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#273754 - 03/27/16 07:27 AM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
Interesting reading the symptoms, I have a few I've seen on other posts, that I wouldn't have necessarily attributed to AS, but will star them below, on the off chance that they may be related, since others have experienced them. Not sure that they can all be attributed, but interesting coincidences?

Extremely stiff in the AM
Lower back pain that can shoot into thigh
Plantar fasciitis
Rib pain - can't lie on left side
Hand pain
Sever neck pain
Swelling from collar bone up left side of neck-very sore and burning
Left knee pain and swelling
Unbearable pain across shoulder blades
Pain up left side of back (must be some tendons over there as my tenders are highly effected)
Brain fog
Have had frozen shoulder - again left side
Trips to ER due to chest pain
Increased reflux and discomfort despite being treated for reflux for 16 years
Everything seems to get worse by day's end
Depression as the pain gets unbearable
Bras are soooooo uncomfortable
*RLS which can affect both legs and arms
* gall stones (gallbladder removed)
* uterine fibroids - surgically addressed
* tinnitus

I guess that's enough :-p. Luckily it's not often that all symptoms hit at the same time. Usually just when I'm under a lot of stress. Being a type A, am not good at dealing with stress. Any good suggestions, please let me know!
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

#273798 - 03/31/16 05:28 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Roccdeezy Offline
Registered Visitor

Registered: 03/29/16
Posts: 11
I'm new here. Hello to everyone.

I have a full time job and I've gotten really good at trying to hide my pain. Luckily I have an above average iq and I'm well educated so that's helped me maintain full time employment as really hard physical labor would take me out!

I have AS! Diagnosed 2 years ago and have been this way for over 18 years. My symptoms effect mobility of my entire body a lot and pain is horrible at night only allowing me a couple hours of sleep before I have to get up. During the day the pain is tolerable as long as my hips aren't hurting and I don't have to squat or bend over much as my back and knees hurt. Problem areas of mobility and pain include my Neck,back,ribs,right knee,right shoulder,hips and left ankle. To give you an idea, I feel like I'm gonna break a rib if I cough or sneeze. It takes me over an hour to get out of bed and do morning duties like going to the bathroom, showering and getting dressed with the assistance of my wife to put my socks and shoes on. With humira I could sleep to the last minute and be ready in about 20 minutes. Humira was a miracle for my pain but I ended up with psoriasis on it. Currently waiting for my insurance to approve cosentyx and we will see how that works. Nothing else has worked. NSAIDS don't work. Currently on pain killers just to get through the day.

#273799 - 03/31/16 05:30 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Roccdeezy Offline
Registered Visitor

Registered: 03/29/16
Posts: 11
And I'm only 36 years old!

#273802 - 03/31/16 05:38 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Roccdeezy Offline
Registered Visitor

Registered: 03/29/16
Posts: 11
Forgot to mention my sternum hurts a lot too

#273832 - 04/02/16 04:47 AM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
nowIknow Offline
Registered Visitor

Registered: 03/30/16
Posts: 58
Loc: Nebraska
How are you guys all able to get your brains working well enough to make these lists is the question? LOL I want to try.

My list of Symptoms:
Brain fog
Cognitive problems
SI joint issues
Pain in sternum
Trigger points
Bone spurs(so far these were xrayed= back, one knee and one achilles tendon and there they were)
Achilles Tendon Calcification (and bone spur)
Plantar facitis (more past I guess)
Exasperations/Flare ups/Relapses
Exercise intolerance/triggers relapse
Vertigo (diagnosed with benign positional vertigo)
Past endometriosis (hysterectomy)
Fibrocystic breast disease
Food intolerances/gluten/nightshade/citrus
Contact dermatitis flare ups
Allergies to weeds/hives
Balance issues
Muscle weakness at times
Shaky hands at times
Giddiness? <what's that about?
Many chronic things that go on
Lack of pigment on my neck
Easy bruising
Charlie horses
Jaw pain
Tendons/ligaments easily affected(have torn my jaw ligament)
Sore throats
Neck swells at times
Dark circles under eyes
Easily dehydrated
Sensitive in many ways to many things
Cannot tolerate stress have had to quit jobs
Straining in upper back and neck
Different types of what I call phantom pain as they change
Sinus drainage
Ridges in nails
Have had 3 hematomas in my life
Can't lose weight
High blood pressure
High cholesteral
Anemic often

Refrained from my stories and left just a list of what symptoms I could recall at the moment.
Yet waiting and pressing in for diagnosis.

Thanks for listening and for your caring support.

Laughter is the best medicine after all.

#274039 - 04/18/16 11:00 AM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]
sdot Offline
Registered Visitor

Registered: 03/05/16
Posts: 387
Such a varied amount of symptoms. No one should have to suffer like this. I wish we were much closer to a cure.

