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: nanaplus11, Female (Patient) Published: August 28

With ankylosing spondylitis I have pain in my left buttock and it then goes down the back of my left leg to my ankle, and now I have a very stiff painful neck and shoulder pain.

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Comment from: Lady in Pain, 55-64 Female (Patient) Published: July 15

I wish someone could tell me what I have! I'm a 55 year old female. I was diagnosed with rheumatoid arthritis (RA) in 2000. I was treated with Cymbalta, Celebrex, methotrexate, Arava (leflunomide), Mobic, prednisone, the list goes on... And as for pain medications, Dilaudid, Vicodin, fentanyl, Fentora, oxycodone, OxyContin, MS Contin, etc. I'm still in pain, I've had both knees, and my hip totally replaced, and my shoulder repaired. Now I just found out I have bone spurs on my spine in 5 places, and I have 9 nerves that are being suppressed. Before I started taking pain medications, I was walking with a cane. With the medications, I can walk without it, but I'm still in pain. I went to a rheumatologist last week, and he said I don't have RA! It seems as though I have symptoms of ankylosing spondylitis (AS). I guess I need to be checked for it.

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Comment from: momof6, 25-34 Female (Patient) Published: June 23

I am a 34 year old single mom with ankylosing spondylitis (AS). I can hardly walk at times and I am in terrible pain 24 hours a day. I work full time night shift as a certified nursing assistant (CAN). I barely can do my job, it takes all I have to go to work. I roll myself on my kids' bike or walk with their pogo stick just to get to my car. I am in so much pain. I cry every day, it is so unbearable. I am sorry if anyone else is going through this. You're not alone, stay strong.

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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: 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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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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