A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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CFS vs Idiopathic Chronic Fatigue

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by svetoslav80, Aug 22, 2011.

  1. justy

    justy Senior Member

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    Hi Svet, ive been mulling over your post since yesterday and reading the replies. I have to agree with Heapsreal and others who talk about their illness changing over time. When i was first ill 17 years ago i couldnt exercise at all for a few months and was bedbound for a while -couldnt even walk, then my ability to exercise came back and i could swim long distances and do yoga classes etc without getting PEM -although i did notice that i was not like others at exercise classes as i would have to go home to bed for a few hours afterwards to recover! I actually was quite fit at this point but i also noticed that even though i enjoyed exercise i couldnt increase my stamina or fitness levels - i was trianing at a level that would have made other people very very fit but i still felt out of condition. I was then lucky to have a remission to about 80% for quite a few years befor my latest crash 3 years ago. I can no longer exercise at all or even garden lightly due to severe PEM and also feeling like im going to collapse and die whilst i am doing the activity.

    Im beginning to think that a kind of pre M.E could exist where not all the conditions for a diagnosis are met but where it could develop in the future given another virus or other insult to the body. Dr Deckoff Jones discusses this idea in a blog post of hers (sorry cant find link)

    Those who say that they dont get PEM but feel ill all the time may actually be experiencing continous PEM and not realising that is what it is. For a long time i thought my activity level was higher than it was as i COULD push myself, it wasnt until having mitochondrial function testing done that i saw that my actual level i should be at was much ,much lower. Have you considered this kind of testing through Dr Myhill (dont know if shes taking on international testing referals anmore tho) it would be a good test to see if you are having the same problems as PWME.

    I guess one of the things i want to point out is that i worry for some people that they are in a kind of pre M.E state and that they will over do it and go full blown at a later stage.
    Take care Svet and i hope you find a way through this terrible maze.
    Justy.x
     
  2. svetoslav80

    svetoslav80 Senior Member

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    Thank you. No more money for tests. Time will show if I have ME or not. I hope not.
     
  3. ixchelkali

    ixchelkali Senior Member

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    I'm sorry, this must be very frustrating for you. Maybe you have atypical ME or maybe it's one of the myriad other conditions that can cause severe chronic fatigue. Not knowing is such an uncomfortable, unsettled feeling. But I think you're doing the best things you can under the circumstances: paying attention to what your body is telling you, exercising and eating a healthy diet, taking care of yourself, and most of all, trusting your instincts. I believe that you have a real, but as yet unidentified disease, perhaps an occult chronic infection of some kind. I hope that with time and care your body's own defenses will be able to overcome whatever is wrong, and you will recover. If and when they figure out what's wrong with you, I hope it isn't ME/CFS, but something treatable.

    In the meantime, whether or not you have ME/CFS, you have a community of people here who know how disabling severe fatigue can be, who can sympathize with what you're going through. We are here to offer our support as you continue on your difficult journey, even if you don't fit the strict definition of ME/CFS.
     
    justy likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I had a similar history to Justy--there have been periods of years when I was at 70 -80%, but since I crashed heavily in 2005, my symptoms have been full-blown.

    It may be possible to prevent this full-crash state with careful living habits and now, some of the new research. We hope!

    Best wishes,
    Sushi
     
  5. hope love light

    hope love light

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    Hi Svet,

    Thank you for sharing your story and explaining more about your illness.
    We all care about you and are sorry you are in the boat (of sorts) with us.

    Hugs,
    Hope Love Light
     
  6. sleepy237

    sleepy237 Senior Member

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    hey Svet. I don't think it is necessary that you will go on to have ME. I think you are doing what you can and it is good you have faith in your doctor. I think anything ending in
    itis means inflammatory condition, and maybe not eatiing high amounts of pro inflammatory foods could benefit. As for supplements I think co enzyme q is one of the best and vitamin c for anti oxidant properties. Best wishes. Sleepy
     

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