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Re: Spondylitis Symptoms - List Your Symptoms Here [Re: fall_of_moonbeams] #282143
11/26/18 11:55 PM
11/26/18 11:55 PM
Joined: Nov 2018
Posts: 6
PA
J
Jg19446 Offline
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Jg19446  Offline
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J

Joined: Nov 2018
Posts: 6
PA
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 [Re: fall_of_moonbeams] #282144
11/26/18 11:58 PM
11/26/18 11:58 PM
Joined: Nov 2018
Posts: 6
PA
J
Jg19446 Offline
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Jg19446  Offline
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J

Joined: Nov 2018
Posts: 6
PA
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 [Re: fall_of_moonbeams] #282223
12/15/18 11:39 PM
12/15/18 11:39 PM
Joined: Aug 2018
Posts: 15
PA
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Kracker55 Offline
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Joined: Aug 2018
Posts: 15
PA
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 [Re: fall_of_moonbeams] #282490
01/23/19 02:41 AM
01/23/19 02:41 AM
Joined: Jan 2019
Posts: 5
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iache Offline
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iache  Offline
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I

Joined: Jan 2019
Posts: 5
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 [Re: fall_of_moonbeams] #282762
03/13/19 01:48 AM
03/13/19 01:48 AM
Joined: Feb 2019
Posts: 1
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Jmelynn Offline
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Jmelynn  Offline
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J

Joined: Feb 2019
Posts: 1
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 [Re: Jmelynn] #282764
03/15/19 01:59 PM
03/15/19 01:59 PM
Joined: May 2010
Posts: 1,504
Whidbey Island WA
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WhiteCell Offline
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WhiteCell  Offline
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Joined: May 2010
Posts: 1,504
Whidbey Island WA
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. =)


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
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