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 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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Published: June 09

I have been suffering from Ankylosing Spondylitis from last 2 years, so till now I have not got any proper treatment. I have a problem in my hip, when I am walking or standing for a longer period of time, then the pain starts and while sleeping at times, when I want to change my position from one direction to other direction, at that time I face many problems. And that pain is transferring from one part of the body to the other part of the body. So, I am in search of proper treatment. In Nepal, Doctors are telling me that if you will go to any part of the country, then also I will not get proper treatment. So, I am totally confused what decision I have to take.

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Published: June 09

At the age of 17 my knee just unexpectedly went out of place my family doctor did not know why...tendonitis he said...I had been tested for R.A. and came back negative...I suffered from extreme stiffness in my neck and back. My knees would get so swollen I couldn't walk my DR again thought I might have Osteo Arthritis but I was prescribed lots of medicines none helped at age of 22 I became pregnant I thought I was seriously going to die because I was not going to be able to have this child with out taking OC NSAID's but thanks to God I went through my whole pregnancy drug free and some mild pain that I was able to get through after 5 months after giving birth to my son I started getting the inflammation in the elbows and knees again and still I could not move my neck as much everyone would ask me "Do you have a crick in your neck “I felt like telling them to shove it. I was in so much pain....last year in October I noticed extreme swelling in my ankle as if I had sprained it my heels were hurting I went to my family doctor again he tested me for Gout and for Rheumatoid Arthritis all negative I think he finally gave up on me after all I had been experiencing this pain and inflammation for about 8 yrs he referred me to a rheumatologist one office visit 30 x-rays later and blood work determined I carried the gene for ankylosing spondylitis. My family has no history of any kind of arthritis either side. I am a female as you may know by now. I have lost all mobility in my neck. I cannot squat, run or walk for long periods of time. I do not wish this on anyone as soon as your in doubt go get it checked out.

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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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