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Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
Alphamale #210555 06/15/11 06:56 PM
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23 year old male

For me, the following is all attributable to Ankylosing Spondylitis:

HLAB27+
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
Hypogonadism
Constant hunger
Hypoglycemia
Irritability
Depression
Anxiety
Adrenaline surges
Disabling FATIGUE
Muscle weakness/shakiness
Muscle pain
Insomnia
Hypersomnia
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.





Last edited by chemman; 06/15/11 06:57 PM.
Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
chemman #212800 07/19/11 03:27 AM
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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.






There are two sorts of pain, the sort that makes you stronger and the useless sort that only causes suffering...I have no patience for useless things.
Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #212868 07/20/11 06:14 PM
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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)
*Nausea
*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
*Fatigue
*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


Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
chemman #213495 07/28/11 04:41 AM
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Where you ever tested for MS

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
Samson #213893 08/03/11 12:40 AM
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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




Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
maggienyc #213907 08/03/11 03:31 AM
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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


Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
#213945 08/03/11 05:16 PM
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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.


Greg, 37, Dx 9/7/11, taking 3 gm ssz, Celebrex, Cymbalta, trazadone, Remicade
Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
#213948 08/03/11 05:31 PM
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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.

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
maggienyc #213953 08/03/11 06:09 PM
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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

Re: [Sticky] Spondylitis Symptoms - List Your Symptoms
#213955 08/03/11 06:13 PM
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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

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