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  • Daisy Mae
    replied
    I used to be told I have fibromyalgia, and I think they've pretty well confirmed that I do. But, I have an autoimmune complex which consists of 5 different disorders. I'm convinced they're all related. I have a blood clotting disorder, APS, and Reynauds. There was always a question as to what exactly was causing all the body pain and muscle aches. Sometimes it feels like someone's trying to literally shred the muscles right off my bones. I've been persisting by getting a complete workup by a rheumatology team that finally put a name to it. Turns out I'd had a scan (head to toe!) a few years back that the neurologists said was negative for reflex sympathetic dystrophy, which they suspected. They said a lot of areas lit up like a Christmas tree but it wasn't RSD. When the rheumatology team saw it and compared my records from neurology, hematology, urology, etc etc they said I have "Inflammatory arthritis, and connective tissue disease."
    So... now I have at least 5 INCURABLE DISEASES!!!! YIKES!!!! Scared? Yep.
    Trusting that the doctors can help and that God will get me through. Yep. Finally I'm on a treatment regimen and EVERYthing is being addressed. The new meds will take approx 6 weeks to start working, and the side effects are NOT fun, but will likely subside.
    I'm just SO tired of all the muscle pain. Please, please, follow that next lead. talk to the next doctor, whatever you have to do. Your story got my attentio because I've been having a hard time losing my grip and dropping things. Please let me know how things are going for you.

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  • ICNDonna
    replied
    A bone scan will not diagnose fibro. Fibro is diagnosed by evaluating discomfort when specific spots on the body are pressed. There isn't any real test that will confirm the diagnosis.

    Warm hugs,
    Donna

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  • waterflow
    replied
    I have and she keeps saying fibro. She hasn't done any tests to say it is fibro. That is why I was wondering if that bone scanning test would tell.

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  • ICNDonna
    replied
    You really need to talk to your doctor about your pain.


    Donna

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  • waterflow
    started a topic how do you know?

    how do you know?

    The all over body aching has gotten worse last few months to where the vicoden doesn't even help anymore. Only thing that does is a scalding bath and once that is over the pain is right back. I am wondering if it is arthritis instead? Both kind run in my family. Mornings are the worse and trying to turn the knob on my bedroom door to get out is sometimes almost impossible. I'm dropping things too. Would one of those bone density scan test tell which it is?
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