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: June 17

I am a 56 female. In 1979, I was a practicing nurse. I suffered a minor back sprain at work, and had to take some time off. For one year, I was tested for everything, had biofeedback, spinal tap and hospitalization. The pain varied from ache to severe shooting pain, radiating down the spine. I returned to work, but found myself not able to perform 100%. I had a brace and exercises, but no complete relief. One day I woke, finding I couldn't get out of bed. I was referred to a Rheumatologist. 5 weeks later, he decided to run an AS test. It was positive. Before this injury, I was always active. I enjoyed every sport. Now? If I could take a 200 foot walk, I would be thrilled. This has progressively impacted my life, to where I cannot enjoy a small gardening task, for fear of the pain returning. I have used Motrin, Naprosyn, aspirins and various OTC. If I take on a daily basis, I have other problems. If I start aching, I know it's time to use a drug, and pull out the heating pad. These will not take the pain completely away, but makes it more tolerable. In my family history, I have maternal great grandparents that lost a child to spina bifida. I also had a very mild case discovered at the same time the AS test performed, as well as my youngest son. Both of my sons have AS. I found swimming was a great exercise, as long as the water wasn't chilly. I avoid getting cold. For those suffering with AS, I can feel what you're going through. Above all, don't give up. I find things that work, rather than dwell on what can't work any more.

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Published: June 17

I remember my first symptom very clearly. I had a stiff neck (crick in the neck) that last about 6 weeks. It would not get better. I went to a chiropractor, he cracked my neck. It was awful. Eventually I went to a Rheumatologist who made the diagnosis.

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Published: June 12

I am a 40-year-old female. I was diagnosed with AS at 19. My symptoms started at 17. My back was so sore, and the pain just wouldn't go away. Eventually, a jolt of pain would go down my scaliatic joint from time to time. After a blood test and what seemed like so many doctors, I was diagnosed with AS. The information I got then has been so helpful. I try to use good posture, walk regularly, use pillows to support my legs and thighs when I sleep to keep everything aligned and try to keep rested. I do have bad times, and when I do, I have found acupuncture to be the best method of pain relief. Taking my anti-inflammatory medication also keeps everything at bay. I hope this can help someone out there suffering, especially at the beginning stages.

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Published: June 12

I was diagnosed with A.S. about 5 years ago. After 3 months of restless sleep I would wake up after 4 hours of sleep with chronic pain in my lower back. With movement the pain would gradually lessen. The Dr. prescribed a NSAID which helps alleviate the pain and discomfort. But I have to go back to the Dr. every 1 1/2 years to get a different prescription because it seems A.S. develops an immunity to it and the pain increases. Plenty of exercise and stretching helps the pain.

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Published: June 11

I am 55 now and I have had A.S. for 35 years. It started when I was 20 in 1973. My A.S. was very aggressive, and I went through the majority of my fusion within my 20's. The pain was unbearable for years. I live with the aftermath and sure it's common place. My biggest fear is atrophy. It is harder to regain your flexibility after a lay off of activity for whatever reason.

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Published: June 09

My son is 14 years old and seven weeks ago he started with an ear infection in both ears, fluid on both, no fever. On the day of his two week follow up he started complaining about his knee hurting (this was a Friday) he is a bicycle dare devil so I did not think much about it. Saturday morning his knee was swollen (bigger than a softball) and extreme pain. I made him get off of it and elevate it. That night he started with a fever lasted all weekend went to the Dr. Monday and he sent us to All Children's hospital immediately they kept him for 3 days pulled fluid off the knee and tested for bacteria and by request of our Dr. they tested for the gene, he came back positive for the gene but because they brought the swelling down and the pain lessened a lot they sent him home and said it was reactive arthritis due to the ear infections, even said he could go back to school that there should not be anymore flare-ups and if there was then they were wrong. Next day went to school by the time he got home his foot started hurting severely, he could hardly walk. The doctor's office was closed so I was there when they opened. Dr. sent us to a rheumatologist but could not get an appointment for 4 days the fevers stayed low but they stayed the whole week. It has been 5 weeks, he took prednisone for 7 days and there was no changes and now he has been taking sulfasalazine in addition for 7 days, today I rushed him back to his primary because his foot swelled really bad and now he is starting to get pain in the other knee, he is on the verge of tears from the pain and is using crutches to get around the house. In 5 weeks there has ben no relief in fact it is progressing the rheumatologist is starting him on Methotrexate.

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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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