breath or when I lay down. Almost hated to go to bed because of the pain. When I couldn't take it any longer and due to swollen knee, went to the doctor and my ANA was throught the roof. First specialist diagnosed as Reactive Arthritis. Started developing sever pain in left shoulder which he diagnosed as locked shoulder. Following his recommended exercises, I ended up with a torn rotator cuff and detached bicep. Changed doctors!! Now may be facing surgery to correct. New doctor quickly diagnosed symptoms as Undifferentiated Spondyloarthropathy and changed meds. Pain between the should blades and sternum are almost constant with varying degrees of pain. Currenly have pain in left hip that radiates down the leg. Most other joints have ached from time to time. I have lost a lot of strength and stamina. I was running 5 K's a little over a year ago and now I can't run 5 yards. Sleep is constantly interrupted unless I take flexeril which leave me in a fog the next morning. My memory and quick wit have slowed also.
Having reviewed many of the other symptoms listed, it appears that I may have had USpA for a while but only became apparent about a year ago and diagnosed within the last month.
Severe neck stiffness
spine feels like shards of glass under skin especially when touched
back muscles extremely stiff/limited motion
entire torso rigid
feels like arthritis in entire body
burning/sharp tingling pretty much all over
lower back feels frozen in place- no mobility
knees feel like 100 yrs old (only 27)
basically feels like rigor mortis set in except i'm alive
Sternum pain
Rib pain
Neck pain
Ankle pain
Groin pain
Vaginal pain-pubic
Hip pain
Foot pain
Loss of Motion
Knee pain- All Joints
Back pain
P.S. More left sided than right. But I dream that Im a dancer!!! ; )
I have a daughter who is 16 recently diagnosed last August with AS she is in constant pain nothing seems to help she is even on Enebrel. She walked 2-3 miles on Monday around town..then walked around at our local mall the next day she was in so much pain she could hardly move. I called her doctor they prescribed a pain med which made her heart race so I took her off of it. She sees these forums where people say exercising helps and she is frustrated because just ordinary walking hurts her all over. She has 3 flights of stairs she goes up several times a day at school then she takes a bus home then walks from the bus stop to home 1/2 mile...she is so tired daily she takes naps before homework. I don't want her necessarily medicated but if we could get her to be 1/2 way pain free so she could do normal stuff that would be a blessing.
I was diagnosed with AS March 2008. I experienced a range of the following symptoms over a period of 7 years:

Joint stiffness/Pain: Toes,ankles,knees,hips,fingers,shoulders,wrists, elbows
Shoulder Blade pain(Upper Back)
Lower Back Pain
Pain and burning around rib cage/Chest Pain (hospitalized for chest pain that I later learned was related to AS)
Chronic Neck Stiffness (Pain)
Pain down back of legs (calves,hamstrings)
Pain in back of heels
Jaw Pain
Ringing in Ears
Chronic Fatigue
Overall it feels like I've been run over by a a truck on most days- Lots of pain/Stiffness in joints the pain does not go away it may not be as intense from day to day but it is always present

I am thankful that I was finally diagnosed by a doc who really listened to my symptoms and did the right assessments to pinpoint AS.
1. Lower back pain
2. Hip pain-- by the end of the day my hips are sore to touch. The muscles surrounding them-- and into the buttock feel like theyre on fire. Hips pop in and out when I walk fairly frequently
3. Joint pain in my hands. My fingers are already deformed from arthritis.. I'm only 20.
4. Wrist pain, worse in my left wrist I think because I fractured it when I was 15.
5. Rib pain when I'm laying down and when I sit at my desk at work too long. This is new, only started about a month ago.
6. Knee pain - 2 surgeries in my right knee already.
7. Achilles Tendon... aches all day long. Bone constantly cracking when I move my feet.
8. Bunion and hammer toe in my right foot. Overall pain in all my toes but worse in the right foot.
9. Fatigue.
10. Loss of appetite from being so tired.
11. Trouble sleeping, mood swings from the pain and lack of sleep.
12. Neck pain, usually very high up basically where the head attaches to the neck
13. Shoulder pops out on both sides when inflammation is really bad.
14. Anytime I ever get a friend to give me a back massage they're always amazed at how many knots I have but also how it feels like theres fluid in my back, especially in my the lower region and in between my shoulder blades.
15. Very stiff in the morning and when I'm at the desk for long periods of time
16. Occasional numbness in my hands.
17. Very sensitive to holding anything cold.

In addition
1. Asthmatic
2. Very Allergic
3. Acid Reflux disease
4. Depression
Hi im laura
im new
1. joint pain all joints always
2.pain in ribs
3.occasinal extreame sharp pain in chest when breathing in
3 graves disese
5.mytrovalve prolapse
6.valve insuficiancy and stinosis
8.back and neck pain
9.dislocating joints
10 knee pain like pinching nerve and bone on bone
11.sinis presure
12 fingers and toes get white and blue and like dead when they get cold
13.very short of breath / worse walking up hill
14.vision problems
15.deep pain like in bones
16. numb and prickly parts of upper back
17.memory problems and problems thinking clear(44 years old)
18. extreame pain that it wakes me up seems never ending( had to quit my job)
19. extreame fatigue
20.stiff and painfull mornings
21.ventricular and atrial fibulation
22. IBS
23. hopeless feelings at times
Hey, guys, I just now realized-- I've never taken the time to post all my s/s, so here goes:
1. Childhood "growing pain" aches in joints that continued into teenaged years, with frequent visits to chiropractor with severe back pain!
2. Lots of "female" problems as teenager, with problems starting my menstrual cycle,(age 16), then every month would have very painful, heavy cycles, with lots of clotting, ect., severe cramping, had to follow-up with chiropractor exam to start period often; went to ER almost monthly for pain injections from ovarion pain!
3.Always have had extremely dry skin!! Lotions seem to help little!!
4.HLA-B27Positive- tested in 1994, and dx. of AS made at that time, due to measurements of decreased lung capacity study & x-ray films Dr. took at that time. Was told at that time all there was to tx. this disease was Nsaids & pain meds., so I took Motrin, which helped me more than most Nsaids I had already tried through the years for bone & joint pain, & caused less stomach upset!
5.Stiffness in knees, elbows, hands, feet, fingers, in am!
6.Sensitivity to sunlight!
7.In 1996, I developed the worst case of Rosecea the dermatolgist said he had EVER seen!!
8.IBS!!!I was plagued by this wonderful curse for several years SO BADLY that if I got a burger that had 1 bite of lettuce on it, I would be bent over in severe pain within 10 minutes of eating it!!!; but for the past couple of years, that chapter of of my life has been better, thank God!!
9.A stroke in 2003!
10.Another stroke in 2006(Christmas Eve night, but it was only a TIA,hey, I am just 54--and have never even had high blood pressure??) go figure??
11.Left & Rt. sided weakness(but they are both from strokes, we think? (who knows??)
12.Numbness in both lower legs/feet at times, esp. if sitting very long
13.Lesions on posterior rib-cage in 2001; bone scan revealed these; had rib resection- Drs. couldn't identify what growth was, due to Rhuemy. I had switched to at time not acknowledging dx. of AS., apparently; I think these areas are probably a scelortic type growth from the AS, but medical Drs. are not familar with the disease so they were unable to identify it!
14.Carpal tunnel, both wrists
15.Severe pain & straighting of neck, with a "hump" area that gets bright red & feels like it is "on fire" at times with a :searing, burning" pain in that area
16. I often, about 1 time a week-to every 10 days or so- feel flu-like s/s- ache all over, low-grade temp., extremely worn out, malaise, stay in bed for a day or so! (And my tongue and mouth get sore).
17.Extremely SOB at times! Can't walk even a short distance without panting for breath!!
18. I am always, always extremely fatigued!!!
19. ANYTHING I DO TODAY< I PAY FOR TOMORROW!!! I get so tired of knowing that any activity I do with my children, husband, or grandchildren, I will be spending the next day in bed or in the recliner resting up from spending the time with them!!
20.Memory problems!!
21.Following a recipie!! It takes me 3 times longer to cook something than it used to!!
22.Insomnia--I've had 2 sleep studies done!! They both showed I don't sleep due to the pain!!
23. My pain does seem to worsen at night!!

Gee-- there MUST be more s/s!!lol! But I just can't think of anymore right now!! God Bless All of you Great people! I wish we could have met each other in a better environment, without each of us being in the pain we are, but together, we CAN make this a better world for the future!! I do believe that!!

23 years wearing my conscience on my back! and only 40!
mental health! became a counselor...
sausage toes
uveitis iridocyclitis or IRITIS
permanent dilation in one eye
sciatica both hips.
colitis and all that is fun about that!! ya know what I'm talking about... whooo that was a rough 18 months or so. meloxicam helped...
also used UMIBOSHI japanese alkaline plum. tastes awful, better than nexium 40
acid reflux
ruptured vocal chord, acic ate through it.. UMIBOSHI and Carrot juice Vitamin A been 4 years and not so bad.
lung infiltrates
multiple fused verts. lumbar down
cervical 1,2,3 dehydrated discs
fusion of the inner ear stapes,etc.
eye twiching
finger twiching when tired
chest pains when temp changes. live in Fla. great for heat. lousy for rain.
tendonitis, fingers, heels, thumb pads, foot pads, elbows
all joint pain.
hair pain on a strange day! more scalp than hair!
environmental issues:
may have had both without a positive HLA,sed test. who knows?
Oh and being a human weather barometer, feels like a icy rod down ya spine when the clouds come rolling in...
Thats it for now, I hope! we'll see.
I do find that humour, love, and a positive outlook are
wonderful elements in dealing with the relapses.. thanks

I was recently diagnosed with undefined spondylitis. It took them 6 years. I am 35 with two kids under 5 years old. It's hard explaining to my kids why mommy can't pick them up. I thought I'd share/vent my symptoms:

1. Recently diagnosed after 6 years of misdiagnosis with scleritis in both eyes. Its to the point that bright light irritates my eyes and I have to wear sunglasses in doors. I get stares, glares and ignoramous comments "It's not sunny in here."

2. Sharp, twisting, stabbing pain in my hips, lower spine near my S I joint and L4- L5. I had an x ray which showed no change but painful enough for narcotics. MRI showed a mild disc buldge.

3. Bursitis in my right hip, very sensitive to the touch.

4. I can't bend backwards, lift or bend forwards w/o shear torture.

5. Shoulder pain to kill a devil. My left shoulder joint is sensitive to the touch, if I lift my arm to high ooooooooh my is all I have to say.

6. Ankles so sore and sensitive that when I was examined by my doctor I nearly jumped out of my seat.

7. wrist pain and joint pain between my fingers.

8. Inflamation in my ribs, I was diagnosed with costracondritis after my glabladder surgery. My spondylitis according to the doctor irritates my costracondritis and is probably caused by it.

What's the most irritating of all of this is all my genetic tests come out negative. I have all the symptoms without blood work but my sedreate level is elevated. My doctor has labled me with undefined spondylitis. anyone have another thread to what eases anyone's pain besides the tylenol with arthritis and meloxicam? Cause it ain't working. confused
Does anyone know why the brain fog? I didn't realize it was a symptom and have been scared to death it was something else. Rhumy never tied it to SA. The fatigue yes, and the joint pain but not the memory stuff. Has anyone gotten any help with it in your medications? Thanks for the great info. k
Does anyone know why the brain fog? I didn't realize it was a symptom and have been scared to death it was something else. Rhumy never tied it to SA. The fatigue yes, and the joint pain but not the memory stuff. Has anyone gotten any help with it in your medications? Thanks for the great info. k
Diagnosed Jan 2006 at age 24.

-Pain in the SI area, mostly on the left side, and sometimes radiates down the thigh.
-Back pain & stiffness throughout the night and appx. 45 minutes after getting up. Usually awoken from pain every hour or two.
-Constant fatigue.
-HLA-B27 Positive.
-Progressive, visible deterioration of the Left SI on XRay.
-Neck often feels like I slept on it wrong or pulled a muscle.
-Seem like I'm overall more sensitive to the touch than I used to be or the average person is. A little poke on the arm really hurts.


-Chronic hives reactive to NSAIDS (Told this is auto-immune related).
-Many allergies.
-Fever Blisters (once or twice a year)

I'm new here, wanting to learn and get a sense of "community." After a lot of research I consider myself to have a "prediagnosed" case of AS or USpA (TBD at rheumy appt in 2 months). Haven't had S/I x-ray or MRI.

I have nodded a lot as I read thru but this "symptom" really got to me.

Originally Posted By: mdeisme

.... observed crabbiness ....


OK, my symptoms and problems.

36 year old female, grandfather I think has AS, 6 yr old daughter has Crohn's (she's HLA-B27 negative, dunno about me yet). I also have autoimmune hypothyroiditis (Hashimoto's) as does my mom.

Investigating my maladies last year, thru MRIs of brain, cervical, thoracic, lumbar spine, I have DDD/OA with osteophytes and herniated disk in L4/L5 as well as 3 herniations in thoracic spine (T3/T4, T4/T5, T6/T7). Minor disc compression is noted through upper thoracic and lower lumbar spine also.

-thoracic spine pain with concomitant muscle pain along the spine (guarding?) - on and off for many years but now constant
-crackling and popping all along my spine, but particularly disconcerting in thoracic region
-pain in front of chest, seems to come with thoracic pain, kind of like heartburn but unrelated to what or when I eat, and not relieved with antacids. thought it might be an ulcer from the ibuprofen (I stopped taking it for a few weeks then started naproxen).
-pelvis pain/ache deep inside in the back, started as tailbone ache several years ago, now pretty much daily, by morning it hurts so much no matter which way I lay, I'm happy to get up before the alarm. not exactly buttocks, not exactly lumbar
-feet always sore (mid to forefoot), ranges from moderate to severe, doesn't seem directly related to usage
-hands very stiff in a.m. - not sure if this is related to AS or if it's OA, not diagnosed yet
-rib pain from a normal hug the other day, that was new
very dry eyes, no iritis yet, but I have punctal plugs in lower tear ducts - not sure if related to AS or not
-occasional skin rash, always localized on joints (elbow, knee, knuckles) - red and itchy. related? dunno, can't find anything that describes it anywhere.
-general feelings ranging from fragility to depression to anxiety

Feels worse sitting at my desk at work all day, standing & working at the kitchen counter isn't great, things seem better if I keep moving. I'm a runner and so far that doesn't seem to cause pain although I'm worried about potential long term effects.

Ibuprofen and naproxen help some to all of the pain, some of the time. Most evenings my heating pad is my best friend. I got an extra long one so the bottom is under my butt and the top goes all the way to my lower neck!

Dunno if I have reduced ROM or lung capacity... from my MRI I don't believe the kyphosis in my thoracic spine is severe nor do I think I have any vertebral fusion. Yet. I've never been able to touch my toes, can only get 6-8" from the ground.

If anyone reading this things I'm off base thinking this is AS or USpA please say so! And if you have thoughts of other things I should mention or ask my doctor - tell me that too smile
Shoulder blade pain
chest pain
neck pain that can result in migraines
wrist pain
numb left arm
possible endo
bowel and stomach problems
heavy periods
brain fog
heel pain
knee pain
It's difficult to tell what's caused by my CFIDS versus what's caused by the AS - but i'll try my best. So far the symptoms i've had that can be attributed to the AS are:

Low back/pelvic pain - worse after sitting/sleeping

Inability to sleep through night or lay on back at all

Intermittent plantar fascitis

Severe foot pain (stabbing pain in feet)

Severe knee pain (both legs, unattributable to my osteoarthritis)

Shoulder pain that comes & goes

Ribcage swelling, scarring and pain

Bowel symptoms (severe constipation with intermittent diarrhea)

Neck pain with bone spurs - sometimes my neck locks up in a.m. after sleeping & I can't move it either to the left or right all day, depending on which side I slept.

Severe headaches on waking - intermittent - that nothing will touch.

Upper back pain that gets worse after i've been sitting for a while - I feel like I want to take pliers & stretch my shoulderblades apart because they're spasming so badly & it hurts so much.

Blurry vision - this comes and goes - sometimes I just cannot see out of one eye without it looking like i'm looking through a frosted glass - but there's no pain, so I haven't seen anyone for it. It could be dry eye but i'm not sure at this point.

I think that's it (as if that's not more than enough!)

I haven't heard many talk about the rib pain....gosh, muscles and tendons so tight, they feel as if they will tear when you breathe deeply or cough. Another symtom which I have from time to time is feeling as if both groin muscles are pulled and I can barely lift my legs. So I guess all in all the inflamation can show anywhere throughout your body. Mine did start at 19 in my sacroiliac joints, and it took me, finally, after a trip to the mayo clinic, 5 yrs ago...30 yrs to be diagnosed.
55 year old female, diagnosed with AS a few months ago after years and years of misdiagnosis. Docs never put all the symptoms together until I went to a rhumatologist. Symptoms include (sometimes severe) pain in spine from lower back to neck, pain in every joint in my body, constant bladder infections, irritable bowels, stomach pain, hair loss, brain fog, extreme fatigue (feels like life is leaving my muscles during bad spells), gum disease (which has improved greatly since going on methotrexate), morning stiffness, can't sleep without pills, HLA-B27 positive, itchy rash on face and elbows, hearing loss. Went to doctor many years for fatigue, was told to take vitamins...
throbbing hip pain (used to keep me up at night before meds kicked in)
wrist pain
plantar faschiitis (better now with cortesone shots)
sharp stabbing pain from wrist (carpal tunnel??)
upper back pain & pinched nerves
lower back pain, sciatica with pain wrapping around the hip & down onto thigh
shoulder pain (especially in colder weather or when wind or AC blows on me)
tailbone pain when standing up & sitting down (what the heck is that!)
pain below the kneecap (feels like tendonitis)
thumb joint pain both hands
stiffness after sitting awhile
Diagnosed with USpA
Hoping to learn more about this.
Not officially diagnosed.....but

Severe Sciatica and what was diagnosed as "hamstring pull" in my mid 20's. I could barely walk.

Inexplicable rashes throughout my mid 20's to mid 30's. Several different diagnoses for these.

Fatigue and depression mid 20's to now age 39.

Ankle swelled to the size of a nerf football at age 33. I was told I had torn my posterior tibial tendon and we needed to operate. I didn't agree as there hadn't been any trauma.

2 bouts of iritis.

Big toe swelled to the size of an orange a year ago.

Bad neck pain and night sweats recently. Also, I was told that I have a pretty significant curvature of the spine. Can this be brought on by AS?


Anyone know a good DR. in the Richmond, VA area?
Hi, I have been at this site for a while now, but have never managed to list all my symptoms, but I will TRY.....here goes:

Tall and lanky as a kid, with hypermobile joints

Now I have lost two inches in height at age 41, and have hypemobility syndrome.

Neck had it's first episode at age 13, it suddenly debilitated me. Was home alone and no one believed when I said "I cant go to school, I can't move!"

I had multi level nerve root impingement from osteophytes, and cervical stenosis, severe cervical spondylosis by age 39 and last year had 3 levels of neck fused.

Thoracic outlet syndrome, vascular and neuro types, bilaterally

raynauds disease since age 19

elevated leukocytes

partial fusion of L5-sacrum on right side

spondylosis lumbar


trochanter bursitis
Hip pain
hip stiffness
SI joint right side very painful to touch when inflamed
STIFF LOW back and ankles, heels

rotator cuff tendonitis in both shoulders

SIT BONE PAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

knee pain an stiffness
migraines- severe
muscle spasms- regularly
mouth sores
chest pain!!
Pain, pain pain.................:(

So far diagnoses are fibromyalgia, osteoarthritis, DDD, spondylosis, thoracic outlet syndrome, sciatica, dyslipidemia, sacroilitis, rotator cuff, trochanter bursitis, congenital degenerative arthritis of the lumbar spine, neuropathies, migrianes, GERD, reflux, ulcers, cervical polyp, MRSA, respiratory staph, hypermobility syndrome, osteopenia of cervical spine, DDD, ........on and on!!
I'm brand new to this forum and would like to share some of my symptoms.

* fatique
* pain and weakness in left wrist, elbow, shoulder
* unable to sleep in my bed (bones feel like their being crushed)I sleep in a recliner and it's getting old fast!
* loss of appetite
* more pronounced pain in the evening prior to bedtime
* pain when I breathe
* pain in back, knees, shoulders, ankles and wrists
* left wrist is nearly as wide as my left hand

I'm on a regimen of methotrexate - self injection (8 ml) once a week along with a vitamin D pill. Tomorrow (July 3rd) will be "shot" #9 and I'm not feeling any better. In fact, it started out, days one and two preceeding the shot were bad, but the rest of the week was good. Now I'm lucky if I have two to three good days a week. New as of last week, I'm having pain above my left eye and getting weekly headaches. My specialist tells me it will take nearly 12 shots before I will feel better.

Anyone else have experience with methotrexate and if so, how long before you felt some relief?

Thank you,



I have had symptoms for 7 years, was diagnosed with AS three years ago, and started Embrel 2 years ago. Symptoms are usually pretty well managed by weekly injection of Embrel and 2-3x daily Voltarin.

Symptoms are:

lower lumbar and hip pain and stiffness
knee pain
frozen shoulders
neck tension and migraine
numbness and pins and needles in right front thigh when tired
history of plantar fasciatis
I was diagnosed at age 17, I am now 35

I have alot of the classic symtems:

Back pain
Every couple years Iritis
Bowel issues. (going back to doc to have diagnosed
w/ bowel issues I have passed out a couple times. (not sure what this is about)
* Low back pain very severe sometimes but aches all the time
* Pain in buttock/low back SI joint
* At times pain so severe I cant walk
* Knee pain and pain going down legs
* Occasional eye issues, enlarged pupil, bloodshot, swelling
* Migranes
* Muscle stiffness and sometimes weakness
* Pain almost always worse in the AM especially in lower back
* Fatigue and trouble sleeping
* Pain in neck so bad when i get attacks it doesn't go away for weeks and gives me horrible migranes
* Pain in back gets worse when its rainy out (as strange as that seems).
* Rhuemy told me my back is more hunched than what is normal.
I am knew to this..
stiff in am
extremely stiff in pm
can't sleep
alot of pain right si jt
hip pain
low back pain and tightness
did have right buttock pain.but all the drugs have seemed to help this
don't feel the same person I used to be
1)rib pain, excruciating to sneeze. When sleeping on my side and then turning back, it feels like my ribs are decompressing and hurts horribly.

2)Stiffness and pain throughout my muscles.

3)malaise and mildly flu-like.

4)I have Crohns which is related to the Spondylitis.

5)Every 3-6 months I get excruciating hip pain so that I can not walk.

6)Some days I feel like I can only walk like a 90 year old, I feel like my steps are tentative and shaky.

Check if you have Crohns, it is related to Spondylitis.
my symptoms are
1. pain and tenderness in ribs/chest
2. no mobility in neck area and limited in lower back
3. Hips tire and tighten easily when walking.
4. Bowel irribility and gurgling
5. tire very easily when exerting
6. can not lie on back or stomach
7. some headaches
8. sometimes have pain in neck area

I dislike being in crowds as I feel hemmed in and since I lean forward I feel like I am in others way. I am concerned about falls or auto accidents.I tend to get irratable when stressed more easily than I used too. I believe it is because of the body tensing up.

I sleep pretty good most of the time but anytime I turn from side to side it wakes me up as I have to lift myself up to turn. I have my bed at buttock heigth so that I can just lay down without falling down into bed. I have a bar next to my bed to pull with my arms myself out of bed.


I just recently got diagnosed but the pain has been around for about a year. I am in the AF and wearing the extra gear has really begun to kick up the problems.
Here are my symptoms:

bilateral hip pain..all the time, worse with exercising, fast walking, or any kind of quick movement
pain down the buttocks
pain in the lower back (now the pain radiates up my spine to my neck)
pain in my feet and knees (dependant on how much I am carrying in my backpack that day)
pain in my left shoulder blade (gets work with typing and eating of any kind of starchy foods)
Morning stiffness for about 3 hours (until I get into a hot shower)
Positive for Rheumatism in my blood work.

I guess that's all I can think of for now. Since I was diagnosed I have been paying much better attention to my body and what it's been saying. This has been a hard year and I am just wondering where my life goes from here.

AD Air Force, 29 y/o Female, stationed in South Korean
I thought I would list my multitude of symptoms

Pain in upper and lower neck that radiates into the skull
Chest pain
Hip, knee and Ankle pain
migraine ( 4 to 5 times a week)
Recurrent episodes of Pericarditis
Loss of feeling in both legs and arms
Extensive fusing through out the spine and chest
extreme fatigue

As a result of the spreading loss of feeling in the legs I use a Wheelchair.
Sleep is something that is hard to achieve.
Well, it's hard for me to pinpoint *everything* as I do have pretty severe scoliosis as well as AS. But here goes:

* Fatigue
* Pain in the butt (literally)
* Numbness in both big toes
* Morning stiffness so bad I have to soak in the hot bath for about a half hour before attempting to do ANYTHING.
* Kidney stones
* Migraines/tension headaches (daily)
* Low grade fever (always running between 99.4-99.6 degrees)
* Serious stiffness after sitting or driving over 15 minutes or so
* Heel pain
* Hip pain (right side, however my right leg is 3/4 of an inch longer than the left)
* Stiff, swollen hands (worse in the morning)
* Feeling like EVERY joint is inflamed yet NO inflammation presents
* Can't fully expand lungs due to constriction (caused by either AS or scoliosis)
* Knots, most are very tender, from tailbone to neck, that never go away
* Chronic sore throat & repeat sinus infections
* Mild plaguing of the aorta
* NO desire for social functions (the thought of taking the energy to do my hair & make-up, dress in uncomfortable clothes to go sit or stand somewhere and pretend I'm not in pain doesn't appeal to me).

I also have an ovarian cyst and a fibroid (uterus), not sure if these are related or not.
i can't rememer if i posted on this one or not!!! hehe!!! there's one of the symptoms now!!! foggg!! ok here goes!

finally diagnosed with a.s. jan. 2008
diagnosed with fibro april 2006
diagnosed with osteo arthritis 2004
diagnosed with microscopic colitis 2006
diagnosed with degenerative disc disease in c-spine, t-spine and
heel spurs
tachycardia (cardio doc says because of inflamation in my chest)
sacroiliitis bilaterally in si joint
bone scan read degenerative joint arthritis (osteo) in basically
every joint in my body.
loss of muscle strength in legs and arms.
cannot touch arms above head, not even close.
decreased mobility in hands, shoulders neck, and back of course

i basically have pain somewhere in my body at any given time so that there is never a time that i am pain free!! hehe!!! not that any of us ever are!! i am fluffy (chubby) and it is mostly because of the lack of exercise. i am finally going to start swimming again soon. i have tried all of the n-saids, but can no longer take them because of colitis.
my current meds are:
atenolol (for my heart rate and if i don't take it my heart beat can go as high as 140 or so)
tricor(i have hypotrigliceride something or other!)
may be starting lyrica again

and i think that's it!!!
oh , i forgot to mention a few more:

walk with a limp sometimes use two canes
chronic dry eye
blurred vision
did i mention fatigue?? i take naps daily !
stiffness lasting more than an hour in the morning , sometimes all day
swelling in ankles, hands, elbows, and shoulders, knees i can't tell anymore!!!
neck pain that radiates to shoulders
most of my pain is my entire spine si joints and hips

ok , i think that's it this time!! hehe
Have not been posting for awhile since I have no diagnosis but I can add some new symptoms that are bothering me alot at the moment.

Pain in hips
Burning in hips and lower back when bending over or going up stairs
Uncomfortable feeling in neck and spine that makes it difficult to hold head up and also makes me nauseas.
Pain,in general, all along the back side of my body from neck to feet.
Extremely painful to exercise and, although I used to go to the gym every day, I rarely go as I must save energy to take care of children.

I am still hoping for a diagnosis soon.
Can anyone help me? I am a 56 year "young" and very desparate female who has been experiencing debilitating symptoms since Dec 07. Not one of the 7 different specialists that I see repeatedly have any firm DX. However, just recently my Orthopedic Surgeon, after listening to my symptoms, said that I probably have ,in addition to a herniated disc, sacroiliitis and prescribed physical therapy (I am currently in pulmonary rehab for COPD and the therapists refused to provide additional therapy at this time). Having no idea what sacroiliitis was I googled it and ended up looking at ankylosing spondilitis??? Since the Ortho guy did not do any physical examination I remain skeptical so I would like to share my symptoms and would welcome the opinion of anyone willing to help. Here goes:

1.) Significant waist level to mid back pain in the morning - feels like back/rib cage spasms that are locked. Sometimes it involves the chest wall as well.Gets a bit better as the day wears on.

2.) Waist level pain, leg pain and significant neck pain when I sit in a comfortable chair to watch T.V.

3.)Better with exercise but the exercise seems to worsen the pain once I sit or go to bed. In bed I can only lay on my right side and even that immediately causes what feels like a pulling sensation between my hip and my rib cage

4.) Bowel movement frequency irregularities(Gasto. Dr. is stumped after many invasive and non- invasive tests)- bowel urgency immediately upon waking - not unusual to go 7-12 times in small amounts for the first 3-4 hours in morning- seems to taper off in conjunction with the lessening of my back pain which moves from mid back and rib cage to the waist over approximately the same time span.. At night I experience bowel urgency 1-2 times( but have gone up to 3-5 times) after having eaten dinner and begun relaxing in a recliner

5.)High WBC

6.)Edema in lower legs

Without exageration the morning pain is truly excruciating most days and can go from my waist area up my back to my rib cage and chest wall at its' very worst. And I might as well be honest that this problem combined with COPD, Sleep Apnea, Disc Herniation, Hypertension, GERD and a few other issues has transcended my coping abilities and I am ready to do anything for relief. Please, can anyone comment or help me find relief? I live in the eastern panhandle of West Virgina but I am originally from Baltimore and would be willing to travel for help.
Thank you all in advance for any support you may offer.

I read your post and it was very simular to a situation my mother is going through. She had two accidents where she lost control of her bowels and did not make it to the bathroom. She went to the doctor and had an MRI done. She found out she also had a herniated disc,spondylitis and stenosis and that she has something called Cauda Equina Syndrome. This syndrome can cause problems with bowels and lots of pain in lower back and legs. She was told that it is degenerative and that the nerves that run along her spine stop and that there is a degenenerating gap. This is why she could not control her bowels. She was told that with sugery this problem can be corrected as long as she dosn't wait too long. I know I did not do a good job of explaining this syndrome so you may want to check it out for yourself at the following web site. Good luck.
Symptoms wow where do I begin

-Lower back pain left side radiating down leg severity of pain is not always the same
-early morning ankle weakness ( some times they feel like they are going to break)
-Jaw pain usually severe when it occures. unable to chew difficulty talking
-Neck, shoulder, Mid back, breast bone, chest and rib pain
-Short of breath when I have pain in breast bone and mid back
-Wrist pain occasionally
-IBS with cramps often wakes me up in the middle of the night (I just love sitting on the throne in the dark!! HAHA)
-Osteoparosis in spine and hip
-Degeneration in lumbar and thoraxic part of spine
-Dx with Fibro before dx with AS
-Upset stomach with ulcer
-Pain is worse when it is raining(been raining for 2 wks)
-a few broken bones in my left foot which did not heal completley

I was Dx 2 months ago with AS, unable to see Rheumatologist til Nov and he is a 6hr trip away. My MD will only give me nsaids, narcotics and occ prednisone
I go in therapy pool 4times wkly, and pt 2xs wkly for osteomanipulation
I use heat and cold, prayer, tears and laughter.


Thanks so much for responding to my posting. I have heard of the cauda equina syndrome and have mentioned it to at least 2 of my doctors who seem to dismiss it out of hand. It feels like I am not getting through to any of the myriad doctors that I have seen and I now believe that that's part of the reason I am still without a firm and final DX. The doctors are not really listening or they home in on one symptom and run with it. I have asked my primary care Doc to review and coordinate the results of all tests and DX's but this hasn't worked either - I guess that I am on my own and will have to become much more agressive with the medical "experts". In any case, thank you again for caring enough to respond and I will continue to pursue your suggestion.
Quick question for symptoms of AS. I was diagnosed in Jan. of 06 and I am taking Lodine and Enbrel. Is blurred vision, maybe hearing loss as I do not feel like I can hear as well, and also migrains/headaches all normal symptoms as this progresses?
1. Moving around joint pain including the jaw
2. Sometimes hurts to sit
3. Swollen joints esp. fingers and toes (sausage like)
4. Originally started in my left heel which was so painful I couldn't walk for awhile
5. Pain tends to recur in my spine often
6. Problems with my eyes esp. dry eye (keratitis sicca)
7. Vitamin D deficiency
8. inflammation on blood work
9. Pain Pain Pain, did I mention Pain?
10.Stiff all the time esp. after periods of inactivity but overdoing it causes stiffness and pain as well- stiffness is centered mostly in my spine and ankles.
11.Skin problems on scalp mostly
12.Chest pain and sometimes shortness of breath (unsure if the shortness of breath is asthma related or arthritis related.)

Diagnosed with PsA (Psoriatic Arthritis)

Wanted to add my other Dx's
GERD with gastritis/gastroduodenitis/sliding hiatal hernia
CAPD (Central Auditory Processing Disorder)
i don't know about that but i have been having similar with the vision. i don't think that it's from taking enbrel because it started before that. i have had some hearing loss for a while, but it's getting worse. who knows with all of our symptoms, why not add a few more!!! i think that some people may have the same. have you read all of the posts? you can type in your sypmtoms in the search, and i believe that it will bring up some of the posts that are similar.
take care,
Hi I'm diagnosed with Undiff Spondyloarthritis and Osteroarthritis

Neck Pain
Lower Back Pain
Hip pain (SI joints) bilaterally
Swollen ankles, fingers and toes
Shoulder pain (left)
Stiffness after sitting to long
Trouble walking sometimes ( use cane when needed)
Red eyes
Trouble sleeping
Bruise easy
Bone spurs on both feet ( right foot the worse)
Pain from neck which has severe mobility issues, Pain in back (all over)Pain and swelling in all joints, and when flaring (which is now commonplace)pain and swelling/numbness in wrists and fingers, sometimes leading to hand locking. Intense fatigue,fogginess,and feeling as though I am being sucked of energy and vitality, often feeling like a zombie. I have had uvetis and have chronic gastrointestinal problems and anemia. Fusion in sacolriliac joints and neck.
back pain
shoulder pain w/1 shoulder replacement
5 trigger finger surgeries
hip pain
shortness of breath
occasional racing of heart
foot pain
knee pain
occasional depression
very stiff in joints

My symptoms started at 20. I am now 42 and I was just diagonsed 10 days or so ago when my left ribs popped out of place making my back look like it had a cliff on the left side. frown
Extreme pain upon waking. Most of the time it goes away, if the weather is not cold or wet.
Pain with deep breats
Sometime unable to breathe very deep.
Chest wall swells causing ribs to pop out of place sometimes.
My ribs have been known to cross over in the back and get stuck until the swelling goes down, usually 2 or 3 days.
Chest wall expanding SO much I have had to have a bra literally cut off!
Ribs are closing in causing problems breathing
Arthritis on spine, pubic (not pelvic) bone, fingers and knees
Pain inbetween shoulder blades, elbows, feet
Neck pain and stiffness
Had to get bi-focals last month. Last year my vision was fine
Sharp pain in head
IBS, Hehehe...lose weight when that happens.
Trouble sleeping
3 heart conditions
I have been having digestive problems. Severe pain in my upper left and middle abdomen . Endosopy showed inflamation in both upper and lower digestive tract. I was hospitalized briefly for GI bleeds. My gastro doesn't think it is related to my AS but my rheumatologist thinks its definately related and changed my meds. While they are figuring out who's right can someone tell me if they have had the same symptoms ?
I also have trouble keeping my food down. Other test have showm my stomache is not emptying (gastrperesis)
Please tell me I am not the only one !!
Lower back Pain
Neck Pain
ankle pain
Moving ribs
jaw pain
wrist and elbow pain
stomach pain from medications
neck and shoulder pain
mid back pain corresponding with rib/sternum pain (BIG VICE)
heel pain
knee pain
hip and lower back pain
pelvic pain
hand cramping
morning flu feeling
odd skin eruptions(sores)
painful jaw
sensitve mouth( hot, cold, spices)
Undiagnosed I recently had an MRI that showed DDD but the technician wants to redo it with a contrast dye to be sure.My Rheumatologist agreed. My family DR office says it wasn't clear and had to be redone. I wonder if they see something going on there. I sometime at work when stretching for to long on my right side (repetitive work) I get pain in mid-lower back on the right side the muscle tightens and I can't take deep breath just shallow breath till the muscles loosens up.
I still have Tendinitis in my hands. Had it for about 20+ months went into my forearms and elbows. Doing exercise at physio yesterday when he wanted me to put arms to my side; shoulders back, chest out and lift hand weights (5lbs)in each arms above my head I couldn't do. I felt I needed to expand my chest to breath couldn't expand my chest. I had to go to the 3lbs weights. I have no upper body strength. I tried almost everything for my tendinitis and nothing works but prednisone but nobody wants to give me some.


Meant for everyone not just dodgemom
my list:

Shoulder joint pain
hip pain
sciatic pain
cracking and popping in neck
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 10/14/08 05:13 PM
Wow,wow,wow,I thought I had it bad until I read some of these post. You guys hang in there. Well my back has pain only when I do hard work and I am starting to get problems with hearing and blurred vision. I bend forward from the waist and neck and lost about six inches that way, was 6 feet 1 inch know 5 feet seven. I'm not in alot of pain so in that way I'm kinda lucky but I told my wife if I get any shorter I'm going to be kissing her butt,lol. I have to keep a sense of humor or this illness will get the best of me.Other then that I have no problems. thank you all AL
Rib cage pain
Rapid heart beat
Lumbar back pain
Extreme fatigue
Neck pain
Gastro issues
Eye inflammation
Irritated throat
Sores in mouth
Knee pain
Foot pain on occasion
Unable to sit for long periods
Trouble sleeping
Brain Fog
Shoulder pain
Pain in joints of my hands and wrists

I forgot one of the most important symptoms I have.

MAJOR HIP PAIN. Both hips.
Oh boy here we go. laugh
Loss of 4 inches in one year (from 5'6" to 5'2") due to kyphosis and stenosis from AS
Low back pain and severe stenosis
Hip pain (right side)with SI fusing
Knee pain
foot pain (both)
wrist pain (both)
Neck pain, stenosis and stiffness
Loss of range of motion (multiple areas)
Shoulder pain (both) and between shoulder blades
chest and rib pain
Nausea due to lack of appetite
Slow to heal
and more fatigue
Recurrent iritis
chronic low grade fevers
weight loss/loss of appetite
sporadic swelling/pain/stiffness in knees and ankles
tendonitis in left elbow
heel pain
wrist pain
left SI pain
stiffness in thoracics
DX with AS, currently on Mobic 15 mg/day and Remicade
HLA B27+, 35 yrs old
Hi, I'm 29 was diagnosed almost a year ago and have the following:
Lower Back

I'm currently on Humira and celebrex
Anyone else have symptoms from head to toe?
I am newly DX ed AS, but I have had it for a while, I am so glad they found out what it was, FINALLY!
1. extreme hip pain
2. neck pain
3. Iritis in eyes
5. headaches
6. chest pain and tightness
7. trouble breathing at times
8. and the horrible pain from the Embrel shots, I am still trying to get used to them!
But I have to tell you that if you havent tried them, they have helped me SOOOOOO much! I no longer limp around or lay in bed at night crying b/c I couldnt fall asleep. I can now run with my dogs, wrestle with my fiance, and get up without having to hold onto something to get my strength before walking.
* cervical pain, fusion C2-5
* thoracic pain and scoliosis
* lumbar surgery 3x, rods, screws L2-L5
* frequent Iritis, bilateral, predominately left eye
* shoulder pain, currently popping out of socket (agony)
* posture issues
* THR left, lysis but 13 yrs and going! R hip to be done
* SI pain, fusion in process
* knee, hip, heel pain
* limited ROM
* Psoriatic arthritis
BUT refuse to give in smile

I was dx'ed with AS roughly three years ago following a really intense bout of iritis. I'm 45, HLA-B27 positive. Spent the first 2.5 years on Remicade, but now on Humira.

My symptoms are similar to many of yours:

Rib cage pain
Lumbar back pain
Eye inflammation (iritis)
Neck pain
Gastro issues
Hand cramping, wrist pain
Foot pain on occasion
Unable to sit for long periods
Trouble sleeping
Shoulder pain
Surgery at S1-S2 and L4-L5

and, more recently, bilateral hearing loss (not sure if this has a connection to AS)
pain in sternum
tight throat gets worse after talking and singing is out of the ?
voice gets raspy
feels like bone stuck in throat or "lump" on base of tongue
sometimes "rug burn" sensation in neck (c1 - c5 are fused)
HI, 39 female, Dx'ed in march/April of 2008 with Undif spondy with uvitis. Re-dx'ed in September/October 2008 with AS with uvitis.


severe iritis flare up for 3 - 4 months (not flare up since Dec 07)
Bi-lateral hip pain
SI pain
lower back pain
stiffness in ankles, knees, hips in morning for 15 - 30 minutes - not severe
FABER Test (Hips/Sacroiliac Joints) ( failed - extreme pain)
Spine range of motion test started at 4.2cm and dropped to 3.5 in 9 months.
c4-c7 fused (fused from surgery as result of car accident, but non accident damage was seen there also)
My symptoms:
lower back pain
hips ache
cervical spine aches
stiffness- am the worst
knees painful & throb at night
nasty discoid rash-arms, legs, stomach, some on head, a few on face
swelling in one knee- little relief in 8 wks.
sleep disturbed nights
fainting occasionally
feel like I'm losing it/ foggy
leg cramps
shoulders ache
skin takes forever to heal
I know what you mean. I was on humera from Feb. '08 off & on to Oct. '08. Never helped consistently because my immune system couldn't fight off anything. I've been so sick. Yes, I have had some brain fog. Some days I feel like I close to losing it.
Have you had any fainting ? I have Rheumy and AS. The pain is horrible in my knees( w/ swelling), hips, and shoulders. I have a horrible discoid rash most everywhere. I have pain more days, than not. I'm trying to keep a positive outlook. Right now I'm in a terrible pain cycle. Any words of wisdom ?
I'm hlab-27 pos, and adopted, too. This presents a whole nother set of issues, doesn't it. I don't guess it really matters if it was in the genes from my mom or dad, yet it makes the "discovery process" a little harder, since there's no family history to go on.
I have pain in shoulders, knees, hips, swelling in my knees, headaces and a severe discoid rash. Any words of wisdom.
My husband was diagnosed with Spondalytis as a child, he is now 38 and having more pain.
Feet hurting all the time
calf hurting all the time
whole body is mainly in paid. his skin hurts too

I feel a lot more informed since findng this forum. He is going to have to be re-diagnosed since his medical records have been lost.
Does anyone know of a good reumatoligist in Oklahoma?
Lower back stiffness/soreness
Muscle spasms around ribcage
Neck stiffness/soreness
TMJ, I am wear braces for this. Now I know they won't help the pain.
Left Neck pain
Left Rib pain
Left Clavicle pain
Left Scapular pain
Tired all the time
Can't Sleep

Pretty similar to you all.
* SI buttock pain, mostly on right
* rib pain/inflammation
* neck pain
* pain and stiffness in hand, wrist, knee and ankle joints
* new hip pain that extends to ankle - seems diffent than the original SI pain in buttock
* MTsargant mentioned restless leg syndrome, but in arms - I have that too off and on
pinched nerve in left pelvus - more from weight gain than AS, but weight gain is caused at least in part by AS
* TMJ pain and stiffness
* extreme dryness of mucous membranes, esp. the mouth
* arm pain related to how I hold my upper back. Exercises help with it, but makes right arm at least temporarily useless and very sore
* depression and anxiety
* brain fog
* poor quality sleep: have trouble falling asleep but then have difficulty waking up
* get very tired very quickly; not just loss of conditioning, but a loss of endurance due to pain and stiffness
oh yeah and instead of getting iritis, I got episcleritis, which is inflammation of the white of the eye.
Symptoms, oh wow:
Lower back pain
Kneck pain and stiffness
My right shoulder is killing me
I feel like my upper body strength is just getting weaker and weaker, is this normal?
TMJ w/ night guard - had for years off and on.
heel pain
Can not stand for long periods, or sit for long periods and driving kills me.
Brain Fog- I not feel like I can remember anything half the time and feel really stupid sometimes.
Blured vision
Ears ring at times
Arthritis in my hands
Diagnosed w/ AS 2/06
Enbrel and Lodine
Sister and nephew have been diagnosed
B27 positive

I am now concerned about my son who has had heel pain for 4 years??? any ideas????
Ive read a few messages here and I just keep saying "wow, ya. that too." lol. So I thought maybe writting them down I'll see a bigger picture. Don't know if thats good or bad, but here goes..................
I'm very newly diagnosed, but have had for long time.
In younger years had the lower back pains and inability to sit for long periods even as a child.
thru my 20's still had low back pain and stiffness slowly progressing up my spine.
As of right now ive progressed to
Stooped over posture.
pain in left shoulder.
extreme pain in neck including periodic spasms and pinch nerves.
feet pain diagnosed plantar ....phish....fis... oh you know!
Anemia that will not go away.
Fever chills during day, sweating at night.
Major fatigue.
sore joints in knees elbows and ankles.
Nausea daily.
Irritable bowel.
blurry vision. especially mornings.
As others have put... Foggy thinking.
and........ Im sure theres a few more. (foggy thinkings got me)
My rheumy put me immediatly onto humira because ofr my advanced spine involvement. So Ive got a start and it has helped with some pain.
I have no Idea whats to come or what more meds I may need. seems ppl are on multiple meds to live a life.
I await patiently to see how it goes.
Thank you all..
New symtoms developed 2 weeks ago: doctor thinks it's inflammatory bowel disease.

i am in the process of trying to get a definative answer to all my troubles.......

i have had trouble with the HPV virus for last 15 yrs , although in last 8 , it seemed to settled down , no new outbreaks.
i did have at least 6 cauterizations to remove perianal warts and one internal hemroid removal surgery.

in dec/jan 08 , i had 2 biopsies done in my mouth to remove a growth on my upper palate , benign is all they told me , but i was thinking it was HPV again ....

in jan 08/feb 08 , i developed severe sciatic pain , started in my lower back , felt like someone had drop-kicked me , pain down the leg , sort of an electric shooting pain , hard to walk, lift leg , etc.

i have always had alternating diarhea/constipation daily , especially this last year , cannot remember last normal bowel movement.i have changed my diet so many times , i finally gave up trying to eat high fiber foods , seems nothing works

in june , i was diagnosed with "bilateral vitritis" , black spots in vision , white blood cells filling inside of eye , massive floaters , and photophobia.Treatments for it start in a 2 months , either steroid injections or eyedrops , so far they call it "ideopathic" , meaning unknown cause.

i am always stiff when i dont move around for a bit , i remember just before the sciatic stuff happened , i was always stretching because i felt very stiff in my back all the time .

now the stiffness has returned ...... frown

i have stiff necks constantly , sometimes i have a sore rib , whic is weird , also recently , my one heel was oddly very sore for a day .

i feel nauseaus frequently ( which i used to blame on the stomach issues) , sometimes dizzy , and too much noise around me makes me unable to concentrate effectively.

my neck makes "cracking and popping" sounds when i move my neck side to side , and i get spasms of pain shooting down my jaw into my shoulder like a lightning bolt momentarily.I also get very sore under my jaw , just below my cheeks .

i also have weakness in my legs , specifically my knees , when i get up from sitting , sometimes it feels like my knees could giveout at any second .

when i was a kid , i had really bad "growing pains" , mostly in my legs .

i am suspecting AS , but i am not sure


so too sum it all up :

history of HPV infection
recent sciatic troubles
stiff necks ( crackin & popping sounds when turning)
lower back very stiff
pain in right shoulder for last week or so
stiff fingers on left hand , dont look swollen.
uveitis ( bilateral vitritis)
diarrhea / constipation ( usually at same time)
trouble concentrating in loud enviroment
ears ring , one at a time , always itchy
ears always pressurized ( had tubes as a kid )
leg weakness , week knees especially.

i am looking for confirmation of my symptoms before i go find a doctor who will listen to me

Decided to join the party belatedly. I have all my life had a tendency to pretty random tendinitis and episcleritis which doctors always said was weird. Also lower back pain in the middle of the night. A year ago I started having terrible not do anything fatigue and rosacea-like rash that comes and goes with the fatigue. 10 months ago the pain started:
Lumbar spine
Plantar fascitis
Rotator cuffs
Clavicles (the absolute worst)

4 months ago I finally found a rheumatologist who didn't suck, who initially said undifferentiated spondylitis but is now leaning towards AS. I started on prednisone and sulfasalazine then and will soon start Enbrel.
Oh, and brain fog. Which I forgot to mention, because, well, brain fog.
14 years of irritable bowels
increasing joint pain
have problems walking first thing in the morning, ankles seized in down pointing sleep position
pins and needles
weakness in arms,
sporadic inability to raise arms above shoulder height
occasional sudden dead leg, fall over
back siezures, get stuck when bent over
pain in back not pain, more like feeling sick, queasy, but in back if that makes sence
cronic fatigue, spaced by hyper episodes

cold sweats
can be ok all day, sit down when get home then cant get back up, have siezed up
lack of appetite, only eat when threaten to pass out
nosebleeds, pos due to high blood pressure and unrelated
excesive anal mucus, with wind not good, cant risk fart off the loo
feel most comfertable standing up, cant drive distancesas back spasms
have lost height and posture slightly

do you scar badly from the least little scratch?, have a physical job and my arms look like im a self harmer, but its just that the smallest sratch results in a white outy scar as it takes so long to heal, hadnt even thought that was related till i read yours
me too, was seeking info cause my elbows feel like i have sand in the joints, cant lift a coffee cup without risk, have worked in discount retail for 25 years and have muscles like shrek, couldnt understand increasing weakness, all the rest has been ongoing for last 15yrs but have ignored it,not one for running to the doctor, have been three times in last 30 years, last twice to express concern about something wrong, told to take a holiday, doctor doesnt know me, fact that i went in firstb place ment i felt like i was about to peg it, may go back armed with web info but then again feel like whats the point, no treatment
Stiffness and pain after sleeping or sitting
Shoulder pain (bilateral)
Neck pain
Sternum pain (pain on breathing)
Sit bone pain
Stiff ankles
Plantar fasciitis
Mouth sores (canker sores)
Red eyes, watering eyes
Severe light sensitivity (sunlight - must wear glasses)
Numb fingers at night
Severe acid reflux - oesophagus narrowed so swallowing can be problematic - have to crush pills

That's about it
This seemed to arrive in the wrong thread so I'm copying it again here. I used the quick reply but I guess that wasn't the thing to do!

