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: May 22

At age 22 in my senior year of college my hips started hurting. They hurt for 4-5 months, as best I can recollect. I walked a couple of miles a day to and from classes. They hurt when I got up from my chair and started walking; then it would gradually stop hurting. They also hurt in bed at night. I never took any medicine nor visited a doctor. Eventually it went away. Almost 2 decades later my first back X-ray showed fused SI joints, presumably from "sacroilitis". I guess that was it. My hip pain never returned, but the rest of my back hurt chronically until I was diagnosed with AS last month and got on medicine.

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Comment from: 35-44 Male (Patient) Published: October 24

I am a 42 years old ankylosing spondylitis patient. At the age of 28 I felt tiredness in the neck that later led to neck pain and stiffness. After 3 to 4 years, back pain started. At first I took Sazo 500 mg twice daily and then 1 gm twice. Now I have taken the 9th dose of infliximab (Remicade) 200 mg injection. My left eye has got reddish in color and I have a little pain and low vision and I am on treatment now.

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Published: July 01

Recently, my internist put me on a short dose of Prednisone that eased the pain quite a bit. Then I saw a rheumatologist who found a fusion in my sacroiliac joints and diagnosed Ankylosing Spondylitis. I was put on more Prednisone for several more weeks, and also on medication to allay the progress of the spondylitis. Of course, the meds have side effects to be aware of. Because I am of advanced age and new to this, I am trying to learn all I can. I may have had symptoms for a long time, but only until the severe hip pain that impaired my activities did I ever feel quite so challenged.

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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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Patient Comments

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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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