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Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #282143 11/26/18 11:55 PM
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1. Sever back pain that interrupts sleep and is worse from 2am to 10am
2. Painful joints especially hips, knees, ankles, and shoulders
3. Extreme fatigue
4 depression from constant pain
5. Eye inflammation
6. Tremors

Associated DX
Raynaud's


JG xx
Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #282144 11/26/18 11:58 PM
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1. Sever back pain that interrupts sleep and is worse from 2am to 10am
2. Painful joints especially hips, knees, ankles, and shoulders
3. Extreme fatigue
4 depression from constant pain
5. Eye inflammation
6. Tremors

Associated DX
Raynaud's


JG xx
Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #282223 12/15/18 11:39 PM
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Low back severe stiffness
Both SI joints ache left side can make it hard to walk.
Tingling in feet and hands
Right knee aches possible bakers cyst
Headaches when I wake about once a week some REALLY BAD
neck stiffness
Jaw stiffness
Loss of appetite
Fatigue
Trouble sleeping

New symptoms
Fluctuating temperature hot to cold sweating with cold weather intolerance.
Both shoulders feel like I have a torn rotator cuff
Pain that moves around mostly joints
Pain in chest around breastbone.

I’m sure more

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #282490 01/23/19 02:41 AM
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1. Fatigue
2. Shoulder pain (most persistent)
3. Bone marrow edema of distal clavicle
4. Pain at base of thumbs
5. Headaches
6. Penetrating pain through and through my upper torso at times
7. Superficial shooting pain in scalp/temples
8. What I think is pain with ligaments
9. Intermittent aching thighs
10. SI joint pain
11. Trouble getting moving after having trouble standing
12. An intermittent feeing that if I don’t get to the bottom of whatever is going on with me, I won’t live long (malaise).
13. Awakened by pain (everything is worse at night)
14. Costrochondral pain I think it may be called
15. Stiffness
16. Burning palms/soles of feet
17. Dry eyes
18. Short of breath at times
19. Issue with ankles feeling like they are weak, like I could fall
20. Numbness/tingling in right hand



Last edited by iache; 01/23/19 02:43 AM.

CML dx’d 11/2013
AS dx’d 1/2019 (Humira)
Re: Spondylitis Symptoms - List Your Symptoms
fall_of_moonbeams #282762 03/13/19 01:48 AM
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Hello, I was just diagnosed with AS 3 weeks ago, I’m 29 years old.. my pain started about 4 months ago.. my back felt tight as if I had slept wrong. A week went by and I noticed the pain not only in my back but radiating down my hips, to the point where I was in tears just to do anything, sit, stand, drive etc. another week went by and it was in my wrists and ankles. I finally saw my primary care dr... she did ANA blood work which came back positive... I saw one rheumatologist who told me nothing was wrong. At this point I was getting maybe 2 hours of sleep a night and I had lost feeling in my legs I couldn’t walk, or even dress myself one weekend. I fought for a second opinion and when I went to another rheumatologist and explained my symptoms it was like she Knew immediately what was going on.

Fast forward three weeks ago... she diagnosed me with AS while I wasn’t excited for an answer I was also frightened.. I still am. I’ll start the embrel shots soon after I’m weened off prednisone if anyone has any advice on it please let me know.. I’ve also just been keeping track of foods and pain levels to see if there’s an association between anything... any advice at this point would be helpful as I’m just overwhelmed

Re: Spondylitis Symptoms - List Your Symptoms
Jmelynn #282764 03/15/19 01:59 PM
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Overwhelmed is pretty common when you find out.

Many of us found out when we first got the disease that hot showers and warmth alleviated some of the more acute symptoms. Stretching, physical therapy specific to AS and keeping your body warm during work days is central to improving circulation to the areas which are compromised.

AS "works" through the migration of tumor necrosis factor (a cytokine) into our tissues in larger amounts than is normal for most people. That overabundant amount causes inflammation and leads to discomfort and pain. Enbrel, Remicade, Humira and other medications bind (attach) to TNF and prevent it's migration into our tissues. When it works it works well. Some people find that other medications taken orally help specifically non steroidal anti inflammatory like ibuprofen, voltaren and alive help as well though these medications have side effects on the lining of the stomach so if you take these take a medication like pepcid, prilosec etc and discuss with your doctor prior to using them. Arthritis strength Tylenol helps too.

For hands and joints Voltaren gel, Aspercreme with Lidocaine and Biofreeze are good choices. I put them on and cover my hands with a sock or my neck with a ski silk. I find that to my surprise Biofreeze works over a longer period of time and the pain relief is best with Voltaren gel.