Stiffness and pain after sleeping or sitting
Shoulder pain (bilateral)
Neck pain
Sternum pain (pain on breathing)
Sit bone pain
Stiff ankles
Plantar fasciitis
Mouth sores (canker sores)
Red eyes, watering eyes
Severe light sensitivity (sunlight - must wear glasses)
Numb fingers at night
Severe acid reflux - oesophagus narrowed so swallowing can be problematic - have to crush pills

That's about it
I'm new to this so please bear with me. I have been to numerous doctors, only to be told that I'm just fine, and if I lost weight I would feel better. I was finally diagnosed with fibro and some arthritus in my knee last year, but he didn't check any pressure points. Here are my symptoms:
It began with outer 3 fingers on both hands, clumsy and sore.
Wrists and elbows next.
Then small bones in my feet and heel pain, sometimes small bones in one and heel in other at same time.
I feel stupid, can't think of the right word, transpose numbers and letters.
thighs and biceps hurt.
outside of thigh goes to sleep.
near constant pain in lower back, so bad I have to get up in morning, no matter how tired.
headaches everyday.
possible rosacea.
have had costochondritis, pericarditis, bursitis.
ankles swell for no reason.
can't ever get enough to drink.
pee constantly. IBS.
monthly issues.
pinkies fall asleep.
tightness and pain in between shoulder blades.
heart races, almost leaves me breathless, esp when laying down.
eyes dry and sensitive.
So tired, too often.
breathe and swallow at same time.
Sternum tender in center of chest.
Cough if I breathe deeply.
Skin dry.
Hair loss.
I look healthy, people don't understand how I can feel this way and not look ill. When I came across this site, I almost cried. It was like reading about me. I had given up on doctors, I think I will try once more.

I know how you feel! I could not believe others out there had so many of the same problems I have. I can relate to most all of your symptoms.

Have you had a diagnosis? If not, persist until someone listens. Many of us here have gone years without being diagnosed. I have had AS for more than twenty years, but have only been diagnosed for three.

Welcome and if you have any questions or just need to talk, you have come to the right place!

Wow!! I'm new here, but not to message boards. I was just diagnosed (after 20+ years of chronic pain!!) with AS, so never know what to relate to it and what to relate to DDD and other spine problems. I couldn't sit here long enough to read all 26 pages that have been posted, but from what I've read, here's what I have to say!

I have most of the symptoms that have already been mentioned; right now, my worst one is calcific tendinitis in my right arm, which is causing me a LOT of grief, as I'm right-handed. This has gone on for 18 months now, but I think I'm beginning to get it under control.

Spasms in my whole back were horrendous for many years; I seem to be getting them under control now with my meds. I have pain in:-
-SI joints (even though MRI shows "normal"...everyone who has worked on me says otherwise!)
-both knees
-whole back, but especially low back
-right side groin pain (probably from L5/S1 issues)
-foot and toe pain
-numbness and tingling in legs, thoracic area and right arm

That's all I can think of for now....should I have just said "from head to toe"?? ;-)

Hello all - NOT DIAGONISED..on going month ONE.....

Well done to SAA for a VERY ,informatitive web site - as with other readers wanted to cry after reading it.but in a good way... my Direct Grandfather of 86 (2001) had AS for 60 years.

Here for information are my symptons...

i beleive that i am in #Early# transition here...

there are many of the below symptoms that i have had since child hood but that is with hind site...

my walking - bit wibbly wobberly i want to walk but dont really have much engery. walk off balance tilting forward from the shoulders, cos that's the way my body is making me walk - cant turn my head side to side - cant easliy turn trunk side to side

my symptons appeard after what i think was a viral infection of some kind - No sickness but felt very very ruff - 7 days later sever pain from above my left knee into back of hip continue to right hip and down whole side of right leg. found that I could walk for 1 or 2 days - but with a "floppy" back had no strength in it at all - I then found that if i "bob'ed" up and down i was able to walk faster (still slow but faster than I was) Whilst at work on the 3rd Dec 08 - work collegue noticed that i appeard to have had all my strings cut (puppet) was taken to emergeny osterpath - who wrote that bi latteral and scorcies? sorry about spelling -

now Jan 09 - pain is getting worse, typing is a problem, my memeroy is all over the place and i am now walking with a cane...i am 38 who feels 88.....first week of Jan 09 developed very Deep lung infection but the cough!!!!... constant feeling of flu and forever blowing my nose in the morning, well all the time but it's not flu. every single bone in my back feels like..well they all pop and grate together..also feels like someone is squirting liquid in between all of my discs...my brest bone...really dont want the doctor to touch it as feels as though it's about to snap off. my wrists and hands, when i try to stand up they are giving way now..my finger nails have gone crinkly - as a chap I have (had) really good nails but noticed this week, they aint no longer guvnor...feels as though i have cotton wool in my head as memory is a bit of kilter..my eyes sensitive to light have always been...cant sit down for too long as gets very uncumfortable esp my coxix- once i stand up it takes a (early symtoms)20mins before I feel more supple.feels as though my right leg isnt attached..cant stand up for very long i would say, 15 mins, before i start to move side to side to relive the pain in my....Top of neck just by scalp bottom of neck, whole of spine, both hips and then my knees start to get right on my nerves....my rib cage in between all of my ribs pain, my feet feel as thouth they have one large blister on the pad of my foot - but no marks?... dont think i want to write any more - but i really really sympathise with all the entries. i will make another entry another day on one of the forums... well that's it for now..bit tired well KNACKARD all the time smile...TA TA for now. Stuart

here is a news article about a guy with AS, it lists his symptoms so I guess it will be good for helping to raise public awarenes about AS, you can post a comment to this website


'I had no idea what was wrong with me' Incurable form of arthritis sidelines trustee candidate
Well lets see...
Pain in the joints of the hands and feet
Neck fused
shoulders partially fused
iritis... not so much lately
was 6'1" now 5"11"
rib cage fused
sleep aphneia
lower back pain
kidney problems
bad attitude....:-)

* Spinal Stenosis in both cervical & lumbar spine
* Herniated disks, bone spurs, etc - labeled degenerative disk disease at one point cervical & lumbar
* Shooting severe chest pain resembling heart attack (informed 2 joints in chest that are very inflamed & deteriorating)
* Neck pain, Neck tighness,tight steel-like bars around front of neck that cannot be relaxed at times
* Mid back pain, tightness
* Lumbar Pain - radiates into buttocks, hamstrings, calves
* Roaming extremely painful "Charlie Horses" like a ball running up & down my leg into foot causing all to deform
* Night sweats
* Restlessness in physical body & mentally, anxiety, depression, tenseness in physical & mental
* Days where feel like hit by Mac Truck & cannot move, get out of bed
* Limited range of motion
* Severe knee pain, cannot walk at times
* Severe hip pain, cannot walk at times
* pelvic pain, inner leg pain
* severe pain radiating from hip inward to middle of bottom then straight down to a low point knot in bottom in the glutes
* Headaches - cannot overcome without Maxalt (migrain med)
* Sinus pain
* Ear pain
* Jaw pain
* Fatigue - narcolepsy level at times, had to stop driving for period of time could not stay awake no matter what would nod off repetivelly (on provigil)
* I seem to clench my jaw lots
* Eye problems, dry, itchy, feels like sand in them, (had to have prescription for it - forgot name of it)
* Elbow Pain - cannot carry grocery bags of any weight
* Shoulder pain down into back, neck, arm
* Rotated shoulder from sleeping on side - had to move to back with props to keep there at first
* Loss of short term & long term Memory
* Confused, difficulty thinking, organizing, following through at times, in no way as productive as I get so off track or distracted
* Apathy at forcing issues with daughter - too much effort at times, causes lack of discipline, it's too much work to fight, insists, stay focused & on top of it, plus I forget
* fybromyalgia
* lack of appetite
* New diagnosis of severe low blood sugar
* Carpal Tunnel - moderate
* Before had spinal column in neck enlarged surgecally, numbness in arms
* When writing, thumb & forefinger goes numb - since college, 43 now
* Neck pain, shoulder pain, knee pain, fatigue, hand, thumb, all began in high school at least - never could sit "indian style without knee pain"
* Major WIMP at exercise since child struggling in PE, turn red, difficulty even with 45 min hard cardio in 20s & 30s to get heart beat up
* IBS started at 18
* Constipation now

knee pain usually right side only
hip pain usually right side only
basal thumb joint (both hands)
mental fogginess (can't find the word i want often)
dry eyes
ribcage (intermittent)
lower back (intermittent)
Plantar Fasciitis (intermittent)
difficulty sleeping b/c of pain in hip/knee
diagnosed only about 4 months ago after being mis-treated for osteo-arthritis for about a year (including synvisc injections into my thumb joints (OUCH!)

HLA-B27 negative

current drugs:
humira (1 x week)
Diclofenac ,
ranitidine (generic Zantac)
Percocet ,
Flexeril ,
Folic Acid ,
Vitamin D ,
Asprin ,
Fish Oil ,
depression fatigue irritability ( these are the killers hate how it takes over life)

dry scratchy eyes
dry mouth
cannot quench thirst
cracking knees which can give way at times
sacroiliac pain have been hospitalized because of it
reduced neck movement and pain
pain in spine at various times and places
trouble concentrating in loud enviroment
ears ring and vertigo at times of stress
mild sleep aponea
iritis and photophobia so that i don't like driving at night
sweats and chills
sternum flareups can be very hard to breathe
dry skin
nerves jumping and twitching in limbs sometimes hurt like a skewer poked in
feeling like a hypochondriac because there is always something
wrinkly fingernails which are ugly and prone to breaking badly
de quervains in my wrist which is bloody sore and needs cortisone injections which are bloody awful
I'm first in line for full body transplant i get so frustrated with how hard it is just to have fun, exercise, at my loss of strength and stamina

SI joint pain - moderate to severe
Hip pain - mild to moderate
Knee pain - moderate
Heel/ankle pain - mild (walking without shoes makes it worse)
Upper back - when I have a flare up, my upper back/ribs are painful
Elbows - only when I over use my arms during the day
I cry everytime I come to this thread....So far undiagnosed...I have had every symptom except the foot pain. (knock on my ever fusing spine!) Always thought,DDD and other symtoms were separate.
Like Kmallory,my symptoms are, and have always been on my right side. 6 years ago I went to a physical therapist, via a "pain specialist".....I was having SEVERE pain in my right back side, in the middle. The PT said I had adhesions, (scar tissue) from untreated muscle spasms.. The strange part is I used to be able to FEEL these "guitar string taut" muscles. It made me want to rip out that area of my back!!!!! Guess what? Those muscles have returned to "normal":). The insurance cut me off PT long ago, so that is not what "cured" me.....Oh yeah....The so called "pain specialist" dx was "fibromyalgia"!!!!! Sound familiar????? Tracy
Just curious, has anyone had ganglions??? Tracy
yes i have 2 at the moment - both big toes are blessed with these.
I have one on my wrist...a big juicy one! Have had it for 20 yrs. it comes and goes...bigger after heavy lifting etc.
OMG! I just realized what you are talking about. Are you talking about ganglion cysts? If so, yes, I have had 8 cysts removed from various parts of my body over the last 30 - 40 years! I wonder if that is something many of us have in common? I do know my dad had many cysts, but since he died when I was 6 I don't know if he would have had AS.

Yes aslee, I have had one on my wrist, currently one on my ankle...I got rid of the one on my wrist by smacking it with a book, believe it or not. I know the more you rub them it helps reabsorb a lot of the fluid....I am also wondering how many confirmed AS cases have ganglions in common!? They are definitely joint related. Sorry about your dad dying when you were so young. My dad and his dad always had "the hump" in their backs. My dad died 3 yrs. ago. I am going to get ahold of his Dr...Dad had 3 fusion surgeries..Tracy
53 Year Old Male
Not yet officially diagnosed (meeting with Rheumatologist next week.)
HLA-B27 Negative
Morphine Sulfate 30 MG – one every 8 hours
Norco 10/325 – as needed
Zoloft 50 MG - daily
L-Thyroxin 175 mcg. - daily
Prilosec 20 MG – daily
Flomax 0.4 MG – daily
Fiornal 50/325/40 – as needed

Originally had severe Champylobacter infection at age 29 in 1984 (It took six months to diagnose and treat after losing 45 lbs., and being hospitalized with severe intestinal bleeding and anemia.)

Many of my symptoms listed below started within six months after the treatment of the original bacterial infection with antibiotics.

Many of my symptoms come and go, while others are constant, but to keep things simple I will just list them all. I will list all of my symptoms whether or not I think they are related to AS, since I have seen many others here with symptoms that I share and that I had thought were unrelated to RA or AS, but who knows?

Flu-like symptoms (most of the time.) (Includes relatively minor pain and sensitivity in most of my body, especially in my joints and my skin.)
Extreme Fatigue (I’ve often told my wife it feels like I have lead in my veins.)
Constant Low-Grade Fever (99.0 – 101.0)
Neck Pain
Mid-Back Pain (between T-8 and T-10)
Lower Back Pain/Sciatica (radiates to heels-worse on left side)
Buttocks Pain
Hip Pain
IBS (Almost always have Diarrhea. Currently am constipated possibly from pain meds. Have been diagnosed with Chron’s Disease in the past, but they have recently changed the diagnosis to IBS.)
Severe Cramps (in addition to burning pain in lower abdominal area.)
Migraine Headaches (Severe)
Minor balance problems (Just recently, could be the Morphine)
Hypothyroidism (the doctors say my thyroid gland just dissolved??)
Balanitis Obliterans (little white lesions near the end of my penis that actually grew over the opening at one time. The doctor had to surgically re-open it.)
Double Hernia (Doctors suspect these may have been caused by having to push my urine through the closed opening.) I have some large hematoma from the surgery and even after almost a year, the pain seems to be getting worse.
Chronic Prostatitis (With constant pain, as well as burning during urination. Have been treated with antibiotics more times than I can count, sometimes it seems to get better, but it’s never more than a week or two before the symptoms return.)
Kidney Stones
Chest Pain (originally diagnosed with Mitral Valve Prolapse and treated with Beta Blockers for several years (hated the side effects,) but later changed Dr.’s and was re-tested…no MVP. I quit the Beta Blockers years ago, but continue to have frequent chest pain.)
Mouth Ulcers
Duodenal Ulcer
Eczema (on hands)
Seborrheic Dermatitis (on face)

A couple of things I would not have suspected as symptoms, except that I saw others had mentioned them:
Ridges in my fingernails
I have lost an inch and a half in height in the past 5-10 years.

I don’t know which was more depressing, reading everyone else’s symptoms, or listing mine. After I meet with the Rheumatologist next week to hear his treatment options, I will likely look here for the right forum for medicines to see what the collective experience here tells me about the drugs he recommends. I’m gonna give it rest for now, and will be posting in other forums later. Here’s hoping that we all have more good days than bad!
Hi there - I'm a noobie just reading the board, thought I'd put my list down too - I am hoping I dont have AS but after reading your lists, so many things are the same...

I have just been told by a couple docs they suspect I have AS. I am going for my HLA B27 test as well as MRIs of my spine and such on Feb 6. While waiting for that, I did a test of a no starch diet for 2 weeks. Things seemed to improve slightly, but not greatly. However now I am off the NS diet I feel more sore again. This could be attributed to the fact we're moving and Im doing a lot of physical work though. Its hard to say. I think I'll wait until after the Feb 6 test before trying no starch again - I am mostly vegetarian AND breastfeeding which makes it extra difficult - I was cranky and STARVING all the time.

OK, here we go!

Onset of sharp shooting hips pain during pregnancy - causing me to limp. I attributed this to normal hormonal hip changes (loosening of ligaments) during pregnancy. Doc told me to suck it up... 'preganancy isn't fun.'

At 7 - 8 months pregnant, hip pain progressed to the point where I had to use a walker. SOme days I couldnt walk at all. Again, the OB/Gyn assured me it would go away once I had the baby.

Once I had the baby (July 13th 2009, woot!) it didn't go away. The loss of weight though enabled me to toss aside the walker... but I still limped.

X rays showed inflammation of the scarolilic joints and some spots forming on the bone.

Started wearing a hip brace and doing physio. Didnt help too much and physio is expensive. I started swimming in my condo pool every day and YAY - this seemed to help. Little by little, I stopped limping. Now I am able to walk a km or more without stopping (instead of only a few metres).

A few months ago, pain seemed to leave the hips and travel into the lower spine. Numbness and pain there.

Extreme pain in tailbone when trying to get up after lying on my back. If I try to get up, shooting pains occur.

Physiotherpist noted my tailbone was curved to the right.

Stiffness in the morning - used to be hips, now its my ass. And just recently, my ankles. Goes away fairly quickly.

Have had lower back spasms on and off for years

Cracking popping tailbone and hip sounds when getting out of bed

Things that I wouldnt think were related until I read this board:

Bad night vision/tired eyes after looking at computer too long

Ridges on my toenails! Never had that before. Weird!

Was diagnosed with TMJ in my early 20s, had braces for it.

Had sore knees as a teenager. Doc said they were growing pains. My knees are the type that now predict the weather.

Feeling of forgetting words or brain fog

Other oddities I have which may or may not be related:

Recurrent bladder infections my whole life

Clicking in my throat when I swallow (on and off)

Enlarged red blood cells (had a bit of a hard time convincing my doctor this was NOT due to alcoholism - the usual cause - she thought maybe I was lying to her about not being a boozehound. I was vindicated when I got pregnant and after 9 months of no daily glass of wine, I STILL had enlarged red blood cells).

Sensitivity to caffeine - would bring on anxiety attacks (so Im a decaf girl now)

Things I DONT have (which gives me hope, that maybe I dont have AS) are... no bowel irritation, no insomnia.

I would like to hear any feedback on my list - or if any of my 'oddities' make any sense!

`Upper back/neck pain and severe stiffness (worse right after getting up from bed)
`Mid back pain
`Poor posture and much difficulty learning to sit up straight
`Lower back pain and stiffness
`Buttock pain/ SI pain
`Sensitivity/pain to touch
`Mental fogginess and confusion
`Wrist pain (so severe sometimes that I drop things)
`Finger cramping/locking when cleaning
`Foot pain (mainly heels and balls of feet)
`Shoulder pain and discomfort
`Nausea (a more recent symptom)
`Dry eyes
`Ridges in nails
`Dry mouth
`Very dry skin
`More difficulty with deep breathing
`Light headedness
`Difficulty getting up after sitting/lying down due to stiffness
`Almost everything on me cracks and pops
`Exercise helps sometimes but seems to make pain much worse at other times
`Pain and "popping" in jaws that is intermittent
`Mouth and jaws always feel tight
`Difficulty with relaxing muscles and never really feel relaxed or rested
`Severe cramps in calves of legs (don't know if this is related or not)
plantar fasciitis
sacroilliac pain
constantly cramped rotators (lower butt)
episodes of extreme fatigue and ringing in ears
burning and tingling in calves and legs
Spine(cervical/thoracic/lumbar) pain(Neck biggest problem)
Jaw pain
Right hip pain
Right knee pain
Bilateral shoulders
sternal pain
Stiff fingers/toes
Planter/Palmer fascitis
enthesitis (widespread)
Chronic diarrhea ? irritable bowel
muscle fasciculations in legs
Brain Fog
reading some of the previous lists, i to have ganglions in both my wrists
bilat. hip/groin pain
knee and ankle pain
stiff and very sore lower back
neck "crunchy" cracks a lot when i look up
rib/chest pain
left shoulder pain
bouts of iritis and "fuzzy" vision
"foggy" memory and thinking
extreme fatigue
headaches, often
tmj-jaw pops while chewing, cracks loudly when moved side to side
slumping feels more comfortable that sitting up-right

according to my rheumy....
c4-c5 very close together
bone spurs on a few of my other vertibre (don't remember which ones)
sl joints separated, not divided by a "crack"

i think that is all....
Well lets see....since I have been taking Enbrel some have my symptoms have decreased. BUt here are the ones I can think of right now:
1. hip pain (this was horrible for years until taking Enbrel)
2. rib cage pain (it used to hurt to breath, cough, sleep....it isnt gone, but it is better w/Enbrel)
3. fatigue all the time!
4. sleep deprived
5. anemia
6. LBP
7. hx of iritis
8. neck pain (which has also somewhat improved w/Enbrel)
9. Calcium and vitamin D deficencies
10. chronic chapped lips
11. restroom troubles
12. very dry skin

I am still young, but everyday I hope and pray this is as bad as it will get, I was so miserable before I was dx, and now I have somewhat gotten my life back and I hate that it may get worse. I pray everyday for a cure or remission. I don't have kids (well do 4 legged ones count?), but I hope everyday that when I do I will not pass this condition down to them. I would hate that for them.
pain so bad that a trip to the emergency room for a shot of morphine and muscle relaxant
I may as well add to this list.

This is my first post in a long time. I have been absent from these forums for a long time.

I just wish those of us who suffer from this disease could take such a long break.

;The usual pain and stiffness upon wakening (60 minutes or more)
;lower back pain.
;Middle back pain.
;upper back pain. These three usually do not occur at the same time.
;Neck pain (pressure that feels like something is constantly pushing it forward)
;pain in my shoulder blades
;pain in my elbows (sometime one, sometimes both, but usually my left side gets most of the pain)
;pain in the joints of my fingers.
;pain in my hips (usually my left side again, but it has been known to move over to include my right hip...{isn't that nice of it?})
;When I'm in a severe flare-up I don't get very much sleep.
;very limited chest expansion (less then 1 inch upon taking a breath)and occasional chest pain.
;knee pain (usually after a repetitive exercise)
;stiffness and a heavy feeling in my left leg (usually the lower part, but in a flare it affects the whole leg)
; occasional pain in my toes. (usually during a prolonged walk)
;short-term memory loss.
The list from here on in goes on and on, but they may not be associated with AS, so I will stop here.
As with most people with AS.The main symptoms, as you can see, are PAIN & FATIGUE
i have listed my symptoms already above, but i did forget to ask a general question....
i don't know if this is AS related, or something else. for the past year, my right ear has had fluid in it. i've been put on antibiotics for an ear infection (according to my general pract. doctor), but it doesn't seem to get rid of the fluid and has never gone into a full blown ear infection (i don't think i've ever had an ear infection in my life). i get sharp pain once in awhile in my right ear and i get bouts of dizziness, complete room spinning dizziness. so, my question is....has anyone else had anything like this, or heard of any ear problems associated with AS?
thanks all, jennifer
Well I guess that I can add TMJD to my problems. My jaw has always had days where it hurts, but my dentist told me that it was dental related. But the past two weeks it has hurt so bad that I cant open my mouth all the way and I have trouble when I am eating. I googled that condition cause someone at work told me about it, and come to find out that people with my condition commonly get it. How nice.......
Jennifer - I had glue ear as a child and had to have a drainage tube put in one when I was about 8 (following an ear infection) but I often feel I have fluid in my ears

here is a fact sheet about glue ear in kids fyi
1. Worst is the S/I pain I walk doubled
2. low back pain especially L3 L4 and L5
3. Hip pain Bilateral Ouch...I want to cut those hips out sometimes... just to get rid of the pain
4. Pain in neck and back of head including weird headaches
5. FATIGUE most of the time....my eye lids just do not want to stay up
6. Shoulder pain, bilateral, so bad I cannot use my arms at times
7. Sternum and ribs mild to moderate pain coming and going at times very painful attacks
8.Some thoracic pain
9. No real Bladder control due to nerve damage. Sometimes my feet go numb or "pins and needles"
10. Foot Pain comes and goes Days like to days I cannot walk.
11. I do not want to be touched especially not around joints.
12. Pleurisy coming and going and issues with the lining of the lung Breathing shallow
13.Jaw pain and hearing issues due to mechanical blockage caused by swollen jaws.
14.Vertigo caused by 13 probably
15. Arrhythmia
16.IBS BUT it has gotten a lot better since I completely quit starchy foods.... I do not eat bread, pasta, rice, potatoes etc.
17. Ankles

I do not have pain in knees more than mild pain at times seldom bilateral.

Oh of course.....
I often have memory loss lately.
I am woman 45 years old.
LOL! I'm down at my local shopping centre, I came here to buy something.... now WHAT was it???? I know which shop it was from, I stood at the entrance for about 5 minutes..... no still can't think what it is, I will remember when I get home!
another 45 y.o. woman :-)
i am new to this web site and have never posted before. pleae excuse any mistakes i make and let me know what message board i am supposed to be on to ask this question...... i have a fully dialated right eye. this is the 2nd time it has happend and my optomitrist can find no reason. i have had one bout with iritis. my doc says this is not related. anyone out there have any advise/experience.

I would post this as a "New Topic" in this forum, the "General Message Board."

I have no experience with a fully dilated eye or iritis, but I think someone with spondy disease and a history of iritis should be seeing an ophthalmologist (an MD) rather than an optometrist.
have beeb referred to md before. there is not an md in my town. from a small country town. the od i see is very good and vry thorough
*AS w/ recurrent iritis - pain the worst in lower back, heels, hips, ankles, wrists, knees, neck
*polycystic ovarian syndrome
*metabolic syndrome
*high blood pressure
*high cholesterol
*insulin resistance that has now turned into type II diabetes-central obesity
*horrible crushing FATIGUE, feel like i have the flu most days
*headaches, used to get migraines before starting HBP meds
*mild TMJ
*losing inches

after reading other posts, here are some issues that i thought were unrelated:
Bad night vision/tired eyes after looking at computer too long
brain fog
ridges on nails
sensitivity to light
tingling in limbs

my diagnosed issues:
*AS w/ recurrent iritis - pain the worst in lower back, heels, hips, ankles, wrists, knees, neck
*polycystic ovarian syndrome
*metabolic syndrome
*high blood pressure
*high cholesterol
*insulin resistance that has now turned into type II diabetes-central obesity
*IBS - diarrhea
*horrible crushing FATIGUE, feel like i have the flu most days
*headaches, used to get migraines before starting HBP meds
*mild TMJ
*losing inches

"buy you don't look sick" no one can imagine how bad i feel and when they say stuff like that to me i want to cry...i've been in pain for 20 years and was just diagnosed w/ AS last year, I'm 32

27 Female, diagnosed with AS by a rheumatologist about 6-9 months ago. No longer on insurance, so am not currently going to rheumy. Start having severe shoulder, upper right back and arm pain over a week ago. Have had it before, but hasn't lasted this severe. Have had it in both arms / shoulders actually. Almost feels like pinched nerve or deep bone pain. Given prednisone and vicodin for pain, still isn't any better after several days of treatment. Any advice?
It could be originating where the tendons join on to your shoulder blade, physiotherapy will help, or swimming and stretching exercises in a heated pool.
My first post, but here are my symptoms -

1) Hip pain, right hip and leg (this is what lead me to the doctor) diagnosed as sciatica/mild bursitis (leading to further diagnosis of AS)
2) Extreme fatigue (comes and goes, though)
3) Pain and swelling in right ankle and knee
4) Right leg unable to support own weight on occasion
5) Severe back spasms in shoulder blades, relieved by complete immobilization and lying flat (longest spell lasted 5 days)
6) Stiffness after sitting
7) Cramps/spasms in right lower arm/hand
8) Red burning eyes with discharge overnight, blurred vision, spots in eyes, photophobia, severe diagnosed thinning of the macula with a rupture to the right eye macula, probably not Macular Degeneration as has been stable for over 6 years now (I just put all the eye stuff here)
9) Noticeable weakness in right arm, sometimes unable to lift a coffee cup (thank god I am left-handed)
10) Noticeable limp in right leg, need to use cane/walker intermittently
11) Night leg cramps/RLS
12) Diagnosed with asthma about 10 years ago (is that part of this?)
13) Extremely low thyroid function, diagnosed over 30 yrs ago, on meds for 30 yrs
14) Tinnitus, possibly from pain meds?
15) Periodic pins & needles/numbness in hands and feet
16) Night sweats with elevated body temperature on occasion
17) Depression from writing out my symptoms
Hi Mitzy, I'm in Perth too and I get the shoulder thing - I think it starts where the tendons join on to your shoulder blade. It's Arthritis Awareness Week here, I haven't seen much publicity at this stage though.......
achilles tendinitis, plantar fasciitis, inflamed left knee, sacroiliac pain, infammation and mild fusing , left hip pain with pain radiating to left leg with buzzing, burning, heaviness worse at night. right hip pain, hx of costochondritis, thoacic spine pain, cervical spine pain of long duration with osteoohytes, pain radiating down right arm intermittently. Several bulging, herniated, and torn discs in lumbar spine. left eye pain (went to an opthamologist who said it is not AS related) hx tendinitis both wrists, elbows. Also dx with fibromyalgia.
I can't take anymore. I have had fibromylagia for 14 years and about a year ago got horrible pain in my heels. Had steroid injections but they quit working and had surgery Feb. 5th on right heel. Still hurts and now have achilies pain. HLA-B27 positive but no formal diagnosis.

low back pain
neck pain
but pain that goes down both legs
stiff everywhere
knot in muscles
very sore knot on left chest bone
bad pain between shoulders
tendenitis in elbows
headache for 3 days after physical therapy
hard to breath because it feels like i'm having a heart attack
can't sleep without sleep meds
don't want to be touched (people have patted my back and I end up in floor)

I work full time because I need my insurance and money for drs.

I have been crying all morning because of the pain and no one understands. My dr won't geve pain med. I was on lortab for 3 years and quit cold turkey because my dr. closed her office for her own health problems. Been off for over a year but it has been the worst as far as quality of life. This is not living, this is going through the day just trying to get to tommorow so I can grow old and die. I want to enjoy life and I can't. I am so sick of this.

Anyone know of a dr. in Ok that is understanding and will help with the pain.

Meds are mobic, welbutrin, tizanadine, and ambien cr.

burning, numbness, tingling, in hands and feet
rib cage and sterum pain
severe pan in lower spine
recurring sciatica
About three inches of burning pain on spine just below top of shoulders
loose joints in neck, lots of joint "cracking" when moving head, starts to hurt after a while then heals
hip pain, mostly on my left side
knee pain, worse on left side
heel pain
extreme fatigue
inflammation in eyes ( episcleritis )
pain in shoulders and between shoulder blades
pain in elbows
small genital lesions
mouth sore from time to time
pain and inflammation in left ear
sit indian style with feet facing up in chairs for comfort, lower spine curved slightly forward
herniated stomach under left lung
endometriosis mild
hysterectomy at 29 for pelvic congestion (unexplained inflammation)
interstitial cystitis (bladder pain)
kidney stones
social inept, depressed sometimes but focusing on being happy
sometimes trouble breathing, pleurisy for almost a year, better now
low grade fevers
sometimes left leg gives out when walking (goes limp)
under active reflexes in lower extremities
significant, rapid weight loss due to difficulty swallowing for several months, has not happened again. Now over weight for first time, due to lack of exercise and medications.
sometimes rash on forearms
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 04/01/09 02:01 PM
welcome rabbit, please write a post on the general forum. you must be exhausted with all the goings on. you have found the right place, so many of us have these symptoms. i am so sorry you have to be here, please write more, and ask questions. folks just are really compassionate and kind here and we welcome all newbies, we have been there. read the "for patient" tab above and start keeping a daily pain, meds, and symptom diary. it really helps to keep for your docs. when were you diagnosed? well, write back on the main general forum. welcome. all our prayers and peace, sequoia
welcome rabbit and mrye, yes lots of people share your symptoms

mrye - did anyone PM you about a Dr in OK? if not, make a post to the main forum
Wow. I have had simular symtoms on and off for the past 5 years. Yet so far no diagnosis. And here I thought I started falling apart with my 2nd bout of uveitis 3 months ago. My current symtoms are pain all day but really at night. Stiff neck. Hip pain both hips. Center of back pain. Swollen ankle for 3 weeks. Uveitis was treated but back again. Chest and rib pain. Hurts to laugh, cry, hiccup. Forget sneezing, my body did. But threw out the years I had stiff joints at night for months at a time. Severe pain that they thought was endo but I didn't always bleed heavy and it went away. And severe back pain on last(4th) pregnacy. But they were always dismissed and almost forgotten when they left. Now my symptoms demand all of me.
I think my list mirrors a lot of other lists:

*Intense body aches and pains when I stand or walk very slowly for an extended period of time (over an hour, sometimes less)

*Wake up most mornings with my neck feeling like I slept wrong

*Pain in fingers sometimes

*Lumbar pain in center of low back (some of it might be related to my bulging discs and not the AS)

*SI joint pain, bilateral

*Really bad, sharp pain in the buttocks (especially on the right side) when I stop taking NSAIDs and miss more than one day in a row at the gym

*Fatigue...lots of fatigue during the day and in the morning

*Hypermobility in some joints, leading to instability and pain

*Knee pain (might be due to bad feel--I wear orthotics)

*Pain in right side at natural waist, hurts there when I lean to the left and sometimes when I'm laying on my right side in bed

I get other pains here and there but with some pain it's hard to tell what's related to AS and what's unrelated.
back pain
bad hip pain
buttock pain
joint pain in fingers and toes
Reynaulds syndrome
Red eyes
tingling in legs
Hi Kelly, you symptoms sound like me, I'm 71 years old and have had so many symptoms through the years, starting with colotis when I was 9 years old, surgery for diverticulitis, back surgery, neck surgery and both shoulders have been operated on. After all these years I finally found a doctor that pulled it all together. Lately I'm suffering with tendonitis in my elbows and such pain in my hands I can't sleep at times. But strange as it seems I feel relieved to have found this doctor and she has a plan, so I'm optomistic for the first time. I'm currently trying suflaasalazine but the side effects are very difficult to tolerate. I'm sticking with it until I see her again, I've decided I'm my first priority right now and other stuff has to take a back seat.
I am 33 yo female with the following symptoms:

Low back pain, stiffness worse at night and in am and after periods of sitting or lying down
responded well to nsaids had to stop them due to gastritis
now in a great deal of pain

SI tenderness on exam...decreased mobility in lumbar spine on exam
h/o plantar facitis, knee tendon issues, neck disc degeneration with bone spur formation

but...xrays were normal

MRI next week...if radiology tests are normal could I still have spondylitis?

My rheum was positive and then got the xray of si joint and said well not sure now

I really need help to know how to pursue

sorry one last thing...I have colitis...which I guess is related somehow
al1, you might want to start another thread in this forum to get your questions addressed. Basically if your SI x-ray didn't show inflammation you don't fit the AS diagnosis, however, yes you could still have something like undifferentiated spondyloarthropathy.
Stiffness throughout the body by welding of the vertebrae, such as a bamboo cane
Chronic pain in the cervical area
Hip pain has disappeared after hip prosthesis implantation
Cold sweat with a feeling of desmallo, usually lasting several hours, during periods of peak activity of EE
Daze all day to take anti-inflammatory drugs

Greetings from the Basque Country

Rigidez de todo el cuerpo, por soldadura de las vertebras, como una caña de bambú
Dolor crónico en la zona cervical
Dolor de caderas ha desaparecido tras implante de prótesis de caderas
Sudor frio acompañado de una sensación de desmallo, suele durar unas horas, en periodos de máxima actividad de la EA
Aturdimiento todo el día por tomar medicamentos antiinflamatorios
Un saludo desde el País Vasco

Oh where to start whistle There are so many some days.

* Deep, aching pain in both buttocks
* Terrible pain when getting out of a chair if I have been leaning backwards (past vertical)
* Shooting pains down either leg
* Aching in the hips
* Inability to stride out when walking and on bad days, have difficulty ambulating without pain
* Pain in the cervical and thoracic spine. When standing too long without moving, strong pain in thoracic region that feels like pulling
* Body stiffnes - when doing stretches there is lots of cracking and noises
* Soles of my feet hurt and burn when standing too long
* Headaches
* Some mornings have to be helped out of bed and can't turn over in bed without pain
* Tiredness and fatigue during the day
* Bad leg cramps
* When walking, feeling very unsteady on my feet and contemplating using a cane when on long walks. Difficulty walking downhill particularly in bushy areas where I can't see the ground very well
* Difficulty controlling my temperature. Feel feverish a lot of the time
* Cannot rise from a laying position without twisting my body around first
* Restlessness in bed

Trying hard not to take anti-imflams and attempting to control it with diet, exercise and pain meds as required; however, am in pain all of the time.

This is the first time I've ever put my symptoms down on paper and I'm shocked. I'm still working full-time but every day is a struggle. In 4 months I'm going on a holiday for 7 weeks around the world. I have a massive task ahead of me to get fit and ready for it. I'll be trecking through Jordan if it kills me plus a gazillion other things I've booked that will test me to my limits....hope I survive.

I'll either be coming home with a Gucci bag or in a body bag haha
Good Luck with the travels.. I have to say that I have found many difficulties trying to travel these days.
With my pain and difficulty walking.. I really have to pace myself with traveling.
I find myself doing alot of "people watching" do some and sit some.
I certainly hope you come home with a gucci bag... for heavens sake.
During the last long two and a half week trip I planned I spent at least 2 of the days in a down state. It was certainly needed.
I was wiped out.
Enjoy your travels..
Awww thanks Maggie. I'm so excited I could burst. I'm blessed beyond belief that I don't have to sit in coach/economy on the flights so I can lay down flat if I need in my seat. I'd never be able to do it in coach whatsoever so here again, it's costing us a fortune so I can travel. I'm only 40 and it's embarassing to think I just couldn't make the long-haul flights sitting upright cramped in those seats. I'm determined to have a ball though :-))
I am currently taking plaquneil,humira (every 10 days and have only had 1 shot so far,anyone on this and how is it going ) predisone but weaning off of it due to hardening of the arteries,liprisol,procardia,imuran,gabapentin,some antibiotic for 6 months,buspar,xanax as needed and norco as needed...supplements fish oil,vitamin e, mulit vitamin,c-q10,1200 ml of cacium with vitamin d....i have been diagnosed undifferentiated connective tissue, she believes either AS,RA and trying to rule out lupus...i was diagnosed a year ago in feb and its been a rough ride...right now, im just trying my best to stay positive, praying something will work, praying i can still work, right now im intermitten fmla...just found out also i have obstructive pulmonary disease....quit smoking and never was a heavy one go figure, does anyone think this has to do with my disease ? would love some feedback on that and the hardening of the arteries...ill be 43 this saturday...
I figured something was up in october got up one morning and felt like i couldn't walk, my husband helped me to get up and i felt so embarrased seen like 6 doctors and none of them had any idea. I stayed in pain for nearly two months until they sent me away i live in australia and went to see a specialist in feburary walked into his office and he knew within 30 minutes that i has spondylitis.

I was saddened when he said there is no cue just have to learn to live with it so have been for the last 2 months taking medication and getting uncondition support from my husband but my parents still can't understand that i will never be back to my 100% anymore and have so many limitations now. Im only 26 and am trying to be optimistic about life but have days when i hate myself and everyone around me if anyone has any advice for me please don't hesistate to tell me.

My symptoms are:

- lower back and upper back pain
- sore elbows and wrists all the time
- sore legs have a slight limp to my right now which i never had before
- shoulders are regularly sore
- soles of my feet swelling to my feet everyday
- sore jaw have some athritis in my jaw area
- fatigue all day
- pelvic pain
-stiffness every morning even with dugs still stiff
- knee pain

I can't work anymore and bums me out because i love to work please let me know how you live your life and if anything besides medication has worked?

I wish people would unerstand

Diagnosed since 01/09

low back pain
muscle weakness
leg weakness
unable to walk for more than 1 hour
blured vission
eyelid inflamation
right shoulder blade pain
right hip pain
right knee pain
right arm pain and inflamation,
brain fog (comes and goes)
right buttock pain
right groin pain, bursitis
memory loss
flu-like body pain
ligaments pain
ribs pain
neck pain

on nabumetone 750 mg twice a day

-neck stiffness
-foot swelling, throbbing, around ball of foot and 2nd toe
-heel pain
-hip pain
-stiff back
-collar bone hurts(costocondritis)

-neck stiffness
-foot swelling, throbbing, around ball of foot and 2nd toe
-heel pain
-hip pain
-stiff back
-collar bone hurts(costocondritis)
At 65 I'm still learning, I'm wondering now if the neck pains which result in noteworthy head pains are a part of the AS or some other cause? At this stage of experience (being old) my as flare-ups usally center in the upper spine. As long as I don't "jar" or "shock" my frame, at this stage of life I feel grateful to not continue to have the SI as bad as when a 40 yo.

If you know about the neck/head thing please post. thx
Iritis twice
Chest pain

Trouble breathing due to chest pain
Heel inflamation both feet
Neck stiffness
Stiffness in upper back
Knee pain - was catcher in baseball when i was young
Scalp itching psorisis
Clicking bones in the feet
Shoulder pain
Snaping or clicking in spine when twisting

Long-term history, since mid-teens, of Reynaud's disorder and hip pain - classified as bursitis, never fully went away but wasn't overwhelming, either - about a dozen persistent floaters in both eyes, hearing loss.

Starting fall '08 (age 31):
-lower back pain, worst with long periods of walking slowly or standing
-stiffness/ache during sleep or when lying down more than a few hours
-increased hip pain, particularly at night
-worsened Reynaud's symptoms (cold/tingling fingers and toes, prone to frostbite)
-increased tinnitus (possibly due to medications)
-constant need to stretch/bend forward when standing, which hurts but feels really good at the same time
periodic neck stiffness~overall body aches, flu-like feeling~stiffness in fingers,especially in the morning~overall body stiffness~pain in heels~knee pain~mild back pain, especially after periods of standing~night sweats~wrist pain~

Okay, this is weird and hard to explain but maybe someone else can relate. You know that feeling you get when someone scares you or you are suddenly awakened by a bad dream? It's kind of that fight or flight feeling where your whole body is sort of alive and electric? That's me in the middle of the night. It's not necessarily painful, just annoying. Could it be AS related. I don't know. I don't know anything anymore.....
low back/hips/SI pain/stiffness; wakes me up from sleep; gets worse after standing/walking 15-20 minutes, SI gets worse with prolonged sitting
pain/stiffness between shoulder blades
shoulders (calcifying tendonitis), elbows, knees, wrists, fingers stiff/painful - not necessarily at same time or on same side
cervical/neck pain
HLA-B27 positive; female; dx 2009, symptomatic since late teens
son dx with AS at 12 y/o in 2005; HLA-B27 neg
When you say tingling - what do you mean?

I have tingling and numbness in my left arm/fingers and it drives me crazy. Sometimes in my left left and toes as well.

Also -- Brain Fog -- tell me what you mean by this? I keep getting this overwhelming pressure that seems to go up my neck into my head -- it doesn't really hurt (I have migraines a lot so I guess compared to that it doesn't hurt) - just feels like weird pressure and kind of freaks me out. Is this what ya'll mean?

My symptoms have always included hip pain, joint pain, inflamation, iritis, skin rashes, stiffness. Now, I have all of these issues and have pain in my middle back on my lower right rib cage.

forgot the positive HLA-B27
To name the most significant......
Hip/tailbone pain
lumbar pain
neck/back spasms
hand/knee/ankle swelling
night sweats
extreme fatigue
coordination problems
muscle twitching
eye burning
I am on Humari, Methotrexate, folic acid, vitamin D/C, oxycodone prn, valuim prn for spasms, and ambian prn. Jessica
Some of the more unusual symptoms we think are linked to AS.

My husband had AS he never spent much time on the computer but I joined on his behalf a few weeks ago and as of yesterday he went home the God. We were together 32 years so I felt a lot of his pain. He went to the doctor a lot and had a lot of conditions, not sure if they were AS related but wanted to throw them out there to see if anyone else ever had the same or if they may have been related to one of the other bad genes he got from his parents.

At about 45 he started getting * severe stomach pain ** with exercize, especially after eating. The only thing that helped was for me to press in a clockwise motion with my fist (using all my weight). No one ever was able to tell him why even after removing his gall bladder and taking dozens of test by multiple specialists. At one time they diagnosed him with prophyria then after more thorough test said he didn't have it. We suspect now it had to do with a reaction to starches related to AS.

He also had **high blood pressure** and **high cholestrol**. It seemes that every medication they gave him for either gave him an allergic reaction, either hives or mouth/throat swelling, especially statins, calcium channel blockers and either alpha or beta blockers. His mother seemed to be allergic to everything as well she had it too.

As they started to treat his blood pressure and cholestorol they prescribed something, not sure which that seemed make him an insulin dependent diabetic. Then when stopped taking some of those drugs, his diabetes went away. At home sugar tests three times a day 80 - 120 range.

About 10 years ago he began to have panic attacks, think it may related to reduced lung functions.

BTW he always said marijuana also helped his symptoms.
Sure you guys are ready for this?
Back started to curve when I was 11 (should be 6`4 but I am 6` now)
Lumbar 1 thru four are fused as well as Cervical neck 4 thru 6.
Extreme Kyfosis to the point where my heart and liver are dislocated I think they call it sinusitis invertis?
Pain all the time but it moves around cant wait to see where it will be tomorrow.
Red eye and crusty stuff in the eyes when I get up.
Rib pain
Shoulders hurt all the time, had one cleaned out but it didnt help.
Feel like I have the flu ALL THE TIME!!!!!
But all the above is nothing compared to this one.
Lungs are so scared by AS that now I need to have the upper lobes removed to save the bottem from Bronchiectasis (cyst in the lungs)and Aspergillosis (a fungus)and Sudomonus(a very nasty infection)

Has anyone else had scaring in the lungs? if so I would like to hear from you and see what kinds of treatments you are having.
Back pain and spasms, hip, SI joint, groin, knee, ankle, shoulder, elbow, hand, & foot joint pain. Plantar fasciitis, Achilles tendinitis, heel bursitis, fatigued and "flu-like" feeling most of the time, cold sweats, chills, uveitis in both eyes, chostochondritis, inflammatory asthma, pleurisy(3 times in past few years), clicking, popping, locking joints... I could probably go on and on and on. You get the picture. B-27 pos, SED rate in 40's to 80's( fluctuates with flares).
hay im just pulling out of a evil two week flair thank god im going to say it was the worst one yet do they get wors as it progress or you just never know ?
You never know ...when ..... where.....how long..... And the big question................................. WHHHHHY!!! lol. hmmmmmm sorry dont think theres an answer to that and everyone is different. But on the other hand Id say there is no real reason to believe that its a guarantee that that would be the case.
Please keep healthy and active and that can help.
I never knew what the hell I had for 22 years.
It started with an episode of hip pain in the right side. I was active in a few sports and I assumed I pulled or strained something. The orthopedic doctor took x-rays and were negative so it was a strained ligament around the hip most probably. I was prescribed an NSAID. After about a month it got better on the right side but damnit the left side began acting up. I went back and he looked at me like if I was crazy. He told me to take some ibuprofen that it would get better.

Since that time I have had bouts of lower back pain of and on for 22 years in which I just got me a nice heating pad, some ibuprofen and the ice pack and treated myself. There was no sense in paying someone to call me crazy again. I did however visit a chiropractor for a couple of years, til the insurance stopped paying for them. In asking for copies of his notes for my first rheumy appointment, they clearly stated SI Joint dysfunction as a DX. He was close.

I have had one bout of uveitis. Most of my pain seems mild to what you guys have posted til this last year. Then something happened and my god I felt like a painful rusty tin man every morning. It had become a ritual to take a nice hot bath to loosen me up in the mornings. I had total strangers asking how did I hurt my back. I had developed a hunchback. My dull ache pain was radiating from mid lower back into my hip area and then into the groin area. I also a new area that this time. My shoulder/neck area stiffened badly. I decided I had to go to the doctor. I had performed a WebMD symptom checker and it got it right the first try. I kind of scoffed at the result because I had joked with the doctor that if you type in headache you get a DX of brain tumor as a top result.I couldn't possibly have this disease. WELL tests were run. ESR 42 - RF neg - ANA neg and omg HLA-B27 pos. X-rays and an MRI later with a trip the a Rheumy: Ankylosing Spondylitis.

Oh PS: Since my last episode, it seems my body has become musically inclined with every snap crackle and pop from my joints.
welcome to OUR worl. Sorry but truly....welcome
Originally Posted By: taberge
.......Then something happened and my god I felt like a painful rusty tin man every morning........

we've all been there taberge frown
thank you
What do the symbols on your tattoo mean?
HLB-27 negative
Sed Rate 44
No diagnosis yet
being treated for ReA (USpA)
started about 3 years ago--maybe longer

Started off with lower back aches... then lower back stiffness.
Slowly climbing up the spine which effects my ribs as well.
swollen fingers especially in cooler weather.
sometimes ankles swell
sometimes heel pains (both)
sometimes knees (alternating)
sacroiliac joints sometimes gives pain
lung irritation
eye irritation sometimes
sciatica sometimes
wrists sometimes
jaw (effected it twice..right side only)

I am responding well to 2 500mg Naproxen a day.
tried sulfasalazine (seemed to help fatigue)
If I do not take the 2 Naproxen a day (god help me!)

