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Undiagnosed... where to go from here?

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  • 17-05-2010 10:00pm
    #1
    millimetres
    Registered Users Posts: 12 ✭


    I'm going to be a bit vague here because I don't want to bore anybody to tears.
    Long story short, I've got an as of yet undiagnosed illness. I've had it for just about a year now.
    We're talking headaches, pains in my face, chest, arms and sometimes my stomach and legs, twitches and etc.
    I've been to numerous doctors, had a lot of tests done and nothing's shown up whatsoever.
    It's become increasingly worse since it started and it has me ridiculously worried.
    Basically, I don't know where to go from here. I've been to so many doctors and all I keep getting are different forms of painkillers that haven't been having any effect. I suggested trying the hospital again for a retry on some tests, but I was warned that I'd just be wasting a lot of time.
    I haven't gotten out of bed for weeks now, apart from doctor's visits and the likes.
    Any suggestions as to where I can go from here?


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    #2
    kangaroo
    Registered Users Posts: 651 ✭✭✭kangaroo


    millimetres wrote: »
    I'm going to be a bit vague here because I don't want to bore anybody to tears.
    Long story short, I've got an as of yet undiagnosed illness. I've had it for just about a year now.
    We're talking headaches, pains in my face, chest, arms and sometimes my stomach and legs, twitches and etc.
    I've been to numerous doctors, had a lot of tests done and nothing's shown up whatsoever.
    It's become increasingly worse since it started and it has me ridiculously worried.
    Basically, I don't know where to go from here. I've been to so many doctors and all I keep getting are different forms of painkillers that haven't been having any effect. I suggested trying the hospital again for a retry on some tests, but I was warned that I'd just be wasting a lot of time.
    I haven't gotten out of bed for weeks now, apart from doctor's visits and the likes.
    Any suggestions as to where I can go from here?
    Firstly, I don't know what is wrong with you and I have no medical qualifications.

    But one diagnosis that could be looked at is ME also known as Chronic Fatigue Syndrome or Post-Viral (Fatigue) Syndrome.

    I went around for over 5 years before being diagnosed. I had pains in my jaw (TMJ) and all sorts of muscle pains around my body (I had over 100 physio appointments). By the end, I was in a state of collapse. A lot of people would reach a state of collapse more quickly - some people have a more severe onset.

    ME/PVFS/CFS generally doesn't show up in tests.
    And doctors regularly aren't on the look out for it.

    The M in ME stands for Myalgic (i.e. muscle pain). Muscle pain, and joint pain without swelling, are part of the CDC definition for CFS (need 4 out of 8 symptoms) (but a stricter definition is likely to be used in future. The pain can be sometimes be migratory. Sometimes people (incl. doctors) can think Chronic Fatigue Syndrome (the main term used in medicine now) doesn't involve much pain.

    So you could ask your doctors have they considered that diagnosis and if they have ruled it out, why. I heard the other day somebody was told by their GP they didn't have ME because their thyroid results were normal - which, of course, was a stupid thing to say.

    I'm sure there are plenty of other things that could be wrong with you. Maybe you could try to get idea what your tests have shown and go from there.


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