#274231 - 04/27/16 02:25 PM Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams]
LFields45 Offline
First time visitor

Registered: 03/24/16
Posts: 1
I'm newly diagnosed and even then the rheumatologist wasn't convinced I have AS; however, my PCP and now pain management doctor believe I do. I have had 3 HLAB-27 tests done throughout my life, first being in my early 20's....I am now 51. Although I have no fusing in my back yet, I have many of the AS symptoms described here.

I have the following symptoms:
pain in low, low back (sometimes very severe)
pain in bilateral hips (sometimes very severe)
neck pain
left shoulder pain
stiffness in all above areas, especially in morning and night
EXTREME fatigue
swelling in joints
eye irritation, dry eyes

The rheumatologist basically left it up to me as to whether or not I wanted to start an immunosuppressant. I chose not to but am wondering if I should.

My pain management doctor do bilateral SI joint injections and that helped for about 2 weeks, now the pain is really coming back again. The next step is to actually cauterize the nerve endings and he says this helps for 6 mos-1 yr so I'm considering that.

I am having a hard time accepting this, I have always been fairly active. Now, I walk 1 mile and my hips start hurting.

Thanks for listening.

#274259 - 04/29/16 07:42 AM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Paul2 Offline
Registered Visitor

Registered: 04/28/16
Posts: 16
Where do I begin. Thats easy HELP ME . I have a very physical Job almost no sitting 8 to 12 hr shifts up and down stairs production machine ,been doing this for 38 yrs. I am 59.5. In 1995 I got sciatica down the right leg . Sitting and standing were extremely painful. So I started taking Tylenol 4 pills a day 2 in the morning 2 at lunch plus saw a chiropractor,who got my pain to go away somewhat,but I still needed the Tylenol I took those for about 8 yrs. Until around 2002 they didnt help anymore. I went to Advil same dose
with out it was super painful to move. Feet knees lower back. 2003 the surgeries started. 11 total since. 2003 was heel spurs both feet. 3 years later Surgeries carpal tunnel both hands and elbows. Then around 2010 My right foot started really hurting. Saw the dr . Arthritic feet fractured bone fragment hitting the nerve right where you tie your laces and shoulder arthritis restricting movement. Surgery to clean it out. . Then a year or so later the foot again this time to pieces of bone fragments same spot. The recently this past holiday season the right foot gave out at thanksgiving. I couldnt walk on it. 3rd durgery on same foot same spot 3 pieces of bone fragments. The swelling still hasnt went down and hurts to walk on it I use a cane to take pressure of it if walking more than normal. Then the shoulder again in Jan bone spur and arthritic clean up collar bone..................Only they found something else. My labral was shredded. So they had to do a repair. Im still hurting in recovery. I went to my personal Physician who suspect's I have AS.
My symptons
Pain in Joints
Dry eyes....sometimes I can see the heart beet in my eyes, like pressure, MY EYE PULSES WITH EACH BEAT.
Burning eyes at least 2 times a day
feet hurt constantly in joints right where you tie the laces and ankles
knees feel weak when standing up
if I sit to long and go to stand up I feel like Im crippled for at least a hr or longer and still restricted in what I do such as bending over or picking something up off the floor.
When laying down its getting harder to lift my chest up first
my neck feels like its binding sometimes
hands and wrists joints hurt
some fingers burn
high blood pressure
Sleep apnea
interrupted sleep from pain
poor posture always catching Im leaning forward.
shoulders hurt
Lost most of my strength.
I have seen a Rheumatologist who also is testing me for AS As a matter a fact Im headed out the door for the special blood work and xrays.
The Rheumatology Dr said I have Degenerative arthritis plus looking for other
What do you guys think I wish some one would just say whats a matter with me.

Edited by Paul2 (04/29/16 07:46 AM)

#274320 - 05/03/16 08:58 AM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Paul2 Offline
Registered Visitor

Registered: 04/28/16
Posts: 16
Wow Keeps getting better and better. Once again feeling the pain I have felt the last 3 times that resulted in bone fragments and surgery needed. Went to the foot DR yesterday. He see's it swollen right where he did the surgery in Dec. and says what do you want me to do about it. Then offers a cortozone shot.
Im done with him.

#274330 - 05/03/16 09:33 PM Re: Spondylitis Symptoms - List Your Symptoms [Re: fall_of_moonbeams]
Paul2 Offline
Registered Visitor

Registered: 04/28/16
Posts: 16
GOT THE DIAGNOSIS I have moderate degenrative arthritis in neck shoulders and hands. SEVERE in feet knees and lower back. Right foot is a candidate for surgery again MRI tomorrow and more imaging on neck and feet. I don't know what to think they also tripled the meds

Edited by Paul2 (05/03/16 09:33 PM)

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