I find that the worst part of this disease is not so much the pains BUT the fatigue.

I keep my chin up, and will not allow depression a part of my life.

My daughter has just been diagnosed with Spondylitis. She will be 15 on the 13th. Here are her symptoms.

1. Pain in Right hip that moved into Left hip and across lower back.
2. Muscle weakness in Right leg.
3. Feeling like she is frozen, hard to get moving.
4. Constipation and now diarrhea.
5. Extreme Fatigue
6. Shoulder and wrist pain that come and go.
7. Pain across her chest that comes and goes.

Symptoms began suddenly in February and she has just now begun to get relief in the last week. Naproxin and Physical Therapy have really helped. Her gait is not the same as before? Does anyone else experience muscle weakness?
Originally Posted By: missmuffet
3. Feeling like she is frozen, hard to get moving.
5. Extreme Fatigue
6. Shoulder and wrist pain that come and go.
7. Pain across her chest that comes and goes.

.... Naproxin and Physical Therapy have really helped. Her gait is not the same as before....

Hi Miss Muffet, I'll just answer a few of you questions based on my experience

re #3, the stiffness is common i AS, especially in the morning when you first wake up, or after other inactivity (e.g. a long drive in the car)

#5 fatigue is very common with AS (and other auto-immune diseases)

#6 shoulder pain is fairly common in AS (and in my opinion maybe more common in women than men), as well the hands , wrists and feet can all be affected - not just the spin and SI joints

#7 this could be from the ribs - also common in AS, can be extremely painful, especially when the cartilage that joins the ribs to the breastbone is attacked, the first time that happened to me I thought I was having a heart attack, the ribs can seize up so much you cannot expand your chest fully (this is me)

Naproxen and physical therapy including hydrotherapy have really helped me too smile the exercise and stretching is VERY important!!!!! your daughter has to get into a routine of stretches EVERY DAY to help her stay flexible
massage also helps the muscles to stay supple

my gait is good at present, but it can be quite uneven - this usually means one hip or SI joint is seized up more than the other, or one side of my butt has a huge muscle spasm, it makes me feel quite self conscious when I can't walk in a straight line
heel pain and heel spurs
shoulder pain and stiffness
pain in knee tendons
pain in toe joints
pain and weakness/degeneration in ankle tendons
hip pain
burning pain in upper hamstring area, just below buttocks
occasional low back pain
occasional wrist pain and finger swelling
possibly related: calf swelling, sudden aspirin allergy, hand eczema, rosacea/eczema on face
My spine is totally fused from neck to hips. Both hip joints fused.

1 Neck pain severe
2 Lower back pain more on left side due to broken fuses from kidney stone surgery
3 Left hip joint pain severe right hip not as bad
4 Pain in both knees
5 Blurred vision and eye pain
6 Arms feel numb and tingling in my fingers at times
7 Elbow joint pain
8 Stiffness in both my ankles
9 Trouble Breathing curved spine crushing my air way
10 Head aches pain seems to be on sides of my head temple region to my ears
11 Chronic kidney stones
12 Chronic fatigue
13 Shoulder stiffness and pain
ouch!!! NOw thats the explanation of severe!!

  • Iritis (6 to 8 times the past 5 years)
  • Morning stiffness
  • Sore lower back (almost impossible to lay down)
  • Sore hips/pelvis
  • Stiff/swollen hands
  • Swollen ankles
  • Generally tired
  • Sometimes feel flu like/low fever & chills

I didn't realize until recently how much I accepted feeling tired and stiff as part of growing old and how much it affected my life.

I am just being officially diagnosed after 6 years or so of symptoms and hope to get better soon.
HLA-B27 Negative
Dx JSpA, radiographs enough to diagnose AS

- X-RAY/MRI confirmed sacroiliitis, worse on the left, significant erosion
- Joint pain in my knees, hips, elbows, hands/fingers, shoulders
- Lots of joint cracking
- Ulnar nerve pain from the arthritic changes in my elbow
- Bursitis, both shoulders
- Tendon inflammation, including a rupture of my plantar fascia
- Foot and heel pain
- Fever (when sacroiliitis flares) of 100, 101 degrees
- Morning Stiffness
- Chest wall inflammation
- Frequent infection
- Pain (Hah, should I even bother listing that! Duh!)
I have AS. My symptoms:
Extreme leg pain
Neck pain
Right rib cage pain
Pain right thigh up into groin when walking(very painful)
Pain in heels of feet & ankles
Swelling ankles
Pain in hands
Shoulder blade pain
Trouble walking
Sacroilitis(Pelvic Inflammation showing on x-ray)
Low back pain
Stiffness, especially in morning and at night
Changes in vision since diagnosis
Severe Fatigue
Trouble concentrating
Trouble with Memory
Abdominal pain
I think that's it but it is hard to remember everything. These are the most prevalent to say the least. Hope this is helpful.
My List:
Chronic intense SI joint pain especially after standing for long periods
stiffness a.m. and p.m.
leg numbness
shooting pains down leg and sometimes into gut area
foggy head
head buzzing sound inside
Chronic pain is of course causing me to think of the pain a lot of the time, very distracting.
Had as for probably 15-20 years. No doctor could figure it out. Finally diagnosed 4 years ago
Have been taking Indicin for 4 years and now it's causing all kinds of health problems including headaches, facial swelling, flu like symptoms, nightmares. Bummer, because the stuff worked great. Tried Aniproxin, did the same thing but not as bad, but couldn't take it. Now I'm off everything for 2 months except tylenol and other pain meds as needed. Feel really trapped. Had a bad session with my rhuemy today, he was rushed, impatient, and "testy". Told him it felt like someone was sticking an ice pick in my hip and he just looked at me. I'm looking for a new doctor. Sigh.
Has anyone has success with manipulation or one of those inversion tables?? Thanks Jon
If fusion is present you dont want to break the new bone growth or youll be in pain. I wouldnt really reccoment inversion but i do like the little table traction devesis for my neck it helped to get the nerves un pinched. PT is good. Massage feels good. And some people like accupuncture but tottaly chiropracters are never reccomended (especially if fusing present)
Is it possible the buzzing (ringing) in ears is from too much tylonol??
the first 4 symptoms are classic of AS but the rest no. keep looking for the right med combination thats right for YOU. We all have different combinations for the most part.
Thanks NW, I think the ringing may have been from the meds. I like the traction idea, to help relieve some of the pressure from standing. I'll look for something that might work. Thanks! Jon
just make sure you know you fusion levels!!!! fusion can be present in areas that no longer have pain and may just be in a small area. It can be very painfull if you break that section more so than it is now!!! even with extra bone spurs you dont want some rubbing each other and breaking off.
  • Fused SI and Lumbar
  • Overwhelming fatigue
  • 24x7 pain/stiffness: Entire spine, shoulders.
  • On and off pain/stiffness: Feet, knees, hips, fingers
  • IBS
  • Aggravated Aspergers symptoms (esp visual and auditory sensory overload)
  • Tinnitus
  • Probably unrelated: Eales Disease in one retina

I started reading the forum about 2 years ago when I was diagnosed with AS, but I've have had a "bad back" for over 20. I'm currently taking Enbrel and sometimes Celebrex.
Jon, re your hip pain, have you had any physiotherapy, or hydrotherapy?
Originally Posted By: TheWeatherman

  • Iritis (6 to 8 times the past 5 years)
  • Morning stiffness
  • Sore lower back (almost impossible to lay down)
  • Sore hips/pelvis
  • Stiff/swollen hands
  • Swollen ankles
  • Generally tired
  • Sometimes feel flu like/low fever & chills

I didn't realize until recently how much I accepted feeling tired and stiff as part of growing old and how much it affected my life.

I am just being officially diagnosed after 6 years or so of symptoms and hope to get better soon.

Add HLA-B27 positive.
radiating pain from left shoulder to head
cervical bones fused from between shoulders into neck(can't turn)
swelling and joint pain in knees
sciatic swelling and pain
severe pain in hips(must use a cart for support when shopping)
sleepless nights
more pain when the weather changes(my kids have dubbed me the walking barometer)
loss of height(was 5'2" in 1987, am now 4'9")
foot pain
morning stiffness
severe leg cramps
lower back spasms
tenderness in my thighs
right shoulder constantly clicks
trouble buttoning buttons
Yes the shoulder/neck pain is coming from your AS. My left shoulder muscle has spasms and when it does the pain shoots up the left side of my neck into my head. Terrible pain.
I am curious as to whether anyone ever equatted their symptoms to coloesterol lowering medication? My experience with a whole bunch of seemingly unrelated symptoms went like this:
--Severe right leg cramp (painful enough to go to outpatient and spend a few days on crutches) Subsided in about a week.
--General fatigue over the next few weeks.
--"grampa-symptoms" Stiff to sore knees, neck, and expecially feet, first thing in the morning.
--It wasnt until my knuckles started swelling that i sought out medical advice.
Lab results showed positive indicators for "various" arthritis(s)/ A First for my DR so i was referred to a Rhuemy. I was prescribed ...sones, ...zenes, and a few other things that i don't remember, none of which had any effect so these were stopped. He Then suggested Humira. After reading the warnings, i decided NOT.
Well, In the mean tme i had stopped taking my XXXXXXX figuring colesterol was the least of my problems.
Over the next several weeks, i began feeling much better in the morning. Then the rings fit again. Then the fatigue was gone.
I heave never repeated the labs that sent me to the Rhuemy, but i am back to my "old" self.
Ive never taken cholestorol meds. and ive got those symptoms and more.
Well, the newest is the jaw pain, mostly the right side. Let's see if I can list it all:

Neck pain and headaches about every day, upper thoracic pain (mostly at the left scapular region), lumbar pain (creeping up), swollen painful vertebrae (C6-about T4), bilateral SI joint pain, bilateral hip pain (worse on the right), bilateral knee pain (getting better), bilateral ankle pain (getting better, too), sore bicep tendons, right hand sore and stiff at the 3rd and 4th MP joints, groin pain, lower abdominal pain (pelvic pain), nasty fatigue that comes and goes (but it likes to hang out often), insomnia, joint cracking and stiffness everywhere, mouth sores occasionally, a strange little rash with clear bumps that gets dry and itchy (what's up with that?), mostly on the hands, arms, and feet, dizziness, brain fog and times where I feel like I can't find words (feels like Alzheimer's, but I know it isn't. Tongue, lips, and brain just don't work together sometimes). Hmm. I think that's enough.
New member here. After reading through your posts i wonder if any of you could help. Do you think, in your opinion i have A.S.?
In the last 18 months or so i have developed numb toes, lower back pain,pins & needles in my arms and hands. Recently headaches (not severe) and slight chest pains. I've never been diagnosed with Spondylitus on the very rare occassion i go to the doctors but after reading through the posts on here a lot of them seem to strike a chord with my problems.
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 08/24/09 07:16 PM
hi october, seems there are a range of possibilities. i have AS but i also have a probable MS (multiple sclerosis) dx, which includes some or many of these symptoms. i think if you haven't been to a neurologist, and a rheumatologist, please go and see what both docs have to say. if you have to get a referral, please start with your primary care doc, now! looks like you need attention.

welcome here, we try to be helpful, but i think a consultation is important sooner rather than later. i don't think any of us are docs but have many of these symptoms, me for the AS not so much on the numbness, that is more of my MS stuff. good luck, write back on what you find. prayers and peace, sequoia
Thanks, and i wll make that appointment.
Inflamed eyes
Hip pain
Low back pain
Chest (360 degrees)
Neck stiffness
Intermitent groin pain
Burning mouth (probably due to immune suppressants)
Knee pain
plantar faciitus
Severe Fatigue
I could think of more but, It's getting unbareable sitting hear.
Is intermitent blurred vision a sympthom?
Hi,Ive been working part time only for the the last 3 years due to sympthoms, i was diagnosed this year, and I have no health insurance, and I didnt qualified for medicaid, should I apply for disability benefits.
I am wondering if I have AS. Five years ago, while pregnant, I was told I have a positive ANA that was significantly high. Because of insurance restraints, however, I have never been able to see a rheumatologist for further diagnostic testing.

my main symptoms, severe pain upon waking...back pain, rib pain, leg pain...basically feels like I was hit by Mack truck over night. I have three children 5 and under, and so the joint/bone pain in the morning (especially if I have more than 6 hours sleep) is so debilitating, so much pain. Today I woke up crying and it depresses/frustrates me that it takes me many hours upon waking to work the kinks out...generally, I feel fine by night time. I am 34 years old and I feel like I am 80 years old.
From what I understand, a positive ANA only proves that you may have some form of auto-immune disease. A blood test for the HLA-B27 antigen would be a more accurate way to determine if you have AS, although some folks have AS symptoms, and are HLA negative.

This blood test shouldn't be too expensive, I would think.

Sounds like your symptoms are in line with AS, but without more tests, you are only left to guess.

Sorry you are hurting. It's no fun for sure whatever your ailment is. Good luck in your journey to be pain free. John
I have just read through this whole thread and am shedding tears of relief. After so many years of thinking I'm a wimp or a hypocondriac, it feels wonderful to find a place with many who understand.

I'm a 46yo female. I started having problems when I was 15, but it was diagnosed as JRA. I went into remission after 3 years and basically ignored all the signs that something was coming back or wrong with me. I finally got dx'ed after being treated for non-hodgkins lymphoma. I had a major eye problem that my dad told me I had to get seen for because he has iritis. Turns out it was/is ocular herpes due to my suppressed immune system because of the chemo. Then when I finally started feeling better from that, I started a major AS flare, saw a doc and got the dx.

-FATIGUE! Is that a biggy, or what?
-Lower back pain after standing <30 minutes
-Inflammation in pretty much every joint, especially the knees
-TMJ-finally got a mouth guard, which helps
-morning stiffness of all joints
-morning back pain
-have an extra vertebra and shortened tailbone
-brain fog
-Fatigue, oh did I mention that? Makes it hard to delegate chores to the kids so we can have a clean house

It's time for me to go to bed.

I have a million different symptoms I`m not sure which ones are even AS ones, I also have Crohn`s Disease which I believe is connected to one another : pain in sacro joints, uveitis, episcleritis, Achilles tendinitis, burning sensation and pain in eyes, Sciatic pain in thighs, back and buttocks, headaches, joint pain, neck pain and spasms in it, joint pain in toes, fingers, knees, ankles, wrists, bone pain in arms, osteopenia in neck and left hip, Vitamin D deficient, Vitamin B-12 deficient, hypertension, chest pain, jaw pain, rib pain, muscle spasms in back thighs and buttocks, fatigue, sleep problems, spasms and pain brought on by sex frown at times, wrists and ankles et weakness pain and at times can not put any weight on them at all, tooth ache pain in arms and back, etc. I can go on with more, lol. It took me along time to get diagnosed. over 5 years. I do not have the HLA gene. Nor do I have the gene that alot of people with Crohn`s have. But there is no doubt I have either.I am taking Humira injections. I am having a flare now, back to rheumy in 2 days. I have HSCRP of 10.8 and Crp of 2.5 and ESR of 30 right now, but i know like always the dr`s say oh that`s great, normal blood work. But yet iam in severe pain with massive symptoms.
Oh I get that brain fog thing, is that AS??????? I thought I`m just aging or losing my mind, lol. I`m going on 34 in a couple months.
I get made fun of when i talk about my toothache pain in my butt or arms or feet. Thank you for saying that, I will let them know there is someone else with my kind of mentality. My blood work is normal also, but HLA-B27 +, Brain fog is the little pain squirmies squirming there may to the brain and mixing things up and losing stuff. They are mean little critters. Sometimes the change time around and make you miss appts. They take your car keys right before you go out the door. They try to get us to exercise more by trying to find all the things you lose. Gotta watch the squirmies.
so I guess the tooth ache pain I get may be the AS then, lol. I know the dr thinks I`m wacky at times. She alos says the jaw pain is not the AS, yet I see it all over the place that AS can cause jaw pain and swelling. I can have elevated CRP and SED rate but she blows it off saying it`s normal. With the brain fogs, I have drove 15-20 drive to a store to learn i didn`t bring my pocket book, lose my keys and cell phone almost daily, lol. I also sometimes when I drive realize that I will be driving and forget where I was driving to for a minute, my passengers will say where are u going???? when i do this alone, it freaks me out, sometimes I don`t remember how I drove to where I am. scary right. I don`t know if i stopped at traffic lights, cut people off, etc. Is this a brain fog. I also forget my phone #`s when asked, lol.
*neck pain
*low back pain
*shoulder pain
*wrist pain

Interestingly...all pain above occurs when in motion, not when sitting still.

*eye pain/dryness (my newest symptom)
*fatigue and sense of gloom (not ever common to me before)
*not sleeping more than 4-5hrs per night
*fuzzy thinking
- radiating pain in left hip
(Severe during flare-ups, like now. Pain radiates down the leg and into the groin area. Hard to pinpoint exact source.)

- dull ache in left knee (manageable but annoying)

Back pain never ends
Chest pain getting harder to breathe hurts when take deep breathe
Hands get very sore wrist ache
spasms come and go,
Always tired never sleep enough
shooting pain in left leg comes and goes hurts like hell
blurred vision off and on
neck pain
Here's a few of mine:
Stiffness everytime I get up: or(hurting after resting for 30-seconds)
Stiffness after sitting or(embarrassed to go to restaurants)Because I don't look sick, and people stare trying to figure out whats wrong with the stiff girl)
Paralyzed in morning,or(willing mind to get my body moving)
Pain from head to toes.or (Inflammation swelling in every joint)
Burning in heels or(flame-fire)
Pelvic Pain or(pelvic has mind if it's own, equip with heart beat)
Pain when walking or(can't run)
Pain when breathing or(feels like ribs hugging lungs)
Burning eyes or(feeling like blinking over sand paper)
Pain & paralization during the night or (with sparatic sleeping)
Pain when bending or(things all over your floor)
Pain in neck or(can't look to the west-when facing south)
Feeling like your 550 years old. or(feeling like your dying)
These are just a few of the many already mentioned.
Not laughing or(seriously everything hurts)
My feelings are always hurt..... or (I hate Ankylosing Spondylitis) or (pain in my AS) I really wish everyone the best.Take Care the best you can.

If blurred vision is'nt one of thr symptoms it should be, on a serious note though I think it is. I also have blurred vision, more on than off. It gets worst every month.
YES....Hurry-Apply-Go-Now....you just can't get there fast enough to apply for diability. It takes for ever to get it for some. Get a great Rhume doctor fast. I wish you the best!
Lol...or cry out load (col) I'm not coming to your neighborhood !
Originally Posted By: craigr
......Chest pain getting harder to breathe hurts when take deep breathe.......

Hi Craig, welcome to the board, the chest pain and difficulty breathing means your rib cage is seizing up. Mine improved when I started NSAIDs but it's still giving me problems, just been to the physio actually - where the ribs join on the spine very painful right now.
Are you using a hydrotherapy pool? This seems to be something that is more readily available in Australia than in the USA. It helps me a lot. If you're in Perth, the RPH Shenton Park campus has a hydrotherapy pool available on Monday evenings for AS, and the Riverton Leisureplex has a hydrotherapy pool in the section where the gym is.
Hi, you are exactly me 9 months ago. Starting in January I began waking up with right rib pain, then over the next couple weeks it moved to the hips (and would go back and forth between then, never seemed to be both at same time), then the sacrol joint (which is the low back where the spine ends. ALL my pain was only after 5-6 hours of sleeping. I too have 4 children under the age of 7 and my days were essentially pain free. Then about 3 months ago the pain moved to shoulders, elbows, wrists etc. and during the day. I saw a million doctors and no one could figure it out, finally went to rheumy about 2 months ago. HNLAB27 positive and MRI and xrays now confirm AS. I have started Enbrel (biomed that suppresses the immune system) and it has been very good for my arm issues, but my ribs, hips etc. still give me problems. The level of pain waking me up at night reduced greatly about 4 months ago (even before the Enbrel), but again like I said the AS "spread" to the other joints (which I understand is more common in women). I hope you will see a rheumy soon to see if you can get a diagnosis. I also came up with high blood pressure, which in my opinion has to be related to the inflamation. I was a perfectly healthy mother of four before all this started. Please feel free to email me with any questions. Once you are diagnosed it will start to get much better.
my neck is stiff. My right butt hurts in several places. I didn't know I had so many joints under the rump. my hips feel like I'm pregnant with an elephant(not preg at all, of couse). My left foot is swollen from ankle to toes. As Anglecares said my ribs feel like they are hugging my lungs. Don't make me laugh. Can't cry either. Lower back. Uveitis. Sore knees and wrist. I told my husband lets dye my hair white and put it in tiny curls and get me a long house dress with flowers. Maybe ppl won't stare so much and just assume I'm his mother or grandmother. Because what is wrong with her is all over everyones face. I think one older man thought I was faking just to ride the supermarket electric cart.
Originally Posted By: 2young4this
....... My right butt hurts in several places......

mine too! I'm right handed, lately all my symptoms seem to be much worse on the right (e.g. ribs, facet joints, muscle spasms, hip, knee, ankle) is this a coincidence?
Hello everyone-
I'm new to the board, but I've been reading the past few weeks. I was diagnosed with spondyloarthropathy about 2 months ago, after strange symptoms since childhood. I've got a very mild case however, which has really come to being diagnosed after several bouts of iritis, and visiting various different doctors and having different blood tests to rule everything else out!
I'm HLA-B27 positive, seronegative for RA, and I am pretty functional. My first bout of iritis was 2 years ago, and it cleared up quickly. I got it a year later, and was taking prednisone eye drops for about 6 months. During that time, I was exhausted and began to feel "creaky." My feet would intermittently hurt when I got up in the morning- you know the drill! I got another quick-clearing bout of iritis in the spring, and then this september got the full-blown bout again, which I am still dealing with.
Since last september, I've been more creaky, my lower back hurts regularly, and I invariably get random pains in other joints, which come and go.
I was diagnosed based on the iritis, HLA-B27 positive, and x-rays of my hips/lower back that show degeneration of my sacroiliac joints.
My question for you all now is, my symptoms are not bad enough to be put on any of the immune-suppresants, but my eye dr. yesterday brought up going on methotrexate to help treat the iritis, since it is not getting better. I've had this case for almost a month now. What are your thoughts on it- positives and negatives? Should I just keep forging ahead with eye drops every hour and dilating my eye? Thanks!

Go to kickas.org and sign up there and post this question there too. So much amazing support on that site (not that there isn't here to). I don't have the knowledge to answer your question as my AS hit really hard (started in January) and I have no choice but to be on Enbrel right now.

Best to you.

Forget about your spondyloarthropathy - I've heard it before. They wait until you get hit by a truck and then they finally say "You've been hit by a truck." You have AS alright. That was me 4 years ago. I just did pull through a very nasty flare that lasted for 3 months, and put a hurting on me.

I was able to just get by (like you) on pain meds, and diclofenac until the diclofenac caused stomach problems for me. I am convinced the gut problems triggered this nasty flare, as there is a relationship between the health of your gut, and AS. I never would have believed it, but I stopped my diclofenac cold turkey, eliminated starch in my diet, and added a DMARD (Sulfasalazine) to my med routine. After one month, I am almost back to my old self, and I can also walk now, which this last flare had me bed-ridden due to my sacroiliac and hips stopping me in my tracks.

You have the opportunity to attack your disease proactively before you get hit by that truck. Look into adjusting your diet (starches), eliminating NSAIDS from your intake, and start taking a DMARD. I chose SSZ over MTX due to my research, and feedback from many others with this same affliction.

I wish I had known about the starch connection, and NSAIDS and their damge they cause when I was "young" in AS like you. It would have saved me a lot of grief, and damage that I cannot take back.

I don't know. I'm right handed too. And my right side is so aggressive this time. I still have pain and soreness on my left but my right side is definately under attack.
John, I use to eat tons of starch before my first major flare. Near the end of my 1st major flare I started cutting out starch. But the flare had already started leaving before I cut out any starch. I use to eat crackers with all my pills to help settle my belly. I have Carol Sinclare's book. But before I got it I had already did phase 1 and part of 2 of the diet on my own. I did not get any better cutting the stuff out I still had pain and stiffness. Now mind you I still ate starch but the drop in the amount was dramatic and over night. And I'm still trying to do the diet. The starch that gets in me are in sauses and things you would never suspect to have starch in it like sugar free gum and packaged shredded cheese and some of my meds. Most of the over the counter stuff I buy now I make sure do not have starch. I buy the liquid and gel forms after looking the ingredients up on the web. Now it seems that if I eat starch I get worse but it never improved me. So I do think there is a link but if I had to do it all over again I would have never started the low starch diet. I went from heavy starch at every meal and every snack and dessert to only pills and a few other things. I should have seen a major difference. Now i only see a difference for the worse if I try to start eating it again. All that sacrifice and I still wind up in my 2nd major flare that won't give me any relief. I can't take ssz so I am forced to take mtx and plaquenil.
Hi 2Young4this

I too was very heavy into starches - the good kind like pasta, rice, whole wheat breads, etc..... I had no idea about the NSD until I was at my wits end with my body failing me due to AS. I was forced to find an alternative to get my life back. In my research, I stumbled across the relationship between the Klebsiella p. bacteria, and how it proliferates in our system when we feed it starch. Add a damaged or leaky gut from NSAIDS, and it's a recipe for disaster for those of us with AS.

I really don't know the full mechanics of how Klebsiella causes us problems, but I do know enough to give it a try. In order for it to be affective, I understand that all starches have to be eliminated from the diet. All the hidden starches, including the one's you wrote about. I had a set-back one day last week when I got a ceasar salad at a restaraunt for lunch. The salad dressing must have had some type of starch because the next day, my hip and SIJ locked up on me, and I couldn't walk again.

The "size" of the starch particle is important too. If it is ground up very fine (like into a flour), it increases the surface area of it, and it really feeds the Klebsiella bacteria well, thus increasing the chances of a flare.

I am HLA+, and I read in another of your posts that you are HLA-. I have read that the NSD works for those that are HLA-, but I am so new to this diet concept, that I am still learning as I go what is working for me.

I also have read that good results with the NSD take 6 months to a year, so you'll have to be diligent to eliminate all starches, and trust that time is also a requirement for healing.

Also, I am just sharing what has worked for me. I am very happy with my results so far as I can walk, which I couldn't before. The other stiffness that goes along with AS, I still have, but I am 10,000 times better than I have been in months.

Good luck to you,
Hi John and 2young4this!
THanks for your insight. I am having a hard time justifying pushing my doctor to start me on any treatment because I just don't feel that disabled, if you know what I mean. Unfortunately, my memory has not been great during my adult life, so one day I'll have lots of symptoms and not document them, and then I'll forget, and when I"m actually talking to the dr, I just keep thinking I sound like a hypochondriac and forget many of the things that have been bothering me. duhh!!!
Today, however, my lower back hurts pretty bad-and I want to go walk and do some stretching, which has always helped me.
I have done a bit of research on the NSD, but I'm afraid that completely cutting out starch is out of the question, but cutting down is possible! I'm a wife and mother of a 5 year old, so changing all of our diets would be a little evil....
It's funny- my rheumatologist has only mentioned going to the immune-suppressing drugs, not these interim drugs like the DMARD- I hadn't heard of them before you mentioning it, John. My eye dr. mentioned methotrexate just the other day, for the first time. The DMARD sounds really hopefull for treating both the uveitis and arthritis symptoms- thanks a lot!

You will find many people to say DMARDS do not fully treat the pain and stiffness of AS. At least not alone. Its the insurance companies that insits we use them breifly before going on to a TNF. But methotrexate IS an immune suppressor too! The TNF meds are more and more being prescribed quickly now as the main goal is to stop the inflammation in our bodies and slow or halt the progression of AS so it is an important drug to take reguardless of how bad off you are. You dont want to wait till damage is done! you want to do what you can to prevent that!
And as far as the low or no starch diet. It does seem to work for some and not for others. It is stated AS is bacteria related in our system but not yet proven which one. It seems more that we may all have different ones that trigger us into a chronic state. BUt indeed you would need to put in a long time to see results. Do keep a diary of foods and then how you feel. For me large amounts of dairy and popcorn are now off my menu. But i dont get any different from noodles or potatoes and i dont eat breat anyway. Its too refined in its making i tend towards at least more natural forms. (well most of the time:) ) But indeed do try to get off NSAIDS as much as possible people with AS get enough stomache problems as it is.
NWbrooktrout is right!... My tummy hurts these days... I am on Methotrexate, Sulfa***, folic acid...

I am 29 yrs old, I am HLA B27 Negative(-)nd MY RA Factor is also Negative(-) So doc says that i have "Seronegative Spondylarthritis" I am currently on NSD and also on Remicade.

It started as evere pain while sneezing and caughing 3 years back Doc said i have infection and i took some pills nad slowly they did go away... So didn't think much of it carried on with my life... I had severe back pain 2 years back so thought i am being lazy and joined a gym and used to Swim, Wall climb and do Yoga, Step classes. Atleast 3 times a week regurlary for almost 1 year. I went from being 138 lbs to 120 lbs in 1 year.. I thought it is becoz i have been working out...

One morning Mid March 2008 it started as pain in my right hip joint, I thought it is bcoz i had a good workout the previous night. Ignored it for couple of days but the pain never went down. Every step i take from that date till date is painful. It started with Right Hip joint and then after few days the pain went to the left hip joint some times its in the front and some times it near my buttox. Now i have pain in both hip joints.

Doc says that my SI joint is fused! and there is more damage on my right hip than left. I decided to go for Remicade infusions when i saw my knee and anckle swelling. After the Remicade I was almost back to normal. Could do everying like before other than squat/sit on the floor.

The problem is that Remicade only lasts for around 3 to 4 weeks and again i am back with pain and stiffness. Doc says i might need hip replacement surgery in future, he says why don't u get then replaced!! This scares me!! What if AS attacks my Knee... Replace it?? What if it attacks my anckle?? Replace it!!.. This word freaks me out...

I am due for my 5th Remicade infusion and getting it on tihs weekend... I hope my pain goes away... You see, I have to make money for my unknown future and remicade is costing me a lot... The thought of this debilitating disease keeping me bed ridden scares me!! I donno what I have to do... I don't smoke, Drink nor am i addicted to any drugs! I am a Pure Vegetarian! I tested NEGATIVE for both HLAB27 and RA factor.... I still donno why i have this problem!!! I also got second openion from 3 rhemetologists and 2 orthopedic surgeons they are agree that my diagnosis is correct...

Sometimes i am soooo depressed.. I cry in my room... Thank God!! I have my Mom and Dad to worry about me...both have been taking such good care of me... My mom has been an angel... She makes very nutricious food... I hope I'll get better and get back to being normal again... I am in need of moral support... Any advise, guidence would be wonderful...
These things helped me: (Hope this helps somebody else too)
1. Daily Excercizes.
2. Eating Less but nutritious food
3. Ultra Sound, SWD along with Regular physiotherapy has reduced my stiffness in my leg....
4. Daily Strengthening excercizes along with simple joint excercizes (for all my joints) does help.
5. Hot Shower
6. Slight body Massage

I wish all the best to the members of this forum and very thankful that i have somebody to share my worries... you see no body else understand what i am going through...


I guess the immune suppressent that you are talking about is Infliximab (Remicade). I am taking it from March 09 and luckily i do not have any side effects. This is how it is with me. I take Remicade infusion every 2 months. First 3-4 weeks after the infusion i do not have any pain nor stiffness... feel like i do not have AS. after 4th week i start getting pain.

I must say this drug has helpd me see that i can have pain free life in future. I feel 95% back to my very good health.

My doc says he has seen patients taking this for as long as 2 years... some even 6 months...

I hope this helps you decide if you want to go for immune suppressents..

All the Best!

hi everyone, i was diagnosed with AS after testing positive with HLA-B27, but i am not sure if i really have this condition, although my back and my neck is kinda stiff, my conditions and symptoms are far away from the testimonies of people with AS all over the internet, those cant sleep with the pain, swelling here and there etc. How can I know if this is really AS, its been 3 years since i first felt abnormality with my back and it never recovered to normal until now that i have stiffness from low back to neck area, but still i can do almost everything except activities that include heavy running and jumping. My back is still straight,i can still bend..is it the actual spine that will hurt? cause my spine is alright only the muscles that are stiff.. Is this just an early stage of AS? To those who still remembers their early years of AS, Please advise me on this before i start a non starch diet.. TIA
Originally Posted By: james_phils
........its been 3 years since i first felt abnormality with my back ...... cause my spine is alright only the muscles that are stiff.. Is this just an early stage of AS? ........

sounds like AS, you don't go from being 'normal' to being fused overnight
this diseases is insidious, it slowly creeps up on over years, by the time the symptoms are bad it's too late to reverse the damage
my obvious symptoms started with thing including upper back pain and muscle spasms, also my rib cage slowly seized up
Mine too is alot of muscle involvement. But that itself is no less pain and damage.
nearly 90% of my pain has been purely hip pain. I've been diagnosed with AS since i was 13 and I'm 28 now.. so for 15 years. It has only been in the past year that I've started having any back/neck pain. It primarily is back pain, but it's not a 100% thing. I can still bend over without problems. I can't touch my toes but I'm still stretching hoping to be able to once again. I personally haven't stopped eating starches. I eat anything I want. My Rheumy has never advised me to change my eating habits. 2 big things... you MUST be on an anti-inflammatory drug (slows down/stops the fusion process) and you must exercise/stretch. Like you said, avoid anything high impact.
Hi Ester27
Originally Posted By: Ester27
nearly 90% of my pain has been purely hip pain. It has only been in the past year that I've started having any back/neck pain. It primarily is back pain, but it's not a 100% thing.

Sounds like more of your AS is starting to reveal itself. Your back pain will come and go like mine did at the beginning. Wait till it starts really eating at your neck. Pure misery!

Originally Posted By: Ester27
I personally haven't stopped eating starches. I eat anything I want.

Yes you can, and I did too until my AS beat me to a living pulp and made me unable to walk or care about anything else in my life. Then I found out about the relationship between starches, Klebsiella bacteria, and how it causes AS to operate out of control inside me. It sounds hoaky I know, but before you make up your mind against it, you ought to keep an open mind to what is unfolding right before our eyes about the relationship. I have been on a starch-free diet for a month and a week, and I cannot believe how I am getting my life back! If you are HLA-B27 +, there is a great chance a no starch diet will help quench that raging battle that will enevetably take place inside your body.
Originally Posted By: Ester27
My Rheumy has never advised me to change my eating habits.

Well of course he or she wouldn't! Their job is to schedule your apt for next visit, x-rays, bone scans, and prescribe meds that the medical industry has approved. They have revenue to generate, y'know.

Originally Posted By: Ester27
you MUST be on an anti-inflammatory drug (slows down/stops the fusion process)

Watch out! Those of us with AS have easy to damage "innerds". The health of our "innerds" determines weather we are in a flare or not. It was the NSAID diclofenac that caused me to have serious issues with gut deterioration, and allowed more damage from Klebsiella which really proliferated due to it being fed starches.

Think about it: Would you really need an anti-inflammatory if the Klebsiella bacteria was not proliferating due to it not being fed starches? I challenge you to research out this concept, try it, and see if it might work out for you.

I am also on the DMARD Sulfasalazine, which has several properties to help stop the "source" of other AS related problems. I am glad to have my life back, and I am glad to share this news with anyone.

Good luck on your exploration.

Dear Mr John,

Hello to you, if possible I am curious if you would share what you eat on a weekly basis. I am interested in starting the starch free diet.

Thank you

Best to you always Cookie
Hi LilMsCookie,

Glad to see some interest......I have to start off by saying everyone is different. Some have candida issues, and others with histamine issues that greatly influence what can be consumed on a NSD. I am in my infancy on the diet, and my knowledge of it, so I don't have all the answers, but I am diligently researching out what exactly is happening inside of those with AS. I can attest, though, that it is working for me (I am also HLA-B27 +). Thankfully, I do not have any issues with fruits, veggies, and meat, so my menu just eliminates anything with starch.

Using iodine is the way to test if a food has starch in it. A small sample will test black if it is starchy.

Also have to say it is a life-changing decision. It is not convenient by any means when incorporating family or friend get-togethers, as it seems all finger foods and comfort foods have some form of starch in them. Going out to eat is another problem if you want to stay NSD strict, as many sauces, marinades, etc, have starchy fillers. I had to do it, (make the commitment) or say goodbye to my livelyhood.

My menu consists of simple one-ingredient foods. Breakfast: fruits like grapes or oranges, eggs and ham cooked in EVOO. Lunch: raw veggies, fruits, any meat, usually chicken, pork, or fish (salmon especially) etc... rarely beef though. Dinner: Large salad with lots of veggies, and meat. I also incorporate some cheese, and for a treat, I eat a bit of Breyer's vanilla ice cream with some strawberries, or blueberries. Very simple and not glamorous at all.

Also need to incorporate omega 3 and 6 EFA's in the diet. Borage seed oil and EVOO oil is very good for us. A DMARD is good too. Enteric coated SSZ is what I am on. I have stopped my NSAIDS, and am on tramadol only when I need it. That is decreasing my chemical dependance I'm amazed to say.

It will change your attitude from "living to eat" to "eating to live". I have lost a lot of weight since I am not eating starch, but I needed to lose it anyway.

Good luck. I hope you can find a way to end your pain.

Dear John,

Please accept my gratitude and heartfelt thanks for you going into so much detail and the trouble of answering me. Your act of kindness to me will never be forgotten. There are many things that are discussed or mentioned on this site that I have no clue about. I am curious what EFA is? I am also curious what DMARD is?
SSZ? grins at first i thought Super Sport but no that is my Chevelle. NSAID? I appreciate it so much. I wish for you also a finding to peace and pain free life. All of us.
With much gratitude
I am currently in the medical field and have researched AS and inflammation all the time. I will look into the starches thing. My Rheumy is very cautious about what kind of meds I take. Of course I've been eating NSAIDs since I was 13 like they were candy. I have a strong stomach thank goodness. I know if I go off of them I am in extreme pain within 24 hours, if not sooner. I will have to say though, if starches contributes to it then I'm screwed! I love my pasta and bread. I would rather take these meds to enjoy my food then go without it. That being said, I have experienced pretty extreme pain today in my SI joint. I called the dr crying. I try not to be a baby about it but sometimes it gets me. I am now on Zpak for the next 6 days. I HATE going on steriods because I will now have no immune system for a week. My instructor in the hospital has us walk down 3 flights of stairs at the end of the night because she believes in keeping active. I will have to have a talk with her on Wednesday. I believe it is linked to my flareup.

I am also curious about the neck problems. They run in my family, herniated discs anyway, and I want to know what kind of problems you are talking about. I ask my dr and he doesn't seem to think my neck problems are related, probably not. I have had 3 bulging and dehydrated discs. I did physical therapy and it helped tremendously. However, I cannot turn my neck and look in a direction for a length of time without my neck starting to kill me. It's hard to know which it is, AS or my families probs.

Thank you for all the input.
I looked up starches and the klebsiella and this is what Wikipedia has to say about it...

There has been a longstanding claim that AS arises from a cross-reaction between HLA-B27 and antigens of the Klebsiella bacterial strain (Tiwana et al. 2001).[5] The problem with this idea is that no such cross reactivity with B27 has been found (I.e. although antibody responses to klebsiella may be increased, there is no antibody response to B27, so there seems to be no cross reactivity.) Particular authorities argue that elimination of the prime nutrients of Klebsiella (starches) would decrease antigenemia and improve the musculoskeletal symptoms. However, as Khan (2002) argues, evidence for a correlation between Klebsiella and AS is circumstantial so far, and that the efficacy of low-starch diets has not yet been scientifically evaluated.[6] Studies on low-starch diet and AS could be difficult to fund, while new biologics developed by the pharmaceutical industry may demonstrate efficacy, as well as financial benefit to the industry (whereas changing the diet would not.)

Sounds to me like it would be a good study to do. It would be nice to have proof. Once there was then I'm sure the word would spread and people would try it out. If the choice came down to pasta or living pain free, I would have to give up my pasta but VERY reluctantly. Maybe with my next flareup I will cup out starches to see if it will go away without pulling out the big guns.
hi people, thank you for your replies... heres the thing...in connection with starch to AS and my uncertainty of my condition whether it is AS or not, i fast for 3 days, i did not eat anything just one apple a day and water, but my conditions did not get any better, still have stiff lower back and neck. is the non starch diet only applicable to advance stages of AS? or there are AS cases that doesn't react to starch? help please
I have never posted my symptoms, but I am finally feeling certain of which of my symptoms are AS related (well, more than I have yet anyway!).

Neck pain/locking
Lower and upper back pain, burning, can't stand up easily if I bend over
Hip pain/locking
SI pain and burning
Enlarged spleen
Cysts in liver
Reproductive issues (cysts and inflammation that went away when I went on meds)
Migraines (multiple causes but worse when neck is flaring)
Rib pain
reduced lung capacity from rib pain
ankle pain and locking
eye floaters, dryness, and blurriness
shoulder pain
knee pain and locking

I am back on sulfasalazine(working back up to 3000mg) and have forgotten how much I detest the stuff despite the help it gives my joints! My latest MRI shows no increase in damage from 2 years ago and following my pregnancy, so things could be worse.

I do eat really well and exercise regularly but do not follow a no-starch or low-starch diet. Perhaps posting in the general messages would get more of a response for you on the diet? I am by no means an expert and have never attempted the no starch diet personally.


Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 09/29/09 06:05 PM
good to hear from you on sulfasalazine, laura. post more on the update on the main forum.

james-phils, welcome, post more on the general forum. most folks won't continue to look for you here, so see you there. also update on how you are doing.

peace to both of you, sequoia
I have a question for everyone. Recently, I had my monthly Remicade treatment. The next morning, I had a follow up with my Rheumy and while there, my heart rate was 135 bpm. My doctor was so concerned that she sent me to the ER. It was still high and they ran tests did a ct scan all was clear. Now, I have followed up with a Cardiologist and Pulmonologist. I have had a halter monitor, echo, and now am undergoing a pulmonary function test in the next couple of weeks. Has anyone here had any similar symptoms after a Remicade treatment? I am also taking Celebrex, Ultram, Sulfasalazine, Methotrexate, hydroclorqune. Any thoughts would be greatly appreciated.
Hello everyone....I am newly diagnosed and wanted to list my symptoms. Not sure if all of them are related to AS yet but here it goes:

Starting a month ago...
Mild to extreme lower back pain
Slight fevers

Starting a year ago...
Eye inflammation in one eye

Starting 6 years ago...
Joint paint in shoulders, ankles, neck, hips and wrists
Stomach pain and IBD diagnosis
Feeling like I have the flu
Rib pain, unable to take deep breaths

Since age 13 or so...
Stomach aches
Achilles tendonitis
Mild to extreme neck pain
Hip pain

So there it is. I also get rashes on my chest and stomach....don't think that relates though. I am 25 and live in San Francisco.

Also, I am a bit confused by what I have read that only 1 in 5 people who carry the gene develop AS and that it is often brought on by an environmental factor. Has any research been done to determine what environmental factors might trigger this gene? Things I was thinking:

I had shingles at age ten but never had any signs of having the chicken pox
I was on Acutain at age 13
I was on birth control since age 15 to regulate periods

Any correlations?

Hope all is well for everyone!

Hello Kimberly,

They don't know exactly what environmental conditions set it off and since it is a couple other genes also, it could be different for each person. Hormonal changes are very common--like puberty, pregnancy, menopause--for many of the auto immune diseases. So when they say environmental, they don't mean JUST air pollution or medication or whatever, they mean your bodies environment. Mine was very mild (or rather I was in and out of remission) from teenage till menopause when it became severe. When I tried hormones, they helped regulated and made it better but they unfortunately, caused my fibroids to act up. What I am saying, we might want to "blame it on something" but alas, it's just our life. So I recommend focusing getting diagnosed and treated.

Many people with the gene do not get AS but it doesn't mean because their "environment" was "better" rather, they might not have the other two (known so far) genes and it is the combo that sets it off.

Welcome, it sounds like AS to me. I would list from young age to now, rather than backwards, since teenage symptoms are important to diagnosis. Its great how you are learning everything you can, again welcome. Sorry for the reason.

Originally Posted By: KimberlySue

Also, I am a bit confused by what I have read that only 1 in 5 people who carry the gene develop AS and that it is often brought on by an environmental factor.

I think it is more like 1 in 50 HLA+ people develop AS.

The "environmental trigger" theory is a big one with all the autoimmune diseases... but nobody has cracked the code yet!! There is a lot of active research in this area, some more basic science and some disease-specific (spondy, RA, MS, lupus, Crohn's ... all related autoimmune diseases.) When that is figured out it may be helpful for prevention or early diagnosis but unfortunately there doesn't seem to be a way to "undo" or reverse it once it's been triggered.
Originally Posted By: JenInCincy
....The "environmental trigger" theory is a big one with all the autoimmune diseases... but nobody has cracked the code yet........

this might be of interest re "the code"

Gene switch find a breakthrough
CATHY O'LEARY MEDICAL EDITOR, The West Australian October 15, 2009, 2:15 am

WA scientists have helped find the chemical "clothes" or "decorations" that switch some genes on and off.

The finding, reported in the journal Nature today, could pave the way for doctors to prevent or treat a range of diseases such as cancer by using the epigenome, the extra layer of information which influences the human body's set of genetic instructions.............
Ya universit of washington. (GO HUSKIES:) )They sure do alot there. Their website is hard to manouver but great info on there for AS.
hey Brooktrout, it was the University of Western Australia LOL!
I was diagnosded of AS in June. Looking back, I can see that the disease was present at age 18-20 yrs old. I can see progression of the disease through out my life. I am now 39 years old and have the following symptoms.

severe low back pain...always
stiffnes with inactivity
pain in neck shoulders and middle back
numbness in shoulders and arms while resting
all over body pain that feel like a fever
sharp pains in knees when kneeling.
severe fatigue
pain down my left buttux and down my leg to my knee
pain in hips if i lie on my side...either side
my bones ache all over

im sure there is more but thats what is bothering me today so far

I was diagnosed with Sacroiliitis a couple of weeks ago but have been dealing with "sacroiliitis" among other pain for over a month now. They did not do any blood work and only an x-ray. Here are my symptoms:

Throbbing pain on left side (hip)
Throbbing pain in lower back
Pain in left knee and down leg
pain in left jaw
numbness in left arm, shoulder pain, neck pain
loss of appetite
weight loss
buttock pain

Nothing helps the pain. Is this how this disease starts, am I one of millions who has not been properly diagnosed. What can I do to get the proper treatment. Is an HLA-B27 always positive when there is AS? What pain medications help this awful pain?

Jen, when did your symptoms start, what age? Is it just left side? If it is just the left side, that might not be AS.

The blood test isn't really confirmation or not. 15% are negative for that gene because there are a couple other genes there is no test for yet.
Thankyou for responding. The symptoms began about 5 weeks ago and they are only on the one side. I am 38 years old and I also have Endometriosis. I have had knee pain on my left side for 12 years but the recent hip pain and throbbing back pain caused me to go to the E.R. for relief.

Laying down doesn't help, walking definately doesn't help and if I walk around too much, soon I'm unable to walk. The E.R. doc wrote me a prescription for prednisone but I'm to have a hysterectomy in 10 days and can't have immunosuppressant drugs in my system prior to surgery.

That is not good news regarding the HLA-B27. I was hoping for a definative yes or no. Can you tell me why since it's only on the one side you think it might not be AS? Any other thoughts of what it could be? How did yours first manifest itself? I have read that Sacroiliitis is the first sign.

I was diagnosed in 06 have a strong family history of AS and R A on my dads side he also has AS and has had it for 40+yrs luckly he has been in remission for several yrs with small flares here and there me on the other hand I have been in hell for 4to5 yrs started out with a pop in my neck from streaching they found one fusion in c4&c5 my symtoms are major bone pain started in my neck, numb down hands and arms then more pain from c spine through t spine after another mri had more fusions and 2 hernaited disks compressing my spinal cord my hips hurt ,my ribs are fully fused and cant take deep breaths hurts bad my left leg goes dead and i litteraly have to pick it up to move it i get electric shocks through my bones lasting for 10 to 30 min at a time, headaches, if i use my hands to much they go week and im unable to use them its kinda like there paralised i drop stuff all the time, i can only sit leaning forward from fusion and pain as of 8 monthes ago my joints in my hands and feet hurt non stop my knees pop and grind cant sleep when i am able to i wake up from the pain and have to get out of bed and move did not have fusing in my L spine 6 months ago but now my 3 lowest vetabrae are now fused with another hurneated disk compressing my spinal cord have floaters in my vision and double vision all the time have had uvitis 3 time and cronic dry eyes, fatigue,muscle spasam through out my body if i over do i have full body spasams for hours, mouth soars,joints lock up, also have aorta damage from AS i have tried the tnf blockers and am alergic to them was on sulfsalsadine & mtx did not do much manage with pain meds and waiting for something new to slow the progression of my AS im scared my rummy's are not going to find me something i can take that will help before im completly fussed in 06 i had one funsion in my neck now 73 percent of my spine is fussed my ribs are completly fussed my pelvis is fussed and i think my hands and feet are starting they just done an utrasound on them and both my hands and feet have many bone spurs i cant honestly remember what its like to be with out pain
OMG that sounds like total hell. Nobody knows about this disease it seems like. Is there nothing that will stop the fusion of bones once the disease has taken hold?

How old were you when the symptoms first started?
I have also had the floaters in the eye, but the optometrist told me it was ocular migraines. I'm scared after reading all these symptoms and outcomes. Did you test positive for the HLA-B27?

