Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Chronic fatigue/ME or something else?

Discussion in 'General ME/CFS Discussion' started by donovank730, Feb 12, 2016.

  1. donovank730

    donovank730

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    I just came back from my second trip to the mayo clinic in rochester, and I am still don't have many answers. After being sick for 4 years I am starting to wonder if the pain I am experience is being generated in my mind rather than do to some external physiological process.

    I do not have classic CF/ME. I am not tired during the day, exercise does not exacerbate my symptoms.

    What I do have is
    slight immune deficiency(hypogammaglobulinemia)
    Insomnia(tired/wired)
    Joint pains without inflammation(fingers/elbows/knees/toes)
    severe food intolerances/ severe constipation(diagnosed with slow motility and pelvic floor dysfunction)
    prostate pain/urethral pain
    geographic tongue/mouth ulcers
    lymph node pain
    and many other weird things

    I have never any lab work that showed an elevation in inflammatory markers or ay evidence of an auto immune condition. The only visible manifestation of my symptoms is my ragged looking tongue and skin rashes(folliculitis/acne)


    I am at a loss on what to do from here honestly. Mayo clinic was my last resort and that was after seeing 15 specialist. I am fairly convinced that no one will be able to properly diagnose me.

    I have been tested for everything under the sun and it is all very normal(lyme 4x).


    Has anyone had similar symptoms and have you received any improvement from treatment of any kind??
    I am currently taking very high dose curcumin in an experiment treatment to block cytokines, incase this is the cause of my symptoms.

    Thanks everyone
     
  2. Mary

    Mary Senior Member

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    Southern California

    Have you seen a naturopath? Most MDs know nothing about nutrition and I would not trust the Mayo clinic for anything (see their worse than useless webpage re CFS/Me)
     
  3. searcher

    searcher

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    SF Bay Area
    Have you been tested for a mast cell disorder? MCAS could potentially explain most and possibly all of your symptoms.
     
  4. JaimeS

    JaimeS Senior Member

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    Mid-Ohio Valley, United States
    I would say that just because people are having trouble finding it does not mean that there is nothing there. We make the mistake of presuming that medicine has all the answers, and we just need to locate the right practitioner who can unlock what is happening in our bodies; but the truth is that we as human beings do not yet understand the way that the human body works very well. I'm not saying to give up on finding out more; I am, however, saying that you should not presume that it's 'all in the mind' because physicians are having trouble diagnosing your illness(es).

    I doubt you would do this to yourself.

    -J
     
    Art Vandelay, roller, alkt and 3 others like this.
  5. donovank730

    donovank730

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    I was in fact tested for mast cell disorder, thank you though.

    I am ready to try and give up thinking about this illness in my life and try to move on however possible/
     
    searcher likes this.
  6. jadam914

    jadam914 Foggy member

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    Palmyra, Pa, USA
    It doesn't seem to fit ME. I don't know about CFS with the ever fluid and mutiple definitions. Hey, I don't have a medical degree though. If it was me I would find a D.O. Doctor of Osteopathic if you have already been through a lot of different specialist and tests.

    Don't think it's something psychological though and don't say that to a doctor. Psychiatry has demeaned lots of physical conditions through out it's history and continues to today. You have physical signs and know something is not right so listen to your gut.

    My mother knew she had something wrong and dismissive doctor's till she had a gastric bypass done and they surprisingly found a 7lb tumor. They called in other doctor's to look at it and remove it. Doctor's are people too and they can miss things and don't always have the answers.
     
    Last edited: Feb 13, 2016
    JaimeS likes this.

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