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 25

I had back pain starting at age 16. But I was in my late 20's-30's when I developed TMJ and a stiff neck that would not let up. I went from one dr. to another. I went to PT for over 3 months to get my neck and shoulder unfrozen. This is when I was diagnosed with AS. I have flares at least twice a year that leave my barely functional. The last one lasted 6 months and I had to quit my job. But it seems the more rest I get the quicker I come out of a flare. This is just my observation.

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Published: June 25

Having back pain sometimes so badly that I would not even be able to move at all. Immobilized on the bed I need to wait for up to two mins before I can slowly move my body again. The extreme pain usually comes morning when waking up and happens something like 5 to 6 times a year. Normal days are just some light pains felt sometimes at shoulder blade, neck. Etc.

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Published: June 20

From childhood when I would walk for more than 10 minutes at a time, my low back around my sacrum would really hurt. That has never gone away. Over the past 5 years my neck would constantly hurt and I got migraines. I developed light sensitivity, my eyes almost always hurt. In the last year, I started having pain in my rib cage and trouble taking deep breaths. Then my sternum area hurt so bad I though I was having a heart attack. Now my feet and ankles hurt and get stiff. I just started seeing a rheumatologist two weeks ago and started on prednisone. I have found some relief, but yesterday I did some light exercise and all the inflammation and pain and stiffness came back. By the way...in the past year I have been diagnosed with Chrones and Hashimoto's Thyroiditis. I guess it is all connected. I am only 35 yrs old, female.

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Published: June 18

Mine started as severe leg pain and pain in the sacral area when I was just a child. It felt like my hip had dislocated. I could not walk let alone move my leg or even both at one time without use of my arms. I was going to chiropractors for years. A simple fall would bring all the symptoms back. I could hear and feel clicking when I walk and had to use a foot rest while sitting in chair even in college. I am 4 foot 10 inches tall and most times my feet hung. I am surprised that I haven't had many problems lately. I am 50 years old now, but I am on a strong pain reliever. One problem that has occurred is that my thumb has locked up and I cannot bend it. My doctor told me to make sure I sleep in a straight line on my back with a very minimal neck pillow.

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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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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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