Do you have regular ESR's done? Do steroid injections help at all?
Is there any correlation between this disease and Lupus?

mcda,, when they diagnosed you , you already had fusion of the c4 and c5? How do you pay for your MRIs? I have heard they are costly and docs won't order them. I'm so sorry for the pain you are in, my pain I'm sure is nothing compared to yours, but I feel for you.
I was dx in 06 im 35 and my symptoms started in 05 I am HLA-B27 positive, I have had many steriod injections some relife but not much they are causious of giving me to much steriods because i also have osteoprosis I have been tested for lupus it came back negative so im not sure about any conection I am on disabilaty and have medicare thank god!!! The docs have tried burning my nerves that made it worse i have had spinal blocks they did not work either. there are the TNF blockers that many people have had good luck with them slowing or stoping the progression so please dont be scared i am just one of those lucky people that have lots of allergys to meds. I fuse so fast that they have me do at least one mri a year. It is total HELL but i take it a day at a time some days a minute at a time right now its all i can do and also I try to keep positive and hopfull they will have something that will work for me soon! We all have or good days and bad ones to i try really hard to focause on the good one! what is an ESR?
Jen23 I recently got a new kind of pain near the right hip. I thought it was my hip joint but my physiotherapist said it was referred pain from my facet joints and the rheumy agreed with this. I'm now getting a shooting pain down the back of the right thigh so I'm thinking this is also related to the facet joints. It is possible to get AS symptoms just on one side at a time.

mcda/Mysti - ESR is ablood test, Erythrocyte Sedimentation Rate (also called "sed rate") it is an indicator of inflammation, however a significant number of people with bad AS have a 'normal' ESR http://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate
I do think it is possible to get AS symptoms down one side if the AS is fuseing one si joint but im not positive about that. for me my sed rates have always been normal and im still fuseing like crazy but my As is extream not to say im worse off than every one else I am allergic to most of the meds they have tryed me on my rummy has talked a little about trying me on remicade but that really scares me where i had such bad reactions with emb. and humara with in an hour of injection i had base ball size blisters in my mouth and throat and also bad rash all over my body the thing that scares me so bad about the remicade is that its an infusion in to your veins not just a shot and failing with the other two after one hour of it being in my system!!! does any one have any other susjestions i could try I have tryed-sulfsalsidine,celabrex,prednasone,humara,embral,injections of steriods,mtx,burning my nerves,spianal blocks,i was suspost to get in on a study for rutuxin but the uofu did not get the funding for it they have the rutuxin approved for RA but not AS yet. right now i manage with pain meds that do NOT really help much my pain has not been below an 8 for a long long time but with the pain meds i get about two% relif for an hour to two hours and i really would like to find something i can take that helps and stops me from fusing so fast right now im just masking a litle of the pain. so please if you have any susgestions please let me know this site has helped tons with the depression it sucks that we are all going through this life time disease but it is really nice to talk with others who are going through the same thing. thank you jen23 for the info i thought that was what it meant but was not sure also was confused because my sed rates are normal and my rummy puts alot of weight into them being normal even though im still fuseing and have visable inflammation i am going to print info from AS medical sites about sed rates being normal and still having active AS to show her that im not a freak lol then maybe i can get some relif some how sorry really bad morning kinda went on and on and on lol hope your day is a good one. smile
Hi Winelover;
So you have a rheumatologist, is this facet joint disease an immunological disorder of some sort? or is it itself a symptom of AS? Do they show inflammation on an MRI? What is your prognosis ? Can you physically feel any swelling near your hip/low back or near any of your vertebrae?

Since you have a physiotherapist, is there exercises that help?
I have not experienced this type of pain in my entire life, it feels like a toothache in my hip, knee and back on my left side. My husband says he can see and feel the swelling there. Nothing helps, absolutely nothing!

winelover, are they giving you injections of corticosteroid into your vertebral space to aid in inflammation. How long have you been having the symptoms?


Jen23, the facet joints are part of the vertebrae, the pain/symptoms are directly related to AS, have not had any injections. Sometimes I feel the muscles along the spine in the thoracic region are swollen, but I can't see them to 'measure'. Maybe you've got bad muscle spasms - this is also fairly common with AS.

Definitely exercises that help, buy the book & CD from SAA, or see:
I like exercising in a heated pool the best

also a good idea to go to a physiotherapist that has an interest in AS
I have had many cortisone injections before my diagnosis. They didnt help at all. Excersize seems to make the pain worse if i do more than just a few stretches. I can only last on my feet for a few hours and i'm wiped out. I have been under care of dr. specializing in rehab and pain management for 8 year before referred me to a reumatalogist. I have had at least 4 mri. I dont know how he didnt see it. My bottom three lumber are almost fused and my saccilic joints are messed up. So far i havent found anything that helps. I am so fatigued all the time. I am on a fentanyl patch for pain but that is just to mast some of the pain.
i also am on weekly injections of enbrel and daily nsaids along with a host of other pills for depression and sleep problems. Its ridiculous how many meds that i take. What are others taking?
I was recently diagnosed with undifferentiated spondylitis but I think I've had spondy problems for a few years. I'm HLA-B27 positive.
iritis--twice in the past three years. With steroid drops took over a month to clear up.
plantar fasciitis--recurring.
constant neck pain and limited mobility. Was told I have bone spurs.
sharp, shooting pain in my left big toe.
I can bend forward til my fingertips go past my kneecaps but I can't lean backwards hardly at all before I feel lower back pain and pain on both sides of my lower spine.
Had to sleep in a recliner most of the summer because lying flat felt like a knife being twisted in my lower back & made it hard to breathe, let alone sleep.
In the past month I've had both sharp and aching pain in my left buttock, especially if I am stationary (sleeping, reading, etc).Since this is new I'm wondering if a new X-ray or MRI (something I haven't had) would be beneficial.
I have both sharp and aching pain from the top front of my left leg to the knee. Both the buttock pain and the leg pain wake me up at night, several times a night, even though I take the max dose of Tylenol Arthritis.
My wrists ache at times.
I get muscle spasms in my neck, shoulders, and legs.
The newest pain is ribcage pain right under the right breast. Is this an AS symptom? I thought AS rib issues were in the back where the ribs join the spine???

Right now I'm only taking 400 mg of Lodine twice a day. I have a rheumy appt. on Wed. and wonder if I should be on something else. Especially since I've been experiencing a few sharp pains in my stomach. I've been thinking it's because I've cheated on my Low Starch diet a few times and that's my body's way of punishing me but now I'm wondering if it's the Lodine. I've been on it about 2 1/2 months.
Have you been tested for Lupus?

Rash and fever can be a sign along with your other symptoms
You are me exactly with your list of symptoms. I was also diagnosed in July. . . Embrel is helping with the flu feelings. My arms go numb at night alot and my knuckles grind then too (after sleeping a little bit). Pain is very transient and moves around constantly. Very frustrating and scary.
My symptom started in my early 20's with
Upper neck pain
Mid 20's
sciatic pain
hip pain
The pains would come and go, but when I had them, I had to crawl until Naproxen would kick in, then I would usually limp from the hip pain. It would last anywhere from 2-3 weeks to 1-2 months at time, then stop almost completely.
In my 30's
I was fine except for an occasional flare-up, then no back pain while pregnant and for a year afterward,
however I had my first round of Iritis while 5 mos. pregnant.
Mid-Late 30's (now)
Two more rounds of Iritis (3 total in 4 years)
Middle back pain so bad that I can't sleep flat on my back. I can only manage to sleep if I am propped up on several pillows or sitting in a recliner.
The weird thing is, my mid back pain goes away almost completely after I get out of bed and walk around for about 15-20 minutes. I can feel it slightly if I sit for long periods. When I used to have the sciatic & hip pain, it was there 24/7 unless I took a big dose of naproxen.
I have just recently been diagnosed. It was a nightmare, just your FM acting up. nononono This is a different pain different symptons. Started two years ago pushing for answers. But the headaches are killing me 4 weeks one day without one. Even wake up at night with them.
1. fatigue
2. stiff
3. chest pain
4. back pain
5. hips giving out walking
6. knees buckle
7. wobbly
8. headaches like someone slamming my head against a wall
9. headache builds slowly them ice pick to the eye
10.less flexibility
12.Bladder weak
13. slight to moderate bulging disc from
My name is Matt and I have been diagnosed with AS. I have battled hip and back pain for years. It took about 4 Orthos to finally take the time to hear me out and properly diagnose my symptoms. I am 44 and the fusing process has begun in my SIJ and lower back. Ribcage starting as well.

I have been dealing with chronic fatigue for years and have had iritis a couple of times. I have been an athlete all my life I now I can no longer run or jump. I have bad pain days and worse pain days but never good days. Sleeping- forget about it.

I have been frustrated for years knowing that I was hetting worse and having Docs telling me I was just getting old. Again, glad I found the right Ortho!!

Just started on Indomethacin. Helping a little. Starting to stretch and exercise. I feel like I am starting to lean forward more so I need to work on posture exercises.

Harder to deal wih the mental/emotional aspect of this knowing I can not do what I used to do. Harder not knowing how I will feel 5 years or ten years down the line.

lower back pain
upper back pain
neck stiffness/ pain
outer thigh/ knee pain
both ankles
middle finger 1st joint right hand
very stiff in morning
dry/ itchy eyes
extreme fatigue, dont ever feel rested
feel more tired if too much sleep
Lets see.....so Ive had AS for two years now...and this is what Ive noticed:
1. Classic SI pain
2. Some slight neck discomfort....I always feel like my neck needs to be cracked
3. Shoulder blade pain...on both sides
4. Swollen, somewhat painfull knees
5. When a storm is a brewin my hands start to hurt
6. Some slight hip pain...which comes from my knees hurting...so Im not sure if hip pain is inflamation from AS...or the fact my knee is out of whack
7. Iritis when I was younger
8. HBLA27 +
9. IBS
10. Weird back spasms

No more fatigue or real morning stiffness (for the most part) since being on Humira.
Hello I'm CMB.I'm new at this. This is a place for symptoms, here's mine:
1-neck pain
2-upper back pain
3-shoulder pain both sides
4-mid-back pain with fusing of the 3 disk very little bending of spine.
5-arm pain with bone over growth at a place were a plate and 6 screws repaired break.
6-lower back pain
7-hip pain
8-some knee pain not all the time.
9-hands and feet numbness
10-lots of trouble sleeping, two or three hours tops.
Welcome cmb, post a new topic on the general message board and let us know a little more about you. How long before you got a dx, meds and anything you would like us to know. You will get more responses with an introduction post. Welcome again and feel free to post anytime, this forum has been a life saver for me. I love Alabama, what part are you from?

I feel quite blessed after reading many of these posts. My symptoms are quite the same...but I manage well so far. I am worried because things are speeding up now. Here is my list.

Deterioration of the Lumbar Spine (One Surgery)
Deterioration of the Cervicle Spine (Recent Discovery)
Pain between the Shoulder blades
Mal-forming left Clavicle (Recent Discovery)
Achilles pain in right heel (Began this Year)
Pain down back of left arm (New Problem)
Pain down back of both legs after sitting (Bad at times)
Deteriorating left knee (Sounds like crushing a pecan shell)
Eyes stay red...looks like I've been drinking
Ganglion Systs in both wrists...right wrist looks bad

It sounds bad to read...but I still live an active life. I take Celebrex and what ever else they give me. I have to see the Orthopedist this week so we'll see what he says. I will pray for everyone. Ya'll try and take care...and look after one another.

Hello all - I'm a 44 yr old male diagnosed w/ AS when I was in my young 20's. I recently started experiencing mild/severe pain in the the joint of right index finger. Didn't do anything to injure it and it's been getting progressively worse the past few weeks. My rheum has periodically asked me about my hands (up until now they have been fine), so I'm now wondering if this is a common problem/issue for others w/ AS and if you've found anything that help alleviate the pain.

Appreciate any feedback.
Today might finally be a good day to reply to this topic because pretty much everything hurts.

.I hate winter; my joints go crazy (is that a symptom?)
.My most severe pain is in my hands and finger joints
.Sausage fingers and finger stiffness - occasionally one will "lock-up"
.Neck pain and stiffness which came on very suddenly
.Lower back pain and decreased range of motion
.Pain in the butt smile (I thought it was work, but it's continued to ache since I retired)
.Pain in heels and foot/toe joints
.Stiffness and pain in one of my knees
.Shoulder pain
.Depression - I've taken meds since '86 and have seen a counselor on and off
.Did I mention I feel tired?
I have read that Carpal Tunnel Syndrome and Tinnitus are complications of AS as a result of the inflamation
.I've had carpal tunnel surgery on both hands
.Ringing in my ears, Tinnitus, since I was a child
.Ridges on my finger nails and bumps on the roof of my mouth
.And, Restless Leg Syndrome. I don't know if it's related or not but it SEEMS like it should be
.Oh and I almost forgot, I look perfectly healthy (which isn't fair) On the other hand, it's probably good that I don't look like I feel :))
Hi Guys, you can get both AS and osteoarthritis in your fingers, my rheumy thinks that's what's wrong with mine.

Paul - I get very fatigued too, some people can't understand how you can feel so crappy when you look OK
I'm a 20-yr-old female and I haven't been diagnosed with AS. I've had joint pain for about 7 years. Different doctors have told me different things. Finally, a rheumatologist suspected AS based on my lower back pain and peripheral joint pain. My mother had JRA (which may or may not make a difference). I'm positive for HLA-B27 and showed a SMALL amount of edema in my SI joints on an MRI. My x-rays were normal. This is a constant struggle for me as I feel pain everyday but the results of my tests aren't enough for a diagnosis. She recommended that I come back to re-evaluate when my symptoms are really bad.

There is something that I didn't talk to her in detail about and I was hoping to compare symptoms. Its a touchy subject and to be honest I would feel a little uncomfortable talking to my doc about it. I have had bowel issues for the past few years. Frequent, unhealthy bowel movements on a daily basis. I also have issues with flatulence (gas). I'm under the impression that bowel issues associated with AS involve diarrhea and inflammatory bowel disease.

Is it worth the embarrassment to bring it up to my rheumatologist?
Originally Posted By: schulzl
............ I have had bowel issues for the past few years. Frequent, unhealthy bowel movements on a daily basis. I also have issues with flatulence (gas). I'm under the impression that bowel issues associated with AS involve diarrhea and inflammatory bowel disease.

Is it worth the embarrassment to bring it up to my rheumatologist?

definitely - if you have ulcerative colitis or Crohns, it really needs to get treated
Hi, I'm 23 years old and am new to this forum. I first started having symptoms in my joints about 4 years ago. These symptoms lasted for about a year and then I stopped having joint pain for a little more than two years. Then starting from October 2009 to the present time, I've started suffering from flare-ups again.

Symptoms from 2 years ago:
-Left knee (swollen, incredibly painful to walk)
-Both thumbs
-Big left toe

Symptoms starting from October:
-Extreme pain in left shoulder
-Left ankle
-Lower left hip/buttock pain (Especially painful when getting out of bed in the morning. I lie flat on my back)

Doctors haven't been able to tell me if I actually have AS or not because my symptoms have been relatively mild. I am HLA-B27 positive though, and my recent sharp, and unexplainable hip pains have convinced me that I probably have AS.

What does it sound like to you guys? I'd really appreciate some opinions other than my parents, who seem very skeptical that I actually have AS, since I'm a female and my family has no history of joint disease.

Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 12/11/09 01:47 AM
welcome lydia, post also on the main discussion forum and tell a bit more about your tests and other background. sure sounds likely to me. your parents can be in denial like my hubby was about all my autoimmune diseases. he really didn't want to believe because it scared him. now he has come around. i have the AS and others, but he has RA, and we both got the arthritis dx around the same time. good luck, welcome and get in on the discussion. it is a bummer of major proportions to be young with this disease. we kinda think our 25-year-old twins likely have our diseases, too. so we can relate to you and your folks!

take care and good luck on your journey, prayers and peace, sequoia
Hi there,

I'm going through a similar situation. I'm 20-yrs-old and I've had joint pain for about 7-8 yrs. It started in my knees, then moved to my hips and shoulders. I also have problems with my hands and elbows. I'm HLA-B27 positive, and showed a small amount of edema on my SI joints in and MRI. My x-rays are clear and there isn't enough evidence for a diagnosis. I suffer from joint pain every day....sometimes its bad and sometimes it isn't so bad.

I understand how much of a frustration it is. You know there is something wrong with your body, but can't get a diagnosis. What's even harder for me is that, outwardly, I appear to be a normal, healthy, young female. Sometimes people don't understand when you try to describe your pain because they can't see it. My rheumatologist seems to agree that we should keep AS in mind, but wants me to wait and re-evaluate later.

Hope you get an answer soon.
Posted By: KRISSYO List Your Symptoms-New here HELP! - 12/13/09 09:08 PM
Hi there! I'm so glad to have 1. finally figured out what is wrong with me (I've self-dx'd myself btw) and 2. found this forum to read and understand better how it works and that I am not alone! I'm so confused though as to why I also have the symptom of upset stomach and gastrointestinal malaise. Anyway here are all MY symptoms: thankfully I don't have knee pain or elbow pain. I seldom have bad neck pain which also makes me count my blessings. I've suffered for years from back pain on and off, not severe at first though. The very first clue was onset of sternum pain in rainy or cold weather yrs ago in my early 20s. And it popped all the time. Later in early 30s, I developed severe sternum and shoulder pain, like arthritis! i WAS CERTAIN THAT it was from a purse I was carrying so I switched. My back ached but it wasn't severe. Then I lost my job and started working out intensely in a ballet class and all symptoms vanished. I thought that it was caused from stress and that I had cured myself through exercise. When I got another job I could no longer work out every day but did still work out. That's when my severe onset of back pain started. I went to chiropractors, masseuses, nutritionists, physical therapists and gym trainers. NOTHING alleviated this on and off MISERY. Some days I was in so much pain I jsut wanted to die or take morphine! I got a special chair at work, heating pad, massager for the chair, massager for home, etc. This is when my hips and thighs started popping, locking and ACHING like hell certain days. Sometimes coming fully out of joint! I also noticed in the last few months the bottoms of my feet would hurt so badly in the morning but then subside eventually. Then for months on end the backpain would all but DISAPPEAR! Mind you, the sternum aches are gone too forever but still sometimes lock and pop. But the back pain so severe and recurring has left me so bewildered and depressed some days. When I recently looked up my symptoms AGAIN now with the onset of the foot pain, BINGO I found this site! I'm happy to know I'm not totally nuts and imagining this pain cuz I knew it was real. But to not be able to explain what it was or why it's caused was vexing to me to try to get people to understand. I've been told by my psychologist that I go to NOW for the pain and the sadness it causes that it is largely in my mind and due to stress. I knew she was wrong becuz of the fact that it would disappear altogether sometimes when I was stressed to the max! It was very weather dependent it seemed to me. I was not imagining that!!! I knew it in my heart this was an ailment of some kind. What eludes me and confuses me is the recurrent bouts of stomach aches that I get and bloating and cramping that seems to accompany this disease. Where does it come from and how is it related AT ALL to a skeletal disease??? How is this possible> I even understand now why both my wrists ache and POP SO LOUDLY sometimes but cannot understand the stomach pain. HELP!!!
Posted By: Britefutr Re: List Your Symptoms-New here HELP! - 12/17/09 05:12 AM
Hi Krissyo, welcome to the forum. Intestinal disturbances are very common with spondylitis. These autoimmune diseases are not limited to the skeleton, organs are also affected... skin, kidneys, stomach, intestines, lungs and even the heart.

There are alot of diseases with very similar symptoms early int he disease and you could very well have one of the spondyloarthropies. There are some key features that are sort of hallmarks of these diseases. That doesn't mean that these are black or white, but so common that it is useful to help pinpoint a particular disease. Pinpointing the disease can help you learn what to expect, so you can plan your future and so you know what symptoms might be related to your spondylitis and what is not related and should be addressed separately with your doctor. Hopefully you will discover that you don't have AS (I pray for you), or that you have a mild case that can be stopped without further damage.

Are you very stiff and painful in the morning when you wake up?
Do you feel better after you've moved around for awhile and "warmed up"?
Does exercise relieve the pain to some extent?
After heavy activity, when you sit down to rest do you stiffen up?
Does the pain worsen late in the evening and interrupt your sleep?
Does the pain "flare up" and become severe for 5-10 days at a time and then subside to a more manageable level, then disappear completely for a period of time?
Have the areas of your pain become more severe over time? and have you lost range of motion in those areas over time?
Do anti-inflamatories, such as Advil or Aleve help the pain (at least to some degree)?

The people on this board will answer yes to most of these questions. These are some of the medical history questions that help distinguish spondylitis from other rheumatic diseases such as RA, fibromyalgia, etc.

The intestinal issues that most of us have are just as you describe bouts of bloating, pain, cramping, alternating constipation and diarrhea. This is generally termed IBS, but can progress into more serious conditions such as ulcerative colitis or Crohn's disease (also an auto-immune disease)

Popping isn't necessarily a symptom of spondylitis, though as joint damage starts we get a grinding sound, like there is sand in our joints. Some of the things you describe sound a little like hypermobility syndrome, you may want to look that up and see if anything else seems to fit.

Anyother questions you may want to post on the general message board, not everyone checks this board on a regular basis. Or you can of course email me if you would like.

Until later, take good care.
I've done this before...but what the heck...here it goes:

Pelvic girdle pain/pulling
low back pain
right hip pain
distal digit (fingers) pain/stiffness
neck stiffness and pain
oh yeah...I am HLA-B27 positive, too.
I take it your feet hurt, LOL. I think that is clear in your post. Mine were real bad about a year ago, could not walk. I had surgery on one and it didn't help at all, but the good news is, after a year both are better. Not pain free, but hey I can walk. Hope it gets better for you too. I have night splints and berkenstocks orthotic shoe inserts. They have helped alot.
haha...yeah...they hurt just a little! (sigh!)
Hi folks,

I have already posted a few questions in this forum but I figured I would list my symptoms here. I am a 32-year old female who was diagnosed with AS last week.

For the past 3 years I have had:
SI pain on my left side
Hip pain
Low back pain
Side pain (ribs on left side)
Neck stiffness and pain, worse in the mornings
IBS symptoms
Pain in big toe, seems to be a tendon?

Prior to these issues I had been diagnosed with mild scoliosis, kyphosis (which the rheumy I am seeing now says she doesn't see), IBS, and fybromyalgia.

I am HLA + but x-rays do not show fusing or inflammation in my SI joint. Following up with the doctor this week. Will keep you all posted. smile

Love this forum!
Originally Posted By: ljohnsy
.....but x-rays do not show fusing or inflammation in my SI joint.....

Laura - you don't need to be fused to have AS, and xrays won't show inflammation

I've had all of these symptoms except IBS at some time or another, especially fatigue, rib pain and neck stiffness, also had painful big toe in the past, one quack told me it was because I had been discoing in stilettoes!
Posted By: KRISSYO Re: List Your Symptoms-New here HELP! - 12/22/09 02:23 AM
Hi Britefutr !

Re: ur post...Are you very stiff and painful in the morning when you wake up?


Do you feel better after you've moved around for awhile and "warmed up"?
Yes immensely

Does exercise relieve the pain to some extent? Yes it does

After heavy activity, when you sit down to rest do you stiffen up? Yes when I have been walkinb around afterwards my back hurts so bad it's unbearable

Does the pain worsen late in the evening and interrupt your sleep? Yes sometimes I wake up it hurts so badly

Does the pain "flare up" and become severe for 5-10 days at a time and then subside to a more manageable level, then disappear completely for a period of time?
YES that is what iso strange bcuz sometimes it so bad for weeks on end and then it all but disappears.

Have the areas of your pain become more severe over time? and have you lost range of motion in those areas over time? Yes I've lost range of motion in my back and it has gotten worse over the last 7yrs.
Do anti-inflamatories, such as Advil or Aleve help the pain (at least to some degree)?
Advil is the only pain reliever that seems to help.

Posted By: Echo Re: List Your Symptoms-New here HELP! - 12/31/09 04:35 AM
I'm 47 and have had AS since about 20 yrs of age. Anyways, first post and I thought I'd list mine:

Jaw -- Ltd. Range of Motion / Stiff
Neck -- Same as above (fused)
Shoulders -- Same
(L) Elbow -- Same
Center of Chest -- Sore to touch painful at times.
Ribs -- Sore sometimes / Sometimes very painful w/a sneeze.
Spine -- Sore & Limited ROM
Sacrailliac -- Fused (who knows if I got close on the spelling?)
Hips -- Stiff / Can't spread my legs very far apart.
Knees -- Both / Left one scoped a couple of times when it started
locking up.
Ankles -- Swollen / Stiff
Toes -- All to one degree or another. They are also numb on the
bottoms. The numbness was preceeded by a feeling that the
bones in my toes were touching the ground. If you've ever
had a firecracker go off in your hand the feeling in my
toes was the same as that afterwards.

Heart Murmur was attributed to AS (possibly). I tend to think so because once I started Remicade Infusions murmur went away... But, who knows?

Most surprising to me was when my ribs (I guess between them would be more accurate) started giving me problems.

Most beneficial medication was Remicade. Taken in conjunction w/Methotrexate BTW.
Posted By: avonldy Re: List Your Symptoms-New here HELP! - 01/05/10 08:50 PM
I was diagnosed last month by my GP after he had x-rays taken because I was having so much back pain. We were both surprised after the x-ray results came back. The x-rays showed that I had severe and long lasting arthritis in my lower spine and sacroiliac area. Earlier back x-rays we described as my having degenerative disc disease. Now that I look back, I see that I have had AS symptoms since my late teen years with many aches and pains labeled as tendinitis

Besides the tendinitis, I have had Costrocondrites(sp), neck and shoulder pain, rib pain, knee pain,elbow pain, heel pain, unexplained fatigue and low grade fevers. I have had ulcerative colitis for many years.

What is different about my case, is that I wasn't diagnosed until my late 60's. I have had all the symptoms for years, but no one ever put all the pieces together until now. My GP has been saying for years that I had "some kind of inflammatory arthritis". He sent me to a Rhumitoligest(sp), but that doctor said I just had ostio arthritis and to take Tylenol.

My GP put me on a short course of Pred, it helped for a while, but the pain came back after I stopped taking the Pred.

I cannot take any of the NSAIDS because of my ulcerative colitis so we will have to find an answer to what to take other then pain pills.
Posted By: BoomhauersMom Re: List Your Symptoms-New here HELP! - 01/13/10 04:09 PM
Okay, here goes smile

Jaw - TMJ
Neck/Shoulder Pain
Rib cage/Center of Chest Pain
Blurry Vision
Right Wrist Pain
Swollen Hands/Fingers (Injections Help)
Left Hip Pain
Lower Back Pain
Achilles Tendon/Both Feet (Very Painful)
Heel Pain
Big Toes/Both Feet Feel Locked
Unable To Sleep
Iritis Multiple Times (Require Injections)
Constantly Feeling The Need To Slouch
Stiff For 2+ Hours Ever Morning
New to forum posted on womens board thought i would list my symptoms

Heel pain that traveled to legs in early twentys.
low back pain in twentys thought was from polycistic ovarian disease.

years of infertility
Interstitial cystitis with urinary retention have to self cath
Bulging disc that later ruptured in mid thirtys
Chronic wide spread body pain
+ rheumatoid factor but low blood count to treat w/meds,c-reactive high, sed rate for immflammation high
Failed lumbar back fusion
All over joint pain
lumbar, thoracic and cervical pain with degenerative disc disease
Low vit d
tremors legs and arms, hands weak drop items
Muscle weakness
Poor posture
Depression and anxiety
memory fog
Well here it goes I dont know if they are all related to AS but I like to blame it all on it lol

SI pain
low back pain and stiffness
jolting pain through spine from neck to tail bne
increased bp
muscle spasms over entire trunk
sore Achilles tendon
emg= moderate level for SI and L-5
mri= effusions at several facet joints
sciatic pain
limp while walking
leg weakness due to nerve pain
stress..hair falling out
constant low grade fever
constantly not feeling well although nothing usually develops
carpal tunnel
shooting pains in ribs
rotated vertebrate (possibly from muscle spasms)
neck stiffness and pain
brain fog
constant eye discharge and irritation
sleep haha whats sleep again?
cystic acne
occasional shooting pain in feet
Geez thats enough for now no wonder I am depressed!

In addtion to many of the above, I've got a couple that I didn't see listed, so I don't know if they're unrelated. Any comments would be welcome.

1/ Pneumonia - I get pneumonia a couple times a year - every time I get anything approaching a chest cold. I've always assumed that it was because of not having proper chest expansion, and so I'm not getting full inhale/exhale from my lungs.

2/ Collar Bones - or more specifically, where the collar bone meets the sternum. Stupid painful.

3/ Hips - my hips lock-up, kinda like a muscle spasm, but more like giant vice-grips (and then I fall down, and try to look not stupid).
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 01/28/10 04:13 PM
welcome will, please write more about yourself on the main discussion forum. personally can relate to the collar bones. my whole upper skeleton is bone pain/tendonitis. see you on the forum. sequoia
Rib pain, taking a deep breath always hurts-sneezing was excruciating, now just uncomfortable
pelvic and hip pain
unable to lay on side due to discomfort
sometimes can barely walk due to hip pain
exherting myself in any way leads to lots of pain, more like tendon pain, like hoeing, raking, vacuuming.
Extreme lower back pain
neck pain w/limited range of motion
Knee pain (both)
Hip pain
sporadic shoulder and foot pain
Extreme fatigue
neck pain
back pain
knee pain
jaw pain
scalp pain
tingling/numbness in hands
burning eyes
light sensitivity
night sweats
weight gain
tender/thin nails
Medical History:

Auto Immune Hashimoto's (Thyroid)
Poly Cystic Ovarian Syndrome
Insulin Resistance
High Cholesterol
Chronic Gastritis
Gallbladder removed
Hidradinitis Suportiva
B-12 Deficient
Occasional Migraines
TMJ (not improved with night guard, I clench all day)
Rhinitis (Chronic sinus issues)
Vitamin D Deficient (told 1/18/10)
Undiffrentiated Spondyloarthropathy

Symptoms: (may or may not all be related)

*Chest Pain - spreading (made worse by pressure of seat belt, touch, etc.)
*Shortness of breath (made worse by pressure of seat belt, touch, etc.)
Pain in ribcage between bones
Joint pain (Intermittent) fingers, toes, wrists, knees, elbows, ankles, shoulders, hips
Cramps in muscle or flesh or pain in legs and arms
Severe flank pain (approx. 2 years on and off) - Kidneys ruled out
Frequent headaches more frequent now
Cold hands, colder feet (had before thyroid treated has come back, thyroid levels are in normal range)
Itchy, rough skin on face, back and legs - worse in cold weather
Face gets very red and itchy and bumpy around ears and hairline - worse in cold weather
Chest was bright red (since spring) until recently, it is starting to lighten some (even in the hospital they asked if it was always that red)
Neck pain - seems swollen at times
Back pain
Hip pain
heel pain
Inner thigh bones hurt and pop
Other joints pop when walking (knees, toes, back)
muscle twitching lasting several minutes (can see it)
Eyes have been getting dry lately
Breast tenderness and pain
Lumpy tissue under side of arms and on flank
Sometimes get tremors in hands
Loss of Balance sometimes
High pitch sound in ears
Anal itch?
Vaginal Pain
Sometimes Blood Pressure goes up (145/95) with very little exertion (feeding dogs, playing video game, carrying dog outside)
My normal BP is approx 117/78. This also increase shortness of breath
Nasal sore in same spot that comes and goes, very painful
A few times vision is weird, at night driving the lights seem to glow 4 times their size and this makes things seem blurry
Severe sharp pain in left eye when I cry
See Floaters
Have had episodes of palpitations and rapid heartbeat (100-130) though blood pressure is normal
Occasional low grade fevers at night (99.1)
1. joint pain
3. nasal sores
4. mouth sores
5. hip pain/stiffness
6. feel like lower part of spine is stuck togeher
7. itchy skin
8. itchy red painful dry eyes
9. altered gait at times
10. lymphocytic colitis
11. kidney issues (hyperparathyroidism)
12. limited mobility overall
13. previous debilitating neck pain
14. popping joints (esp. shoulder and elbows)
15. complete change and decrease in ability to exercise like I used to:(
16. carpal tunnel
17. cervical stenosis
18. blurred vision and cataracts ( in my early 40's)
I9. fibromyalgia at times

i dont know what is actually related but i also have slow to heal wounds, fevers of unknown origin, sudden cessation of menstrual cycle at 43, have had shingles, pneumonia etc all in the last year when all the other junk began....i am am just saddest of all that i am always so tired and cannot function like i used to. i was always healthy and active and looked and felt very good..now i am happy if i can get kids to school, put on make-up and have a few good hours per day..
Here is my two cents worth:
lower back pain
pain between my shoulder blades
neck pain
limited neck mobility
neck fused in downward position
upper arm pain
shoulder pain
limited over-all mobility....can't bend or stoop
tired ALL the time
pain related sleep disorder (maybe 2 hours a night)
Hi, I am 52, female from NJ with recently dx AS. For six years, I've had slowly increasing sacroiliitis(sp?) and iritis. Like others I've read about on this site, my opthamologist is the one who first mentioned AS and suggested I see a Rheum. My rheum factor was neg, HLAB 27 was positive. The dr. said however, it was unlikely I would get AS or if I did, I'd not get it "too badly." Also, he said there was nothing I could do about it anyway, so not to worry. I then had bilateral carpal tunnel surgery which was successful and started having reg massage therapy which decreased my SI a LOT. Once my therapist did some myofascial release with the surrounding muscles, I felt much better. I was so impressed, I went to school and became a certified massage therapist myself. 2 yrs later, I had severe iritis, bilat SI with lumbar pain, heart palps, high BP and was pos for Lyme disease. Took a long time to see the rheum as he was booked up. However, on the phone, he said it sounded like AS. Meantime, a screening colonoscopy noted sclerotic areas around SI joints. Then I saw him and had an xray and he said it was AS but as I had gotten it relatively late in life and am female, my symptoms should be mild. I said I'd hate to find out what severe symptoms were like if what I was feeling was "mild." He px'd Arava which made me nauseous and gave me stomach/panc? pain. I will see him on the 26th and we will decide what med to try next. Previous health issues include pancreas divisum-birth defect, did not have symptoms till 23 yrs old. Had three major surgeries and now have chronic pancreatitis-very painful just below sternum, sometimes goes thru to back, nausea, bloating. Been on pain meds many years for that. Had lots of probs with drs deciding I was drug seeking, attention seeking, etc. Final surgery showed the stent they had put in had shattered and pierced the pancreas. They removed as much of the shards as poss, took off the tail of the pancreas and then attached the pancreas to my small intestine. Still have chronic pain but less highs and lows, just steady pain. Blood sugars spiked high twice, then mostly low during Lyme disease flare up time.
General symptoms:
*pain in buttocks and hips with burning pain along anterior iliac crest of hip bone.
*recent pain progression up into lumbar spine with stiffness.
*Forward leaning posture and awkward gait, lurching and or limping. Use cane occasionally, used crutches during bad flare up one week.
*Knee pain, Baker's cyst and surgery for meniscal tear on left.
*Short duration of neck pain twice recently, but mostly just can't turn neck as far, noticable when driving!
*Spinal pain up into thoracic region when I get flare ups.
* Recent bilat SI joint cortisone injections have helped lessen degree of pain in the SI joint capsule.
*Fatigue, difficult staying asleep, falling asleep, feel worse upon waking, esp in AM: stiff, pain.
*Weakness in joints, worry about safety: falling. Sometimes fingers, arms or legs just won't hold me as in past, just collapse.
*Depression, tried Paxil, made me too tired in daytime, stopped it.
*Occas foot cramps or itching.
*Decreased core strength, less back flexion.
*Occas muscle twitching in face or legs usually.
*Occas dizzyness.
*Frustration at not being able to plan as each day is different, might lose part time job caring for an elderly man. Tired of family and others saying for me to just lose some weight, exercize, sleep more and grin and bear it like everyone else.

Thats about it. Id like to have a toppic on what treatments, activities, meds, etc. people find to be particularly helpful, ex. I find massage therapy to be essential as part of my health regime. Thank you, Dorene472
Originally Posted By: Dorene472
............. Had lots of probs with drs deciding I was drug seeking, attention seeking, etc.......

*Decreased core strength, less back flexion.

so women on the boards have been told it's all in their head or been dismissed for other reasons, that really pisses me off - so many quacks out there

for your core strength and flexibility Dorene, try hydrotherapy and other exercises with a physiotherapist, and remember it took a long time to get the way you are, it will take time to build up muscles again
Hi all new to the forum.

I am experiencing the following:

Pain in the following area:
Heels and balls of feet
Lower back
Shoulders (esp the right shoulder)
The right elbow
The Right wrist
The right Hand
Constant headache


Noisy Joints:
Neck (so loud my wife can hear it)

Since starting my Ebrel I have gained a sensitivity to sound.

All the above, sometime or other. I am 45yrs old and my wife say's I act and sound like I am 90. Everyone else get that too?
(She doesn't mean it in a bad way, she is very suportive and helpful)
Originally Posted By: JoeK

Noisy Joints:
Neck (so loud my wife can hear it)

I have noisy bits too (I think the noise is called crepitus)
someone from the AS exercise group told me his neck had improved a lot after taking glucosamine so I decided to try it too, the noise in my neck disappeared after about 3 months and has not returned, I think my knees are quieter too now
Cracking sounds in all my joints
bone pain in my lower back and neck
hip pain
groin pain
tingling in hands and legs
knee pain
rib pain especially when I take deep breaths
difficulty moving after sitting
slightly slumped over and walk with a limp at times

My doctor had a hard time diagnosing me, kept saying it was stress. After xrays I was relieved to know that is what I have. Because the pain and other symptoms made me think I had something much more serious. Unexplained headaches and swollen red eyes. My jaw click and sometimes I can't open wide enough to eat. I am going to start joining a support group soon.
Originally Posted By: kim

bone pain in my lower back and neck
hip pain
groin pain
knee pain
rib pain especially when I take deep breaths
difficulty moving after sitting
slightly slumped over and walk with a limp at times
swollen red eyes. My jaw click and sometimes I can't open wide enough to eat.

your doc thought this was from stress??? these all typical AS symptoms
Hello all!

My name is Tara and I am new to the board having recently heard of this when trying to self diagnose my problem (Yes I know it's naughty).

I'm 25 and just finally got frustrated with all these symptoms I've been having since I was in high school.

*I have extreme neck pain and stiffness mostly on the right side at the C1-2 level.
*There is tightness of my chest which I thought was bra-related until I stopped wearing one and it didn't decrease. My sternum cracks and pops and feels like it needs to be stretched out somehow.
*My low back/ hips area is almost always sore and stiff and when I stand up from my desk it cracks and pops. If I push my knees together my sacral area pops (which gives me the heebie jeebies it feels so weird!)
*My shoulders, hips, knees, ankles and wrists are sore most days but will switch off between them all.
*I'm constantly fatigued. By the time I get home from work all I can do is lie down. I'm lucky if I have enough energy to clean my house once or twice a month.
* Muscle soreness and stiffness all throughout my body. I even surprised my massage therapist with how tight my body was. Sore to even the lightest touch.
*TMJ (undiagnosed)
*Nausea (from slight to severe depending on the pain).

I finally went to my 1st Dr. appt about this and she pretty much poo-pooed all my pain. She said it was due to my depression/anxiety, thought it was "just muscle pain" and wouldn't even order an x-ray until I fought with her. She finally allowed a C-Spine since that is where my pain is the worst. Thankfully, I work at a radiologist office so I had them take a close look when my films came in. I'm still waiting for her (my radiologist) to call and discuss it in person but I read the report and she is recommending a C1-2 CT. The report says I have "loss of cervical lordosis, mild degenerative change and possibly sclerosis at the C1-2 level".

Hello everyone,
When I lay down to sleep; I have numb right arm,
tingling fingers and ackey pain in my arms.
It wakes me up hence insomnia.
By morning; upon standing my
feet tingle. I didn't sleep much!
During the day; fatigue, carpal tunnel
symptoms-IT HURTS TO SIGN MY NAME! I drop anything
small like paper adn the remote or my keys. *(While
my doctor, who I dropped too, tests me by making me grip
his hands hard! OH MY GOD!... THE PAIN!)
By night time; LOWER BACK PAIN!
Did I mention THE PAIN! Angina! Back,
shoulder and lower back pain if I try to ben
at all.
I can't do my normal work during the day!
I can't work! I can't play!
What am I suppose to do?
SUFFER?...... NO!
I tested my DNA and my telomeres.
Try 23andme.com or spectracel.com
I'm going to live til 100!
In pain? No again!
I use a tens unit! That works! $300!
I'm still drug free! Thanks to a new doctor!
Now, I just need a solar panel umbrella to
power the tens unit and a battery pack to
What do I have to look forward to?
Paying for my doctor's livelyhood!
How did you say this effects me mentally?
How does this chronic pain and money pit
make me mentally ill?
And how does this affect me by law?
Why isn't the macrosytotis an issue?
It has to do with bones.
How does cortisol from stress apply?
Can't I just take an antihistamine? No!
Wouldn't the decongestant cause an
increase in high blood pressure from the PAIN!
Doesn't the cortizone injections excellerate
the degenerative process?
I'll never ride another horse or street bike
again? I've been diagnosted with degenerative
joint disease and I have spondylitis.
My bone scan showed all over bone degeneration
and bugles in my spin after I was rearended in
2003 which caused me to slam the force of the
wreck into my car then into my body which shoved
myhead into the roof of my corvett!
Why does my right hand swell up then become tingly?
I have degenerative joint disease all over. C? and L?
have bulges after the 2003 wreck. CT or MRI didn't show
the bulges the year before! My dad had spinal issues;
possibly spondylosis.
Hi All- I will list my symptoms as well.

-Stabbing rib pain.
-Back/neck pain
-Right Knee- uncomfortable
-chest tightness
-anxiety gets worse when pain arrives (in waves)
First time on and WOW can't believe how many people!

My symptoms come and go.. sometimes Enbrel takes them away.

"sit bone" pain, mostly right side
jaw pain
neck and back
shoulders, tendonitis
soooo tired
takes forever to get going in the am sometimes
feeling just plain icky (flu like symptoms)
don't sleep well or much
depression (when it's at it's worst)
I was having reoccuring UTIs that tested negative but I take a low dose antiobiotic for it, doc said it's a symptom
list goes on and one...

Relieved but sad for you all to not be alone
My x rays are "normal" so I looked like a liar, MRI showed tendonitis... a good rheumatologist will know what to look for.
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 04/03/10 02:38 AM
hi michelly...welcome to the forum. post some info on the main discussion forum, start a new topic by introducing yourself, and let us know more than your symptoms. we are a good group even if we are all hurting greatly. consider keeping a daily diary of symptoms and pain levels (YOU TOO, DELYNN !!) and you will find a good pain chart many use on the main forum. it is under the topic "sticky, spondylitis info" click on that and scroll down to the chart. your docs will so appreciate it if you are keeping track of symptoms and meds etc.

welcome to you all and get in on the main forum. oh and happy easter, prayers and peace, sequoia
I found the Pain Target notebook here: http://www.painfoundation.org/learn/publications/files/TargetNotebook.pdf

I printed it off. It has pages to take to your Doctors showing your pain levels, what meds and activities you used to treat your pain. It even has a place to record if and how often you woke up during the night. I sure wish I had found this years ago.
Don't know if this is the right topic to post this on, but I'm curious on how different people's symptoms started. I'm in my late 20s and have had back pain for a long time, but I have different kinds of back pain and I'm curious if other people have similar pain. Just got diagnosed with AS two weeks ago and am going back in a couple days to talk to the doctor more.

Right now, it's not severe. Sometimes, it is just lower back pain all around. Sometimes the pain goes down into my buttocks to where it feels like I just need to stretch it out, but that doesn't help. When it's real bad the pain shoots down my right leg and I have to be careful standing and walking so I don't fall down when my leg gives out.

For the most part, it doesn't prevent me from doing much unless I get that flare up which isn't too often right now. I have other pain in my foot and a little in my chest, but nothing bad. I'm just curious what are normal aches and what might be developing symptoms. Thanks for any info.
@Sequoia TY for your responce, I will start to document my pain.

@r01bns for me everything kind of creeped up on me. I had arthoscopy on my knee and the swelling wouldn't go down and felt like I never had it done. Then I started haveing problems with my shoulder thinking I slept wrong. Other things like the pain in the buttocks I have had before but I didn't think anything of it until the doc started mentioning symptoms. If you aren't that bad off maybe ibuprofin will maybe be enough. I think everyone is so unique with timeframes and such. I did ibuprofin until it got to the point I'd take anything to get rid of it. Each flare up is unique for me, strikes different areas. I can still do everything but it's a constant push to keep going sometimes. Whe nyou get the that point your doc will have solutions for you. I take an Enbrel shot once a week that really helps most of the time. Unfortunatly I feel like this disease has no definite answers but a matter of finding what works for you. Just my opinon.

My symptoms include:

-severe back pain
-very stiff back
-severe back spasms
-pain in buttocks at times
-severe plantar fasciitis
-GI issues
-difficulty lifting, bending, and twisting
-difficulty sleeping at times

These symptoms are off the top of my head.
Daily Hip,shoulder stiffness,pain
Ankle,knee pain-intermittent
Left chest muscle/heart(?) pain when move left arm
Hey everyone! I just discovered this website and was hopefully intriged! I am 32yrs old and have suffered from unknown chronic pain for years. Went to many doctors and they just send me to one else. Frustration has taken over and now I just suffer.
I chronically suffer from: severe lower back pain, numbness from my lower back to my feet( no matter how or what i'm doing even while walking), severe joint pain(I move like a 200yr old), horrible migraines, i now have terrible insomnia(no meds work for long), normal daily tasks are painful and very tiring, I can't seem to feel rested, the more I sleep the worse I feel but i'm so tired all the time, I will start walking and loose all feeling in one or both legs and fall there is no warning. Waking up is always a joy I never know which part of body isn't going to work or if all my body isn't going to work. All my major joints are effected all the time, knees hips shoulders ribs you name it!

Please if anyone can offer some advice or a decent listening doctor in maryland i would appreciate it, and if any of you had similar symtoms please let me know, I feel like i'm losing my mind. One doctor said it sounded like brain tumors, then said oh but its probably nothing don't be so worried! THANKS EVERYONE!!!!

1)Shrinking(lost almost an inch in less than 1yr)
2)Severe joint and muscle pain
3)Instant numbness of extremities while sitting standing or walking
5)Female problems
6)Loss of hearing
7)Eyes swollen and irritated(once and while)
8)Short term memory loss
10)Blurry vision that comes and goes
12)Loss of cartiledge in major joints
13)Pain in ribs(like being punched)
14)Short of breath
17)Chronic stiffness even with streching and exercise
19)Mood swings from pain
20)Weight loss
21)Decreased appetite(will forget to eat)
23)jaw discomfort and stiffness
24)Hand mucles contract causing a fist(can't be opened even by force)
25)Very low blood presure and heart rate(60/40)
26) Poor circulatin to extremities
27)Pins and needles are a constant battle all the time
28)Lose of muscle control(can't hold things drop things etc..)
Please excuse spelling its increasingly to to remember the little things.
Besides the chronic severe back pain...Some of the other issues I'm having( maybe not related but I'm starting to think they are)
Shredded tendons in both arms so epicondolitis and tendinitis symptoms
Sore finger joints, wrists elbows, Over-all weakness and pain in the hands and arms at rest and worsening with mild use
Bursitis in both shoulders so painful and limited movement, cracking and popping, with a flash of sharp pain, even under small movements
I used to be 5'11"...Now with the compressed discs and the fissures of the vertebrae...I'm 5'8" on a good day when I can stand up pretty straight
Ribs that dislocate on they're own (this causes extreme pain while breathing)
Often pinched Psyatic nerves on both sides (shooting pain down the legs and in the hips)
Chronic knee pain and locking in both knees
Pretty severe ankle pain from time to time
I used to call it HELPLESS RAGE...
loss of appetite
Chronic bronchitis and seseptability to pneumonia
Oh, this'll be fun ... Of course, I also have psoriatic arthritis, so I'm never quite sure which one is responsible for which issue:

1. Back pain - whole spine, but sometimes localized
2. Neck pain - now it's making all sorts of 'crunchy' noises and is very stiff
3. Rib pain - radiates out from the spine, making it hard to breathe without more pain
4. Iritis - always in my left eye, which is now fuzzy a lot of the time (chronic)
5. Hip pain
6. Swollen feet and ankles
7. Painful soles of the feet - they're swollen in a lumpy way. Annoying. Plantar fasciitis, with an extra swollen twist, I think.
8. FATIGUE. This is worse than all the pain. There must be a better word for this.
9. Sleeping is all off - hard to get to sleep, always feeling dragged out from lack of sleep
10. Major pain in hands/swollen joints - can't type on some days
11. Major pain in feet/swollen joints
12. Shoulder pain
13. Knee pain/weakness - and I live in the hills
14. Jaw joint pain/stiffness - this one started during the holidays

I've always had problems with my tendons - arms, mostly. This all but disappeared when I started taking Voltaren (NSAID), as did the knee pain (which is back). The spinal pain started in the lower left back and was beyond painful, making sleep very difficult. That started in my early 20's - and I just turned 50.

The swelling in my feet and ankles can be extreme, which is why I've been on diuretics, but those can damage my kidneys - and anything that touches the kidneys of an AS patient is a no-no. When the swelling gets bad, it's my whole body - I'm like an overstuffed sausage. This one confounds the docs.

