Patient Comments: Ankylosing Spondylitis - Symptoms

The symptoms of ankylosing spondylitis can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Published: July 02

I am a 57-year-old female and didn't know I had ankylosing spondylitis for about 20 years of symptoms. I just thought I was being overly sensitive. In my 20s I suffered with low back pain, and in my 30s, my neck really started bothering me. I think it helped that I always lived an active lifestyle. In my 40s, I was sometimes unable to walk with the hip pain, and I self-medicated with ibuprofen. It wasn't until a bad case of iritis that I was finally diagnosed with ankylosing spondylitis. (I have the HLA-B27 gene.) Life has been better since then, as I know what I've got and I try to manage the pain. I'm on Naproxen, which I take 500 to 750 mg per day with meals. For me, the key is to stay as active as possible. I work full time, but occasionally call in sick so as to get a little extra rest. When I'm in bad pain, I lie down flat for an hour or so, then I can get up and do some more activities. As a very active person, I hate having to pace myself this way, but it is necessary. Regular monthly massages seems to help with my flexibility, and I have a stretching exercise routine which I do two to three times a week and should do daily, but work, community involvement, family and other interests sometimes interfere. My advice is to keep active, keep positive and focus on what you can do.

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Comment from: sarah, 45-54 Female (Patient) Published: May 30

The symptom of ankylosing spondylitis was pain in my rib on the left side of the body.

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Comment from: SAMSUDDIN, 35-44 Male (Patient) Published: April 22

I am 40 years old. I am a patient of ankylosing spondylitis. My blood test HLA B27 was negative. Then retest of HLA B27 was also negative. I take Sazo 500mg twice a day and methotrexate 15 mg weekly. I take infliximab 200 mg 7 times. My pain has been low for one and a half year. But my pain has started again now.

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Comment from: 35-44 Female (Patient) Published: April 01

My symptoms of ankylosing spondylitis are neck pain and left hand pain.

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Comment from: Cade, 25-34 Male (Patient) Published: March 14

I have had ankylosing spondylitis (AS) since I was 20. I was diagnosed at age 26. Now I am 41. I"ve a question for anyone. I"ve taken MS Contin and oxycodone for pain on top of Enbrel. Enbrel works wonders for everything from the waist down, iritis and other fringe benefits of AS. I wish that I had never started taking narcotics. MS Contin messes with your REM sleep via sleep apnea etc. I quit taking MS Contin and have been clean for a week. The week has been awful. Now I want to quit oxycodone. I tried for one day and I felt like my back was on fire. I wonder if this is my AS or my withdrawals.

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Comment from: sherri, 35-44 Female (Patient) Published: February 20

I was diagnosed with HLA-B27 back in 2008, after a battle with my eyes. Now it's been 6 years and I am having issues with my index fingers swelling up all the time; I cannot bend them. I went to the doctor and they told me it was because I overworked the muscles in the joints. It has been 3 weeks and nothing is getting better. I am unsure where to turn to next.

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Comment from: Niah, 19-24 Female (Patient) Published: February 18

Have you ever seen people with arthritis that only attacked the tendons? After a year of tendon pain in my feet and right knee as well as costochondritis, and a history of unexplained wrist tendonitis in teen years, I just got diagnosed with ankylosing arthritis and possible psoriatic arthritis. Prednisone helping a little then starting methotrexate afterwards. I"m 24 and I have so much stiffness and pain in knee and foot tendons I can hardly walk. He (my new rheumatologist) says methotrexate will help, but I wonder if it can help the tendonitis/enthesitis pain. I"m confused because I always thought arthritis attacked bones and my bones are all fine.

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Comment from: stillinshock, 55-64 Female (Patient) Published: October 18

I have had back pain most of my life. I'm almost 60. I've had stiffness in joints, terrible temporomandibular joint pain (TMJ), and a lot of these were never diagnosed. I fell really hard about 8 months ago and broke my L1 vertebrae. I keep having a lot of pain in my buttocks, hips and lower back and just assumed it was from the fall. I got the shock of my life yesterday when I was told my S1 hip area is all fused together and I have ankylosing spondylitis. This really explains a lot of what I've been through.

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Ankylosing Spondylitis - Treatments Question: What was the treatment for your ankylosing spondylitis?
Ankylosing Spondylitis - Experience Question: Please describe your experience with ankylosing spondylitis.
Ankylosing Spondylitis - Severity and Progression Question: Do you or a relative have ankylosing spondylitis? Please share its progression, along with treatments.
Ankylosing Spondylitis - Diagnosis Question: What tests led to a diagnosis of ankylosing spondylitis?

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