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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?


Community Answers
  • chuzzy
    2 months ago

    I had a fusion several years ago from Degenerative Disc Disease. There was incompetence in my aftercare and so I thought all of my problems were from it. I didn’t know any different until I was looking at my diagnosis on my paperwork one day and saw AS. Then I started researching it. Then I got depressed by what I found. So just this year i have found out it’s AS. After I found out I asked my pain management Dr to refer me to a rheumatologist. She still hasn’t done this. I go tomorrow for testing to see if nerve ablation will help with pain.

  • Lawrence "Rick" Phillips moderator
    2 months ago

    Chuzzy, I am glad you are moving toward seeing a rheumatologist. I absolutely value my rheumatologist and if you find one you really connect with it can be a wonderful relationship.

    I hope your pain management doctor will be helpful with injections. I know many who find great comfort from a professional pain management doctor.

    Thank you for joining us and sharing your experiences. I hope you will keep us updated, as we are always interested in how things are going.

    Rick (Site Moderator)

  • TheNudeWriter
    5 months ago

    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.

  • Anthony Carrone moderator
    5 months ago

    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)

  • TheNudeWriter
    5 months ago

    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.

  • Anthony Carrone moderator
    5 months ago

    Hi @TheNudeWriter, 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)

  • Brooke Abbott moderator
    5 months ago

    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.

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