I love that Tadao said 'socially inept'! ROFL!

- Chapps

Oh, and I forgot Hashimoto's ... hypothyroidism. And Crohn's. Forget about those - had 'em for a while.

And why didn't I get the part where I get skinnier? I was robbed!
symptoms - and a question or two.

It's kinda hard to be sure what is what, having HLA B-27 positive spondlitis, and MS, and Crohn's . . .

Sharp pain sporadically in one or both hips - for the last 20 years.

in he last two years:

Plantar Fascitis in both feet.
Inflammation of the tendons in the ankles. (And Pain)
Knee inflamation (supposed to have 1-2 Ml of fluid - removed 70 mL last month!)
lower back pain
neck pain
pain in all of the muscles in my upper back - is this related?
bursitis in both shoulders.

QUESTION (my reason for visiting here for the first time}

This last week I have discovered that my (debilitating)knee pain is GREATLY reduced by NOT TAKING A HOT SHOWER JUST BEFORE GOING TO BED!

Has anyone else heard anything like this? I can walk down stairs again!!!! I can bend over to pat our cats! My quality of life has improved immensely (note, it is only my third day today - but I did it intentionally last night, and was able to get out of bed without gathering my will and biting the bullet!

Originally Posted By: Matthew_Johnson
.........pain in all of the muscles in my upper back - is this related?

yes - painful muscles reacting to the inflammation in your upper back, maybe the spots where your ribs join your spine, the layers of muscle over the top can get very painful
It's not _particularly_ where muscles attach to the spine, but pretty much everywhere between and underneath the shoulder-blades, which includes the spine area, of course.

Thank you, I haven't been sure.
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symp - 05/17/10 03:32 PM
hey matthew, i agree with NOT taking the hot shower. think about it, inflammation causes heat, we have tons of inflammation with this dx. we don't need any more heat. although one would think it was a good idea, as in if we just apply heat it will feel better. many of us have found a warm shower really is better.

however, after a night in bed we will all be stiff and sore no matter what. welcome to the forum, get in on the general discussions. thanks wine for keeping up with this forum. you are wonderful.

But what about heating pads? I know I'm not the only one who gets pleasant, if temporary, relief from my trusty heating pad....
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symp - 05/17/10 09:13 PM
you know, jen, i agree with the heating pad situation you just mentioned. i also believe they provide temporary relief. just consider the basics, inflammation + more heat, usually = suffering. i have gone ahead, taken the hot shower, then just sat around and sweated LOL. little bit of relief, more suffering. i don't use heating pads. but hey, if they work for you! it's not like warming up to a margarita, eh?!

can't say I haven't medicated with a glass of wine, or a mojito (we have tons of mint in our yard!), now and then!
Hi, I'm new here. I was just diagnosed about a month ago. It was a relief to finally understand why I feel the way I do.
Here's my list of complaints:
•deep lower back pain
•achy left heel
•painful left Achilles tendon
•pain in left buttocks
•pain in right knee joint
•pain in pits of calves
•bumpy rash on my back
•creaky spine
•skin lesions
•achy upon wakening
•achy after sitting too long
•neck pain on right side
•short of breath
Thanks for reading!
* lumbar involvement since 1976 - double lateral laminectomy in 1979
* cervical surgical consult 2005 - feels like I have a knife sticking out of the right side of my neck
* visited Cleveland Clinic for surgical consult - was told that my pain was not 'specific' enough to operate (read - too much going on in too many levels)
* visited my first rhuematologist in 2006 - diagnosed with Ankylosing Spondylitis (THAT didn't take too long!)
* fell down my steps in 2008, broke my right leg (was told that due to AS, my bones are brittle)
* went for a walk at work over a lunch break and ended up taking six weeks off due to achiles tendon injury (again - AS was blamed)
* last July 4th, whilst riding my Sea Doo at 60 mph (yup, that's me...) injured my lumbar area (big surprise there), ended up having surgery to fuse L3-L4 and L5. I still have no feeling in my right leg from the knee down.
* frequent bloodshot right eye
* aortic valve is hardening - I also experience constant atrial fibrulation flutter
* recently developed fairly severe thoracic pain - sometimes radiates to my sternum - constant severe ache
* hands and wrists have some discomfort.
* sometimes severe iritable bowel syndrome (from AS or meds or both)

(or as I tell everyone who listens, other than my heart and back, I am in great shape!)
Lower back pain
hip pain
tailbone pain
neck pain
shoulder pain
upper back pain
breastbone pain
rib pain
can't get comfortable sitting, standing or lying down
pain keeping me awake at night
hurts to slide out of bed at night
elbow pain
knee pain
both hands numb
can't think
I'm so tired

But tell me, Donna, do you have fatigue? smile

Originally Posted By: mom2many
But tell me, Donna, do you have fatigue? smile


stiff neck
upper back pain
rib pain
lower back pain
muscle spasms
SI joint problems
hip problems
knee pain
heel pain
dry mouth
brain fog
I'm very new to this whole concept of AS. I began researching AS as a possible explanation for my pain, but was turned off by the overwhelming online response that it's a "male-only" disease. However, on this and other sites it seems like a fair number of women cad get it too.
In roughly 2003 or 4, I started noticing severe, eye-watering pain in my low back, right where my pelvis and spine come together. The pain was so bad at times the waist of my pants touching the area would hurt. After a car accident, I had "bursitis" in my right hip (the pain in my back skews to the right).
The bursitis comes and goes despite cortisone shots. My low back continues to worsen, and lately the actual bones in my backside (despite plentiful padding!) hurt to sit on. I can't get through the night without waking up in pain, and it takes every ounce of effort to get out of bed in the morning. This latest flair has been over the last 6 months or so.
I have suffered chostrochondritis since I was 15 (nearly 30 now). I am also tired all the time, and have had bowel troubles nearly my whole life.
I have a prescription for an MRI and hope to be able to afford one soon, since it seems Xrays aren't as useful.
Get a HLA-B27 gene marker blood test, if it is positive, there you go. Especially if you have other autoimmune diseases in your family, rheumatoid, lupus, Juvenille diabetes. My 2 daughters have AS and they are 19 and 22. Easy to diagnose really. Symptoms PLUS positive B27 PLUS family history.
Good Luck, it sucks
Thanks mooremama. THat's the thing--I pretty much have no family history of anything. Heart problems on dad's side, cancer on mom's. Other than those we're healthy. I seem to be the lucky one--migraines, major allergies, endometreosis and now, possibly, this. My dad thinks I'm a hypochondriac, my mom knew I was suffering but with her own illness (passed of cancer 4 yrs ago) couldn't help. My dad always says I'm wishing myself to be sick; I counter that I'm already there, I just don't know with what.
I'm going to check in with my GP soon, so I'll talk her into the HLA test. I wish somebody could help me figure out what is causing this pain, whether it's AS or something else. I just want to know where to start to get better or at least hold steady.
The HLA-B27 marker does not really prove anything. About 10% of people with AS are negative. Also only a small % of those who test positive actually have AS. It does help with the Dx though.

You really need to get a referral to a Rheumy from your GP.
Does anyone else experience popping and cracking joints all around the body?

My spine, ankles, neck, knees all pop and crack with every little movement. AND ESPECIALLY THE FINGER JOINTS of my right hand.

Please let me know.
Thank you.
recurring eye pain
recurring ear ringing
stiff neck
stiff shoulders
sore ribs
sore mid back
sore lower back
sore right shoulder
sore right hip & pelvis
sore right sacrum
weak right leg
recurrent pain in hands and feet
pain in "sits" bones
pain in heels while standing
recurring fatigue ~ sometimes completely debilitating
springtime allergies that bring on flares
feeling flu~ish in my bones and muscles
occasional mouth sores
occasional low grade fever, about 2 degrees over normal
depression/anxiety related to constant pain and fatigue
heat intolerance ~ I almost forgot this one!

Progression: 2 years ago this month I hiked 11 miles. Last week I barely made it 2 miles, and then I was in bed for the next 3 days with fever, exhaustion, and pain.
Yes! Especially my right hip and right ankle. It usually doesn't hurt too much, but it's LOUD!
I agree, go to a rheumatologist! And go armed with very specific information. The pain map is awesome, especially if you make one for good, normal, and bad days. Use color! yellow for good days, orange for normal, red for bad... you get the idea ~ whatever colors you like. I am ANA+, RF+, HLA-B27+ and have very little damage. My sisters are ANA-, RF-, and HLA-B27- and they both have a LOT of damage. Joint replacements and fusions, etc. The point of this story is that test results do not mean everything. Peace!
So, here's the deal.

I'm a 25 year old male of Anglo and 1/4 Native American descent. I'm fairly short in stature and make a pack of smokes last a couple days or more.

In my teens I started experiencing low back pain, mainly in a line along the right side, from mid-back to sacrum. This would show up spontaneously, sometimes in the evening, sometimes in the morning. I'd rate it about a 6.

At pain level 7 I want to cry. At pain level 8 I want to kill. At pain level 9 I'm shaking and passing out. I'm saving 10 for when I'm burning to death and getting kicked repeatedly by a mule.

Midway through my 21st year I began experiencing a sharp pain in the right sacroiliac joint and groin on the right side. At the time I was in the Navy recovering from a fracture in my L tibia that occurred while running during PT. I thought I just had shin splints until the bone went pop and I couldn't walk anymore. Although I was later separated due to the fracture -- I was in training at the time and not privy to the kind of patience other service members might get, highlighted by the "keep trying to walk on it until it stops hurting" treatment plan -- my focus was on the leg and the groin and sacrum pain faded into the background, probably helped along by the ultracet I was prescribed for the leg pain.

Several months after being separated, about a year after the first occurrence, I saw a urologist for the groin pain which was accompanied by a pleasant discharge. Tests for the usual suspects -- ie some venereal disease -- were all negative. The discharge went away immediately after a good pounding of Cipro, but after several courses of antibiotics and much Lortab the groin pain continued. Imagined having the throbbing "afterglow" of a good strike to the gonads last all day long. Painful story short, I underwent a unilateral orchiectomy -- safe travels Righty, wherever you are. After normal post-operative pain the groin pain did not recur and now I have a sexy cool scar, as well as a mandatory interesting conversation with the girlfriends.

After my recovery and Norco passed, the low back pain became just about an everyday thing upon waking up, along with some gut problems; loose stool, discomfort, intolerance of certain foods. I chalked these up to Life Sucks™ and lactose intolerance, both of which run heavily in the family.

About 18 months later I started getting that sharp pain in the sacroiliac joint again. I saw a doctor who said "Looks like sacroilitis" and gave me an injection of some NSAID I can't recall. I felt awfully ill by the time I got home, but my butt stopped hurting for a while.

For the next year and a half I ate a lot of Ibuprofen, a whole lot, and incorporated "my back huuuurts" into my daily b-tch list. That is, until one morning I woke up with an incredible pain -- I wanted to kill, so it was an 8 -- running along the right side of my leg from the sacrum, down my butt, the back of my thigh, across the knee, down the side of my calf, across the ankle and into my big toe. I saw the doc as soon as I could. He ruled out diabetes or anything real scary and decided on a radiculopathy affecting the L5 nerve, maybe sciatica. Blood work also showed that I was anemic, to my surprise.

I was given a course of steroids -- I'm STILL losing that 20lbs -- and a few days worth of Lortab and Flexeril. I was told to return if the pain came back, which was "highly unlikely" according to the doc. A few weeks later it was back. Same course of meds, same prognosis. Then, surprise, it came back a few weeks later, and I was prescribed the same deal and told that I should see "a specialist, or something."

Luckily, it was right before that last visit that my health insurance ran out.

So, here I am a few months later and this is what's going on from the bottom up:
- Burning, stinging, throbbing pain in the right big toe that continues up from the tip of the toe along the metatarsals to above the arch.
- Intermittent paresthesia in the 3rd, 4th, 5th toe on the right foot.
- Intermittent pain in the R achilles tendon area.
- Stabbing pain and burning in the right leg along the L5 nerve route from the toe, along the calf, to the knee, under the thigh, and into the buttock.
- Burning, stabbing pain, muscle spasms in the R patella-femoral area. Accompanied with sharp pains elsewhere in the knee and a swollen appearance as compared to the R knee.
- Sharp pain in the sacroiliac joint that is constant, regardless of rest or exercise, that is very sensitive to palpation.
- Sharp pain where the sacrum meets the spine that is constant, regardless of rest or exercise, that is very sensitive to palpation.
- Stiffness in the low/mid-back that subsides somewhat with activity. However, it takes two or three hours after waking up before I can look over my shoulder to check my blind spot while driving, touch my right hand to my left shoulder, or lift my arms above horizontal to reach for something on a shelf or whatever without significant, restrictive discomfort.
- General persistent gut pain, worse after eating, until... Frequent, loose bowel movements. Occasional backing up of food into the throat after eating. Feeling like I have to poop but can't, with the same kind of painful involuntary clenching that comes with a bad case of diarrhea but is non-productive. Bloating. Nausea.
- There's a little, painless mouth ulcer that keeps coming back.
- Fatigue.
- Difficulty concentrating.
- Lack of appetite.
- Anxiety about the effect this has on my ability to work.
- Peculiar vision changes. Decreased night vision. Occasional blurriness. Halos around bright lights. Feeling like my peripheral vision is reduced on the right side.

All these things present themselves at some point during the day. Sometimes individually, often as a combination, lately all together. The severity varies day to day, and active days can be just as bad as less active days. Wednesday I wake up at a 7 with that whole list and it varied between 7 and 8 the whole day. Thursday it's in the 5-7 range. Friday it starts at a 4, got to maybe a 6, down to around a 5, back up to a 7 by the time I started writing this and becoming increasingly irritating. If I had to pick a mean, I'd say the pain is always at about a 6, but for the last week it's been sitting at a high 7.

Really, I think this is part b-tch, part putting it all into writing.

Both an uncle and a cousin on my mother's side have been diagnosed with ankylosing spondylitis. My mother is disabled and has been treated for rheumatoid arthritis since her late twenties. My father thinks I should tough it out, though ignores the fact that I once ran on a janky leg until it broke... at least that got better after time, not steadily worse.

I'm just tired of this. I'm tired of taking ibuprofen by the gram. I'm tired of waking up and walking all stiff and bent over like an old man when I go for the mail.

I've had my theories about sciatica, and reactive arthritis, and this and that... looking at the big picture, the family history, having read all I've read, being tempted to go the emergency room several times in the last week, wishing they sold morphine at the corner store, I really have to concede that something's real screwed up and I don't have to live like this.

Hopefully there's someway I can get on my parents' health insurance... I still owe money to the guy that cut out my right nut, and I can't imagine how much getting this taken care of will cost.
First off, NounNoun, welcome. Secondly, way to go on keeping your sense of humor. Or maybe I'm just completely warped, but I found your post funny as well as enlightening. Other than the family history and the obvious inability to lose a gonad, our stories are very nearly identical.
Last week I got the oral results of my MRI--a herniated disc. Since I've had this pain for the last, oh, 6 years, I'd love to know how I keep re-reupturing a disc. I won't believe it till I see the films with my doc this week.
A couple of ideas for you, insurance-wise.
Depending on the state you're in, try getting on state-sponsored insurance. Particularly since you're a quarter NA--especially if you're part of a recognized tribe, make that your first move. Second, how was your separation from the Services handled? Anyway you can get into VA? I know it's not perfect, but it's better than nothing and better than bankruptcy. Unfortunately, because you're 25 you likely won't be able to piggy back on your parents' policy. Even with the so-called "reform" kids are off at 25 unless they are permanently disabled.
If you want to go through the process of state-sponsored or supported health care, you can send me a private message. In a past life I helped people get access to health insurance and know a lot of tips on who to contact in various states.
Good luck.
NounNoun... sure sounds like Reiter's / Reactive Arthritis to me. I'm 20yrs older and have had very similar pain, etc as you have described since I was 25. I'm on disability and at this point, after trying every med known to man, I treat the pain & symptoms with morphine type pain meds. That's the only thing that makes life barable for me. I wish you the best. You're not alone... I made it 20yrs past where you're at now so it can be done. Hang in there and go to a pain mgmnt doc for help with your pain. Ps- morphine based generic drugs are fortunately very cheap if you have no ins right now.
pain in si joints radiating down both legs
pain in elbows, shoulders, wrists
unsteady walking
swollen knees
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 08/05/10 04:32 PM
welcome erna, come on over to the general discussion forum and tell us your story. have you been dxd (diagnosed) yet? how long suffering?

you have come to the right place for answers and understanding.

prayers and peace, sequoia

Really a educative and informative post, the post is good in all regards,I am glad to read this post.


Cell Phone Plans
I'm not used to going into a forum of this type, but for the last few years, the old run around from my Doctors has me down.
I have been diagnosed with everything from Crohns to acid reflux, heck, they even did exploratory on my intestines. my hands hurt most of the time, I've had injections in the lower back,(s1-L5)...both knees have been scoped, left knee is new on outside half...right now I'm recovering from loss of scapular muscles on right shoulder..same thing i had on left shoulder years before. Focus is difficult at times...and at times everything just hurts so much , i just want to sit down and cry, and I'm just so tired all the time...yes some days i feel ok..kinda..it takes awhile to loosen up, but as soon as I slow down or sit...neck ,back, arms, elbows,hands,eye's stomach.I'm just so tired..even as I type this i want to cry...tomorrow i see my primary Dr., i hope he listens this time.thanks for letting me rant and ramble..sometimes i feel so guilty feeling like maybe it's just me whining. All i want is answers, to find away to feel near normal again if that's ever possible, and to know if anyone else has also been diagnosed with CVS...Cyclical Vomiting Syndrome..or/ abdominal migraines as my gastro doc thinks..again thanks for being here..love to all...and may the strength of the many..help give strength to the few.
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 08/16/10 09:21 PM
hey arthurh! welcome to the team. we get through with the help of our friends here. you seem to need a good rheumatologist to take a look at your symptoms. oregon has a great number of good docs. especially in pdx. write a daily diary of pain, meds and symptoms, and take it with you when you go to the rheumy. there is a great pain chart on the "sticky" spondylitis information topic here on the general discussion forum.

please post on the main forum here by starting a new topic and tell us more about you. autoimmune dx all share the kind of fatigue you are talking about. very hard to function sometimes.

welcome, take care, and write a new topic on the main forum. prayers and peace, and hang in there. sequoia
ty..i needed that
as long as i keep moving ...it's ok...and my doc said that i need to find a rheumatologist..that i may ask my mom on. Now just waiting for blood test results, and again thanks...best wish's to all
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 08/17/10 03:18 PM
just a word of caution. our blood tests, the crp is a great example do not always show inflammation. so the c reactive protein test is good only if it really shows the inflammation you are experiencing. also, the doc likely asked for a HLA B-27 marker test. again, i am B-27 negative, and i have the disease (dx). so do not get down if you don't find the blood supports the dx. actually, it is more about how you are stiff and in pain in the morning. that is standard for all of us. we hurt until we can get moving. and primary docs really aren't specialized enough to diagnose this disease.

you have been through so much. again, please just write on the main forum and tell the rest of us how you are doing. many have IBD and some have crohns. you will get lots of comments. and a ton of sympathy. hopefully when you get to a good rheumy, you will get treatment for all of this and you will feel better, i promise. we all hurt. you can look on the forum listing docs for finding a rheumy in portland, otherwise just ask on a new topic on the main post.

good luck arthurh. please stay with us, we can relate!

I am another one who is B-27 negative. In fact all my labs have been normal for the last year. In the past, I did have a high Sed rate when fighting off my CD.

Welcome to our forum. I'm sorry you had to come here.
I just got my blood results (sort of) and the nurse said "they're all normal but your B12 is low."
I asked what were my other numbers? They're good. Ummm, okay, what were the numbers? They're fine. I specifically asked about my HLA b27 and she said it was good. I said it's not a number, it's either positive or negative. Finally, I got negative out of her. I'll be asking someone else in the office to forward me a copy of the results.
My doc apparently didn't like the B12 number because he's got a new list of labs he wants me to do that I'll go pick up tomorrow, so hopefully I'll be able to figure out what he's thinking. His new nurse is an absolute dolt (she told me that he, as a neurologist, didn't deal with spines) so it is a lot of fun trying to get info out of her. If you've seen Don Draper's new secretary on Mad Men, I'm pretty sure that's her.
I wouldn't worry about the HLA b27 test. There are a lot of us with positive MRI's showing SI damage that had a negative result on that test. For some reason, I think most of us are women.
My Rheumy always has all lab test x-ray reports CC to me. I appreciate that. I would just ask your doctor to have the lab send you an extra copy so you won't have to wait. We need to convince our doctors that we are intelligent, knowable people who don't need to be shielded from any information.
Hi! This is my first posting here, it has been very helpful for me to see all your symptoms and such-Thankyou! I was told I was Hla-B27 positive about 3 years ago but after a negative x-ray I was told not to worry about it, that I was a carrier but didnt have AS. I trusted my rheumatologists word and never even looked it up, I thought it was only bone fusion from what she told me. I have been to several drs over the years with no explanations or help. I do have Fibro, so that always seems to be the answer- "must be your fibro". I was also just diagnosed with Narcolepsy this past spring.

My symptoms started when I was around 20, I am now 34 and have significantly worsened in the last 5-7 years. I feel as though my doctor doesnt believe me about the severity of pain and that the meds dont help, she just brushes me off. Now that I have researched this site and others, I definately feel I do have AS and have scheduled an appointment with a different Rheumatologist in a big hospital/medical college an hour away who specializes in AS. Anyways...here are my symptoms:

Extreme shoulder pain almost constant in one or both at a time entire trapezeius involved
Exreme back pain between and around the shoulder blades
Moderate to severe pain lower-mid back, varies
Extreme neck pain, loss of curvature in C-Spine, Head forward posture

Trigger points all over

Chronic fatigue/Low energy/easily exhausted- walking up stairs winds me

Constant twisting, figiting, turning, bending, moving, popping TRYING to get comfortable-have become very self-conscious and embarrassed by this in public, has become almost uncontrollable
Knee pain-both: Burning /Also Knees buckling
Heel & Ankle Pain/popping, balls of feet hurt when walking too much along with knee and leg pain when rested
Nocturnal calf cramps,spontaneus cramps in arches of feet and toes-usually at the same time on opposing feet
Plantar fasciitis
Numbness/tingling/pain/stiffness in wrists, thumbs, forearms, elbows, legs and feet (possible tennis elbow?)-last 2 years
Difficulty sleeping, falling asleep, staying asleep- Restless legs and arms/ and toss & turn to find some comfort-side sleeper
Daily stiffness- especially back, shoulders, & neck: worse in mornings and afternoons into the evening
Increased pain with weather patterns: humidity, wind, cold, rain, snow, storms, etc.
All over tenderness to the touch: back, neck, shoulders, chest, traps, sides, ribs, glutes, knees, ankles, wrists
Painful to take deep breaths, have been told that I do not expand my chest to breathe properly
Bruxism and TMJ pain: clench and grind while sleeping or stressed, popping and clicking

Endometriosis and infertility

Vertical ridges in thumbnails- all nails crack and peel easily
Repetitive movements cause increased pain and flare up
All over muscle tightness and joint pain
Clumsy, bump into things (doorways, etc.), trip over my own feet
Tension headaches and occasional migraines
Occasional ringing in the ears
Phantom toothaches
Occasional Dizziness when standing up
Discomfort with heavy clothes: jackets, purses, etc…
Wrist pain when writing more than a few words
Weak grasp; painful to hold evan a popsicle lately (tested negative for carpul-tunnel this past January)
Frequent nauseous feeling from pain
Occasional spontaneous painful tailbone/buttock: sharp, pressing pain
Hip pain, feels uneven, stiff, burning, constantly adjusting positions
Painful to stand more than 5 minutes, feel uneasy and exhausted, limbs become heavy
Heavy head feeling by mid-day
Daily constant pain: very disruptive and makes everything hard to do
Fibrous lumps/marbles in legs and arms, under jaw
Occasional stabbing pain in lower back-right side
Difficulty/painful when bending or squatting or any extension

-AS Seems like a no-brainer to me!

My hope comes from my faith- God's plan is perfect and his timing is perfect as well, even when we dont understand it!

-Praying that all of us will find relief and for wisdom for our providers of care- be blessed!

sac - no joint, constant ache cannot bend
l-5 thru l-1 fused. constant ache and some shooting thru hip, down leg.
Thorasic area - mostly stiff
cervical very stiff, hear banes/deposits crunching,stiff aways
numb fingers, loss of feeling- having the dropseys. When bending, rely on knees, they are wearing out and I am less stable. is an issue(Im new here,is this where I swear?)
aorta anyurism(I feel so good I'm don't mind being embarrassed about my spelling)

I want to stop and spam about something for a second. I applied for SSD - denied. At same time,was accepted by state, DSHS. They got me some medical, then began pushing back at SSD to get me off their roles(fine by me), However, the time I had coverage I saw a Dr. for AS once.I began Emboral, and before I had one months supply in me, and before a Dr. appt. I got a letter from DSHS,disallowing my claim.(make to much $) WHAT!
Not so! SSD reconsidered, now I recieving a check but await meadical coverage. Have yet to see a heart doc- 3.1 x 3.5cm hole. I dont know if thats big or what. Depression - yes. I need and try to stay busy. That will end soon because my idea of being busy usually means gaming at some real aboveboard casinos. I just purchased an old motorhome annd am hoping to see some of this country. I feel its now or never! Don't know how or if treatment will be possible. I have suffered with AS and didnt know it was AS or what! A Dr. suggested AS in 76 or77. (Then 20-21years old)I can't knock door, my hands hurt always. Vision -getting terrible (not sure of source). Bless those who have dealt with me, hardly any patience. Have tended to drive those who cared for me away. Hi, I"m Loren. Any tips or comments, gladly heard. Thanks
current symptoms:
right lower rib pain (like stabbing,or rug burn, sometimes I wonder if it's underneath - gall bladder etc?) x-rays look "fine"
headaches, especially on right side back of head
not much neck pain - already fused
day/night sweats (tho that may be the start of menopause - something else to deal with)
upper back pain - especially after sneezing/coughing
lower back pain
butt pain (not lately)
pain down legs a long time ago, again not lately
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 09/17/10 04:21 PM
to all the new folks posting symptoms, please do that here and then come on over to the main discussion forum and start a new topic and tell us about yourself. this is the good place to start, but many of you are just staying here. come on over.

we are a good group who have answers because we have been there. we don't always read the symptoms forum. so join us!

welcome, and prayers and peace, sequoia
@LilMissSleepy you sound like AS to me but I'm no doctor.

I have a lot of similar symptoms as you and got a diagnosis of undifferentiated spondylitis (sp),a little bit of each of the spondys so I just say AS to keep it simple. If you aren't on a biologic I would think you are a great canidate for one. Before I went on Enbrel it hurt to be hugged, I'm not perfect now but WAY better than I was not on anything.

I hope your appointment goes well and you get some answers. xo
The worst pain is in my tailbone area (I suppose its my SI joint's, right side half way fused, left side beginning to fuse).
Then would be my hips and groin and my pelvic bones (sit bones), then my legs, knees,feet, and that stupid pain in my heels (I lost the reflex in my right ankle).
I have burning in my right hip and down the back of my right leg.
I have electrical nerve shocks in my right foot (also sensations like something is crawling on my foot).
I always have knots of muscle in my upper back, shoulder, between my shoulder blades and neck. My massage therapist used to call me the "Ow girl" because he had to work all of those out. He also told me my neck feels like guitar strings.
I have rib pain that feels like bruises in my lower ribs more on the side of my body.
The pain in my upper back has become very secondary due to the severe pain down below.
I also sometimes have pain in my hands, wrists and elbows, this is just soreness and more annoying than anything else.
The only thing that bothers me about my arms is that they, and my hands, fall asleep frequently.

Stiffness, hip pain since age 16
knee pain and stiffness intermittently since age 18
first episode of lower back muscle spasm in early 20's
lower back pain episodes regularly since then
neck problems (stiffness and pain) regularly since at least mid 20's
major episode of arm/carpal tunnel nerve pain aged 30 - put down to repetitive strain injury from typing, but pain management doc said it was coming from my spine
first episode of sharp severe foot pain about the same age.
non-specific gut problems and malabsorption from at least early 20's (finally diagnosed with coeliac disease age 40, but GF diet didn't completely stop symptoms)
lived with all these aches and pains until age 45 when things suddenly got a lot worse with increasing episodes of back muscle spasm.
bladder retention (neurogenic bladder - no cause identified) aged 50
malar rash triggered investigations several times for lupus, but no further evidence for this.
neuro assessment (aged 50) ruled out MS, and decided that it was all in my head - diagnosis of chronic somatization disorder

Family history: mother with RA, Lupus. Father almost certainly had AS, and brother has fairly similar problems - neither diagnosed. Only male cousin on fathers side has AS. Lots of other autoimmune disorders in at least 3 of my 4 grandparent lines.

nerve pains down legs, achilles tendon pain, lower leg cramps
frozen shoulder, nerve pains down arms
use two crutches to walk
neck problems increasing
SI joints screaming
pains around the edges of all pelvic bones
increasing knee pains
very painful area mid thoracic spine
tender points over most of the fibromyalgia places
neurogenic bladder, urine retention (requires intermittent catheterisation)
virtually no rib cage expansion
can still bend over and touch knees - just
pain requiring codeine most days
Take max dose of NSAIDs (slow release diclofenac)
Take high dose of muscle relaxants to slow down spasm (baclofen)
on gluten free, low starch diet, but still have an irritable gut
HLA B27 negative (though it is possible specimen was too old, or not kept at right temperature when test done).
ESR has never been above about 20

and all this with no diagnosis!

Age 23 (beginning of symptoms)
  • A couple bouts of Iritis.
  • Awoken nightly with back / rib pain (diagnosed with A.S. 6 months after start).

Age 24
  • Back / rib pain less often
  • Sharp right-side hip pain that comes and goes
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 10/06/10 03:10 PM
welcome cyk, come on over to the general discussion forum. we have new folks who are young, rachel is the first one to come to mind. go over and start a new topic telling us your journey. use the pain chart that is listed on the forum.

welcome. many of us had symptoms in our teens and 20's good you got a dx early. are you on meds? hope so, prayers and peace to you, see you on the general forum...

Original symptoms:
-Low back pain radiating down legs
-weakness in legs (I fell a lot, especially down the stairs)
-had to have my mom help me get up in the morning...it hurt to think about moving.
Extreme fatigue

That was almost 20 years ago....now:

Thoracic/rib cage pain
neck pain
shoulder pain
wrist pain (sometimes fingers too)
jaw pain (TMJ)
heel pain
low back pain
sometimes hip pain
chronic lack of sleep - especially when the weather changes
Sometimes knee pain
Headaches almost constantly these days
Did I mention Fatigue? smile

Oh yeah, I still hurt bad enough most days to lay there and think about whether getting up is actually worth it.

Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 10/13/10 03:23 PM
hey twyn, welcome to the forum, please strike up a conversation on the main discussion forum and tell us about your journey, prayers and peace, sequoia
Hi Here are my symptoms: numbness, pressure burning pain in scalp, pain in extremities, neck, spine. Pain bottom of heel, knee pain, Shoulder pain Left side, Rib pain, chest pain, upper right quadrant abdominal pain, Ulcerative colitis, left foot pain, left arm pain, trigeminal neuralgia, causalgia. left hand pain, angina, shortness of breath. Kidney stones, sphincter of Oddi dysfuction. headaches.
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 10/14/10 04:37 PM
hi elie, do you have a dx of AS yet? you certainly have many of the symptoms. if so, go on the general discussion forum and introduce yourself and tell us about your journey. long term symptoms, short time, etc. it is good to post your symptoms here and then to go on and join in on the main forum or the other specialty forums. welcome, we are a varied and good group here.

start your own topic on the general discussion forum and tell us what treatment you are on!

prayers and peace, sequoia
How do you know what is a symptomand what isn't?
Neck pain always, since my teens(I'm 50), though I have less total spazz-outs requiring immobilization w/cervical collar
-nerve impingement on left side, neck radiating into/behind left shoulder blade;
-headaches, usually related to Enbrel injections(I think?) Soon to switch to Remicade. Occasionally reach migraine level. After48hrs, I'll go in and get a shot of an opioid, which seems to "reset" my system and stop the headache
-ribcage is rotated sideways and also misaligned North-South. One lung can't fully inflate. Feels like a car has been parked on it when I get up in am. Hard to get a full breath. Lotsa pain where lower thoracic meets upper lumbar and over ribs.
- bursitis, chronic, wherever there's bursa. Also, fingers, wrists, elbows, shoulders, ankles, knees, hips ache/burn.
- pelvic pain, relived significantly by removal of right ovary and tube which cysts ruptured on every month. They also discovered scarring/lesions which were pulling my back and hips out of alignment. No imaging technique ever found this, and I was seen as just a whiner when I complained of constant pain, pressure in pelvis, urinary urgency(ovary was attached to lining of uterus and abdominal wall by lesions- finger-sized)
- chronic intestinal pain, particularly after eating anything, though everything seems to move along regularly.
-lower back pain, SI pain, hip pain, sometimes radiating down legs until stepping down hurts, or leg muscles get unreliable. Greatly helped by continuous epidurals every 1-2 yrs.
-morning stiffness much worse. Also, I PAY for any exercise, in spades, no matter what.Sitting in my office chair or car for long is torture.
- sleep ridiculously disrupted. Chronically sleep deprived. Urge to nap due to CONSTANT FATIGUE, but this is discouraged, so I don't.
-dry eyes, mouth,skin. Meds make it worse.
Enuf yet? I think I'm currently being seen as Undiff Spondyloarthropathy, as all serology negative for definitive AS diagnosis? Maternal Grandmother, Mom AND my Dad had it. My Dad's the 'poster boy' for Bamboo spine!
Is scleritis and eye hemorrages a sympthom?
Hi Adiasa! I can tell you that lots of folks with spondy diseases have scleritis (episcleritis, iritis, uveitis), but I'm not sure about eye hemorages. But, there are folks who have spondy who don't have those symptoms either. There are lots of people with great info here...you'll probably get more response if you go post a new thread here with your question. I hope this helps!
Hi, First time here, great forum!
I was diagnosed 6 months ago with AS,and IBS. I am a 46 and had these problems since I was about 20. I was pretty active and worked out alot and just thought these symptoms were a sign of age, thats all. I was in alot of joint pain for many years and other issues and until I had enough I finally got in to see a Rehmutologist.
The symptoms I am having or had are, Iritis, Pain in the Hips, low back, ankles, Knees, fingers and neck. Constant fatique, skin rashes, dry scaley patches, itchey skin, Gas, bloating, restless leg syndrome and trouble sleeping throughout the nite.

Have been on Dolobid, Tolmetin and now on Humira. Just had my first injection last week and the only noticable side effect was headaches that last several hours and sneezing and feeling like I have a cold. Rhuemy said it will take not until several doses until I get the most benefit of Humira. I hope he's right, So far no relief, I guess its a wait and see!

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 11/11/10 03:21 PM
welcome dad! i usually try to get up to the symptoms forum to talk to new folks. here you are, got by me, well my life is fairly busy, LOL.

please write and start a new topic on the main discussion forum and folks will respond there. do you have psoriatic arthritis? that is a dx (diagnosis) many here have. i think some even have the symptoms with their AS. do you have fusing? pain? is the humira working? sorry it has been so long for someone to respond. new folks don't realize they should put a post on the main forum.

welcome, and join in, prayers and peace, sequoia
I can only echo what the others have posted...
Heel pain, constantly burning sensation
knees , either or both ache, no swelling
hips, burn after a short walk
LOW BACK, first symptom, 25+ years ago
left shoulder(left handed)
Carpel tunnel release surgery 1998 both hands
hands-back of last 3 fingers, and the joint just above the thumb, constantly ache(both hands)
neck-natural fusion of at least 2 vertabrae,and surgical fusion(discectomy 2003)
Psciatica both legs
Restless leg syndrome
Uveitis left eye, very photo sensitive
eye psin triggers blinding migraine like headaches.
Ribcage pain, including at times under the armpits
Lower back and hip pain
Pelvic pain
Shoulder pain, comes and goes
neck pain, seems daily
flu like feeling/nausea off and on for days
Sternum pain
Lack of sleep due to pain
Depression and Anxiety
Butt pain, low back pain, upper back pain, heel pain, rib pain, fatigue... Worst is the butt pain... By far. The back pain can be controlled with narcotic pain killers, but nothing touches the pain in my hips/butt...
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symp - 11/19/10 12:22 AM
hi joferd, haven't heard from you in a long while. let us in on how your life has been lately. start a new topic on the main discussion forum.

prayers and peace, sequoia
neck pain
neck muscle pain
upper back pain
huge problem with enthesitis
fatigue of course I think it comes with the territory
low back pain seems worse in cold weather
much trouble with my muscles with spasms continually
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 11/20/10 03:03 PM
hey joni, welcome. you signed in back in april. why don't you start a topic on the main forum and tell us about yourself. we always like to meet the new folks because most of us can sadly relate only too well, LOL.

anyway, today's the day to tell us...

prayers and peace, sequoia
Neck pain - PT for 6 months has slowly improved not out of pain though

hip pain - comes and goes

knee pain - comes and goes

ankle pain - since Jan 2010. PT for 4 months no change, have surgery scheduled with ortho in Dec to tighten a supposed loose ligament. MRI

extremely straight neck - X-ray and MRI MRI showed signs of mild arthritis in a couple of the verterbrae. No fusing

Depression - DX for 1 year (before this horrible year of pain) on low dose of Celexa. I'm feeling the need for an increase.

Lower Back pain - not excrutiating just constant upon bending, laying, sitting, living smile

shoulder pain in joint - comes and goes PT last nov for extreme pain couldn't lift arm over head. It worked.

Left top of shoulder muscle pain - tends to be connected to the neck pain, when PT does ultrasound in that area tends to calm down shoulder, neck and upper back

Upper Back Pain and Fatigue - I can only make it to about 1:00 every day and then I have to lay down to rest it. It feels as if I will colapse. Making dinner is almost impossible for me at the end of the day even laying down in 10 min incerements gives me about 5 min standing and looking down to fix dinner for my family. Typical mom jobs are really hard. Playing the piano which I love (I'm a piano teacher) has become near impossible.

Collar bone area - occasionally this feels really tight and painful like today

One Rib pain - A fall 3 years ago is what I attribute this to, but shouldn't it have healed by now. It makes breathing deep hard sometimes and is even painful to the touch.

Morning Stiffness - Much better with warm shower. I actually feel the best after my morning shower until I hit about that 1:00 mark in the day.

Stiffness from being in any sitting or laying position too long - I constantly shift to alleviate lower back, neck and middle back pain.

Fatigue - Up until this year I have not felt the need for a daily nap. I am so tired now. Even after my daily nap I feel that I could sleep more.

Forgetfulness - I have let more people down then ever. I definitely have began writing more down whereas I use to have the best memory. Something has changed.

Overall this year I have not had a day without some type of pain. Up until then occasional problems but nothing I was worried about. Do I have AS? Who knows, but I know something is going on with my body and I appreciate my physiatrist taking the time with me to try and figure it out. She's referred me to a rheumatologist. The rheumatologist appointment still has not even been made, because when I called, they said I am on the list of patients to call and make appointments for. That was a week ago.

Forgot a few things:

new red patch on my face itchy and tiny amount of pain upon touch. - Dermatologist dismissed it and said it would away with the new acne treatment I'm trying so far still there after over a week

wrist pain - occasionally
Originally Posted By: motherof5
Forgot a few things:

new red patch on my face itchy .....

this could be psoriasis
That's what I was thinking. Wouldn't the dermatologist recognize that right away? (Referring to the red patch)
well I dunno........
we have women on the boards who have been told by docs that women don't get AS.....
Emily-- I have the same thing where I have to lie down by early afternoon. I don't need to sleep necessarily but must recline fully for a good hour or so before I can do much else. thank goodness my job is flexible and I am usually home by 3pm on the days I travel and somedays I work from home. I have the same fatigue of holding my upper body upright.....it's truly a pain to be a mom and unable to do the things you need to do. I feel your pain with that.
My symptoms are as follows:

*swelling and pain in hands, knuckles, fingers
*swelling and pain in feet, toes
*hip pain. Sometimes one and sometimes both
*neck pain and stiffness
*lower back pain and stiffness
*intermittent numbness and tingling in arms and hands
*Chronic fatigue
*cluster headaches usually affected by weather
*flu like symptoms in the evenings
*morning stiffness and poor balance

-Joint pain typically bilaterally in:
hands (almost all joints), wrists, elbows, shoulders, neck, mid-back, low-back (especially SI joints), chest, hips, knees, ankles, feet (but not heels). Worst pain is in hands/wrists and SI joints.
-Carpal tunnel & tarsal tunnel syndrome symptoms
-Muscle spasms in neck and back
-Abdominal myofascial trigger point
-IBS with diarrhea & constipation alternating. Typically 10+ bowel movements/day. Also intense intestinal spasming.
-Acid reflux galore
-Fatigue out the wazoo
-Decreased sex drive
-Morning stiffness & pain
-Very minor psoriasis on elbows
-Eczema on hands
-Minor spinal scoliosis
-Occasional numbness from waist to knees
-Dry mouth
-Dry eyes
-Occasional shooting back pain
-Constant feeling of dehydration
-Did I mention fatigue?
-Nuclear bone scan showed inflammation of shoulders, clavicles, hands, and wrists
-Clinically insignificant degenerative cyst of sacroiliac joint
Hi All,

Have been doing research on my own because I think as most of you know. This diagnosis is not easy to come by. I havent been officially diagnosed but am currently trying(going to the
doctor/chiropractor regulary just had an MRI today)to figure out whats wrong with me.. but reading the many posts I may be one of the newer additions to the AS troops.

Thinking back it started for me in my eary 30s (Im 45 now)
and it was in my hips and SI always, felt low back pain I could never seem to put a finger on the exact location of the pain, just when you think you found a spot to say thats it... you 2nd guessed yourself.

The pain was/is severe always hard to sleep at night and very hard to get going in the morning. One wrong move could bring you to your knees. When it started it would last for 2weeks 3 weeks 1 to 2 months at a time.. then subside... so for years I always felt its just something wrong with my back that I will get over.... (every one gets back pain)

I started to noticed each episode may or would be a different location. One time my right hip, next my left hip. next my lower back. etc. each time I was able to buck up and make it thru..

In 2003 it was in my right hip. I got to the point where I couldnt walk and ended up going to the ER. the doctor said I strained something .. gave me some anti-inflammatory drug and I was cured... months later of course it came back. again and again over the years.. I alway made it thru it.

In 2007 I was in a situation where I wasnt getting thru and took my stubborn soul to the doc.. this time it was my left hip/back.
he put me on predisone and again I was cured. also subscribed me meloxicam(anti inflam.).. of course a few month later it acted up again.. but I pushed thru it.. pain pain cant sleep at nite,took all I could muster just to get dressed. better after I move around etc.. but constant pain.

2010 I ended up missing 2 days of work, couldnt walk AGAIN..this time its in the middle of my back. went to the ER again gave me predisone and cured me again..followed up this time with a doctor, of course when I followed up with him I was feeling great dont think he really thought I had nothing more than typical back problems.Told him the last time I had this in 07 the doctor gave me prednisone and meloxicam. he frowned on the predinsone but gave me a prescription for meloxicam..

4 weeks later I made another appointment with doctor, I was functioning but not getting better.. the muscle spasms at night were unbearable.... explained everything to the doctor.. he prescribed muscle relaxers nothing else.. walked out of there feel like going to a doctor was a joke..

Decided to try a chiropracter.. after my first visit really felt like I was on the right track.. he couldnt do much for me cuz I couldnt lay on my back without severe spasms when i moved in any direction. After 3 visits he got me to the hospital for the MRI. thats where Im at right now... not knowing but thinking I do know whats going on.


When I think back I was in my 20s when I noticed muscle weakness.. working under my car with my head elavated and starting to shake from it maybe thats nothing..
*** migrating back pain... left hip to right hip to lower back. always worse at nite and when I got up in the morning.
episodes that would last 2weeks to 2months.. waking up one day and feeling fine... for 2 weeks to 2 months.
**Occasional blurry eye when waking, one eye was blurry for 20min to an hour.. I dont get this now but feel it may be a symptom from reading the posts.
**Whens it bad my back hurts when I breath or cough.
**Pain does migrate and its severe when moving certain ways.
**worse at nite laying down, and getting up in the AM or afterly laying for any period of time, may or may not be brutal.
**many sleepless night due to sharp pains when I move.
**sitting is managable pain.. standing after sitting can be hard at times.
** some people have posted about being in fog I definitely feel that for the last 5 years.
** have had carpal tunnel like numbness in my hand
** have had aching elbow and shoulder Ive likend this to carpal tunnel. but maybe a symptom of AS.
** Anxiety attacks may or may not be related.
** IBS for sure. switch from diarreha to constipation.
** fatigue always tired..
Not sure what is going on but I sure hope to find out... I will post once its figured out.. I'd like to thank you all for your posts and thanks for reading mine.. I wish you all the best!!!

I am the mom of a nearly 17 yr old HS student who has been experiencing the following:

Vomiting (cyclic, since age 2)
Migraines (cyclic, daily, ocular, all DX'd)
Fatigue (years)
Neck,Back and Ear Pain/ TMJ
Gluten sensitivity
Brain Fog (topomax for 3 days did not help!)(try Honors PreCalculus with that!)
Very dry skin, scalp, lips, eyes, etc since early age
Weakness all over
Chest Pain/Heart Palpitations
Inability to get up in the AM
Aching muscles, joints and trigger points
Relief from moist heat, hydrotherapy and sleep/rest

Took to a children's hospital rheumatologist who diagnosed maternal enmeshment (she is not a psychologist) and summarized I was making her feel sick by giving her prescribed supplements.

Glad we went for a second opinion. New rheum dropped the AS as a very likely DX today. Upon reading this thread, I can only assume it will pan out.

I would rather her not get this diagnosis, as it is more serious than she or I ever though her conditions were. . . even if it means the school would continue to see me as a hypochondriac and the source of keeping her out of school (!!!!)

I feel for everyone of you suffering these symptoms and I pray for your relief. I hope each of you has a Florence Nightingale in your lives to help you take care of yourselves, as I know what my daughter needs me to do for her.

Thank you each for being honest because this thread has really helped us know what may lie ahead.

I have battled tendinitis for years, including knee pain when I was going through puberty. I'm 35 now and have 4 kids. I kept hearing "You have pain because you have kids." "You aren't sleeping enough." "You overuse your hands." Went to physical therapy, orthopedic doctor, my general doctor over and over. Went to rheumetologist in August and found out I have undifferentiated spondylarthropathy. He's calling it a "working diagnosis." I was HLA 27 negative but a low positive for rheumatoid factor. Either way, I feel like I'm on my way to better health.

Here are my symptoms:
Low back pain (SI joint damage shows up on xray and MRI in addition to bulging disk, degenerative disk disease, stenosis, etc. in the lumbar region)
Bone spurs where Achilles tendons attach to heels. Tight Achilles tendons.
Cycles of enthesitis in the forearms, elbows.
Pain in my hands. Weakness in my hands. Dropping things.
Neck pain
High blood pressure

Currently taking
metformin for PCOS,
zestoretic for high blood pressure.
Started humira in September but I don't feel like it's a miracle drug.
Hi to all; I'm a newbie.. I am not diagnosed with AS, I am in the process still of figuring what is happening. Symptoms really on for 10yrs. But as of the last 2 really took its toll on my whole body. Please any info greatly appreciated.

Chronic pain followed by weakness:
feet(planter fascitis)doesn't go away even after therapy
Neck(really bad)
major fatique******
Pelvic bones & groin bones(really bad) always contributed to dense abd adhesions &prolapsed uterus) surgery March 18th
Cramping really bad in the pelvic bone area right where the joint meets leg)
cramping (spasms)in feet
weird nerve sensations down pelvis down legs
pin pricks feeling in legs and fingers
weakness in arms & legs
brain fog
balance off
leakage of urine
constant abdominal pain
shaky right hand & sometime left leg
blurred vision & worsening of eyesight
moderate sleep apnea (hypopneas)
I guess too many to list.....
positive ASCA IgA (no chrohn;s) undetermined colitis,IBD
high sed rate,C-reactive protein
high bun/creatine
low vitamin D & B-12
rising levels in HCT & PLT

so far diag w/Fibro and Neuropathy
had Neg RA,Lupus,Lyme,diabetes,thyroid

Was only until late that i came across the symptoms list and i match them to a t and the ASCA test i see is common to be positive.

So confusing, just know whatever it is it is not going away and meds are not helping! On Neurontin 300mg 3xday,Xanax 0.25 6xday,for pain switching to Lyrica instead of Neurontin on Vitamin D & B-12 as well as Detrol and Topril Sorry so long Thanks!!!! :))
Hello all, I am new to this site. I am a 34 year old female who was diagnosed with AS when i was 30. The pain started when i was around 18 and it was constant back pain, neck stiffness and jaw locking. Now I am mother of 2 and feel like i am 80.I am currently taking voltarin 75 mil 2 times a day. I also suffer from chronic iritis and had it 3 times this last year and 2 times a year prior to that for the last 5 years.I get injections and prednisone drops in my eye for that. At times i cant even walk up stairs without crumbling in pain, getting up out of a chair or couch is sometimes unbearable. Getting into a car is a tough task,and sitting in a car for long periods of time worsens the pain. When I am having pms the symptoms are way elevated. My symptoms are as follows:

Severe zapping pain at times that radiate from my spin to the back of my knee.
Pain in ribs when I take a deep breath
constant fatigue
migrating rib pain
sternum pain
neck pain
back and neck spasms
wrist and elbow pain
hip pain
chest pain
toe pain
chronic iritis
total lack of energy
constant back ache
stomach upset from the medication
Hi mom, welcome! So sorry to hear of your years of struggle. Have you talked to your rheumatologist about trying one of the anti-TNF meds? It definitely sounds like your current treatment is not nearly effective enough!

