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How long did you experience symptoms before being diagnosed?

Many people have experienced symptoms of AS for quite some time before being diagnosed. Some were misdiagnosed, others dismissed as simple back pain. What was your experience like?

  1. I was a year into my post IBD surgery life, when I started to have crippling back pain. And pain in my butt, hips and thighs. There were days I couldn’t even walk or drive my child to school. It was a very frustrating time.

    1. I was diagnosed when I was 22, but I first felt something was wrong probably when I was 16. Initially I didn't worry too much, but when I was 18 I took my health seriously. After diagnosises of Fibromyalgia and chronic fatigue, I was finally handed my AS diagnosis.

      1. Hi , I'm sure it was somewhat of a relief to finally get an accurate diagnosis. So many people are dismissed or misdiagnosed for a long time. How have you been feeling recently? -Anthony (Team Member)

    2. I lived with IBD for many years. Because I would experience severe back pain when going to the bathroom, I thought, that my everyday morning back pain was from that. I had complained about it, but was told I had RA. Then that I had Psoriatic Arthritis. It wasn't until after my colectomy (colon removal) and getting a new GI, that he said he suspected, AS and referred me to my now Rheumatologist.
      -Brooke
      (Team Member)

      1. Hey Anthony, thank you for asking. I've actually been pretty bad for a few years. All my medications made me sick and I've been trying to cope. 8/10 pain has become my baseline.

        1. Coping with 8/10 pain seems nearly impossible, especially when medicaitons are making you sick. I'm sorry to hear you've been dealing with it for so long. Have you found any coping mechanisms that help you? -Anthony (Team Member)

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