cfs????? help

Discussion in 'Fibromyalgia Main Forum' started by ANGELEO728, Sep 30, 2009.

  1. ANGELEO728

    ANGELEO728 New Member

    how do i know if i have cfs??? my doc says it's fm and i do have muscle pain, weakness and stiffness, but i am SO tired all the time and yet i can't sleep sometimes.
  2. AllWXRider

    AllWXRider New Member

    but no treatment plan. Sounds like your doc nailed the diagnosis.
    FM and CFS have a new name: ME = myalgic encephalitis.

    From Fatigued to Fantastic book by Jacob Teitelbaum MD, uses the SHINE protocol
    S = 8-9 hours of sleep
    H = Hormonal balance: DHEA, gonadal, pregnenolone, thyroid...
    I = treat infections
    N = Nutrition, consider vegetable juicing, get a juice machine
    E = mild exercise, keep the lymph fluid moving
  3. AuntTammie

    AuntTammie New Member

    AllWXRider, I am not trying to knock what you said, and I have read other thigns that you have written before that have been accurate and helpful, so please don't take this as an attack or anything, but this is really important:

    AllWXRider and Angelo, please do NOT go to the CDC for definitions (or anything else).....they have changed the definition so much that 38% of the people who are classified as having CFS actually have depression (this is according to a recent study - sorry I don't have the specific info to site it, but it has been on here and on pro-health, as well as other places) - obviously it's a very inaccurate definition and one of the reasons why so many of us have issues with the CDC (notice I said one of the reasons.....the CDC has done substantial harm to the CFS population - the name and the definition, the continued push to say that it is all psychological, the money that they have misused, etc, etc are all reasons why they are so clearly not working in our best interests at all - I think Hillary Johnson is the one who stated that the CDC has pretty much declared war on ME/CFS patients)....if you want a good definition look up the Canadian ME/CFS definition....much more accurate and, for that reason, the one that most patients (and Drs who actually understand ME/CFS) would like see used

    also, I have never seen M.E. (myalgic encephalomyelitis) used as a name for FM - though there is a lot of overlap, the majority of Drs and patients believe that they are two distinct disorders

    as to the SHINE treatment, it has a lot of merit (and is easy to rememebr, which is helpful), but if someone does have ME/CFS, the last recommendation has to be used with extreme caution....some people with ME/CFS can do some light exercise and some cannot do any (and for some it is actually very harmful - as caladonia said, PEM is a key marker of ME/CFS as opposed to other similar diagnoses)
  4. AllWXRider

    AllWXRider New Member

    no offense taken...after all I've been through...I'm a lot tougher than I use to be.

    The medical field is often way behind the research. By the time the AMA does their "peer reviews" and double-blind studies, it can 12 years out. Peer review sounds like politics too.

    As far as exercise, even the mildest movement, is essential to getting the lymph moving. Not that you do a Jack LaLanne routine but some kind of movement.

    The clear part of our blood is called plasma. It leaks past the cells inside the capillaries. It gets collected by lymph vessels and goes through lymph nodes. It depends on movement to get it flowing.
  5. jasminetee

    jasminetee Member

    It's very common for doctors to only know about FMS and not CFS. The following link takes you to the Canadian Definition of CFS. It's the best definition for CFS that there is right now. See how many symptoms here match yours and also tell us how you developed FMS, i.e. after a major accident etc...

    It is very common for people with CFS to be exhausted yet unable to sleep. Much more so than in FMS. Also people with only FMS are often able to correct sleep problems that do accompany FMS with medication while many of us with CFS find that we either can't handle sleep medication or it keeps us up all night or both.


    [This Message was Edited on 10/01/2009]