Diclofenac (voltaren) was hard on my tummy too - I stopped taking it and did 2 weeks of a PPI (Prilosec/Prevacid type med) and then started a new NSAID, meloxicam (Mobic) which has been much gentler for me! It works just as well for me - although of course everyone's response to meds is different.

The zapping radiating pain needs to be evaluated - that is a classic description of neurogenic (nerve) pain and could indicate something is pressing on a nerve in your spine. That needs to be evaluated and may be amenable to effective treatment!

Start a new thread introducing yourself - you'll find lots of support, wisdom, and advice here smile
Oh thanks for the welcome, and info. Sorry to hear about your ailments as well. My doctor wants me to try remicade,her thinking is that it will make my eye prob go away. My eye doctor says that is not a good idea at my age. I don't know what else to do cause my quality of life sucks! Has the remicade helped you? Is that a blood infusion? I was told it was an infusion at the lab? I am worried about the lack of immunity issue with that medication, do you have any issues?

excessive thirst
boney cysts
cold hands and feet
carpal tunnel both hands
shoulder decompression both shoulders
torn rotator cuff
extreme lower back pain
chronic right hip pain with spurs
moderate left hip pain
knee pain right and left (bone spurs on right)
ankle pain
Plantar fasciitis right foot (wear brace done PT etc)
heart palpitations
acid reflux
high blood pressure
wrist pain
knuckle pain
Fatigue, fatigue (you get it)
dry mouth
dry eyes
irregular monthly cycles
ovarian cysts
uterine tumor (benign)
life threatening infections
chronic bladder infections

I think that is it. They may or may not all be related. This is where my journey has led me.
Originally Posted By: crazedmom
Oh thanks for the welcome, and info. Sorry to hear about your ailments as well. My doctor wants me to try remicade,her thinking is that it will make my eye prob go away. My eye doctor says that is not a good idea at my age. I don't know what else to do cause my quality of life sucks! Has the remicade helped you? Is that a blood infusion? I was told it was an infusion at the lab? I am worried about the lack of immunity issue with that medication, do you have any issues?

I wasn't aware there were age restrictions/limits on Remicade... that is odd. Various members here with chronic iritis have had success with a number of meds - LDN and methotrexate among them. Use the "search" function and you will find lots of threads on iritis.

My daughter gets the Remicade, not me. She has Crohn's Disease. It has helped her immensely. Yes, it is an IV infusion but is done at a hospital or other clinical setting, not a lab. It takes a few hours to complete but after the loading doses you only go once every 8 weeks. She has not had any issues with infections etc. nor any other side effects that we can see.

Do post an introductory thread so others can meet you!
Hello Ancient, I am sorry that you have suffered so much, reading your symptoms made me think that I also have irregular periods about every 3 weeks currently, also ovarian cysts,a heart murmer and irregular beat. I didn't think it was from AS but maybe I was wrong. I hate feeling like I am 80! Good luck to you!
Originally Posted By: crazedmom
.....I also have irregular periods about every 3 weeks currently, also ovarian cysts........

could you have polycystic ovary syndrome (PCOS)? several women on this forum have it
Oh i will check into that and ask my obgyn, thanks
Does anyone know if there is a coorelation between AS and TMJ?

I had a severe case of TMJ for 5 years when I was in Middle school and high school, I had to go on a liquid diet for 2 years, PT in Manhattan twice a week, and constantly wore a mouth-piece retainer and was in continuous pain; it has subsided since then, with random flair- ups. Is it likely for my TMJ to reoccur?
Holy cow 2 years?! Sorry to hear about that. I had tmj when I was 19 or 20. But it lasted only about a month with a couple flare ups the year after. No major issues since with my jaw. To answer your question I am not sure if there is any connection. Good luck!
Yes I too suffered from TMJ for several years! I have not had a problem since I started all the treatment for "my arthritis" a couple of years ago. I can't tell you if it is related but I can say the medications have at least helped me with my TMJ. I have not had one issue in 4 years thankfully. I wore a mouth splint and my jaw was "stuck" for a period of time.

I hope you have the same success I did!

I have had TMJ most of my life. I had to go to the dentist about 10 years back for a "Locked jaw" I had to go almost 3 weeks before it unlocked. The dentist thought the fact that my wisdom teeth were packed into my mouth like sardines (I have a small mouth and not enough room for all of my teeth) might have caused it, and advised me to have then surgially removed ASAP. I did have them removed, but continued to have jaw locking problems. Even now, if I am not careful when I go to eat somthing, my jaw can slip and lock. I just thought it was just another issue, but now I kind of wonder if they could be related.

yea my jaw would randomly lock up, and still does today everynow and then. The TMJ caused horrible migraines almost everyday, as well as really bad pain in the neck. I had a mouth spint that ended up pushing my teeth into my gums causing a gap inbetween my upper and lower teeth. So I'm really hoping that the TMJ and AS are not related because I don't know if I could go through dealing with the pain of both the AS and the TMJ at the same time.
eye irritation/swelling/itching/vision loss
pain in tailbone when sitting
feet swelling from standing longer then 5 mins
muscle pain in full back,shoulders,neck
tendons/muscles tear easily and take long to heal (usually heal wrong with scar tissue)
achilies tendon pain and stiffness in left foot
joint pain and swelling in...every joint in my body
fast heart rate of 120
trouble breathing all the time, and catching my breath when walking.
restless leg syndrome,mostly when trying to sleep.
pelvic pain
muscle weakness
poor circulation in fingers
dyr skin/psoriasis
bone pain
brain fog/forgetfulness (some times i forget simple words when im trying to talk)
mood swings

thats all i can think of right now. every day is a horrible day for me since im alergic to most pain medications.
also,alergic to water (get hives after baths/showers) dont know if thats related or not.

Amy I am so sorry your suffering. Are you on medication? NSAIDs? What does your dr tell you to do because suffering isn't working out very well. Good luck!
Kris...your symptom list sounds remarkably like mine. I have not gotten a spondylitis diagnosis but have been having significant joint pain--especially butt pain during sitting--for 5 years. I take tramadol. What meds to you take that help? I am thinking of asking my rheumatologist for a medication change. Thx.
*Had total spinal fusion. Surgically seperated at MGH 6yrs ago. Prosthesis attached from 4th vertabrae from top all the way to the bottom.
*Have been receiving Remicaid every 8 weeks since waiting period after surgery.
*Still have chronic neck pain and loss of movement in my kneck.
*Pain in knees, sometimes severe, mostly week before medication.
*Pain and stiffness in my finger joints and wrists also gets worse before medication.
*Constant lower back pain but flares severly if any strain placed on my back.
*I have Chrones but it is held mostly in check by the medication.
*Also experience patchy dry skin with bumps that itch over much of my body.
*Severe Calcium Kidney Stones in both kidneys. Had a 1/3 of a specimen cup removed in 2 surgeries on my right kidney a few months ago. Still having some pain there. Urological Dr wanted to remove a lrg qty in my left kidney, but I'm not ready to go through it all again so soon.

Question; Does anyone else have calcium kidney stone issues? Are they part of, or caused by the Spondylitis?
Does anyone know if there is a relation to AS and tightness in the neck? My pain is currently mostly in the lower and middle of my back, but several times a day my neck becomes tight and I have to turn it side to side, and roll it around; and it often makes very loud cracking noises. Should I stop intentianally cracking my neck, or is this just a sign that the AS is affecting more joints in my body?
Tightness sounds like muscles. It is common to have muscle spasm/tightness/pain around areas where inflammation is going on - the inflammation may be putting the spine out of whack and the muscles are trying to keep everything in place.

Crackling is usually a symptom of osteoarthritis, not AS. In OA it is caused by the degeneration of the discs between the vertebrae, causing the bones to rub together when there should be a cushion between. Of course this can also occur in other areas of the body where OA is common, most notably the knees.

At your age I would imagine the bone-on-bone sound you are hearing and feeling has something to do with your AS. Have you had any x-rays or MRIs of your neck recently?
I have alot of pain in the SI joints. It hurts to sit for a long period of time. The pain goes right up my back about half way the muscles spasm, then just recently I have been getting pain between my shoulder blades. I am currently taking Embrel, I have been on it for a month and so far no relief. I was on Humira for 4 months and it did not help at all.I am extremely tired all the time, it does not matter how long or good of a sleep I get.I am in college now and have a very hard time making it through my day sitting in classes and by the time I get home I could sleep from 5pm right threw to next morning if I let myself. I have Doctors looking at all the evidence and some think I have AS because of some inflammation in the SI joints and I have been tested Positive for HLA B27. Other doctors are saying I do not have as because there is nothing else in mri`s, cat scans, or x rays. I have not talked to anyone else with AS before, so I was just hoping for some suggestions or thoughts of others. Thank you

I'm new here and I'm very happy to have found this site. I was diagnosed on 2009 but have been suffering from pain for 30 years.

My symptoms:

extreme tiredness and stiffness in the morning
bursitis of the left shoulder and hip
calcific tendonitis of both shoulders
rib pain, esp under the breasts
knee pain
heel and ankle pain
recurring UTI
chronic headache
muscle spasms

I can't do many things I used to do like sit or kneel on the floor for more than 10 minutes, or bend over as in gardening, or any activity which requires bending of the waist. I can't sleep on my left side or on my stomach, and have to place a pillow in between my knees. If my knees touch during the night the pain is excruciating. No one can touch my back, esp. the shoulder blades or rib area because I feel like an open wound. Can't put a bag on my shoulder, and lately, wearing a bra is unbearable.
Hi! I am a 57 year old woman who has experienced pain since my early 20's. Back in the mid 70's I started experiencing terrible lower back pain, upon getting out of bed one day I fell to the floor and could barely stand without help.I went to the hospital, was told I had pulled my back muscles,was given muscle relaxers and sent on my way.The pain never went away, it continued for approx. 20 years before I finally went to a Rheumatologist and was prescribed NSAID'S. Now I was diagnosed with degenerative disc desease. At first it was degenerative disc desease and then it was degenerative joint deasease when I started experiencing pain in my hip. I never had x-rays or an MRI. As time went on I doubted my ability to cope with pain the way most people could, I doubted myself and didn't want to go to any more doctors. Almost 30 years later, no longer able to stand the pain in my lower back, ribs, shoulders, neck, hips, feet, hands.... I saw a Rheumatologist in this new state I am living. She changed my life! She listened without looking at her watch and after a few visits and blood work diagnosed me with AS. I test negative for the genetic marker, but still present with the desease. I am not happy I have the desease, but am grateful for the diagnosis. Now I can move on!!! I am in quite a bit of pain and about to have an MRI in March 2011 to take a look at the SI joint. Here's my question....does anyone have pain deep in the rectal and vaginal area of their body? This pain is so excruciating I have to stand to relieve it. I was up all night with this pain and am now wondering if this is common to AS.
I'd like to add I am standing straight and not looking at the floor....I am confident things are looking up from here. The biggest step is to get diagnosed, then at least we know what we are dealing with.
Susie, welcome! Glad you finally found a doc who would listen, so sorry it took so long frown

As for the rectal/vaginal pain, that sounds odd to me. If I were in your shoes I'd call my gynecologist to start. How long has that been going on?
Hi Jen, thanks for your reply. The internal pain started about 10 months ago. I did see a Uro-gynocologist, she scheduled me for tests and also wanted me to see a pelvic floor physical therapist. At the time of the tests my son was in a bad car accident, followed by me having a 2nd CMC arthroplasty. I just wasn't up for all the tests they had scheduled. My Rheumatologist did recommend that I reschedule those tests. I was just curious if anyone else with AS experienced the same thing.
New to this forum! Trying to figure my way around. Diagnosed with "probable AS" (not enough back or sacral iliac inflamation to difinitively diagnose says my rheumatologist) about 7 months ago after recurrent bouts of iritis. Here are my symptoms:

-neck pain
-foot pain
-hand and wrist pain
-iritis every few months after cleared up
-fatigue, as others have said I thought I was just aging (am 38)
-feeling as if I am stooped or slouching with bad posture all of the time

Meds: sulfasalazine and naproxen, along with 2 drops of pred forte a week

So excited to find this wealth of info!

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 02/09/11 04:39 PM
welcome kerry, jump in on the main forum, general discussion forum...introduce yourself.

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 02/09/11 04:41 PM
welcome susie122, luna, andrew, viking and steveinville, and all others who posted symptoms and have not jumped in on the main discussion forum. we don't always get over here to the symptom forum, so let us know who you are and get in on a topic...

prayers and peace, sequoia
Hi Everyone,

I hope you are well. My name is Ken, aged 27 from the UK. I think I may have had AK roughly 5 years ago. All those years, I have been going to this crappy doctors and moaning to him about the lower back pain I get every morning. He always suggested that I do exercise and change the mattress! Not once has he mentioned AK!! But anyway, recently changed doctors and this doctor sent me to a hospital to see a specialist! I had blood test (HLA-B27), X-ray and MRI scan to confirm I have AK and inflammation on the Lumbar bones!

My symptoms are not too bad. Just morning back pains, tense knee, neck and back - but everything else is OK. I had inflammation on the right eye (lasted for a week, but thank god for the eye drops called Dexamethasone).

Anyway, my doctor has prescribed me Arcoxia (etoricoxib) 60mg to take every night. I have been taking this for 2 months and it’s the best thing ever! No more morning pains!

Currently i am doing 2 hour aerobics per week, but just too lazy to do anymore! I am constantly experiencing exhausting legs, especially the knees. My back and neck is VERY STIFF and lots of knots. I am hoping chiropractic to help ease my back and neck! Has anyone tried chiropractic? If so, does it help the AK?
Hi Ken, welcome - sorry you suffered the diagnosis delay that is so common with this disease. Glad you finally found a doc who was up to the challenge and that you are doing well taking an NSAID - that is a pretty typical first-line treatment for spondylitis.

Experts on spondylitis strongly recommend AGAINST chiropractice. The adjustments that are done could cause serious damage to our already damaged spines.... I would avoid if I were you. A lot of folks get temporary relief from muscle spasm pain from getting massages, is that an option for you?

A lot of us take a muscle relaxant to help combat the muscle spasms (knots.) The muscle problems are a secondary problem due to the muscles working overtime to try to stabilize the spine. The one I take is cyclobenzaprine (brand name Flexeril) - it has really reduced this muscle spasm pain for me. Others take different muscle relaxants. Definitely ask your doc about this!!
Hi everyone! I am new to this forum, my name is Shelley I'm 31 recently diagnosed with AS. Where do I begin.... For the past 5+ years I have been suffering with severe neck and thoracic spine pain, left arm pain and weakness. I have seen SO many different doctors!! In 2008 I was diagnosed with Thoracic Outlet Sydrome and had my first rib removed along with part of my Scalene muscles. I now know that TOS was not the cause of my pain, and didn't need the surgery. In 2009 I was diagnosed with Ulcerative Colitis and still the nuerologist and pain management docs I was seeing did not make a connection to AS. For years I just thought I was "crazy" I have even had doctors tell me I was just hormonal and making up my symptoms. To say I am frusterated is an understatement! The Rummy that diagosed me with AS really did not seem to know much about the desease or treatment. My primary is finally sending me to a specialist at a well know Univeristy hospital here in FL. I go on the 16th (can't wait for some answers)! I have been reading the forum for about a month and cryed several times, just knowing that other people understand the pain and frustration with this disease is comforting. I wish that no one had to suffer from AS but am glad to have people to reach out to who can understand.

I am HLA-B27+
Ulcerative Colitis
Severe neck, back , arm , feet and hand pain
Very high sed rate
Muscle spams
The list goes on and on

Thanks all for listening...I'm glad I found you smile

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 03/02/11 01:31 AM
hey shell, good screen name from florida!! sounds like the beginning of our stories here. you are certainly in the right place and i am glad you found us also.

everyone here has the dx and yet, we have our own version of it. what works and doesn't differs from person to person. the value of this site is that we can tell what works for us, and offer understanding about symptoms and treatments.

sounds like you have been through the wars and tears are gladly accepted. you are safe to vent and let us all know how you really feel. we listen.

so, jump over to the general forum and pick a topic and join in. are they trying to do something about that high sed rate? like nsaids? or? it is really important to get that inflammation down asap. long term inflammation does its own damage.

welcome, keep in touch and get on the general discussion forum.

prayers and peace, sequoia
Thanks sequoia! I have tried a couple of differnet nsaids, but they all seem to flare my UC. I am hoping this new rummy will have a better understanding of the desease. I have read that the biologics may help the AS and UC. That would be wonderful to have to take one less medication. Although I am worried about the possible side effects that I have read about.

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 03/02/11 08:16 PM
shell, don't worry right up front. i have some form of ibd, so i understand the nsaid effect. just keep up with it. i personally don't take the tnfs but they may just be the ticket for most folks. you and your doc alone can decide. do you have a good friend and/or close family member you can bounce this stuff off?

it is really valuable to read up on the research and make informed decisions. also, come on over to the general discussion forum and put in some more info.

good to have you here.

talk to you soon. s.
Thanks! I have a wonderful boyfriend and great family to support me. I feel like I am always talking about AS or pain or fatigue. I am trying not to vent to all my friends and family all the time beacuse I don't want AS to define me as a person. It's kinda hard because all my girlfreinds and most of my family live across the country. I talk to them on the phone a lot, but sometimes I just need a mom hug smile

Hope you have a great day!
let's see what ya'll think since I can't find a Dr. that will listen,,

I have posted before but now I have been told that I don't have any type of Spondywhatever. I had one Dr. tell me yes you have spondylitis, one Dr. says he thinks I have Spondylitis, one Dr. treat me for spondylitis, a few think I'm making it up I'm sure ya'll have heard this before "it's in your head" and a few say it's muscles and one say yes you 100% have it then a week later swear up and down I don't have it.

Here goes,,
*sharp pain (6 mth) right between my shoulders like I have had a 50 pound back pack on all day, if pressure is applied I will sharply pull away

*dull pain all day between shoulders and belt line

*dull to sharp pain (4yrs) at my spine L-4,L-5 all day long 24/7

*OHHHHH my butt/pelvis,(2 yr) feels like I have been beat with boat paddle ALL DAY!!!!

*urinary flow problems/sex problem (1-2 yr)

*sharp to throbbing pain with tingle (2-3 yr) down left leg to pad of foot sometimes a warm feeling to follow

*cramps,cramps,cramps (38 yrs) from neck all the way to my toes sometimes I need a cane to walk due to cramping in fack of legs and have you ever watched your toes cramp- pull away from each other?

*numbness in arms,fingers and legs,feet

When I wake up and get out of bed my back from legs to neck are super tight, hot shower will loosen me up, then after 30 min. I am pretty stiff for the day. I feel as if I have been hit between the shoulders and my neck is tight, I cant bend over real well and I have a forward posture from the belt up. If I squat down I almost can't get up without pulling myself up on something. The list goes on but one thing is for sure, It's everyday all day. I just got results on blood work **** HLA-B27 negative and B7 positive**** have no clue what B7 is and images show disc problems from neck to pelvis after 4 years this is getting real tough for all involved.

That is my take on me so what are the thoughts of those who live with Spondylitis?
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 03/09/11 03:06 PM
if they are treating you fire, then i guess it doesn't quite matter. i am very familiar with the foot and leg spasms. you described the toes quite well. fun, eh? if they aren't treating you, then ask for something. especially with the pain. they need to be treating you for the pain. untreated pain becomes chronic. just not a good picture. you do present with most of the AS symptoms, but don't worry about the b27 being negative. i have a negative but am seriously diseased.

i think sometimes it takes long enough to show fusing which is helpful in establishing the AS by itself. do you have any other autoimmune dxs. i think that plus my xrays helped my doc. i had some other markers which went with the IDB/crohns which often accompanies the AS.

i say get some kind of anti inflammatory, nsaid, i take aspirin. try one of the tnfs if you are allowed. i also say, if you are getting treatment you are ahead in the game. the name of the dx is not as important. if they don't listen to your concerns, then you have to see someone else.

i am sorry this seems to be such a game somedays...

prayers and peace, s.
I'm new to this website/forum. It's therapeutic to read all these posts about others that have AS. I'm from Arizona, I've had symptoms of AS at 18 and diagnosed at 19. I am 36 now.

Symptoms currently:

Neck pain/stiffness
Rib pain/stiffness
Nerve pain/numbness in extremities
Pelvis and Lower spine pain
Hip soreness
Slight knee pain (not as bad as other joints)
Fatigue (chronic all day)
Drowsiness/fatigue right after exercising

I'm currently on Enbrel and Methotrexate for 1 year now. Those meds seem to be helping alot. I've been exercising more lately like light free-weights and slow-paced jogging for short distances. Thanks for the info you all have posted; it's encouraging to hear from people dealing with chronic pain of AS. Exercising like light weights, stretching and gentle aerobics seem to help me a lot; I look forward to every other day when I get to exercise.
Howdy, tater! Introduce yourself with a new thread in this forum, so everyone can "meet and greet" you smile

Glad to hear the meds are helping your symptoms - sorry you have to be here but glad to have you on board. As you've noticed, it's a great source of camaraderie, as well as advice if you need it - I suspect you can help others as well, with 18 years of AS under your belt!
These are all symptoms that come and go, but the one I get the most often is hip joint pain.

-Recurrent conjunctivitis (as a child)
-Recurrent uveitis and episcleritis (as an adult)
-Morning stiffness
-Tailbone pain
-Hip joint pain
-Rib joint pain
-Tendon pain in right hip
-Tendon pain in right shoulder
-Neck pain
-Carpal Tunnel Syndrome in right wrist
-Psoriasis (small patches, just started to notice in the past year)
-Bruxism, i.e., nighttime teeth grinding, which leads to jaw pain (I think I mostly do this when I'm uncomfortable sleeping at night)
-Fatigue (again, due to not sleeping well, I think)
-Bloody and mucusy stools (this happened a LOT when I was a teenager and still ate dairy. Now I am vegan and don't seem to have this problem unless I eat a ton of sugar?)

*Vitamin D deficient
Hi Nicole - welcome! Do you have a spondy diagnosis or are you pursuing it? Most everything you listed (except the conjunctivitis and bruxism and GI problems) definitely fits! C'mon down to the main discussion area and start a thread (if you haven't already) so everybody can welcome you.

As my daughter first had blood and mucous in her stools when she was in diapers, and exclusively breastfed, I've done a lot of research about Crohn's Disease over the years. Even though the symptoms don't occur as often as they used to, this is a very important part of your medical history to pursue along with your other symptoms. These are classic symptoms of IBD (inflammatory bowel disease) - and NOT of food allergy or intolerance. IBD can't be managed by diet alone although some people do find that certain foods trigger symptoms. It is possible to have IBD go into spontaneous remission - so maybe that is what happened to you - but it is also possible to have IBD causing damage and be largely asymptomatic. That is what went on with my daughter for the past few years. Fortunately, a non-invasive stool test (fecal calprotectin) consistently showed outrageously high levels of inflammation, leading to successful treatment with Remicade.

Again - welcome! Sorry you have to be here, but glad you found us smile
Thanks, Jen!

Yes, I was just diagnosed with seronegative spondyloarthpathy in December (I think my doctor is still trying to figure out which kind it is?). I have made a few posts and received a very warm welcome. But basically, my story started when I a kid, and my symptoms just kind of came and went and I never knew they were all connected. Because I could never explain my pain, my doctors didn't take it seriously. I remember one general practicioner saying the reason my legs hurt was because one was longer than the other and I should wear a pad in my shoe.

I'm sorry to hear about your daughter's condition. That must have been hard for someone so young, and for you, as her mother, only wanting to help her pain!

There is certainly a lot to learn about this disease, but at the same time, I'm finding it's hard to come to any real conclusions because the symptoms (and the treatments) affect everyone so differently.

See you around the boards smile

I am new to the site. I have recently been diagnosed w/ AS. I also have OA. I too, have been experiencing pain for many, many years. Now, 45. Major hip problems over the last 7 yrs, and over 40 injections. Achilles rupture a year ago next week. Anyone else having achille issues??? I still wonder if this is the correct diagnosis. Have started w/ 2000mg Sulfasalazine w/ Tramadol. Is not touching the pain. Any suggestions? Open to any...Brief list of probs: Started in lower back, hips, knees, ankles, elbows, wrists, and fingers. Joints swell, and warm to the touch. Difficulty sleeping, night sweats, eye redness and very dry skin.
Hello everyone. I am new to the site and new to the diagnosis. I was only diagnosed last Friday. I have been having problems for the last two years, progressively getting worse. Mainly ankle, knee, hip, lower back, shoulders, neck, hands and wrist pain. Difficulty sleeping, MAJOR fatigue, swelling in my joints. They put me on a course of steroids and will start the Sulfasalzine in two days after I finish the steroids.
I have wake up feeling extremely tired and in a tremendous amount of pain, especially in my back. I have resorted to sleeping on the couch to prevent me from sleeping on my back. Not really great since I am married and enjoy sleeping in the same bed with my husband, but need to be able to function, so this is my solution for now. I am hoping to seek friendship, guidance and support from you all that may have better insight to this disease. After doing some research online it doesn't look to promising, but at least maybe a somewhat manageable disease.
Kind of wondering what my future holds since I am only 37.
OK my list from the top down:
Headaches & Fatigue & difficulty sleeping
Neck pain
Shoulder pain particularly around the clavical
Mid back and lower back
Elbows (like a tennis elbow)
Sausage digit and saw finger joints
Hip stiffness and joint pain in the groin
Knee hurts to bend
The worst of all has to be my feet (PF and swelling in the Ball and heel of both feet)
Toes sore to bend

But on the positive side I have no gut, bowel or skin issues (Touch wood).
iritis, uvitis
jaw deterioration
ribcage tenderness chest pains when i breathe deep
lower back limited mobility
Left hip main trouble, Right hip occasional
Swollen knees Secondary osteo arthritis in hips and knees
leg spasms.
This'll be my first attempt at a post on here. Symptoms come and go, but here's what I've experienced so far:

One day about 3 months ago or so, I was driving home from work and noticed a
*sore right wrist (went to urgent care, got pills and brace)

Shortly after, I was watching the news one day and *POOF*
*my left knee swelled up and became unbendable (hired a doc)

Then, as I started limping around favoring my left leg *crack*
*my right ankel swelled up (started walking like a zombie)

Then every ache I had ever had in my life came back and settled in. It felt like half my bones were broken and the other half were sprained (slight exageration wink )

*Waist area hurt too much to sleep, hips, back, butt.
*Developed a nagging pain smack in the center of my spine/back.
*One of my ribs (back, right, near bottom of cage) felt like someone had hit it with a 2X4.
*I never realized how much I use the middle toe of my left foot until, for no apparent reason, it felt like it got run over by a train.
*I never know where the littler pains are gonna pop up day by day. In fact, just now, one hit me in the left shin. But the guest that never leaves is from 4 inches below my beltloops to 4 inches above my beltloops and that one really sore spot right in the middle of my back.

I could go on for pages, mostly because I'm a little excited to see that I'm not the only one dealing with this goofy thing (I wanna thank y'all for posting here for me and others to read).

Diagnoses: AS, Inflam. Arth., Sacroiliitis. April 6, 2011.
Treatment: Non. Ster. Anti-inflam. I've been recommended some treatment that deals with getting poked every six weeks at the doc, but I'm not liking the sound of it.

In response to my diagnosis, I decided to take up running. My body disagreed, so we settled on jogging in the comprimise (lol). This coming weekend I WILL be doing the Cherry Creek Sneak 5 mile charity run in Denver...just not in record time.

I'm REALLY looking forward to reading more about your experiences and asking some questions. Since finding these posts I am feeling better already...well, no, not really now that I think about it...but I'm sure I will soon. wink
GO FOR IT! So glad for you that even with those horrible symptoms you can take on a charity jog! The drugs must be working their magic.

I can totally emapthise with the weird places pains can pop up anywhere and any day, and and how unpredictable it can be. You just have to continue to take one day at a time and make hay while the sun shines - which you clearly are!

Read away - this forum is awesome. I've just discovered it myself and it's a font of information that is helpful and encouraging for us all.

Good luck! smile

Welcome, welcome! I can totally agree with the mystery pains, I apparently pulled my lower back laying out on the beach.. go figure! For me the mystery pains last no longer than a week then move elsewhere. Be careful not to overdo the jog, as you will learn we have limits, but more power to you and I hope it goes well!
Been a lurker for a while. Had AS since 1993.

Current sypmtoms:

-Stiff lower back in the morning, been constant for past 17+ years
-Upper back pain migrating from left to right side. Starting to subside a bit now.
-SI, hip pain now and then
-Pain in back, lower ribcage area
-Minor fatigue

Wish everyone the best.
Hello, new here..... just diagnosed with AS. Eye doctor sent me for tests after being diagnosed with Iritis. My lower back has always kind of hurt me a little bit but not too bad. Lately it's been getting worse. I also get sores in my mouth a lot - not sure if this is related but I read something about it can happen during flare ups. A few years ago I had an episode with my knee. It hurt so bad and after tests they couldn't figure out what was wrong. It just stopped hurting on its own. Not sure if related.
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 04/29/11 07:55 PM
welcome karl and bean...sorry not having gotten back to you earlier karl. why don't you post on the main forum? i am sure you have lots to offer your fellow sufferers.

also, bean, stop in on the main forum also. we really welcome all you new folks. we all have the same dx, but our own version and our experiences help others here invaluably.

wish you both the best, prayers and peace, and welcome, sequoia
Welcome Karl and Bean!

Hi. I'm a newbie, but am unsure where to introduce myself and what the newbie protocol is for introductions. Looking forward to learning more here as well as becoming a member of the community.
Hi McGirk. Welcome to the board. Start a new topic on the General board and introduce yourself.

Head to toe: vitamin D deficiency even after perscription strength taken, period irregular, Scoriasis in scalp, vision problems, jaw pain, adult acne, headaches, FATIGUE, teeth heat/cold sensitive (gum problems out of nowhere!), swollen tonsil never goes away, copd/asthma, gerd, mouth sores, left shoulder pain with calcification, severe neck pain, left arm numbness, rt shoulder pain bursitis, left rib pain, both hips bursitis, severe tailbone pain, lower back pain, left leg numbness (told sciatica for 15 years!), nerve damage, both outside heel pain, crack both ankles and hips to be able to use jointa, hand stiffness,hla-b27 positive. MRI/xrays show no fusion, Rhuemy unsure of diagnosis. Says ceronegative arthritis maybe AS. Pain for last 15 years. Both daughters hla/b27 pos, son neg which is supposedly odd.
Sed rate occ high. Tried embrel, sulfasalzine, methotrexate, NSAIDs, muscle relaxers, to no avail. Pain meds help but don't want to live my life on them.
Yoga great. Why can't I get a pos diag??? Went to many different docs, every test. Wouldn't wish upon anyone.
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 05/03/11 08:57 PM
welcome samson... you likely cannot get a dx because you are female. it is the biggest crock in the whole business because you need to get to a teaching hospital rheumy group if you are near or in a big city, i would try again.

sounds like your rheumy has treated you for AS, but unsure why nothing worked. what most folks here are searching for is a dx which allows them to be treated. have you considered the remicade or simponi or one of the other new meds?

i am so sorry. nothing helped? wow. perhaps you have something else going on. have you been thoroughly checked for lupus or any other autoimmunes?

it is really important to get that sed rate down as it can cause damage. i don't like the preddy, but perhaps your doc can give you a short course of it to see what it helps. i have a friend with long lupus (30+ years) and he is on a daily 1mg preddy. it really helps him with the long term.

again, don't worry about the dx by itself. you have/are already being treated for the AS you obviously have. you just haven't found the meds that work for you. they don't always work for everyone. i would suggest humira and remicade. i don't take the tnfs but i have read stories here about the enbrel being the least useful of the big three, humira, remicade and enbrel.

post over on the main forum. and watch those little ones, they can have symptoms, too.

welcome, and prayers to you on this troubling journey.

I put the more unique symptoms first:

When I'm up to my chest in water, I feel great pressure on my ribs and it becomes far more difficult to breathe. This won't go away even after a month of swimming.

Feeling of side "caving in" when lying down.

Feeling of ribs digging into organs when sitting.

Occasional dizziness when standing up.

Very skinny despite eating tons and exercising.

Eczema on hands (only on hands).

Endless inner mouth sores.

Get cold easily - wearing coats everywhere.

Discomfort breathing, easily out of breath.
Often wind up "controlling" my breathing.

Pain in all places containing cartilage except for ears: Neck, back, ribs, hips, knees, elbows, jaw, shoulders, wrists, ankles, and I was even lucky enough to be one of the rare 5% of AS victims with arthritis in the fingers and toes.

Anything that puts pressure on them will trigger the pain. And of course, the greater/longer-lasting the pressure, the worse it is (ie standing for more than 5 minutes).

Frequent need to urinate, little comes out.
Difficulty urinating (can't relax the muscles. It's always stop and go!).

Restless feet/hands syndrome.

Uncomfortable to write.

Joints make cracking noises (built up nitrogen or something).

Brain fog (but I also have ADD, so hey).


1-2 minutes of extreme pain in my lower back when I lie down.

Trouble sleeping.
Never feel rested when I wake up.
I feel worse the longer I've been asleep.

Occasional carpal tunnels.

For two months, my left foot felt like it was asleep, like I'd been sitting on it.

Dry mouth/lips.

Acid reflux.


Eyes hurt when I'm outside.
Blurry vision (on and off).

When I get stressed, my heart rate goes way up, I sweat all over and my throat swells up.

Electric sensation goes down my back when I'm happy/stressed.
Have you seen an ophthalmologist for your eyes? Those symptoms could mean uveitis and that can get back really fast.

lower back feels like it is on fire most of the time
left hip pops and clicks
both knees hurt
both shoulders hurt
takes long time for cuts to heal
tired all the time must take naps around 4 p.m.
neck stiffness
lower back feels like it is frozen stiff
starting to notice burning type of reflux everyday now
confusion at times and a type of mind wondering I never had before
pain all the time in legs and back
migraine headaches
can't stand for very long in one place
must use a scooter now if I have to walk in a large store the pain just gets to much and makes me bend over to far
flu like symptoms often
feel like I have infection but, nothing is showing up on tests
numbness in hands, face, legs
muscle spasms in chest
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 05/06/11 11:35 PM
wow opi...what a rotten set of symptoms! sounds like these symptoms could match some of the AS symptoms. have you been to the doc (rheumy) yet? if so, what does s/he say? sounds like pain is at your doorstep daily. not a good situation.

welcome to the site and start a new post on the main forum and introduce us to you. we know how you feel and that is the value of coming here.

join in discussions, or just read up on fellow sufferers.

talk with you later, sequoia
I'm new to this and don't exactly know how this forum works so please bare with me.

I have read a bunch of post on hear but I don't see many people talking about depression.

That's one on my largest symptom right now.
I'm newly diagnosed.

I'm 34 yrs old and feel like 90. I have always been very active
all my life and all of a sudden the pain is unbearable. My knees are horrible, my hips hurt so bad. I can barely get out of bed in the morning because of my back. I feel like someone ripped my ribs apart. I'm in a constant fog and all I can think of is why me, why does this hurt so bad and do I really need to live the rest of my life like this. The Dr tells me they will probably need to replace my knees they are bone on bone. Just had an MRI done of my back and I have several bulging disks, anterolisthesis I have some other cyst like thing that they can't do anything about and they will probably eventually need to put a rod in my back. I mean really. Everything that I read is like oh it's just fusing of the spine and as long as you work out you'll be fine. Or it's just arthritis you learn to deal. These websites kind of make it seem like no big deal. It's hard because when I try to tell people about it they just don't get it. Sorry for the Rant. I'm just so ticked and this is the first time I've really been able to vent and actually it feels pretty good.

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 05/11/11 06:18 PM
welcome f. sorry you have to be here but you came to the right place. we have many folks with depression on this forum. having chronic disease does that to people. i am going to look for some specific links for you. i just tried the search button (above) under general discussion, and for some reason, it didnt show anything under depression, and with some names i know have been discussing depression. i am so sorry for you. please post on the main discussion forum and tell us your story. mention depression and folks will help you. i will keep looking...

take care, you have a great group of people here who totally understand. prayers and peace, sequoia
Thanks for your help. I think just posting helped get a lot off my chest. I really do appreciate it. Thanks,Sequoia
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 05/11/11 07:07 PM
oh and btw, keep venting. this is a hell of a tough disease (dx) and most folks just have to play it by ear daily. and tell anyone who tells you as you described, it's just fusing, keep exercising, tell them to jump in a lake. the best thing you can do for yourself is get a medication plan in place now. get on inflammation reducing meds per your rheumy in concert with a pain management specialist.

you do need to exercise or do pt on some level. it is the only real reason i am still upright. i keep doing extension exercises.

even tho you are a bit older, you might benefit from the 20-somethings forum, as it discusses young person problems from your point of view. many of us are older (i'm 58) and we have been through a ton of youth stuff. but wherever...just keep posting. it really does help!!

blessings, s.
heart valve disease-open heart surgery to replace mitral valve
severe lumbar pain-disc herniation and scoliotic curvature-canal stenosis
enthesitis of thoracic cage- now on continuous oxygen
2 hemangiomas in t-spine
right hip has bone spurs beginning to fuse to femoral head
nerve damage to both legs
neurogenic bladder-must now self cath
both shoulders, left knee, both ankles, plantar faceitis
14 points of fibromyalgia
chronic kidney disease
atherosclerosis of abdominal aorta and both iliac arteries
Trigeminal Neuralgia-under control 10 mos
chronic anxiety and depression
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 05/18/11 04:41 PM
hey dgirard...sorry to be so lax in getting back to you. it is a hellova list of suffering that you have. wow, you fit right in! LOL.

was the heart valve from the AS or do you have lupus or another autoimmune? hope you don't mind, but how old are you? you have so much damage you must have been suffering for decades, depending on how old you are. your list looks like mine, so you are in the right place.

jump in and start a new post on the main forum. you don't need to relist your dxs. just refer to them being here. tell us your AS story. i am more than certain you will have many folks feeling like they know you.

prayers and peace on your journey -- you are among friends here. sequoia
Same as most

Extreme pain in the morning mostly in hips and back
New symptoms as of late
Pressure/dry in my eyes
My Wrists are starting to swell and I found my self not being able to open a jar the other day.
I am starting to notice pain in Ribs now.

The new symptoms came on rather fast the last couple of months and have taken me by surprise.

I am sorry I have yet to introduce my self. The feeling of my husband just not understanding has become over whelming so I thought I would stop lurking and maybe get a bit of support. smile
Hi. I'm new and have not as of yet been officially diagnosed with AS. I'm a 39 yr old female, mom of 2 (ages 11 and 12). I have a herniated L5-S1, and have been told that I have a transitional segment at S1-S2, and, so far, I have one partly fused SI joint (fused from the top down to about mid-way). I've been stiff every morning for the last 2 yrs and am awaiting the results of an MRI of my SI joints and lower back to see if there is evidence of AS or to find out what else could be causing my pain. I have a first cousin with AS, and I believe my father may have had it--my cousin with AS is his nephew. My father died at 44 of a heart attack and developed emphysema at a young age. My mother left him when I was 6 weeks old because he had become a drug addict who used excruciating back pain as his excuse for drug abuse. He had been in a car accident at a young age, also, and most people attributed his back pain to the accident.

My 12 yr old son can't touch his toes and often complains of aches and pains. He is tall and skinny and athletic...and has ADHD. I was researching AS because I was concerned about him when I realized I should get myself checked out. So, I went to see my physician's assistant and requested an x-ray of my SI joints and lower back. The x-ray showed a fused SI joint on one side and, the physician's assistant said, "shiny edges..." on my vertebrae. I have since seen a rheumatologist once and will see him next week for the results of the bloodwork and MRI that he ordered.

My symptoms are:

Stiffness in the morning for the last 2 yrs. Sometimes I need help getting out of bed, but not often. I use an elliptical machine for exercise, and that helps me get moving in the mornings.

Back pain...not sure if it's all from the bad L5-S1 or if AS could also be a factor

Eye pain and light sensitivity and a history of odd eye symptoms (in my 20s, sometimes my nearsightedness prescription would suddenly change to a weaker prescription for 24-48 hours). I saw an opthamologist a couple of years ago for eye pain, but he didn't see anything wrong. I don't think I mentioned the back problems or history of AS in my father's family.

Once my liver enzymes jumped up, but no one could figure out why. My doctor said maybe it was the meloxicam I was taking daily for back pain.

My hips hurt at the end of the day, and my upper back feels like it can barely hold me up in the evenings. I work a low wage retail job on my feet all day, despite a degree in English. (I'd rather be writing, but that doesn't pay the bills.)

Nice to meet you all. I should get my MRI and blood test results on Wednesday of next week. I had an HLA B27 test once, and it was negative. However, I've read that false negatives can occur, especially when other HLA genes are involved. My mother's sister has Lupus, and there is a history of Type 2 Diabetes in my family, as well. I understand those may be linked to other HLA genes.

Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 05/19/11 11:52 PM
hey whitbel...welcome, don't recall seeing kc before. MO or KS?

you sure sound like AS, and sorry to say your son does also. many of us have kids that are already diagnosed (dxd) or on their way. no one can help it. we didn't know we would show up with this dread dx.

come on over to the main forum and tell us about your journey, we all understand, and encourage each other to seek treatment which works for you, and to stay in touch with a good rheumy.

see you on the general discussion. sorry you have to be here but you came to the right place, prayers and peace, sequoia
Thx, I'll do that, and I'm on the KS side. My husband is from here.

Anyone have gum and/or teeth issues?
Hi Suzie,

Hubbie has been losing teeth right and left for over a year now. Has been on Enbrel for over a year now, don't know if related. He will lay down for a nap a get up with a toothe missing. Don't find them anywhere so I guess he must be swallowing them. He has had two rounds of absesses this year. They took 3 first time & 4 the second. Doc wants to start taking them all a few at a time but can't afford it. Will have to deal with one issue at a time. Good luck.
Originally Posted By: sequoia
hey dgirard...sorry to be so lax in getting back to you. it is a hellova list of suffering that you have. wow, you fit right in! LOL.

was the heart valve from the AS or do you have lupus or another autoimmune? hope you don't mind, but how old are you? you have so much damage you must have been suffering for decades, depending on how old you are. your list looks like mine, so you are in the right place.

Hi Sequoia,

Thank you so much for your reply and kind words. I must tell you that when I first read it I cried my eyes out. I have many people in my life who love and care for me, nevertheless, they don't really understand what they see happening to me and I feel so isolated and overwhelmed by the disease.

To answer your questions--I was only diagnosed with AS about 6 mos ago, but my rheumotologist believes that my severely stenosed and diseased mitral valve was caused by AS since I did not have rheumatic fever as a child and have tested neg for lupus. My heart surgery was 4 1/2 years ago at the relatively young age of 46, but I never really bounced back as I should have. My AS has been on the fast track since getting trigeminal neuralgia about 1 year ago. Now I need oxgygen to breathe and I can barely get out of bed or walk. I'm so sorry that many people here suffer as I do, but I am quite sure the support I will find here will be immensely helpful. Thanks again,
Jaw/Facial Pain/stiffness
Left extremity stiffness.. Leg, arm, neck, jaw...
Lower Back Pain/stiffness
Groin Pain
Breathing problems
Left Eye Pressure

Haven't been diagnosed yet.. Been trying to find out what was wrong with me a for years.. Doctors suck!! My grandma and aunt recently tested positive for the gene, and were diagnosed. I'm hoping to finally find out once and for all, as I have been suffering for a long time.
23 year old male

For me, the following is all attributable to Ankylosing Spondylitis:

Back pain
Groin pain
Hip enthesisits [excruciating]
Rib cage pain to the point of difficulty breathing
Shoulder pain
Elbow pain
Knee pain
Jaw pain
Ankle pain and swelling
Finger pain
Bilateral sacroiliitis
Tendon burning
Joint grinding, snapping, and popping
Constant hunger
Adrenaline surges
Disabling FATIGUE
Muscle weakness/shakiness
Muscle pain
Breathing difficulty
Blurred vision
Wobbly vision
Balance issues
Numerous dark eye floaters
Eye redness
Light sensitivity
No libido
Post-exertional malaise [Bedridden for days after exercise]

Humira has done good work on my joints so far, but I still feel like crap.

Hello all. Newbie to the board. After 3 years of dead ends I was just diagnosed.
Here are my symptoms.

Debilitating pain in lower back that radiates down legs to the top of my feet. At times it is impossible to walk unassisted.

Stiffness in hands, knees, elbows and ankles

Limited motion in back. Can only bend to about 60 degrees. ( makes putting on shoes and socks real fun.)

Muscle spasms and twitching, usually after nerve pain begins and is severe.

Eyes water and burn at night (I attributed this to eye strain but I have perfect vision except blind spots in peripheral vision)

Insomnia due to pain and stiffness.

Fatigue. Sometimes I just drag, Sometimes I just fall asleep for a few minutes just sitting up. I attibuted this to the insomnia.

Swelling in ankles.

If I exercise or move the wrong way I'm down for about three days due to nerve pain. Also happens after long car rides.

Weight gain from inactivity

Sometimes it hurts my back just to breathe

The best way to describe the nerve pain is like a bad toothache all over my body. Or having a broken bone. It always starts in my tailbone and hips then eventually radiates though out most of my body.

I believe most of my problems are traced back to the pain, fear of the pain, or the pain has side effects like mood swings, libido, inactivity, etc.

I am a 29 year old woman who has AS

It took the doctors three and a half years to formally diagnose me with AS. From February 2007 to September 2007, I saw six different doctors, each of them had their own theories of what was wrong with me until my current rhemy diagnosed me with AS.

What I went through until my diagnosis sick
*I lost two inches in height (I used to be 5'6, now I measure 5'4)
* I had two episodes of uveitis (one in 2005 and another in 2009)
* Limited moblility in my neck
*Flu like symptoms (usually after seven in the evening)
*Hair was falling out like crazy (I used to have such long and pretty hair).
*Loss of appetite
* I lost at least twenty pounds without even trying
*Swollen ankles, feet and knees
*Lack of energy
*Now matter how much I slept, I still felt tired
* Pain around my ribcage

Since my diagnosis and starting treatment, I would say that there was a big improvement of how I felt. grin

I still have some mobility issues and if I push myself too hard, I get tired. frown

For the most part, my other symptoms are a thing of the past. smile

I now have enough energy to swim, work on bead and stitching projects, go out of town for a few days for short vacations, stay up late on weekends and vacations and get things done smile

I still cannot drive yet because of the limited mobility in my spine :(, with my treatments and exercising, I should get closer to my goal of being able to drive again.

I am on Remicade (once every eight weeks)
Methotrexate: 6 pills once a week
Folic acid and B-12

Where you ever tested for MS
66 year old female with diagnosis of p0ssibly Reactive Arthritis - more liekly Ankylosing Spondylitis in May 2011.

Symptoms over the past 33 years:

1978 - low back pain - diagnosis - Scoliosis
1979 - pain in left hand - unknown diagnosis
1983 - acute pain in rt. foot w/o swelling - diagnosis unknown
1984 - acute pain in rt. foot w/redness & swelling, conjunctivitis,fusion of left SI joint, B-27 positive - diagnosis - Reiters Syndrme (now Reactive Arthritis)
1984 - 1998 - pain and swelling in rt. foot (crutches x 3), pain & swelling rt. knee, pain in lower back and thorasic spine - episodes a year plus apart
1986 & 1988 - pain in rt. hip and rt. knee - B-27 positive - diagnosis - Reiters Syndrome by two rheumatologists
1999 - partial tear of rt. ankle tendon w/o trauma
1999 - bone density - diagnosis - Osteoporosis
2000 - incomplete tear of left rotator cuff from trauma
2000 - 2005 - lost 2 inches in height - diagnosis - Osteoporosis
2006 - Ongoing pain in thoracic spine and lower back - new rheumatologist - diagnosis - "A little Osteoarthritis" - DJD - SED and CRP rates normal so ruled out autoimmune arthritis
2008 - pain in neck, numbness in arms, back pain - x-ray showed compression of C2, C3 & C4 - rheumatlogist said lumbar x-ray report stated no fusion of SI joingsdiagnosis - DJD
2009 - pain & swelling left knee w/o trauma - diagnosis - probably torn miniscus - no need for MRI - 10 days on Naproxen
2009 - Internist ordered cervical, thoracic and lumbar spine x-rays - diagnosis - DJD in cervical and thoracic spine - I don't remember the different diagnosis for the lumbar spine
2009 - 2 episodes of intense pain in lower rt. back, down rt. leg - diagnosis - Sciatica
2010 - incomplete tear of rt. rotator cuff w/o trauma
1.2011 - Intense, acute pain in lower back, front of legs down to knees, shoulders down to and including hands - practically immobile - diagnosis by same rheumatologist - Spondyloarthropathy - B-27 test negative - SED and CRP rates very high for the first time - After 6 days on 1000 mg. Naproxen SED & CPR rates were at the very low - rheumatologist said I was fine. I was not fine. Severe allergic reaction to Naproxen. No more NSAIDS.
5.2011 - pain rt. lower back - new rheumatologist viewed and read all x-rays - severe DJD entire spine, SI joint fused on left side and almost completely fused rt. side. SED & CRP rates normal -diagnosis - probably Ankylosing Spondylitis for years
6.2011 -Continuing intense pain in lower back, front of legs to knees, left rib cage, rt. shoulder & intermittant pain in left hand and right fingers. Diagnosis - probably Ankylosing Spondylitis hot spot flare ups
Current status - acute pain alternates between rt. & left lower spine, front of both legs to knees, rib cage, rt. shoulder - PT 2 x week

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 08/03/11 03:31 AM
welcome maggie. sounds like you have been suffering for quite a long time. i, too, have lost height, 3 inches so far. i am older also (58), and can easily catalog lots of "random" symptoms you have had over the decades.

at least you can now have a diagnosis (dx) and have a starting place.

why are you only on pt? isn't your rheumy concerned about more damage? are you not willing to go on trial other than the nsaids? there are dmards.

also, my crp and sed rate are almost always normal. that is often the case. welcome, read about the dx here at the home button and jump in on our main forum, either start your own topic, or join in on another thread.

prayers and peace, and sorry for your suffering, sequoia

37 year old male diagnosed with USpA in March 2011

HLAB27 neg

Neck pain and stiffness started about 12 years ago, I was bounced from DR to DR to find bone spurs and nothing they could do for me except take Ibuprofen and Tylenol.

