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I have all the symptoms of spondylitis - chronic back pain that improves with movement/exercise but worsens with rest, regular flares, peripheral joint pain, and myofascial pain. It all kicked off with chronic low back pain and a diagnosis of chronic sacroiliitis when I was 27. I'm 51 now, and still no diagnosis, in spite of having chronic pain off and on for all these years, which has gotten markedly worse since I reached menopause. I'm being gaslit by doctors who are gobsmacked that I'm asking… read more
Amelie, I'm so sorry that you're going through this. Ignore any doctor who thinks you shouldn't be getting a proper diagnosis because you've suffered for so long! You must take care of yourself and advocate for yourself. There are lot of rheumatologists out there -- one of them will be the right one. Just don't stop till you find them. Your symptoms certainly align with what the rest of us deal with on a daily basis. Search for "rheumatologist" "axial spondylitis" and see if you can find someone who specialises in this particular disease. But please don't give up. There is help out there, and you deserve a good life.
Thanks, @A MySpondylitisTeam Member. I keep fighting, but the longer I'm in this fight, the less respect I have for the medical community. There aren't any rheumatologists who specialize in AxSpa anywhere near me. Rheumatologists in general are tough to locate here. Everyone deserves a good life - chronic pain is a real quality-of-life killer!
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