Patient Comments: Ankylosing Spondylitis - Treatments

What was the treatment for your ankylosing spondylitis?

Comment from: helenb, 55-64 Female (Patient) Published: May 20

Recently, I was diagnosed with inflammatory spinal disease. I have suffered on and off for years with back problems starting in my early 20s when I was told it was sciatica. I also suffered for years with excruciating spasms between my shoulder blades, for which I was given quinine sulfate but no diagnosis. I also suffered from hip pain off and on too. After putting up with lower back pain for many years, receiving painkillers, and anti-inflammatories, I finally asked for a referral to a rheumatologist. This happened for two reasons: my daughter started suffering from the same “between the shoulders” pain and was referred very quickly; and due to the fact that I had had to take off lots of time from work because I couldn't move because of the pain and, literally, my legs wouldn't hold me up. My daughter was told she had the HLA-B27 marker and that it was hereditary. This is the main reason I asked for a referral. It was confirmed that I have AS with bone spurs attached to the next vertebrae in my lower back and between my shoulders. I was assessed by a physiotherapist a few days ago, who told me I also have a scoliosis on my right side. So glad my daughter is receiving the help I wish I had received years ago.

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Comment from: thush, 35-44 Female (Patient) Published: October 31

My first symptoms of ankylosing spondylitis started when I was 24. I got this terrible pain behind my ears. When I went to my family doctor he said I am getting my wisdom teeth. But I never did get any wisdom teeth. After 6 months I got a back ache, then stiff neck. I consulted a doctor, and he gave me some pain killers and I was ok for about 4 months. Then I got a red eye and my eye specialist gave me some drops. Then I got this unbearable neck pain again. I told my doctor to do all possible tests. He took an X-ray of my neck and said I have cervical spondylosis plus extra upper rib. After two weeks I went to see the same doctor since I developed a pain on my heel. He said it's impossible, he told me to continue with my exercise. Nothing helped, doctor after doctor, I was feeling that I have fever, but no temperature. My blood test shows that I am anemic so my family doctor gave me iron tablets. I have to say I am a vegetarian so my family and friends said it's due to it. For last three years I feel tired all the time. But I manage to do all my work still doing it. Last year my right eye got red again so I went to see eye surgeon. She gave me some medicine, and I was ok. But within three days I got it again. My eye doctor said to stop my shampoo, etc. And gave me some more drops. Again I got a red eye within two weeks , and this time my eye doctor asked if I have any back pain I said yes, and she asked me why didn't I tell her beforehand (how am I supposed to know there is a link). I was referred to a rheumatologist .Now I know it's not my mind. At least I am mentally OK though I am depressed. Only thing that helps me is pain killers, heat pad, sleeping on the floor, flat surface. I do exercises regularly. I don't get proper sleep.

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Comment from: Z, 25-34 Male (Patient) Published: March 30

I injured my sacrum when I was 15. From then until my AS diagnosis at 28 my pain became progressively worse. I remember at 24, there was a spike in pain and (looking back) the start of noticeable AS symptoms. It is so embarrassing being so young and not able to move like everyone else. Or you cannot go out on Friday night because you literally cannot get out of bed. I follow the paleo diet, avoiding starch at all cost. Tremendous helper. I have also been following the Marshall Protocol for the last 6-months to treat my AS. I went from being so stiff I could barely get out of bed-to-only needing 200mg of Advil every 24 hours to keep my inflammation down and live my daily life. 1 day after starting marshall protocol, my inflammation noticeably decreased and my left Si slid back into joint when I got out of bed. Up until then, we thought it was fused.

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Comment from: citycowboy, 25-34 Male (Patient) Published: March 20

I was struck down with ankylosing spondylitis at 24. It hit me over night, the worse pain I have ever experienced. I am now 33 and still suffer chronic back pain just about every night. I am lucky to get 4 solid hours sleep a night and sometimes I just don't get any as the pain is unbearable. I saw the specialist and was put on mobic - these didn't even ease the pain, I was told about an injection (daily) and I am yet to be put on this treatment!!! I feel for anyone who goes through the pain I do, I wouldn't wish this on my worst enemy and believe me I hate the pr*ck!!!!!

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Patient Comments

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Ankylosing Spondylitis - Symptoms Question: The symptoms of ankylosing spondylitis can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
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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