Nov 2010 - Current, have lower back pain, shoulder, hips and knee pain that I took Ibuprofen 4 times a day just to dull the pain. Sleeping at night did not happen. Toward the end of March 2011 my ribs felt like they would explode if I had to cough or sneeze.

Was referred to local Rheumatologist in March 2011.

Damage to hip shown on Xray and no damage shown on SI joints on the Xray or MRI.

Current knee, hip, neck, lower back and shoulder pain along with extreme fatigue.

Currently taking 5 mg Prednisone, 3 grams Sulfasalizine

My Rheumatologist said the next step is the Biologics but cannot proceed without further evaluation since I am HLAB27- and show no signs of SI damage. I have been referred to another Rheumatologist who specializes in AS and have an appointment this Friday.

I am praying that the appointment on Friday will provide some relief and direction to help with the fatigue and pain. I have the support of my wonderful wife and I have accepted the challenge that I have ahead of me and will fight this battle head on.
Thanks, sequoia, for the welcome. Yes, my new rheumatologist is concerned about more damage now that I can't take NSAIDs, but has not mentioned dmards. I will look those up. She said I could take 10 mg. cortisone for a week, but also said it is not recommended for AS. In addition, the last time I took a five day tapering dose of cortisone I dropped the crutches and ran for the train, but gained 15 pounds. My SED & CRP rates have only been high once. My mistake was that I stayed with a rheumatologist who dismissed my symptoms for far too long. PT has been a doubled edge sword - sometimes feeling better and sometimes stiff and sore, but I need to try something so I don't end up looking like Quasimoto's great, great granddaughter.
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 08/03/11 06:09 PM
my hubby had RA and takes the dmard, methotrexate (mtx, we abbreviate alot here. there is another one called sulfasalazine (szx) and many more. most of our folks here try the dmards (disease modifying anti rheumatic drug) and many add the mtx with their tnf (enbrel, remicade, humira, or simponi)

tons of our folks take preddy, in medrol paks, the taper 5 day, i believe, or on higher dose depending on what you need.

preddy is awful, but works depending on your level of debility.

so jump in on the main forum...peace, sequoia
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 08/03/11 06:13 PM
hey WVUGG - welcome, as with all new folks, i tell them you came to the right place. we know what you are going through. i guarantee you someone elses' story here sounds verbatim to yours.

you have a curious mixture of strong symptoms and no physical evidence. however, good on your rheumy to talk taking action before the damage is done. we just have to go where we feel comfortable. i, too am b27 neg, there are other genes they are finding associated with this dx. we are likely positive with those genes.

good on your wife, my hubby, tho he has RA, is a wonder for me. great to have the support.

good luck on friday. join in on the main discussion forum and tell us about your journey, and jump in on other topics. we are a good group of folks who really try to help each other.

prayers and peace, sequoia
34 year old female ...pain first started as a child around age ten in my lower back...mild. By age 18 was consent and progressive. By age 30 into my neck and hip...

lower back pain radiates down leg
middle of back stabbing pain wakes at night (hard to breathe)
inflammation so intense feels like large lumps in my back at times
stiffness and pain in neck radiates up into my ears
hearing loss
twitching and numbness in face and between shoulder blades
left elbow pain shoots down arm
knuckle pain in both hands
right hip pain
extreme sensitivity to light
Consent aches and pain
from time to time hit with extreme exhaustion (a few days a month)
Bi-lateral carpal tunnel

Originally Posted By: miranda12503
.....pain first started as a child around age ten in my lower back...mild.......

I have reading the stories on the "Your Stories" page - while it is accepted that AS symptoms such lower back pain or SI joint problems commonly start in late teens or 20s, even 30s, it seems many of us had some symptoms in mid to early teens, or even younger
I remember laying in my bed crying because it hurt to lay on my stomach...yet I wanted to sleep that way ....the pain was mild to what from what I have had over the years. Does show how early it can start... I know I looked here when first on the site to compare symptoms ...first time in my life it knew the Dr was right...I have AS. Think this list is a great idea for newbies!
Newly diagnosed after 2 years of symptoms:

Elevated sed rate
HLA-B27 positive
Neck pain and stiffness
Symmetrical heel and ankle pain (x rays show bone deterioration)
Symmetrical hand,wrist,finger pain and stiffness
Shoulder and chest pain and stiffness
Flare ups in which I am in so much pain I can't move with a great loss of mobility
Sudden loss of Weight (30 pounds) at onset of symptoms
Periodic elbow pain
Periodic numbness in fingertips and heel of my hand

No MRI confirmation yet
No back pain (knock on wood)
No spine deterioration yet on X Rays
-back pain from the buttocks to the center of my shoulder blades
-eye sensitivity to the sun
-neck pain
-foot pain
-swollen and painful hands
-pain in left ankle
-morning stiffness
-trouble sleeping
-short term memory issues
Stiffness/pain in ankles/feet & wrists/hands
Sacroiliac & Neck pain (Helped by Osteopathic manual manipulation; also have scapular/upper trap scar tissue from a car accident)
Knee pain, at rest only
Morning and afternoon stiffness
Bruce 10
Nov 2009 - took 6 months and muscle biopsy to confirm its not MD
Dx of Poly Juv Idiopathic Arthritis w/ Enthesitis Arthritis
Pain in Knees
shins from enthesitis
Aug 2010 - Dx now Juv Spondylitis
front of chest and upper back(HOT SPOTS)
pain in Si Joints
lower back very tight(uncomfortable)
alot of fatigue
Hot flashes...doesnt care where he is(takes shirt off) smile
Ulcerative Colitis of Rectum DXs in March w/ colonoscopy
Bloody, clotty, coffe grounds in stools...up to 5 times a day
60mgs of Prednisone helped get UC under control
Glaucoma due to Prednisone, Tapered off in May, only one flare
All Lab tests are normal..Even ESR when he was in worst pain ever can not get off the ground and is put to bed like a mummy:(
Very hard to diagnose.

Takes Remicade(remicade working well at this time), and MTX for Spondy and Asacol and Canasa(we just stopped) for Ulcerative Colitis

Have tried NSAIDS, MTX(brain fog), Enbrel(exsaserbated UC) Orencia stopped working after 6 weeks

Worried about Remicade side effects...A bit odd and worried...hes only 10 and I hate putting all this crap in him
Hello, I am brand new to this site and this is my first post. I was diagnosed with AS one month ago.Im a 34 YOM. Here are my symptoms.

Constant shoulder pain
Extreme neck pain
Mid back pain
Hip pain
Groin pain
Elbow/arm pain
Hand pain
Extreme back rib pain(prevents sleeping more than an hour at a time)
Big toe pain

Ive recently started on Sulfasalazine and Meloxicam. So far to no avail. Any suggestions would be greatly appreciated.

I do have a question for anyone willing to answer. Does it honestly get any better? Because it sure doesnt feel like it will.

Thank you:)
Hi Rye!! Try to be patient, I know it's hard. We all want a quick fix and it just doesn't happen like that. Post your questions in the main part of the forum, just hit new topic. I just happen to notice your post because of your user name smile .
It can get better, you just need to find the right medication combo. There will always be ups and downs and it's ok to be frustrated and scared. Hope to hear more about you and your journey, this is a great place for advice and support.
I am also new to the site, but I am glad that I found it. The only other person I knew of that had this was my grandfather and he has passed on due to complications from a spinal fracture. (His spine was completely fused at the time of his death). I was diagnosed in June, after 5 years of different doctors, tests, wrong diagnosis, and the usual runaround. My current doctor was actually sure that I had AS due to my symptoms, family history, etc... but when we got ready to do the blood work, here came baby! (:

I'm 27, a military wife, and a stay at home mother of a 5 month old, beautiful baby boy. My flare ups have increased dramatically since the birth of my son. Currently waiting for my first appointment on the 27th of this month.

Here are my symptoms:
Constant lower back pain/stiffness
Frequent cases of extreme lower back/hip pain (prevents walking)
Shooting/Stabbing pain in hips (worse since giving birth)
Leg weakness and "giving out", pain radiating down legs
Neck stiffness/Tension headaches
Morning Stiffness
Constant tension in upper back
Limited mobility
Stiffness/pain in right wrist
Blurred Vision
Inflammatory Bowel Issues
Weight loss
*Very painful pregnancy and delivery*

And there you have it!
I am new also! Signed up today, glad I found all of you! I was just diagnosed and am awaiting my referral to U of M. My symptoms have been present since my teenage years, but each separate one was never "Significant" enough to cause concern. I call my recent symptoms, my "explosion". It seemed to have come on strong in the last year and just progressively worsens.

Symptoms are:

Constant lower back pain - sacroiliac joints - disabling at times
left foot pain (controlled now with Lyrica)
left ankle pain
left shoulder pain
blurred vision
Leg weakness
Extreme fatigue
Pain between shoulder blades (Spine)
Pain/stiffness in neck
Extreme morning stiffness
Pain and swelling in right hand at knuckles
Limited mobility
Hearing issues
Did I mention fatigue?
Whole body aches (Flu-like) at times
Plantar Fascitis
Irritability! (Wonder why, right?)

That is my story. Heat seems to be helping quite a bit right now along with pain meds. I hate being on pain meds, but I think this is going to be part of my life, for the rest of mu life. I am looking forward to the U of M and getting started on some medication combos that will help to control the symptoms!

Todd, 40 with the best family one could ask for
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 09/16/11 04:15 AM
welcome todd, jump over to the main forum and post up on your story. thanks for coming. it takes a lot of us to figure everything out, LOL. put in your two cents!

prayers and peace, sequoia

Symptom list

1. pelvic pain,bilateral
2. rib pain,constant
3. foot pain,arthritis in sm. joints
4. hand pain and swelling,sm. joints
5. plantar fasciitis
6. tendonitis
7. problem with knee and hip giving out
1. hla b27
2. iritis
3. stomach breathing
4. lower back pain
5. middle back/ rib pain
7. i have bunions on both feet, have read they can be caused by arthritis?
8. headaches i don't know why i get them, could be too many painkillers maybe?
9. stiff neck
10. costochondritis
11. hip pain
12. morning stiffness
13. my arms twitch uncontrollably sometimes when i'm tired and lying down. i don't know if it is AS related though.

have had mri confirmation.
14. forgot to mention ESR in blood tests. mine is currently 23. highest i know of was 45 last year. i don't know what it was 10 years ago when all this started.
Hello new to the board. Name is Mike and I wanted to stop in and list a few of mine. I have no idea really how to make the list but here goes. Brief history, my great grandpa died of AS, my father had AS as well but died from a tumor last year. He told me to get tested but never have as I seem to have same symptoms.

1. Lower back and left hip joint pain
2. Pain through middle and upper back and in shoulder blades
3. Have had swollen eyes and red eyes
4. My ribs Ive felt tighter throughout the years and are sore
5. Ankles and toes and my left knee seem to be in pain and the moving hurts.
6. Right knew..its fake lol
7. Constant weak neck

I have always been afraid to get checked, let alone having no idea how to. It scares me to think I could get what my dad has as I had seen what he dealt with throughout his life. I coach wrestling and work out but I find the constant struggle from the pain and stiff joins, more so in the neck, back and feet. Im only 28 years old. Thanks
Hi Mike,
Welcome although I'm sorry you had to be here - I'm glad you found us! I'm so sorry to hear about the premature loss of your dad. That must be a terrible thing to go through.

You mentioned not knowing how to get checked - when you are ready, make an appointment with a rheumatologist. They specialize in diagnosing and treating various types of arthritis and auto-immune or inflammatory conditions. Once they hear your family history and symptoms they will know what to do - specific tests in the physical exam (range of motion etc.) as well as bloodwork.

If feasible, you may want to consider seeing your dad's rheumatologist since he will know your dad's history in this regard.

It is scary to be facing a diagnosis like this - but try to remember that with proper treatment you could feel a lot of improvement in the pain and stiffness, which would be a great benefit in your active life!
my symptoms...

26 yo female
-spondylolisthesis of L5 on S1
-chest pain - worse with deep breathing, coughing, sneezing, or laughing
-lower rib pain - I get muscle spasms when taking a deep breath or when my lowest ribs are touched. It was getting so bad I couldn't even wear a bra because it would set off horrible spasms.
-pain between my shoulder blades
-pain and stiffness worsens in the late afternoon and gets increasingly worse through the night
-trouble standing and sitting still
-FATIGUE - I just want to be invisible most of the time
-even with the fatigue I can't sleep, I've spent many nights awake in bed all night feeling so exhausted but still unable to fall and stay asleep
-sun sensitivity - I break out in hives and start feeling flu-ish in the sun. the sun makes me depressed! I'm glad I live on the coast, I LOVE fog!
-migraines - usually are set off by smells such as cigarettes, laundry soap, car exhaust, perfumes, cloves...
-bicuspid aortic valve with murmur, and in the process of being diagnosed with unexplained hypertension. Both probably unrelated to AS but my grandfather who also has AS has many heart issues.

Diagnosed last month, and started Enbrel 2 weeks ago. I felt relief the night I started!
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 10/20/11 05:59 PM
arin, welcome to the site. i, too am experiencing the heart issues, and at least, for now, my doc put them to the AS. i had an echocardiogram on tuesday and hope to get the answers soon. it should be interesting.

i think i have seen you post on the main forum. start a new topic and tell us a bit about your journey. we can relate greatly to the symptoms, but each of us has our own version of the dx. hope the enbrel helps.

prayers and peace, sequoia
Can't believe I didn't post here before. It's somewhat varied over time. I don't remember my hips hurting so much at first onset, it was mainly lower back/sciatic pain at the time. Crippling Sciatic nerve pain.
Now it's mostly hips and saccral spine.
So, here goes.
Hip/Saccral spine pain (hips being the most severe).
Shoulder stiffness/pain
neck " "
knees " "
ankles ""
Chest pain/shortness of breath. My heart looks healthy though, according to various docs,so it's not my heart. It seems to be my ribcage.
Severe morning stiffness.
Stiffness after ceasing pretty much any movement.
Exhaustion/fatigue....and hip pain. More hip pain.
Insomnia, from pain level (for years at a time)
Irritation/depression/social isolation due to pain level
Generally just feel like a space alien.
I seem to be having more vision problems, and for some reason everything on my left side seems to be worse than my right. My left hip MRI was worse. My left eye's vision is wonky, etc.
IBS, most especially with lots of NSAIDS.
I seem to have more skin related issues as I age, not sure if this is related, but some of them almost resembled psoriasis. Then I showed my doc and was told no. Weird part is that my biologic seems to have the side effect of making them better, which is fine by me.
I think that's all. I just know "normal" people have no idea how I feel most of the time. It's really like we're from another planet. I mean, if we aren't fused already and stooped over, we appear pretty normal. I think if a lot of folks had to undergo the pain we do daily, they'd think of this disease a LOT differently.

Originally Posted By: Ubik

Irritation/depression/social isolation due to pain level
Generally just feel like a space alien.

i feel like this alot of the time. it is most annoying because i find i don't have the energy to keep explaining myself to people.

definitely feel like a space alien alot of the time.
@ Scubadiver, I know JUST what you mean. I have a brief synopsis of it that I break out for half interested/not really interested/disinterested people that ask.
I'm think I'm going to put out some sort of brochure for AS to give to people seriously considering being a friend/lover (although the later is becoming pretty unrealistic as the disease progresses) to simplify all the explanations. I'm being sarcastic right now, but I almost feel like we really need brochures. It would save VAST amounts of explanation.
My mom works in health care, and she acts as if I should just be "shrugging it off", despite being surrounded by people aware of the condition.

What to do?
I suggest just trying to positive about life in general. I just recently was diagnosed with AS as well. My father had it and passed away last year from a tumor between his lungs as well my great grand dad died from AS, well at least thats what we believe. But like my dad tells me, dieing is one thing but being alive is another. Be grateful for what we have and do, even if some days it seems impossible to go. I feel the pain, I understand the hardship along with my wife and kids but it is nothing I cannot handle. I exercise which helps, I ignore people that do not understand, for which the truth be told they do not, so I do not expect them to nor do I feel ashamed or hurt, depressed when they shun it away. Not understanding something, people tend to shy away as they don't understand. I understand what I have, what I can do to help, the support I need are the ones that I love and understand the hardship as well, everything else I do not worry about. There are people that do care and understand, it usually happens when you are not looking that they find you. Stay strong everyone, being alone is one thing but we are not. I for one will not let AS keep me from living, even if it seems unbearable some days. I will turn 29 years old in two days and so far AS was something I might or might not have for the longest time, now that I do it changes nothing, I will keep doing what I am doing till I no longer can, if I get to the point I cannot chase my wife around any longer I will do it in a wheelchair smile
Hello All,
I'm new to this board. I was diaganosed with AS about a year ago. It was fairly easy getting diaganosed as my sister had just been and we have many of the same symptoms. For a long time we both just felt like we were crazy with all the different things that were causing us pain.
Here are a few of my sypmtoms
Extreme lower back pain
Radiating pain in my legs from hips to toes
Pain in my wrists and hands
Hands and feet cramp
Tingling throught body
Extreme fatigue
Inability to stand or sit for long periods of time.

so many more but I'll have to add them later.

Just wanted to say hi, and join in the conversation
Hi Kim, welcome! We have several new "Kims" lately so be sure to start a thread and introduce yourself so we can get to know you smile

Sorry you have to be here, but you are among friends now that you found us!!

Was your sister also diagnosed? Have you found any medications yet that have helped your pain and functioning?
Yes my sister was also diagnosed about a year prior to my diagnosis that is what helped the process along.

I tried Humaria but it seemed to just make all my symptoms worse. I started Remicade but wasn't able to complete the inital 2 week then 4 week process as my husband changed jobs and we had to do without Insurance for a month. But I felt great the after that first infusion. Hoping that I'll be able to restart it in the next 2 weeks or so
Hi! I'm new...just signed up today. I'm a 37 yr old female and was diagnosed with AS yesterday.


Pain/stiffness in middle and lower back

I see all the symptoms others have and it scares me a little. Makes me wonder if I'll get more symptoms. I may not have a lot of symptoms but I feel for each and everyone one of you. I have had debilitating flare ups so I know how bad it can get.

UNUSUAL STUFF I have some of the same symptoms as most of you - chest pain (difficulty breathing), lower back pain (especially my butt!), tendon pain - particularly achilles,

But I also have what I think are less common AS symptoms such as pain in the hands and fingers, elbows.

But here is one symptom my exwife (an RN) thought I was full of it...I almost never get a cold or flu and when I do it is almost certainly a mild case. Anyone else get this?

Not a hypochondriac...never go to the doctor, had my first flu shot this year. Is this common or do I have Superman DNA ha ha.
Don't worry about it. Im 51 diagnosed at 32, rarely go to the doctor (now) but I'm fine...have to have a comfortable place to sit but that is about the only limitation. At one point I could barely walk down stairs or pick up my kids - get a good doctor but the meds they have now are better that the stuff I used.
Quite a few folks here have peripheral arthritis, Kit (hands, feet, knees, hips, etc.) This is billed as relatively uncommon but we here question if that is accurate. Also it's possible to have OA at the same time as spondylitis - the hands are a common site for OA. So it can be hard to tell sometimes, what the root problem is for various symptoms.

Your ex-wife the RN didn't know much about the immune system, I guess. Your healthy history doesn't mean you can't have spondylitis! In fact many of us have generally robustly health. I am one, the last time I missed work for illness it was a migraine, before that I can't even remember being very sick. We had H1N1 in my home - my partner and my daughter had it - but somehow my son and I didn't catch it! My kids also have very good health as well and seldom are sick. Some people are just that way!

There is also a theory that the overactive immune system that causes the symptoms in spondylitis may somehow protect us from everyday ails - but I don't know if there is any truth behind that.

Welcome, come on down to the general discussion forum and start a new thread to introduce yourself!
New here...

First onset was in 1997 or so, back in college. Felt like I had the regular flu followed by crazy painful back pain.

The back pain eventually spread to my knees, heels, toes, neck, jaw, thumb (but not fingers), ankles, etc. Symptoms lasted for about 6-7 months with decreasing intensity.

From then until the last few years (2010-11), the only real symptoms I have had were iritis (alternating eyes) about every 1.5 years, along with episodic SI joint pain. Over the last year or so, the SI pain has increased (but still not constant), and I have more upper back, neck, and back rib cage pain.

Right this second it's pretty tough to walk w/ the SI pain. Taking 500mg naproxen 2x daily, after switching between a whole bunch of other NSAIDS, including meloxicam.

Haven't started on any biologics, but I guess I have to consider it...

Anyway, glad to have found the board.
Welcome! Start a new thread to introduce yourself and tell your story smile Lots of us here have had experience with the anti-TNFs if you are looking for info beyond what you can read in the product info and website. Sorry to hear your SIJ pain is having such an impact right now - does the naproxen help much?
I've had some extent of lower back pain for the past 15 years or so. I'm 33 now and it's been getting much worse. Pain is going into my buttucks and then to my theighs. Sitting down for too long, the pain gets unbearable. If I stand up in one position for too long pain gets alot worse. Pain in my shoulder blade. About 6 weeks ago got a stiff neck and then another one and another one and now its like I cant turn my head without it pulling down into my shoulder blade. I cant hold my 2 year old without having severe pain in my lower back and legs. I havent been diagnosed with as, but my brother was just diagnosed 3 months ago. I got bloodwork done and the ana antinuclear antibody came back 1:320 speckled pattern and he referred me to a rheumy. Got an appt 12/23. Still waiting for hla-b27 to come back.
Hi Scott, I'mm 33 too and I totally understand it feels like every position I'm in has a downside. My sister also has ankolsing, we need a message board for siblings.
That sounds like a good idea. Speaking of sisters, I have one named kim and she needs to go get tested too even though she thankfully has no
symptoms .
Lower back pain
Upper back pain
Terrible neck pain
"Frozen" shoulder and pain in shoulder blade
Impaired use of right arm
Gait has changed
Pain in groin
Pain in left hand
Phlegm in lungs
Heart valve regurgitates (unclear if associated)
Sleep with my right arm at a 90 degree angle against wall
I am 25y/o and have had back pain for 8yrs. I believe now that I have had AS since I was in middle school. Looking back at all the problems that I have had over the years IT ALL MAKES SENSE! It was sort of a relief when I was finally diagnosed with AS in november 2011.

"what? I'm not cRaZy?!!"

I have always responded very well to good ole advil.
I am currently on Enbrel, this medication has changed my life! : )
I still get stiff and have pain if I just sit for too long.

Low back pain
middle upper back pain
chronic iritis in the fall, spring, winter
SIJ pain
radiculopathy in both legs

HLA B27 -
imflammatory labs come back normal, elevated RF
show inflamation, spinal canal stenosis, foraminal stenosis, bone spurs and reherniated disc on MRI.
Had Bilateral microdiscectomy and formainotomy in 08' (21y/o)
One year after surgery back in the same boat....
So glad I read this! I am still going through diagnosis phase. I have terrible mouth sores too. I had no idea this could be connected. My story is rather long but I am convinced that based on my labs (HLA B27 positive) and symptoms I have this disease. Havent been able to treat due to a liver disease I have been battling. Now that I have successfully completed liver treatment, I hope to get some answers and address the AS problem. The AS symptoms could not be addressed until after the liver issue. Returning to doc next week. Wish me luck!
Hello every one. I don't know whether I have spondylitis or not therefor I came here to ask for your opinion. I'm a 32yo male and started to have eye discomfort (red painful eye-more right eye), and left joint pain (not sure if it was joint) about three moths ago. I went to a doctor about 1 month ago and had X-rays, blood tests, and physical examinations. Doctor told me that I have hla-b27 but I don't have spondylitis because x-rays look normal and my mobility is good. Since, my joint pain has diminished and the pain has spread to my hip and lower or even middle back. It's now 5 in the morning and I can't sleep because of back pain. Now, I am again suspicious about having spondylitis. I want to know if any one thinks I do have spondylitis or not. All suggestions are welcomed. Thanks folks.
Hi Carceeno

From your description it is possible that you might have one of the spondy diseases but it's hard to be clearer. A few points and questions that may help us all get a better grip on what is going on:

1) It's well known that it can take up to 8 - 10 years for damage to show up on X-rays. It would be much better to have MRI's done if possible.

2) What happened to the eye issue? Did you see any doctor about that? Was it just painful and red or was your vision also cloudy? Was bright light painful?

3) Was the doctor you saw a rheumatologist? If not, I would try to get a referral to one. Spondylitis is a tricky disease and sadly many GPs don't understand it well despite the efforts of groups like the SAA.

4) Do you have joint stiffness first thing in the morning that eases off over time as you get up and about?

Sorry that you had to search for us but now that you found us hopefully you are nearer some answers and to getting better treatment.

Warm Regards
1.I'll see if I can get an MRI soon.
2.I'm currently using FML eye drops that an eye specialist prescribed and my eyes are better. My vision was not cloudy but I was and still am sensitive to bright light. I have an appointment with the eye doctor and he is waiting too see if I have any underlying condition.
3.Yes, I saw a rheumatologist.
4.I have stiff neck during the whole day but I think it's worse in the morning. I also have a stiff back in the morning.

Thank you so much for your help.
1.Burning feeling up my spine through out the day
2.Neck stiffness and pain
(Both worse with sitting for a long periods)
3.Hand pain (right hand) when moving thumb and hand.
4.Heel pain when standing
5.Right Hip pain (this is newest on my list) going into my tail.
6.I've had nausea and IBS type symptoms for years. Up until know was passed off as just lactose intolerance.... maybe it is.
Still trying to map out how and when some of these happen.
8.I just know if I'm moving around I usually start feeling better.
9.Oh, don't know if it's related but my jaw pops and my knees click.
10.Think I may be getting psoriasis on my chin. All I know is it's a reoccurring sore of sorts hidden in my beard.
Not got dx of anything yet but for the sake off adding it in here:

1, morning sometimes all day stiffness, very bad in lower back but spreads all the way up sometimes
2, burning pain on occasion middle of back 4-6inch below shoulderblades
3, On bad days terrible aching between shoulder blades
4, morning stiffness and pain in big toe
5, since mass day terrible si pain left side, nightmare going from sitting to standing
6, had tendonitis right elbow for 4 months last year
7, right should has pains deep inside and pops and locks alot
8, very disrupted sleep pattern altho when i wake up during the nights it doesn't feel like pain woke me up, more like discomfort
9, when its bad there's now easing it if getting a break or anything lying down simply aggrivates the small of my back
10, psoriosis
11, did have very tight ribs for a week or so not long ago but don't know whether inflammation alone can cause that or only fusing? X-rays normal
12, strong diclofenac makes me feel like a little kid again sorts all of the above but really upsets stomatch

Thanks for your reply. I am glad to hear you will try and get an MRI and am glad the eye doctor is going to follow up to check if any underlying condition. If you are still around lurking and reading then I suggest you make your own thread introducing yourself and ask for others opinions too. You are likely to get more input that way.

Warm Regards
Stiffness in back, especially in AM
Torn meniscus in right knee, never fixed
Left shoulder pain (snowmobile accident) better after cortisone
Achilles tendonitis- both feet
Plantar fasciitis- both feet
Uveitis in left eye once- eye doctor found HLA B-27
B/L SI joint inflammation
b/l or unilateral hip pain
upper back stiffness at times

scared about getting pregnant and raising a child with AS

27 y/o Female Officially Dx 2011
This is my first post. I have AS and my son does as well. My symptoms:
Hip pain, both sides
Neck pain
Shoulder pain, alternates both sides
Heel pain, both sides
Extreme bowel inflammation, 5 surgeries
Mouth sores
Psoriasis on the scalp, in my ears, fingernails
Iritis, have experienced it in both eyes
Fatigue that is very overwhelming
Rib pain
Pain in my spine, especially directly between shoulder blades
Arms feel like lead, some days it's hard to even hold a hair dryer
Arm pain, something new is extreme pain between wrist and elbow that feels like aching bone
Elbow pain in both
Jaw pain, sometimes its hard to open my mouth to eat
Fingertip pain
Took over 30 yrs for correct diagnosis.
Symptoms started about 10-12 years ago at around age 22 or so
HLA-B27 Positive - April 2011
Positive results of SI Joint on MRI - April 2011
(still not officially diagnosed)

1. Lower back pain
2. Pain in SI joint, mainly on the left but sometimes bilaterally
3. Both knees (new)
4. Shoulder blades (mainly on the right)
5. Sharp heel pains mostly on the right foot
6. Both hands very stiff
7. Swelling pain in both eyes with sensitivity to light and blurred vision that comes and goes
8. IBS... 4-5 days a week / multiple bathroom emergencies each day
9. Rib cage radiating from back to sides (thought it was a kidney stone the first time this happened)
10. Stiff neck
11. Fatigue
12. Brain fog constantly
13. Some form of psoriasis that attacks both hands periodically (been like that since I was a baby and no doctor can explain why)
14. Early signs of degenerative disk disease
15. Kidney stones (very frequent in the past 2 years - last CT scan shows 7-9 stones in each kidney yet latest blood test shows uric acid to be at normal levels)
16. Insomnia
17. Hypertension (may be related to AS?)

Father was diagnosed as having either Ankylosing Spondylitis or Reiters Syndrome in the late 70's or early 80's. They could never agree on exactly what was going on with him because the next year he was diagnosed with Multiple Sclerosis and has recently passed away.
Every possible pain I can imagine from my hips to my groin, lower back, spine, neck, headaches,ribs/chest....sometimes it feels like a rusty dagger is being slid in and out of my left side of my back. I do receive a treatment which helps very much, but have had an insurance lapse and havent had my treatment since October and the pain and swelling has been overwhelming and frustrating...I do work fulltime and have a 2 and half year old to take care of and its frustrating not being able to play with her at times like she wants. I try...but its hard...at least she got me to lie in her pink castle tent to have tea the other day smile Its nice to find this forum because sometimes I think people like my wife and friends just don't truly know the amount of pain I'm in, but I keep pushing, and doing what a man has to do everyday to take care of his family despite the overwheling pain. But it is hard to say the least. Hopefully soon the pain will be gone as I did just recently get added to my wifes insurance and get start receiving my treatment in a few weeks. I know some of you arent as lucky and dont receive treatment and the pain is always there and I pray for you and I know how you feel....
- Knee pain since teen's (put down to growing pains)
- Back pain off and on since early 20's.
- Gradually worsening pain over last 4 years or so (inflammatory
back pain - worse later half of night, improving on mobilising)
- Greatly worsening back pain over last couple of years.
- Morning stiffness
- Plantar Facitis - mainly left foot
- Severe hip pain - trochanta and illiac crest area
- Severe rib and sternum pain
- Sacral illiac joint pain
- Pain/aching between shoulders
- Joint pain
- Cracking of joints. Especially right knee, but more recently
back, hips, elbows and wrists.
- Swelling joints. Mainly right knee, right ankle and fingers.
Although other joint too occasionally.
- Fatigue
- Excruciating pain when pressure applied to hips, ribs, SIJ,
shoulders, upper back, sternum, elbows etc
- Insomnia, mainly due to pain
- HLA-B27 negative
- MRI normal
- ESR and CRP normal
- Colon polys removed (regular follow up needed)
- low grade pyrexia

(Family history)
- Great Grandmother had spondylitis (although I never met her -
cervical spine deformity)
- Uncle has spondylitis and OA
- Grandfather has collitis
- Mother has psoriasis and collitis
Eye inflammation and Iritis
Still in the morning
Extreme Fatigue
Flu like symptoms
Breathing and heart issues
Stabbing rib and neck pain
Large purple bumb over first rib joint
Pain, pain, pain
I think every joint has ached at some point in time. Here is my list:

SI Joint pain and stiffness
SI Joint visible swelling
Full back morning stiffness
Toes feel broken in the morning
Hands stiff in the morning
Shoulder pain
Trochanteric bursitis, bilateral
Hip joint pain
Major Enthesitis
Bilateral elbow Enthesitis (very painful)
Heel pain, bilateral
Plantar fasciitis
Severe neck pain and stiffness than comes and goes
Enlarged middle joints in both hands
Carpal tunnel
Hiatal hernia
Rosacea and tendency towards rashes
Flu like feeling
Dry eyes
Major weight loss during disease onset
Laryngitis 3-4 x per year caused by inflammation of joint in voice box
Jaw pain
Easy bruising

This is a list of symptoms I have now or have had in the past. Thankfully, I don't have all symptoms all of the time smile
Still fighting a broken toe.
Soreness on the pads of my feet
Achy fingers
Dull Headache
I find myself slumping over my keyboard
I was able for almost 20 years to put up with the stiffness and pain...had some flaring times more difficult...but able to teach in the inner city and loved it! I think taking darvocette off the market was one of the starts to the downfall...I have never been the same since this drug has been gone. It was enough to take the edge off without making me too drowsy.
Recently I have had bouts of small bowel obstructions they believe from my nsaid. I also reported from my wife drop things, have severe memory issues, been having severe anxiety symptoms...My right knee is down to only cartlidge. I recently was hospitalized for severe pain-- they said was a groin tear-- I dont remember doing anything...but I was screaming, could not walk and my wife said my testicles were purple-- so she made me go to the hospital afraid they had twisted. Tests never showed what was really wrong but with everything else I assume something with AS-- they had recently put me on cymbalta which was not helping my pain.
I have cental and obstructive sleep apnea and they do not know the reason for my central apnea...
i just get my knee inflamated, with no pain.
My husband has the following symptoms:

1) Rib pain (breathing, coughing, etc)
2) pain in lower back (pain goes thru buttocks).
3) Neck pain daily.
4) Shoulder pain daily.
5) Hip pain (usually one or the other, or both)
7) Heel pain (some days yes, some days no)
8) Inflamation of eyes (uvitis)
9) Pain in lower back and hips
10)Pain in achilles tendon
--terrible AM stiffness and pain
--swollen hands and fingers , reddened joints
--weakness in hands, can't open a water bottle or hold onto anything...drop things CONSTANTLY
--bad memory issues
--shoulder pain - joints need to be replaced immediately.
--elbow (left-dominant hand) also is shot but they say they will not replace that joint at my "young" age...just want to clean it up with surgery
--spinal fusions on at least 9 levels.
--facets are pinching off nerve space in spine ...creating numb legs and arms
--feet have bunions...had one surgery for that already
--hips have been replaced so are stiff and still painful
--weight gain due to steroids.
--cough very frequent
--shortness of breath
--I have sleep apnea also- very severely...due to steroid myopathy..steroids have weakened the muscles in my palate and throat. Also causes swallowing/choking issues if I'm not careful.
--redness around my eyes - I don't know if this is iritis or not...I' had terrible -sort of like vertigo with the room spinning only it spun horizontally and not vertically. And then came double vision and blurriness...Does anyone know if this could be from PsA?? It has since resolved. although my eyes are still red -rimmed
--very limited mobility in my neck from side to side and up and down.
--telescoping fingers...my middle finger is the same length as my pinkie now. All fingers are same length.
--very deformed hands...every joint in hands has been affected.
--I have symmetrical arthritis...each side mirrors the other.
--knees are beginning to be quite painful...no doubt they will need replacing following my shoulders.
--wrists too are bad.
--oh and I almost forgot to mention the worst of all: SEVERE CONSTANT BACK PAIN...the entire length of my spine.
Hi im newv here have a bunch of simptoms and ig somene could help me to say if they have it cause dr say they couldnt be from AS???

2.pain in muscles lika a flu all the time
4.dizzy strange one not like things are turning strange dizzy felling awful it is
5. pain in stomach ,diarhea
6.low grade fever for 8 years now
7.my hands shake and pain in wrists feels like a i cant do anythibg withe them an also that feelinbg in legs
8.itching of the leg
9.pain in neck thorac spine and lumbal spine, shoulders...
10.sweating: night sweats and day ones
11.pain in my arms and legs like sharp knife something
12.heaviness and pain in my chest shortness of breath

well im 30 years and feel like 90 its awfull to live this way especialls nit to know how can or is this all from AS?

hla b27 poz
no fusion and MR normal
taking corticisteroids Medrol

Petra, the strange dizzy feeling is it kinda like your body is vibrating? And I have the same thing with my hands, wrists and legs. My doc has never told me what it could be, but it's getting worse and I hate it. So many things are symptoms of AS it's hard to figure it all out, but so many of your symptoms sound just like mine. I'm 33 and I feel like a little old lady all the time.
My symptoms all started with the following:

1. Rotator cuff impingement
2. Tennis elbow
3. Uveitis
4. Extreme fatigue
5. Lower back and stiffness
6. Sore arches and achilles tendon
Any thoughts? I suspect I have AS.

Female 28 HLA-B27+ Chronic Muscle Spasms, Chronic Back Ache & Neck Ache, Chronic Neurological Issues Throughout: Pins, Needles, Burning, Tingling, Partial Numbnes etc. (Positive EMGs) Back pain very bad (much much worse) during the night, ribcage hurts cannot sleep even with Percocet 5-325, 10 x 2 = 20 mg Cyclobenzaprine, 10mg Zolpidem Tartrate.

Bone Scan & X Rays: Stable nonspecific bilateral iliac SI joint Subchondral Sclerosis, Mild uptake within the pubic symphysis identified, suggestive of Osteitis Pubis, There may be mild osteitis condensans ilii but sacroiliac joint does not appear eroded.

"No abnormal Spinal Uptake"

MRI: Cervical Spine - Straightening of the normal cervical Lordosis. C5-C6 very mild left uncinate spurring and neural foramina encroachment.

MRI: Lumbar Spine - Decreased T2 signal disc desiccation/degeneration L4-L5. Also small endplate invaginations/Schmorl's nodes noted including inferior endpalte T11, superior endplate L2, superior endplate L3, inferior endplate L4. L4 and L5, in addition some disc desiccation/degeneration there is perhaps very subtle posterior bulge and perhaps subtle/early left facet hypertrophy No significant central canal stenos. No foramina encroachment.

MRI: Thoracic Spine - Localizer images demonstrate a minimal dextroscoloitic curvature in the mid thoracic region. There is minimal T3-T4 and T6 through T9 disc space narrowing. There are minimal Schmorl's nodes along the T7-T8 and T8-T9 endplates as well as the T11 inferior endplate. There is minimal decrease in the T7-T9 disc space signal characteristics as well as T4-T4.

Family History:

1 BROTHER: HLA-B27+ Chronic Back Pain, Worse at night.
1 BROTHER: Unknown Status
Not sure what is AS and what is fibromyalgia, but here goes:
~HLA-B27 +
~Spine pain, top to bottom
~Spinal stiffness
~Spinal tenderness
~Lymph nodes swollen and tender all over
~skin tenderness
~heavy feeling in elbows and knees
~hot elbows and knees, like a sunburn or bee sting
~heartburn daily
~flu like feeling all the time, from mild to severe, but constant
~low grade fever-everyday (used to be occasional but I have now had it for 4 months and counting)
~Rib pain (mainly in left lower ribs)
~Sternum pain
~joint pain in first finger joints and toes (symmetrical)
~Stiffness from head to toe
~Burning, hot pain in shoulders and thoracic area
~red, dry eyes
~thirst and dry mouth
~Occasional heel pain
~puffy legs and feet, hands and fingers
~difficulty sitting for extended periods especially on hard surfaces-extreme pain when I get up from sitting position (feels like my tailbone is falling out)
~grabbing pain (makes me lose my breath) when leaning forward
~chronic cough and frequent sore throat

I think I probably could list more but for the moment that is the gist of it.
I am newly diagnosed so I can't be sure these are all related but here is my list -

RANDOM JOINT/BODY PAINS - sharp, random pains lasting from seconds to a few minutes all over body
LIVER LESION - seen on MRI for gallbladder evaluation, diagnosed as a benign spot, shown to have gotten smaller of follow up CT scan.
FOOT PAIN - mostly at end of the day, begins after sitting down then standing up again
DRY EYES - inflammation/dryness of eyes - no known reason, not cleared up by antibiotics/allergy drops. Got better on it's own after 1.5 months
LINGERING PAIN - when I hurt a joint and elbow; pains in those areas lingered on for several months
FACIAL RASH - on left side of face only
Have not yet been diagnosed with Spondylitis but will mention to dr tomorrow
1.)SI Joint Dysfunction (had to take disability as a Letter Carrier from)
2.)Extreme Rib Pain (multiple diagnosis of costochondritis)
3.)2 Sesmoid bones fractured (1 totally dissintegrated)
4.) Extreme neck stiffness and pain on rt side
5.) 2 black toenails from fungus
6.) Itchy ears
7.) Itchy anus
8.) psoriasis on scalp and elbow which I never had before
9.) Mouth sores
10.) Chronic dry eye with ulcers
11.) Currently blurred vision in lower part of eye, (both eyes but at different times)
12.) Toe pain
13.) Arthritis in fingers which 3 dr.'s have said looks like rheumatoid, but 3 negative tests
14.) Itchy scalp (feels creepy crawly)
15.) Pain in ears on and off
16.) Diagnosed with yeast infection in esophogus
17.) Pain when urinating on and off
18.) Headaches in odd places of scalp...sometimes feels like an icepick
19.) Throat swells on and off
20.) Ribs actually spasmed one night pulling my muscles under the bottom ribs
21.) Back spasmed arching my back to the point of pain (twice)
22.) Toe Pain
23.) Sometimes ankle pain
24.) Skin doesn't heal well
25.) Constant fasciculations in both calves (I feel like a constant electrical box, can actually see each muscle twitching) drs say not related to ANYTHING
26.) Myoclonus (in neck, shoulders, and hips)...legs will actually jerk upward to ceiling both at same time when lying on back...drs say not related to ANYTHING
27.) 2 Torn rotator cuffs
28.) Recurring sinus infections (which I never used to get...they say allergies????)
29.) Red or darkened skin discoloration around eyes, on forehead and bridge of nose (feel like a racoon)
30.) Hip occasionally goes out when walking (when this occurs, it continually happens)

Anyway, the skin problems dermatologist says: psoriasis, or exscema, redness: dermatologist says sun damage

Infectious Disease Specialist said she was 99% sure I had Scleroderma and did specific test=negative for Scleroderma and sent me to Rheumatologist

Rheumatologist asked me list of questions without giving me time to talk....if I didn't give a yes or no answer, he interrupted me and went on to next question...Dx=Fibromyalgia because of trigger points

I see family physician AGAIN tomorrow, because going to bring up chest pain so excruciating I can't sleep...ribs hurt soooo bad to lay down, and feel like I can't get air, but oxygen levels always normal

Wish me luck!
wow, i have been enlightened.
This is the symptoms I have (and my dr reasoning...he says nothing is related to AS)

Low back n hip pain (over weight)
terrible foot n heel pain (need to stretch)
bone spurs on both feet (from weight and bad shoes)
feeling of 'pop rock candy' in muscles of low back n legs (restless leg syndrome)
shoulder immobility in AM (slept wrong)
floaters n dry eyes (contacts)
fatigue (be more active)
terrible cramps when had periods (age)

MRI and HLA-B27 were positive, lucky a rhuem has me on Enbrel...but waiting for meds to be approved...again
Well, my Family Physician agreed....possibly Psoriatic arthritis or AS. She's ordered blood work, and scheduled an appt with a rheumy. I'm hoping he's better than the last one I saw. She also ordered xrays (had 15 of them...neck, ribs, and shoulder) She's going to let the rheumy order MRI of SI joint if he feels it's needed. Also, having a pulmonary function test, cuz when my chest "squeezes" me or chest pain (rib pain) is bad, I feel like I can't get air...but my O2 levels are always normal. Maybe we're on the rt track, finally. Again, wish me luck in, at least, finding out "why" all the symptoms.
The "pop rock candy" in muscles....can you see the muscles twitching?
I'm a new member here. I am a military dentist and have been recently diagnosed with AS. As you may guess, dentistry is murder on my back and I am trying to change career fields out of necessity. My AS was diagnosed because I was trying to figure out why my SI joints always became inflamed after prolonged running. Anyone else have this happen? As far as my job, I have to lean over people all day, so far I have been unable to find a way to do dentistry with completely perfect posture. After a few hours of this, my back will start to get fatigued and ache. As I keep working, the aching changes to a burning sensation and gets really bad. Has anybody else had a job that required bending over or looking down experienced the same thing?
As I've found, the SI Joint is commonly involved. I was a letter carrier, and walked with weight of the bag, for 6 hours each day. I ended up having to take a disability retirement on the advice of my physician, due to SI Joint Dysfunction. And it was I, who mentioned to my physician, the other day, after YEARS of suffering, if I could have either Psoriatic Arthritis or AS. For years, I've been repeatedly diagnosed with costochondritis, which is another syndrome of AS and Psoriatic Arthritis. What did help my SI Joint, though for a year, and I could have it done again, now that I'm experiencing a lot of pain again, is a Radio Frequency Ablation. This was done at Advanced Pain Management. They heat up the nerve to reduce pain. I couldn't believe how it helped. They initially gave me injections, but they only mildly helped.
Hi all - new here and newly diagnosed (F, age 27)! When I was in diagnosis-limobland I found this thread really helpful, so here is my contribution:

Teenage years:
Knee pain and swelling
Shoulder blade/upper back pain (thoracic spine now fused)

Early 20's
Neck pain & upper back stiffness
Tailbone pain
Alternating buttock/SI pain
Flares 1-2 times a year

Late 20's
Extreme upper back stiffness
Worsening SI pain
Hip pain
Heel pain
Flares became more frequent, intense, and lasted longer

Upper spine: fused
SI: beginning to show deterioration
Lower spine & hips: 'normal'

elevated ESR, normal CRP, HLA-B27+
bone pain
sever neck pain
shoulder left
knee left
rls real bad
had tarsal tunnel surgery on left foot
have sever pain in left ankle and some in right in the mornings
sore tongue
deformed fingers
surgery on both wrist for carpal tunnel
had svt heart beats up to 260 bmp but had a procedure where they went up in both goins with a wire and burned tissue to stop this. Dont know if this is related to AS.
get a numbness across the middle of back
cant sleep
fatigue real bad
right now having a problem with left eye.
slump bad
left hip pain
That covers most of it could be more. mornings are my worst. crazy

I'm sorry you're having such a difficult time. I would definitely find another rheumatologist for a second opinion. It's so easy for drs. to just talk over the patient & dismiss things. Hang in there smile
My symptoms, looking back, started in my teens. I am 45, female, and I was recently diagnosed with AS on 4/24/12. God Bless my Rheumatologist.

Mid to Late Teens
Low back pain
Left knee pain

Twenties to Mid Thirties
Increasing lower back pain that would refer to the legs
Mid level back pain
Slight neck pain
Slight shoulder tension
Knee pain

Debilitating lower back pain that is now also located mid and upper back
Buttock pain
Knee pain (Total knee replacement 2010)
Hip and groin pain that refers down the leg and sometimes prevents me from walking.
Neck pain that has caused a marked decrease in movement, left and right, up and down, ear to shoulder, etc., and I no longer can read or work puzzles (two favorites of mine).
Shoulder pain and tenderness
Heel pain (plantar fasciitis)
Knee pain in the left knee and behind both knees
Difficulty sleeping because of pain, especially in the hips and lower back
Flu like symptoms
Easily become ill now with colds, viruses, etc.
Trouble breathing and shortness of breath
Pain at the top of the rib cage
Rapid heart rate
Jaw pain
Ear pain along with ringing in the right ear
Dry eyes, floaters and Iritis

Brandi smile
I'm not sure if I have Spondylitis but I do have the genetic marker and my Rheumatoligist is asking me to track how I feel.

I have had the following symptoms:

-A lot of crepitus overall
-Soreness in low back, rib area, neck and upper back
-Soreness and crepitus in left hip
-Trigger points in low and upper back that won't release

I was diagnosed with fibromyalgia in 2009 and have had a lot of myofascial pain (trigger points) that has been resistant to massage, physical therapy, and chriopractic.

I have the genetic marker HL-AB27

I thought my problem was the extreme stress I have been under this year (death of mother, moving, looking for a job), but nothing seems to help. The rib pain is definitely unusual.

I also suspect I'm close to menopause and notice a lot of soreness before my periods.
I was initially diagnosed with fibromyalgia nearly 10 years ago. My symptoms early on were fatigue, nearly all the FM tender points, and pain in the hips and "not the butt and not the back" which I now know to be SI pain.

I've had a proper diagnosis for about a year and a half now, and my symptoms are SI pain, pain in the upper thoracic spine, random swelling and pain in knees, wrists, ankles, and knuckles. I had a sed rate of 55 recently, but had a UTI a few weeks prior to the labs, so not quite sure of the significance. So far I have been blessed to have missed any eye, bowel, or genitourinary inflammation.