A positive attitude goes far. Keep moving, and if Enbrel does not help, try Remicade or Humira per your doctor's review.

Don't be troubled. Every human being has challenges, Many people don't have solutions and/or medications. Ours does. =)


Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #283147 05/26/19 01:09 AM
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Where do I start..
I am now 50 and I have suffered for almost 40yrs.
Finally after all these years have the diagnosis!!!!
I will say this started at such a young age. I couldn't wait to turn 18 to take myself to the ER and doctor's
Not that it did an ounce of good

Since around the time of. My first period at 11 I have had pain in the (now known to be ) SI JOINT.
Ribs felt as they were exploding
Pain mid back Every morning
This progressed into
Compression fracture of T11& 12
neck
Shoulders
Shoulder blades
Fevers
Hands
Hips
Toes
Top of the foot (the weirdest one)
Wake up from extreme pain anytime after midnight.
And I got 1 good disk in my neck!
now fusion of the SI JOINT/Sacrum / L5 .

As a woman/ single mom having to work Male jobs to support the 3 kids I have heard every BS script out of more doctors than one can imagine...
Shhhhh I will let all know the pain in the si joint is from my period... even though I have not had one in 14 yrs!!!
In the last 3 yrs my AS has progressed to the point of INSANE dibliating pain that I have had to kick. Scream..cry .. cuss. Beg doctors to just LISTEN to me ...
The last primary I seen she has gotten. More accomplished for me than EVERY doctor I have seen all my life

Now I have a wonderful rheumatologist who is going to try to help me to be functional in time for my grandsons arrival in September! 😊

Last edited by endeliz; 05/26/19 01:15 AM.
Re: Spondylitis Symptoms - List Your Symptoms Here
endeliz #283162 05/31/19 06:38 PM
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wow, endeliz, that's a very, very long time to go without a diagnosis and I imagine various ineffective treatments along the way.

If you want to help others, you can send a postcard to the docs that missed it over the years. it's a reminder/educational piece to 'Think Spondylitis'.
https://www.votervoice.net/Spondylitis/campaigns/66513/respond


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284273 05/22/20 01:19 PM
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Each flare seems to be a totally new experience:

1. Started about 20 years ago with a hard-to-describe pain in the butt that would move from side to side
2. Abdominal pain that could only be described as "my internals hurt". Had colonoscopies, evidence of Crohn's-like lesions.
3. Pain between shoulder blades and sternum/chest tightness (went to ER fearing heart attack)
4. Wrists/ankles stiff in the morning
5. Most all pain comes on in evening, gets worse overnight
6. Pain gets slowly better with movement, stretching, hot shower so by the time I get to doctor I look and feel fine.

I found out about AS online googling my symptoms and finally took myself to Rheumatologist last year. He confirmed my self-diagnosis, and it seems like everything makes sense now.

A couple weeks ago, I had a flare that was so bad that even with a cane and help from my husband it took 15 minutes to shuffle (with tears streaming down my face) from my bed to the bathroom (20 steps). Had to have DH help pull my pants down and sit me on the toilet.

I decided to try to limit starch and sugar as much as possible, and it has made a HUGE difference. Hasn't even been a month and I feel like a new person.

Jmelynn - you've got nothing to lose, I really recommend giving it a shot!


dx Multiple Sclerosis in 2005 - tried Rebif, Copaxone, Gilenya; dx Crohn's in 2012
... question both dx above - think it may have been AS symptoms
dx AS 2019 - HLA B27+; radiographic evidence of bilateral sclerosis of SI joints
Currently using diet, +pre/probiotics, +fish oil, +tumeric. Medication and Pain free (at least for now)
Re: Spondylitis Symptoms - List Your Symptoms Here
ASin9pain #284316 06/20/20 10:03 AM
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What is the cold intolerance that is mentioned often? You feel more pain in cold weather or something else?

btw, out of curiosity and to try to stay objective to frequency of symptoms (as specific ones I have catches my eye more often and gives me a bias), I searched for over 100 keywords in the whole thread and grouped/listed them in accordance with their frequency of mentions. At 95 pages, with each page giving 10 posts, I weighted it to 950 despite some posts being not about symptoms. It is a very rough approach but still gives a good idea of how many times a symptom is mentioned.

You can check the result here: [img]https://ibb.co/HnxbBv2[/img]

Last edited by Onajourney; 06/20/20 01:51 PM.
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