Looking to chat with someone similar to me CFIDS

Discussion in 'Fibromyalgia Main Forum' started by theatergirl, Jul 1, 2008.

  1. theatergirl

    theatergirl New Member

    I have been full blown CFIDS for 12 years. Brief history, got CMV Guillian Barre in 1978, paralysed then with relapsing episodes for several years declining in frequency and strength. Got CFIDS in 1996, was bedridden for almost 1 1/2 yr, now relapsing and remitting. I am 55, female.

    Since the guillian barre affected peripheral nervous system, now with relapsive episodes I am housebound and walk with assistance for around 2-3 mo. depending.

    I have a very passive doc, sympathetic but that's all, at Kaiser. I do B-12 shots and supplements.

    I need to touch with someone similar to see how you are coping with relapsing/remitting and being sick at least 3-4 mo every year, bedridden completely during that time. I have severe neuro difficulties, walking.

    Thanks for any help and guidance,
    [This Message was Edited on 07/01/2008]
  2. msbsgblue

    msbsgblue Member

    Welcome to the board. I know someone will be by to help you. I have FM/CFS but not exactly like yours.
  3. Marta608

    Marta608 Member

    Jackie, I'm not sure any of us have exactly the same CFS as someone else, but most of us here with CFS live similar lives. As for me, I think that being sick "only" 3 - 4 months a year instead of 12 would be marvelous!

    I just posted a topic about a book I bought called Defeat Chronic Fatigue Syndrome by Martha E. Kilcone which might interest you. In it she refers to Understanding Our Own Version of CFS and I think that's right on target. Since each body is different, each CFS will differ too, in some aspect. The commonalities are the fatigue, problems with sleep and cognition. Other people have added symptoms as well, like pain.

    Someday I hope this will all come clear so our children and grandchilden don't have to live with this, or at least not for long. Until then, we mostly muddle through as best we can.

    There are people on this site who are a whiz at research and have made a bit more progress. I hope you hear from them but it you don't now, you will see the posts over time.

  4. theatergirl

    theatergirl New Member

    My culprit is cytomegalovirus, but it has been in my body and was initially activated in 1978. I believe it no longer functions or looks the same, fragmented now instead of whole. Not sure if antivirals woulod work...but thanks for the naturopath suggestion. Sacramento CA does not have every many "good doctors" unfortunately.

    I may try your suggestion.

    [This Message was Edited on 07/03/2008]