I was diagnosed based on inflammatory back pain, positive response to both a steroid shot and a few dosepacks, and sclerosis on my left SI visible on xray. I think it also helped when I thought to mention my brother's Crohn's diagnosis. I'm currently on Indomethacin, Skelaxin, and I took my first injection of Humira last week, after a nine-ish month stint on Enbrel, both with and without methotrexate.

I believe my experience has been rather mild thus far, but I am only 31 and I worry about my ability to work to retirement age. Time will tell, I suppose.

I am relieved to know there are people out there that understand, but I am also sorry there are people that understand.
Yes sir . I was a automotive car painter . I had to move into the office .and I still paint and work In the shop from time to time and I rember real quick why I can't do what I did in my younger years . I do it any way just seems I pay for it in the middle of the nite .
Hi i am new to this and hoping for some opinions. I found this thread because my eye specialist keeps mentioning A.S and HLA-B27 to me. Well i guess i should share some the things i have noticed going on with my body.

- When i was 12 i was diagnosed with Uvitis in my right eye. It was not taken care of properly now at 23 I have very sever Uvitis that will not go away. I have been on eyedrops for 7 months now, the swelling keeps coming back. I also have developed a cataract and am nearly blind in that eye. Now i see my eye doc a couple times a month, its so bad im on a first name basis with his office staff.

- about 3 years ago i noticed a drastic decrease in energy all i wanted to do is sleep. I had always been very active and full of energy, this was weird but i thought i was just over worked.

- i also noticed sever pain in my tail bone when i sit for too long, i just bypassed it as sitting for two long and it was normal.

- about two years ago i started getting very sore hips and knees, i thought i was walking for too long, but even when i was took time off it didn't go away completely.

- about a year ago my left knee swelled up while i was sitting in class. It stayed swollen for two days and it was excruciating to walk on, and woke me up at night. I didn't go to the doc because i thought i was being crazy and i probably hurt it without knowing it.

- In the past two years i have dealt with on and off again knee pain, hip pain, back pain and eye problems. It seems like my pains jump from one place to the other and are rarely all bothering me at once. I have also had a swollen lymph node in my right hip that doesn't really go away. All my pains seem to be mainly on my right side.

- more recently my right wrist has been hurting. It comes and goes along with the other joint problems. Im still exhausted all the time, i have to nap during the day. I wake up and the bottoms of my feet hurt so bad, and i feel sore and sick for about 30 min to an hour. My hands swell in heat and over use. I went from having nearly no headaches to having a headache a day almost. I feel better when i get up and move around but if i stand or walk for too long, i get really sore.

My eye doc told me to go to a doctor and have several blood tests, xrays exct. run . When i went i told her about some of the pains and aches i felt along with my eye issues, she told me i was too young to have these problems but she ran some of the tests on me. It came back that my ANA was low positive. So she ran it again with a lupus test and the ANA was still the same but i was negative for lupus. She also ran a RA test which came back negative and few others like lyme desease which also came back negative. So she told me i was fine and it was just some inflammatory issue and she would see me in a year. ( that made me feel comfortable let me tell you )
Well when going over the results with my eye doc we found she never ran the HLA-B27 blood test on, or about half the tests he had requested. But he never really prompted me to see a doc again.

Now my question is are my symptoms something to worry about, and where do i begin this process. I have never had a general doctor because i have always been very healthy, so who would i go to.

I am a 49 year old male Diagnosed with Undifferentiated Spondyloarthropathy in 1998.

Everything seems to have started in 1998. I believe it was triggered shortly after a series of pre-deployment shots within a relatively short period of time, (Anthrax, HEP series, Typhoid, Yellow Fever, Japanese Encphalitis, etc).

1. Acute Anterior Uveitis/Iritis. (Alternating bilaterally for first 3 months)
2. HLA-B27+
3. Have had low to mild lower back, neck, and shoulder pain for as long as I can remember. (Used to think all of it was stres, now not so sure of that)
4. Aunt was HLA-B27+ and diagnosed with Reiter's Syndrome.

I have had occasional flare up's of Uveitis/Iritis every couple of years, predominatly in the left eye, but haven't had one since New Year's Eve 2002.

2006: After returning from being deployed to the Gulf, went through several weeks of vomiting every night at the same time for no apparant reason.

Over the last two years the symptoms seem to be evolving.

2009: Constant diarrhea for over a week combined with abdominal pain that lasted several months and then subsided. Some elevated labs, but CT and Ultrasound both normal.

2011: Extreme and constant fatigue (felt like I had the flu). Fever, numbness/tingling in the hands/feet/left elbow. Burning joint pain/weakness in both hands, mostly in the knuckles of the first two digits of left hand, lower back stiffness, neck shoulder pain. Sensitivity to heat/being out in the sun. Mild Vertigo. Feet constantly sore (felt like I had been walking around Disneyland for two days straight). X-Rays of the hand were normal as well as all of the other lab tests). One consideration was possible MS.

Most symptoms have subsided with the exception of the numbness/tingling of the lower legs/feet. All of the tests have come back pretty much normal. Current Rheumatologist says she doesn't see anything significant, but usually by the time I am able to get in most symptoms have subsided. Lately I have had problems sleeping and have had a constant burning pain in my shoulders and neck for the last few days. Seems like my symptoms keep evolving as time goes on, but doctors don't seem to have any definitive answers.

Still looking for answers.
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 07/06/12 02:27 AM
come on over to the main forum, delano. folks don't always check the symptoms page. so many of your symptoms fit the AS, not even undif, either. full on AS. however, your serving overseas and likely having received all those vaccines can complicate your picture. (what is interesting is, i just typed in that line, without having read completely your description of your vaccine regimen. i have read so much about the effects of these vaccines, and not a good thing).

the vomiting is not usually part of this dx, and may confuse your docs. the diarrhea is definitely a possible IBD, inflammatory bowel disease, like crohns or colitis. many of us have the IBD. you sound like you need a colonoscopy if you haven't had one.

the iritis/uveitis is a direct hit for AS, and totally completes your picture.

are you on any meds? anything help? as i said, come on over to the main forum and continue the discussion.

glad you are here, we need all the stories we can get. then folks who come here see themselves in one part or another and we help each other.

prayers and peace, sequoia
Thanks! I will repost on the main board. I have been monitoring the sysmptoms for several years. It has helped me to see what others are going through and hopefully by sharing my experiences and frusttrations someone else will benefit as well. smile

For the quick answers your your questions: Not on any meds. Was told to take Ibuprofin/Aleve/Motrin is needed. For the most part, seems to work most of the time, but only temporary. Pretty sure the vomiting was due to something else from being deployed to Kuwait. I personally feel that everything was triggered by the Anthrax shots. Over the course of 27 years, I have had all of the other shots without any issues. Maybe the Antrax, or all of those shots so close together.

In my late teens it was wrist pain and back pain -I had surgery on both wrists for something similar to carpal tunnel. It didn't fix the pain.

I have had Iritis twice, once in each eye consecutive years. I was tested for Lupus and nothing turned up. I keep thinking of the first time I met a rheumatologist and he found something (the B27) but told me it was nothing.

2 years later my dad shares with me his struggle with this disorder. Gave me pamphlets and I thought nothing of it (I found them recently after having a doctor suggest my symptoms indicated ankylosing spond).

Another 2 years and my hip pain is increasing in frequency and severity -both hips, now primarily in the left hip. My wrist pain also flairs up when my hip is flaring. Pain is in my back now and neck as well. Sharp pain, constant. And it moves up and down it. Sometimes it makes me stop before I can keep moving due to pain.
Hip pain .its not the same hip it jumps around .shoulder pain ,knees swelling , neck pain and stiffness ( new) ankle tendons ( all) ,back pain and stiffness all the time ,pain in my chest in the bone , and pain rite in side my bones mostley my legs ake like crazy almost to the point that I almost cry . Pain seems to pop up in new places all the time .Sorry if this is not what your looking for .

*Deep pain in buttox ("sit bone")
*Hips feel like they are in a vise grip by late afternoon
*numbness elbow to pinky finger
*heel pain
*Some excersize helps but is difficult to do
*Trouble sleeping
*feeling of wanting to slouch all the time
*brain fog comes and goes
*pain radiates down back of leg from buttox
Where to start????
Looseness in joints from birth
Hip pain from age 5
stiffness in neck from age 17
rupturing tendons
plantar and palmar facsiitis
swelling in hips
pain and numbness in lower back down to feet
extremely dry eyes, mouth and skin
scar tissue in uterus
prolapsed uterus
hysterectomy due to uterus detaching
ovarian cyst
asthma and frequent bouts of pneumonia
Kidney failure, left kidney did not survive
Posted By: Melissaj Newly diagnosed with AS - 07/17/12 12:50 AM
I am a 49 year old female. I have suffered with serious back and hip pain for over 20 years. Five years ago I had a total rupture of the disc at L5/S1 level that went undiagnosed for about 8 months. When I finally saw my surgeon, he ordered a specific mri to that level, (three other mri's and 2 nerve conduction studies were normal) and that's how it was detected. Despite months of intense pain, drop foot and numbness. The numbness is still with me. The nerve had stayed compressed too long. Six months after my first surgery, I fell on some ice and pain from that persisted. Mri showed 2 pieces of bone touching some nerves. Had my 2nd back surgery. For years prior to surgery, I always had lower back pain and serious left hip pain. My surgeon said the hip pain was referred from my spine. When recovering from the second surgery, my hip and groin pain worsened. Also had alot of si joint pain, which I have had for years. Lower back pain was always there, varying in intensity. Surgeon proposed a two level lumbar fusion. He also ordered a discogram which was positive at the two levels in question. With this result and continuing pain, I went ahead with the fusion. Very difficult recovery in it's own right, but since fusion (it's been three years now) my left hip almost immediately started hurting constantly along with constant groin pain. Si joints have always been bad, but never like this. Has also gotten worse since fusion. With the hip/groin pain becoming intolerable, my surgeon said "maybe you do have a true hip injury" and sent me to a hip specialist in his group. This Dr recommended PT, which I kind of knew was not going to help and to return in 6 wks...after six wks of PT and no improvement, he ordered a arthrogram of the hip. Not a fun test, but during the procedure, unknown to me and the radiologist, he had mistakenly nicked the femoral nerve with numbing agent. Not knowing, I went to get off the table for the mri, and I had no control of my leg and fell directly on my knees and then forward to my shoulders. They said this had never happened during this kind of procedure. After 4 hrs in the er, at the same hospital, my knees were bandaged xrayed and I was sent home. When I followed up with my hip specialist he told me they had used too much dye during the procedure and it was difficult to read. But, otherwise he saw no injuries in the hip. For months after the fall, my left knee and right shoulder hurt almost constantly. Along with my hips/spine/groin and lower back pain. Turns out I needed surgery to repair ligament damage in my knee and my shoulder had an arthritic fracture....a fracture that my surgeon said was very rare. Had only seen one other fracture like this in a shoulder....in his words "and I've repaired alot of shoulders". My shoulder surgery was exceedingly painful, but after a long healing time, it really doesn't bother me too much anymore. My knee (knees) are a different story. Surgery was over a year ago and it hurts more than before surgery. Constant throbbing and swelling, daily. Another specialist I saw, in yet another attempt to fix my hip/groin and SI joint pain, sent me for a myelogram. This test revealed bilat sacroillitis and he was the first one to suggest AS and sent me to a rheumatologist. This Dr said that before he started me on serious meds for AS, he wanted to do another mri of the si joints. This test was negative. I was also neg for the HLA-B27 and he wanted to diagnose me with fibromyalgia. I know this is a true disease, but I know I don't have fibromyalgia. Given my long history of lower back/hip/groin and the myelogram that did show bilat sacroillitis, along with other symptoms that are very common in a person with AS, my pcp made the formal diagnosis of AS. He started me on sulfasalazine 2 months ago and so far this has only helped the pain in my ankles and feet. No change in pain anywhere else. Four months ago, I started having mid back pain. Just dull, aching and sometimes clenching and grabbing. I have never had this kind of pain before. I can no longer stand for longer than 20-30 minutes the back and hip pain becomes so intense. I never sleep more than 2 hours at a time. I can't sit too long. Mornings are awful I can't believe it's gotten this bad. I can only manage to go for quick trips to the store and it causes such pain that it takes the rest of the day in pain. I am on a loa from my job. Have no idea when I can return. No social life anymore. I can relate so much to others that have written on this forum. I am miserable. How long can a person go on with this kind of pain and so little sleep?? This history that I've written is actually very abbreviated. I have had no end of tests, surgeries and pain. Now, I think I do have AS, and I have to start with a new complex diagnosis?? Just looking for advice from anyone.
Thank you,

Inflamation of eyes, particularly in the am
Feel like I have the flu for 1-2 hours after waking in the morning..the more I sleep, the worse I feel
3 disks in the lowere back in the process of fusing
lesions on my pelvis
lost two inches in height in the past 5-10 years due to spinal curvature and deterioation
severe pian and numbness in lower back and hips
pain and inflamation in elbose, knees, neck
continual pain in right achilles tendon
significant asymetrical hearing loss in both ears
increased "burning" pain and numbness in lower back and hips with prolonged walking or standing
Neuroligical symptoms such as memory loss and dyslexia
Fatigue..require more rest
does any one have pain in neck but in nthe front nof neck and sides of the neck like someone is pressing you and choking you all the time i can move my neck and all but this pain is everday doctor give me anti analgetic but nothing helps???
Psoriasis scalp
Eye dryness/pain
Jaw pain
Adult acne occasional
Sensitive teeth to cold/heat/hard foods
Mouth sores
Neck pain
Left and right shoulder pain with calcium deposits
Occasional mud back and left side pain
Swollen tonsil chronic
Bilateral,horrible, hip pain that goes all the way around hip but,bursars can't touch or I cry
Butt pain sciatica
Left leg pain -sciatica behind knee keeps me from sleeping
Left knee pain and weakness
Bilateral back of heel pain-horrible!!
Occasion hand weakness/stiffness
Irregular periods
Ganglion cysts in wrist/heels
Can't sleep due to pain
Clostraphinic now???
Forgot the butt cheeks both sides
Tailbone can't touch. Think bursitis there?
Upper back, as well as, both shoulders and the neck
Vision loss
Memory loss
Retaining current conversation info not so easy
Lower back is an ouchy!
Agitated much easier-lower tolerance
Hi. I'm new here. Frustration has sent me searching the internet for an answer to my latest symptom which was diagnosed today as Indocyclitis. Inflammation of my right eye. (especially in the morning) The eye Dr. kept asking me if I had arthritis or auto-immune disease, my response was no. I had always suffered from back problems even as a young nursing student. (It runs in my family) When I was 40 years old (14) years ago, I was hurt at work and herniated two disks in my lower back. Since then, I have suffered, been to doctor after doctor after doctor for help, relief, some sort of answer. At one point, Last year, I had another MRI and on the diagnosis was written "Spondylitis". I was sent to an Orthopedic who once again poohed poohed my symptoms and told me to get an injection of cortizone in my back. Which I did. It helped for a while but the pain can strike randomly from doing nothing at all but getting up in the morning. Nothing about Spondylitis was ever mentioned again. I have pain in my hips and my groin all the time. Stiffness in the a.m. to where I've had to be helped out of bed. And I've just learned to live with the pain, I guess. I take a lot of aspirin because that seems to help me the most (over tylenol or ibuprophen) but that led to stomach ulcers. I keep having recurring bladder infections also. With this latest diagnosis, I have to ask if I was diagnosed by one Doctor with Spondylitis, why hasn't any of the other doctors taken that seriously? What I have with my eye now is indicitive of this disease and the more I have read on your message boards, not uncommon. How do I go to my Doctor and Ask for help? I'm so afraid they are going to view me as a "Drug" seeker because unfortunately so many people have abused the system looking for Narcotic pain medication. I have not. I have tried PT, injections, exercises.. with little results. I just want answers and some relief. I am only 54 years old and there are days I feel like 90. Not to nice to share, but if I try and wipe myself and turn a certain way, I have horrific pain in my rib cage. I'm just tired of living in pain and I can't seem to be taken seriously. Which is very very frustrating. My family see's what I go through on a daily basis, even my primary care physician can see it. But they send me to specialists who don't seem to see anything wrong with me. It's almost like if they can't operate, they are not interested in me. They do see degenerating disks, spinal stenosis, and herniated disks, but again, the remedies thus far that I have been given for those things is not really helping.. I would appreciate any suggestions. Thanks for listening.
Posted By: Ktz1957 Re: Newly diagnosed with AS - 08/17/12 06:22 PM
Wow, I'm SO sorry that you are in SO MUCH PAIN.. i DON'T KNOW WHAT IS wrong with my key board right now aS IT seemS TO BE TYPING CAP's when I
Nerve pain from left buttock, thigh, shin, calf, to feet – acute/sporadic.
Limited ROM in neck, shoulders, chest, spine, hip - so...
Unable to get in perfect alignment, i.e. lie flat on floor
unable to breathe deeply
All yoga poses are a challenge, can't handstand (yet)
Sacroiliac joints fused
Some vertebra fused
Colitis, Ulcerative (Ugh!)
Difficulty getting to sleep due to pain.
Fatigue in afternoon/evening
Hi ktz1957, First, sorry to hear of your pain and If you were diagnosed with Spondylitis, then you have an auto-immune disease and you need to be seen by a Rheumatologist too. Download the Rheumatologist referral list from this website. http://www.spondylitis.org/patient_resources/medteam_rheumy.aspx?PgSrch=referral
They can set you up with the right treatment plan including meds indicated for AS. Unfortunately, not all docs are well versed in AS. Sometimes, I've talked to others that got the right diagnosis path from their eye doc. yes, it's frustrating. You are not alone. hang in there.
Here we go:

#1 Lower back pain (feels like someone has 10 tons of pressure pushing in)
*Hip pain bilat and single at times (feels like someone has a hold of the top of my hips trying to pull them out)
* Pain running up my spine from lower back
*Neck pain
*Shoulder pain
*Upper leg pain
*Head aches
* of and on rash (mostly itchy-not scaly)
*Abdonminal cramps
*very Dry eyes and mouth upon waking
Wow. Really all of them? Here u go....

Since 1999: low back pain
hip pain
Wrist pain
Neck pain
Night sweats
Since 2009
More night sweats
LOTS OF SWELLING- hands, feet, calves at first, now all over including arms, and neck, face, thighs, upper arms, forearms
wide spread muscle pain
Increased back pain, hurts to sit or stand for more than 10 mins
PAIN EVERYWHERE ... no other way to emphasize that part sorry!
heart seems to try to pound out of mu chest
Redness of skin, and or rash all over
Extreme fatigue
Feel like my body is full of lead in the morning sometimes all day... then beat with a baseball bat!!
Personality change has come along with the pain, I have No patience. I'm cranky. I'm tired. I'm so freaking tired.
Swollen eyes sometimes all day!

I feel for everyone that has this. Its so hard. I just keep trying.
Wow sounds like youare describing my daily life. My fibro was dx 9 months ago, my AS 2 months ago. My rhuemy is sent from heaven and had my dx on second visit. I have had symptoms since is was 16- 1999. I have been through so many tests in the past year I am surprised I have any hood left after all they have taken! Tested positive for HLA-B27 and very high SED RATE Westergren blood test. (Basically means super high inflammation in my whole body) I am swollen every day. Started enbrel last week I am hoping for some relief from the swelling and pain! I hope you get into a good rhuemy SOON!
Here goes. I was diagnosed 2 years ago.

1.right jaw aches most of time and with flareups it's really difficult w/deep pain. to check with TMJ specialist to see if all AS or if they can help any, as I grind teeth when under stress and sleep
2. sternum hurts most of time and ribs connected to sternum. sternum area feels like it burns and sizzles and feels like I was punched repeatedly. with flare-ups it is much more prominent in that area
3. ribs in general heavily impacted
4. spine - cervical, lumbar, thoracic (my T3-5narrowed) hurt but varies sometimes cervical and thoracic, sometimes lumbar more prominent, other times they all go gangbusters and pain is deep aches, burning type pain, feels like when you scrape your knee really good on cement with deep ache, cool, hot, burning feeling sort of like a sunburn rolled up in the mix, and random shooting pains.
5. right shoulder hurts and really prominent with flare ups but left one not as bad
6. elbows, knees, hips, wrists, fingers ankles inflame - tight, ache, feel hot
7. at times the heels of feet, toe joints hurt with or without big flare ups
8. bottom of feet feel prickly, numb but not all the time. shooting pains on bottom of feet sometimes.
9. Have always suffered from migraines and headaches in general and both are getting worse
10. when joints hurt more when I'm having flareup- elbows, knees, hands, feet, sometimes it feels like random lightening bolts of pain shooting out from the joints down/up the arms, legs, etc. - different areas sporadically. sometimes so bad I gasp due to level of pain
11. fatigue easily and have to rest more often
12. sacroiliac heavily involved. deep deep aching, hard to sit, lay, be comfortable. will lay on side with pillows in front, back, in between legs
12. when I start feeling extremely tired and feel like all energy is drained, I know a flare up is coming.
13.I usually have nausea w/upcoming flare-ups
14. I have symptoms everyday but some days are better than others. there are breaks between heavier duty flare-ups and some are much worse than others
15. I believe hormone fluctuations make my inflammation worse

Take vicoden, naprosyn, some natural anti-inflammatory bio-curcumen since biliary ulcer due to NSAIDs made stomach very sensitive. omniprazol. biologics recommended by rheumatologist but I'm not mentally ready.

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 08/24/12 02:48 AM
welcome sandy, come on over to the general discussion forum and tell us more about your journey to dx.

welcome here, you are among fellow sufferers and we certainly can relate. feel free to be yourself and ask questions.

i would just advise right off the bat to make sure you are exercising every day even if it is just walking. we can have the ability to just sit down when things are hurting and not working right. move! it is about the most important thing you can do to help.

also, read the posts on the topic of the anti-tnfs' go to the search button and you will read lots of discussion. it is a personal choice, i don't take them, but don't let anyone "convince" you either way that one way or another is the ONLY right way. you take them when you feel comfortable. it is your choice.

welcome, look forward to hearing more about you.

prayers and peace, sequoia
Newly diagnosed with Undifferentiated spondylitis. Symptoms are:

1.thoracic back pain..feels like a dull knife pushing in
2.pain in lower back, rt. hip/buttock
3.plantar fascitis
4.pain in fingers and hands
5.secondary pain in stomach, sternum, around upper body(can't stand to wear a bra!), arms and legs
6.some nausea
7.fatigue at times

So far, only take Etodolac and not on a regular basis..yet! Trying to hold off taking stuff, using heat/ice and salon pas

Salon pas are the best. I have them all over the place, in my purse, at the office, in my car. My worst pain is in my heel. They are great because they fit nicely on my heel.
Oh my gosh, I am reading your list of symptoms. I am very similar. My biggest pain is my Achilles tendon. I started having the pain in my right AT for almost three years ago. I had several visits to a Podiatrist and after various treatments I just decided to live with it. After now seeing a Rheumatologist he put all of it together as having AS.

Can you tell me what your pain in the tendon feels like? Mine is a burning pinching pain. I also have bursa's that get red and inflammed.

God Bless, Jenny
I was diagnosed with RA a year ago, but my rheumatologist suspects AS or PsA as well. My twin brother has Ankylosing Spondylitis. I am HLA-B27+. Here are my symptoms although there may be some overlapping RA symptoms:

-bilateral hand, wrist, knee, toe, top of foot and front of ankle swelling and pain.
-alternating hip pain but mostly left side
-tailbone pain
-top of neck pain that produces severe headaches that wrap around my ears and at the front of my forehead.
-costochondritis -terrible chest pain at times
-pain in-between shoulder blades
-all joints hurt most of the time
-dry eyes, blue scera
-dry mouth with occasional mouth sores
-nose sores
-esophageal spasms
-rheumatoid nodules in lungs
-previous achilles tendontitis (right ankle)
-plantar faciitis (both feet)

My biggest and probably the most troublesome symptom I have is fatigue. I could probably sleep the whole day away if I let myself.

Cool, a symptom comparison.

-back pain
-hip pain
-neck pain
-foot pain
-ankle pain
-knee pain
-calf pain
-rib pain
-shoulder pain
-sinus pain
-even my ears hurt
-I hardly sleep due to pain and sleep apnea.

known issues= Severe obstructive sleep apnea, asthma, chronic sinusitis, fused sacroiliac, fused spine, pes planus, calcium build up on: ribs, ankles, feet, elbows, shoulders, spine, basically everywhere.
Newly diagnosed Spondyloarthritis. Not sure if all are connected.
-shoulder pain
-joint popping and cracking (neck, shoulders, back, SI, hips knees, ankles, tops of feet, fingers)
-back pain(upper and lower)
-chest pain (acute)
-terrible hip pain (this is where i first noticed a constant problem)
-leg pain (very deep like a tooth ache)
-heel pain (very bad in the am)
-problems sleeping
-RLS (going to sleep, legs and arms)
-skin issues
-dry eye in the am
-morning stiffness (sometimes lasting all day)
-swollen fingers
-finger pain

Hi, I am new here. I don't have an official diagnosis yet. I saw a orthopedic surgeon for hip pain and when he looked at the xray he said there was nothing wrong with my hip, but a lot of imflamation in the sacral/pelvic joints. I said, like AS and he said yes, it isn't my field, but that is what it looks like. 15 years ago when I was having PT for back pain, two different PT's made the comment that I fit for AS. He made a referral to a Rhematologist so I will see one Oct 31st.

As for symptoms I have pretty much everthing everyone else listed.
Fatigue since childhood
The fatigue is so bad sometimes I think I can't go on...,
I had awful growing pains,
plantar faciitis,
tendonitis(-achillis, platelliar, elbows, wrists),
neck pain,
Rt ear pain(sometimes so bad I am sure I have an infection),
lower back pain,
refered hip pain(from back and pelvis),
pelvic and groin pain,
carpal tunnel syndrome,
arthritis in my hands, particularly thrumbs,
Seems like it takes a long time for sores to heal.
I have chest pain, mostly when lying down, actually it always goes away if Ichange positions.
Most of this has been going on since I was in my 20's andIam now 59.
I'm new here too. No confirmed diagnosis, but I'm HLA-B27+. Went to a rheumatologist about a year ago. Nothing showed up on blood work or x-rays. Suggested trying an immunosuppressant. I didn't commit to that because I'm worried about what that might do to me given that I have 4 kids. I sure have pain though!
  • Left SI pain (makes me want to not even lift my leg when I walk at times)
  • Colitis (typically presents as right abdominal pain)
  • Newest symptom is pain in the upper part of my sternum - extremely painful when I sneeze! Also hurts to lift my arms up over my shoulders

After reading over some of the other posts here I've notices a couple of other things that I never thought to consider attributing to the AS.

Recently went to the eye Dr because my vision has been bothering me a bit. I have a slight amount of astigmatism. Not so bad as to need glasses all the time (never failed any vision test because of it). Dr didn't notice anything unusual. Got a new pair of glasses but the Rx is basically the same as it was the last time I went (6 years ago).

Also, I have really bad tinnitus. Particularly in my left ear, which hurts from time to time. Always figured that was a result of too much loud music (lots and lots of local music shows in my teens and 20s). Quick search on that shows that inflammation is a common cause. Makes me wonder.
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 10/09/12 08:03 PM
please all the new folks here, just post your story on the main discussion forum. we would like to know more about you.

welcome, and come on by.

Hello,im new here,and just found out that i had SA couple months ago...and i just realized that my back pain is justbthe beginning,my doctor said i dont need to check the blood for hla-b27,since its obvious on my x-ray result..and the symptoms ,very stiff and constan pain on my spine...im 34,male...i havent tried the enbrell or humirra,im affraid to do so,because i heard it has side effect..and suppress immune...so for the moment i just take supplement like omega3, and trying to cut my weight and healthy living..tried med from doctor but after out off med,im hurt again...im kindda frustrated now...but well yeah live must go on...i hope that we can share our thought or share idea how to deal with it...thank you....
Hi Rudychen, welcome to the forum. it's a quick way to get feedback & support when you need it. Sorry to hear of your dx of AS. I remember what that was like for me. At least I knew what it was. sounds like you have a plan to manage the disease (exercise, weight, supplements) which is great and important. Its long term, so I would encourage you to stay informed & get the printed newsletter by joining SAA ($35). full disclosure, I work at SAA. But, I'd been a member/volunteer for 20 years, and suggested people join and support SAA long before I started working here. There are also SAA meetings in 33 cities, if you want to meet someone with AS. Take care, Rich
Thank you for your encourage,yes im still learning about this SA,and yes i would like to join but first i need to know how it work.i mean i'm outside USA,but mylittle brother lives there in portland Oregon.and is there anychance that i could actually gather or someother benefit that i could get after joining SAA, now that i know i got this disease i think the best way is to learn how to deal with it,as it affect my entire life.still feeling lucky though,coz im not alone....:)

I am new to this forum/message board and new to this disease. So I apologize if this isn't the right place to post my story.

I am 21 years old and have just recently been diagnosed with spondyloarthropy. I have had symptoms since I was 18, as well as other medical and psychological problems. Because of these other various problems, my joint complains were over looked, disregarded, and misdiagnosed. I am now healthy and free of those problems, with the exception of severe pain and fatigue that seems to be getting worse by the day. I was finally diagnosed with the vague "spondyloarthropy" a couple of weeks ago.

Although I am thrilled that someone has finally taken my complaints seriously and given me a name for it, I am very confused and overwhelmed about the disease in general. I don't even know what my particular type of arthritis is, and therefore I don't know how to research it. I am one of those people that extensively researches etiology, common symptoms, treatments, prognosis, etc. on anything that a doctor suggests. I need to know everything I can about what is going on with my body, and how to make it function at the most optimal level that is possible for me.

So I guess I'm joining this message board for a few reasons. 1) To learn about this disease. 2) To find and talk to others that are as miserable as I am. 3) To find what has worked for people so that I can give it a try.

My symptoms are as follows:
-low back pain/stiffness
-neck pain/stiffness
-bilateral wrist pain/swelling
-pain in most knuckles
-left jaw pain
-left hip pain/stiffness
-bilateral shoulder pain
-irritable bowel

Thank you to whoever may be reading this. It feels good just to get the emotions out of my head and into physical words. I would greatly appreciate any kind of advice, related symptoms or stories, helpful information or links, or encouraging/inspiring words.
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 10/17/12 08:31 PM
wow kate, what a long story for such a short life. i am so sorry you are suffering so. we have twins, and all the time we worry that our son has my dx, the AS, and our daughter has my hubby's dx, RA.

it is so awful having medical so young. i should know, i started at age 7, so, you have a sympathetic ear here. and also with the main forum, and the 20 something forum.

i wish we had had computers when i was young, might not have felt like such a medical freak child, LOL.

come on over to the main discussion forum and introduce yourself. most of us post the symptoms page as our first encounter and then jump in on topics of interest to us. you have a lot of valuable information to share and lots to learn from all the others in our situation and dx.

welcome, tho as many say, sorry you have to be here. it is a very good site with much information. read the info at the home button above and get a couple of the free pamphlets on the dx and exercise, etc. then join in.

note, this is to kate, but applies to all who post here, please come on over to the main discussion forum and let us know who you are.

prayers and peace, sequoia
Plantar fascitis
Upper back pain between shoulder blades
Elbows-swollen very painful, wrists
Right knee
Mental fog
Depression (moodiness)
Fatigue and generally achy all over
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 10/30/12 02:10 AM
welcome sunseeker, come on over to the main discussion forum, and join in the conversation. sorry about the elbows and wrists, must make it tough to be on the computer.

prayers and peace, sequoia
I acquired AS from a fiance' with AS. It was not activated until I had my son. Now 26 yrs later I have the following cascade of related diseases & conditions.
1. Migraines
2. Severe Fibromyalgia
3. Hypo-thyroid
4. Spinal Stenosis
5. AS in lumbar & neck (pain & stiffness)
6. Focal Segmental Nephrosclerosis in remaining kidney.
7. Heart involvment
8. Osteo-Arthritis/AS in knees, ankles, feet & wrists & fingers
9. Bone spurs shredding rotator cuffs & growing elsewhere. *surgery temporary fix they regrow.
10. Recently I've been diagnosed with "Primary Hypogammaglobulemia" where my immune system is worn out from running on high for so long. I receive gamma globulin by way of 4 infusion needles in my stomach each week for the rest of my life @ $6,000 a month for this one med.

Is there anyone else with immune system problems?
None of these conditions were in my family, but inherited by my son.

*Also, because of my last kidney is diseased, I am unable to take anti-inflammatories or DMARD's.
You're problems sound all too familiar. I've been battling for 26yrs.
When the pain & disease starts to reach the overload stage, what's always worked best for me is thinking of my AS & pain as a seperate entity. You dig in your heels and decide who's going to run your life the pain & disease or you!
Also, it may sound simple... but I've always viewed life as a blue sky, sometimes gray clouds may obscure your view of the sun, but clouds always move on if you have the fortitude to wait them out.
Good luck & God bless.
Hi. Im new here. 30 yr old female. I first learned about AS 6 yrs ago online while researching back problems bc my lower back kept locking up when i layed flat on my back. I remembered a school nurse in 7th grade saying it looked like i had mild scoliosis so that's what i was afraid of. I had many other what i thought were mild SEPARATE symptoms. And when i learned of AS I knew right away that it was the cause for all of them. It scared me. Ever since then i have been trying to forget it is happening to me. Wish it away. And now here i am trying to accept it so that i can try my best tp slow the progress of the disease. Pretending it is not there will only allow it to flourish.
This is a list of symptoms i had before and up to 25 years old or so:
Rib pain(growing pains lol) started when i was about 6 yrs old
Back pain and stiffness
Lower back started locking up when i layed a certain way when i was about 21
Almost always had fatigue
Strange problems including a 5cm cyst on my salivary gland which needed surgically removed in 2002 after my son was born
A very sensitive spot on the front of my right shin that sent a feeling of bolts of lightening through my body whenever it got bumped
Occasional days when i felt like i was walking on pebbles all day
Tailbone sensitivity/ pain
Cracking, popping joints everyday especially my sternum, knees, hips and neck and of course my spine
Memory problems
Morning stiffness( sometimes it takes hours for my hands to be able to get a good grip on things)
Diarrhea on and off
Irregular periods
Sometimes i couldn't take a deep breath. I would be desperate for a deep breath but its like i could only manage short, satisfying breaths without feeling like i was being stabbed in the rib. What's funny is the spot i feels like important being stabbed in always changed places each time it happened. I had thought my lung collapsed or i was having a heart attack when it was severe
Huge big toes with thick, cracking toenails
Ridges in fingernails
General achiness (occasionally) in bones. Again, the pain would switch places often
Up until this time i had no clue these symptoms may be related. Thought i just had really bad luck
Here are my symptoms now after pretending my body wasn't attacking itself for 6 years:
All previous symptoms still exist and some are worse
Completely sporadic periods(sometimes i go up to 2 months without one, but usually they are myfrequent..up to 3 per month)
Diarrhea with constipation? Almost everyday
Trouble breathing everyday
Bottom few vertebrae obviously fused
Hip pain. Feels like important being stabbed deep in my right hip from the side
Pain in both knees, left knee has locked up completely. I couldn't strained it and it hurt so bad and looked almost dislocated. Ever since then it hasn't felt right. Important afraid to bend it
Some kind of growths attached to the insides of my eyelids( idk cysts, bloodvessels? I can no longer wear contacts
Sensitivity to light
If i don't switch positions often i get sore. My back mostly. I cannot keep my elbows bent very long. Hard to explain its like i can't get comfortable
Hand cramps when i write
Dizziness and lightheadedness.
Im sure there is more im forgetting but you get the idea.
And the weirdest part is that some days im fine
Anyway i wanted to share one way i have found relief for back pain stiffness. Its called a foam roller. its a foam cylinder found in the fitness section of department stores. It is used for exercise routimes to loosen muscles. I sit on the floor with the roller behind me and slowly lay back with my spine curves around the roller. Be careful if you go too fast it can hurt. Then when you feel ready slide back and forthforth on it. So much relief
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 11/08/12 02:57 PM
welcome gidget and shmeph..you both have a lot of symptoms and a great deal of misery. you must now know that you are not alone. we have extreme cases here as well as both of yours. come on over to the main discussion forum and introduce yourselves.

jump in on topics that you can relate to or better yet, start a new one and tell us more about your journey.

shmeph, have you been dxd (diagnosed) with ASs and if so, is there any meds combo you are able to take which might alleviate some of the symptoms.

do either of you try to work with such extreme symptoms.

i am so sorry you are both suffering so. this is not a dx for wimpy folks, right?

prayers and peace, sequoia

24 yrs old. Diagnosed at 6, went into remission, came back at 20 and has not went away. Wrongly diagnosed with RA, recently diagnosed with AS...
lower back pain
neck stiffness
a new, recent pain in my wrist (mostly the thumb muscle) and fingers -cant be good
Main source of pain in both knees and hips
swollen ankles
constant reactions to my Remicaid infusions
sometimes cant breathe well (scary feeling)
Huge swelling of the elbows and shoulders
Jaw pain in chewing or coughing or opening mouth in any way.

This disease has already wiped out both hips. I just recently (Sept 10th 2012). I just recently had complete left hip surgery and now have a titanium hip. Doctor said that the xrays show that my right hip is also deteriorating and will soon also be replaced with titanium

So will soon have 2 hip replacements and still do not feel much more improved in regards to bone pain...I feel as if my whole body will need surgery because its only a matter of time before this disease destroys all my tendons!

24 yrs old-Boston, MA - trying my damnest day-to-day to keep my job and stay employed, have dreams of a house with a comfortable lifestyle and independence, tough to work with this disease, have a lovely gf and try to live every day with an optimistic attitude.

Thank you for listening
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 11/17/12 08:56 PM
bless you john. what a tough life. i, too, have had many medical problems since i was young. i know that can scar our outlook while others around us are healthy and play normally, etc.

but, you and i are still here making our contributions to the happiness of others! LOL, but not really. we do have a different perspective and you will be valuable to this forum. just jump in on other topics on the main discussion forum, or any other forums which strike your interest.

welcome here, you belong and have lots to offer. i bet you were dxd with juve RA. they knew basically nothing else. so, take care of yourself and that lovely of yours and glad you are here.

prayers and peace, sequoia
-costochondria (Teitze's Syndrome) = chest pain
-buttock pain radiating into my legs and ankles - switches sides, goes from left to right and back again over days)
-shoulder blades painful
-stiffness upon waking, hard to make it to the bathroom in an upright position
-difficulty sleeping - can't turn over in bed - sometimes have to get up and pace back and forth for awhile
-hips ache

In the past, I have had rib cage pain, neck pain for months and been unable to walk. I was hospitalized in 2000 because I couldn't walk it was so painful. I was in the hospital for 5 days.

Karen, 53 years old, diagnosed in 2000, first flare started with a swollen second toe on the right foot, Humira one month and then chest rash. NSAIDS. Voltarin shots here and there. Low starch diet seems to help but doesn't last.
lower back pain
neck pain
migraine headaches
tired feeling
Recently diagnosed (Aug 2012) Reiter's Syndrome and Ankylosing Spondylitis - 38 yo female
(I have a herniated disc in lower back that is LOVING the AS)

(Conjunctivitis and bladder inf from RS cleared up)
- fatigue all day, starts mild in am and progesses throughout the day
- sleep only couple hours at a time
- lower back pain and stiffness
- painful, searing hot hip pain (sometimes both, sometimes left/right)
- pain in buttocks (sometimes both, sometimes left/right)
- during the day, ribcage pain along the bottom rib
- overnight, entire rib cage stiff and omg hurts to move or inhale
- recently, jaw pain and stiffness (even in my gums - never had/needed dental work)
- neck pain and stiffness
- mid-spine pain and stiffness
- left knee/ankle/shoulder swollen, stiff, pain
- right ball of foot (2 toes) swollen, stiff, pain
(the above combination makes for a very sexy limp-walk)
- left pinky swollen, stiff, pain
- constantly feel like I'm fighting a cold
- sometimes at end of day I get a buzzing kind of pain in the bottom of my feet (anyone else get this?)
- and occassional pain/stiffness in other joints (wrists, ankles, fingers, etc), like it migrates on days that I "overdo" it

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 11/27/12 03:18 PM
dear karenw, 502 and under control, come on over to the main discussion forum and introduce yourselves. tell us about your personal journeys.

also welcome and jump in with topics of interest to you that others have posted. we all have the same dx (diagnosis) or slightly different, but our symptoms are very similar. however, we have our own version of the dx due to our own dna.

life with this dx is a bear sometimes. welcome, prayers and peace, sequoia
Here we go:

Lower back pain
Increasing stiffness and loss of flexibility despite active lifestyle
All over ache as if I have the flu, which I do not
Exhaustion for no reason
Chronic pain in my tailbone

Symptoms are under control with medication as described in my signature
Hip pain left and right
Lower back pain
Left ankle pain
Right shoulder/wrist pain
Neck pain
Lower spine fused/Bamboo spine
Sacroiliac joints fused
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 12/15/12 02:45 AM
hey welcome green...don't get where you have been since 2006...how about updating us.

hopefully, you have been posting on another site, and have had some help and feedback before now.

if not, tell us about your journey. come on over to the general discussion forum, and start a new topic/post

welcome back, and also, jump in on other posts you find relevant or interesting in your life.

what are you doing for the pain?

prayers and peace, sequoia
(Even though my rheumy says "neck pain isn't part of SA)...

left SI joint and buttock
pain in bottom of heels
aches all over like flu
eyes burning
extreme exhaustion

Originally Posted By: RobynJ
(Even though my rheumy says "neck pain isn't part of SA)...

AS can affect your whole spine, including your neck, so I don't know how your doc got that idea, some of the people on this forum have a fused neck

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 01/05/13 10:28 PM
hey welcome, robyn...come on over to the main discussion forum and and start a new topic, to tell us about your journey. also, jump in on topics that interest you.

i also recommend you read the site starting with the "home" button above and get free copies of the pamphlets listed under resources. i believe the first copy is free.

welcome again, and good you found us. sounds a lot like AS to me...

prayers and peace, sequoia
Hi Everyone,

For the past several months, I have been experiencing back pain in the lower right side, on that "bump" right next to my spine. I don't remember doing anything that may have caused the pain. The pain seems to come and go, but it has been steadily getting worse, and tonight it is the worst it's ever been. At times I feel on the verge of tears.

I had an episode of iritis about a year ago, and episcleritis many times over. It seems as though the episcleritis doesn't really ever go away. (I have a very bloodshot eye right now) I don't know if episcleritis is even sympomatic of AS - or whatever I'm experiencing, but thought it might be worth mentioning. When the opthamologist treated me for the irits, she told me to watch for back pain. "not your garden variety back pain - much different", She said. I forgot all about that conversation until chatting with my co-worker about my back pain. Remembering my episode with iritis, she drew the correlation immediately, as her sister has AS. So here I am. Wondering if indeed there is something at play that I should seek medical help for. For what's it's worth, I am uninsured and watch my budget carefully, but don't want to play around with something that should be treated. Any advice would be appreciated. Thanks so much.
Haven't been diagnosed BUT...

Neck, shoulder and back pain
Cracking or popping of neck and back, incl. what I think is SI
Crack/popping of back when I lay flat
Ankle foot & heel pain
Sore ribs
Eyes go blurry - kind of like there's something in my eye/glazed over
Sore/cramping hands especially When writing
Tingling pinkie to elbow occasionally
Diarrhoea on and off (unable to find cause)
Restless leg type symptoms at night when trying to fall asleep
Sore under arms
Calf muscle cramping
Whole buttocks is sore. Incl. underneath sort of
Sometimes it feels like my heart races or beats hard

And I think that's it...

Hi. Am new here, first time, i will list what my symptoms have been. have had AS since 1974.

hips give out while walking seem to just go out from under me.

hips at times can't hardly walk.

lockups, can't get out of bed at times, lifting a cup of coffee is a killer.

chest, can't breath sometimes just able to take little sips of air.

chest pain, beyond belive. unbearable.

night sweats. socking wet over and over, cloths bedding, pillow.

shoulders, knees, feet pain.

headaches, sharp long lasting.

back pain, very bad, my back goes out sometime just reaching for something. Can't lay in bed a long time because of the back pain, sleep is not long lasting because of it.

this is most thing i deal with..
Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 01/31/13 01:06 AM
welcome ront...come on over to the main discussion forum and tell us about the rest of your journey.

do you think because you have been dxd (diagnosed) so long is the main reason you are still suffering so? have you been through treatment? nsaids likely, anti-tnf's likely.. try enbrel? humira? remicade?

many of us have had this disease, but not the dx for decades.

have you had hip replacement? perhaps it is time to discuss that with your rheumy and/or an orthopedic surgeon.

welcome, and post your story over on the bigger forum.

i am so sorry it has been so horrible. do you have family around who are sympathetic? i hope so...

also, jump in on other's posts when you have some info for them...

prayers and peace, sequoia
My main symptoms are neck and rib pain. Eye issues (Iritis and Sjogren's Syndrome), IBS, Foot and heal pain and lower back pain.

Really, For the most part I try to maintain a happy mind and move forward.

Posted By: Anonymous Re: [Sticky] Spondylitis Symptoms - List Your Symptoms - 02/09/13 03:11 PM
jacquie, welcome. tho it looks like you have posted for awhile. why don't you come over to the main discussion forum and tell us your story.

we lived in sierra vista for 20 years, and i drove two years to the U of A to finish my degree...

is your treatment working for you?

breast bone hurts
ribs (any small movement from side to side)
hurts to tilt pelvic
hips hurt all night (I wake up several times a night)
cant stand longer then 10min
heels hurt
very hot spots on lower shin bone
now that I focus on this, I could go on and on.
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 02/27/13 03:05 PM
welcome vena...sounds like you might have a good case of costocondritis, part of the AS rib pain most of us experience.

we have your symptoms, which are very much like my own, but we want to know how you got here on your journey!

come on over to the main discussion forum. start a new topic and tell us your story. also, jump in on topics of interest you see on the list and join the discussion. we also have internet chat sessions on saturday mornings with spencer - you will see a posting with info in the morning...

everybody has something to offer here with similar symptoms and yet because of our DNA, we have our own unique case of AS. that is the value of this forum for me...we see ourselves in others and it can help us figure things out.

welcome, have a good day today and write more.

prayers and peace, sequoia
I'll see you on Saturday, and thank you for the welcome.
Back pain and stiffness worse at night and in the morning
Bilateral heel pain on the bottom of the feet - with stiffness after sitting or sleeping, the pain is worse with prolonged standing and walking.
Tightness in bilateral hamstrings and Achilles
Pain at night, disrupting sleep when turning in bed
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 03/17/13 12:57 AM
sorry to be so late, NJmom, in response. we don't always get to the symptoms list for new members.

start a new topic on the general discussion forum and tell us your story of your life with the AS, or have you been dxd (diagnosed) yet?

looking forward to hearing from you, mom...

again glad to see you sign up.

prayers and peace, sequoia

apologies, haven't been on the forum much, i am a college basketball crazy fan. a bit busy on the tele...LOL
1. Bilateral shoulder pain.
2. Wrist pain, finger joint pain.
3. sacrum pain
4. sternum pain
5. rib pain
6. fatigue, fatigue, fatigue
7. small patches of psoriasis on face since starting Enbrel
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 03/26/13 03:08 PM
welcome, ismay...just as i have asked folks before, please come on over to the main discussion forum. start a new topic, and tell us about your AS journey.

many folks start there and then find other forums which suit them too. we are here for friendship and understanding. we can relate. good you are on enbrel. do you have psoriatic arthritis? or?

welcome again, prayers and peace, sequoia
Hi guys!

Im 27 years old- diagnosed about 5 years ago:O

My symptoms:

1.If I sleep for more than 6 hours will always wake up....feel very uncomfortable unless I sit up or walk around for a while.

2. Feeling like I need a good nights sleep but never able to get it;)

3. Concerned about taking Enbrel...have been taking it for a few years...you read some crazy stuff on the web!!

4. Concerned it will get worse

5. Wish I knew all the things I should be doing if anything to improve situation

6. Glad there are others out there who understand and that we can all lean on each other for support
Posted By: Anonymous Re: Spondylitis Symptoms - List Your Symptoms Here - 04/01/13 01:48 PM
hey fergie. sounds like you have the dx understood. sounds like you are suffering.

come on over to the main discussion forum and start a new topic and tell us about your journey. we have the same dx, but our own version of it due to our DNA.

read the info at the "home" button above. and don't worry about all the things that could help. just work with your doc and try to find a comfort zone for yourself. it is a hellova tough dx to deal with. success with any one plan is sketchy at best. some find great healing from the anit-tnf's and many do not. there is much the experts do not yet know about this dx. or, they could produce a remedy that would help us all.

come on over and jump in on other posts. we have a bunch of new folks right now. support one another. talk. it is what we do best.

welcome, and prayers and peace, sequoia
Lower lumbar back pain every day
Sciatic pain occasionally
Finger joints swollen and tender
Shoulder soreness
Have had uveitis in each eye, separately
Hip inflammation, either one or the other
Bursitis of right hip
Tightness and pain in the base of the thumbs, and big toes
*Rib Pain
*Rib Spasms
*Low Back Pain
*Thorasic Spine pain
*Heel Pain
*Thumb Pain
*Big Toe Pain
*Recurring Tongue Thrush
*Left Knee Pain
*Right Shoulder Stiffness
*Left Shoulder Adhesive Capsulitis
*Jaw Pain
*Right Hip Pain
*Spinal Stiffness
Hands and wrists most of the time
Knees all the time
Not a reflux but horrid gas-like pain...GI dr has done every test imaginable and doesnt know what is causing it. Taking hyomax when it gets bad. Feel like if a hole were poked in my belly I could fill a balloon.
SI "shocks" when I move<