gaphysc why do you think you do not have cfs?

Discussion in 'Fibromyalgia Main Forum' started by hensue, Oct 29, 2009.

  1. hensue

    hensue New Member

    I am beginning to wonder that also. I have fibromyalgia and post extern malaise??
    Fatigue but my immune system is not down per say. I have the headaches, Ibs, never know from day to day how I feel.
    I do not have fevers, I have days with energy but know cannot do to much. or I will pay.

    How about other fibromyalgia are you in this group? Do we have fms and cfs. I am not in bed everyday either. I can not go out everyday.
    It is getting confusing about the cfs.
    Gotta go watch webcast.
  2. spacee

    spacee Member

    Just my twin's and my experience. She ran a fever, I have low temp. My labs show my immune system is "low" but Dr. Cheney has always said that we are "upregulated" (means we are fighting something) and usually don't "catch" things. I am like that.

    Despite our difference of fever vs low temp, both of out t-cell counts went low. Her's to 320 and mine to 185. When she recovered her's went back to normal.

    I have the tender trigger points but feel I have more CFS than FM because I haven't had what seems to be the FM pain. Getting more acheyer as I get older but seems to be more arthritic.

    Just a bit to add to your confusion!!
  3. gapsych

    gapsych New Member

    I just think my illness does not present itself as other's who have CFS. I never had a virus/flu nor swollen glands. I do get PEM, flu like pain, IBS and I think IC.

    Throw in the fact that there are different definitions of CFS and you have a very confusing picture.

    I am going to a half day seminar presented by a rheumatologist and physical therapist on arthritis and Fibromyalgia this Thursday. I think this would be a good question to ask.

  4. hensue

    hensue New Member

    Fatigue, headaches like I have never had before, Pain all over if my heart rate goes up over a certain amount, IBs burning like crazy urinary tract but no infection. Joints will swell in fingers and hurt. Swelling in legs severe on days really bad. The biggest symptom cannot sleep unless medicated

    The days I have what I call a flare my voice is weak, pain all over headaches, throat hurts like the flu you can barely move.
    Anyone that knows me will say you are hurting today right? Just from my voice, so there has to be common areas there and severity.

    Have you had the epstein barr virus and herpes?
    I have and others

    Is this Cfs?

    [This Message was Edited on 10/30/2009]
  5. spacee

    spacee Member

    That is what my doc likes to say about me.

    Ok, with the mini outbreak that the 4 of us had. No "came down with a flu that never left". No one. Three of us had too rapid heart beat, a couple of us panic attacks, I have the bladder thing with no infection (NADH which is sold here stopped that, thankfully. Pricey though). My voice would be weak in a flare. On the phone people would say "are you ok?".

    My sis had the insomnia from he**. But could not take anything for it. You may recall that she recovered.

    I have read that headaches of a new type and severity is a classic symptom.

    Some of your symptoms, though, sound like autoimmune.
    Dr. Cheney says that he has never had a case of "classic" CFS to to lupus. Dr. Bell says that CFS has a component of connective tissue (autoimmune) problems. So, I think that Dr. Cheney has had patients test positive for autoimmune but never goes into it as the major thing.

    I can definitely see why you are eager to get tested for XMRV. This not know can really drag you down. Not knowing a lot of stuff was for me too in the first 10 years.

    I would say that in the last two years the autoimmune and the viral titers are both very elevated.

    It is perplexing. It is like the ones who find out they really have lyme or that toxic mold is the issue they need to deal with. From what I understand of the XMRV discovery is that it is the same virus but our immune systems react to it differently. Which does not explain the Lyme. But there you are.

    I am currently doing an antibiotics protocol for mycoplasms. I have never been tested for them but they think they are involved in a lot of chronic illnesses (Gulf War, RA).

    You do have to find your own way in this madness to some degree. I have been tested for I am not toxic to molds. You see, it is a matter of being aware and eliminating what it is not...for some of us.

    ((hugs)) Hensue,

  6. hensue

    hensue New Member

    My doc has tested me for lupus numerous times. From what I read though all these things can be fibromyalgia.

    All this testing for virals was done about 12 years ago when I first diagnosed fibro.

    I have been tested many years ago by Garth Nicholson I think that was his name and I tested neg for mycoplasma.

    I would like to know I thought these were pretty common symptoms for fibro?
  7. spacee

    spacee Member

    And the symptoms (to me) sound like what the Fibro people have talked about on this board over the years. When you read this over and over since 2002, you do see the same symptom grouping show up. (Of course, I am no doc.)

    Autoimmune can take years to develop. I had a positive ANA in my 30's (after CFS..wasn't tested before). And it has take to age 58 for the titers to go way up.

    I am eager to find out how all of this puzzle fits.


  8. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    It took me a while to figure out for sure I have CFS (well, much shorter than many of you, but not immediately) because I never had weight gain, in fact I had weight loss. And my lymph nodes were never swollen. I never had the sore throat. Well, I have, as the illness progressed, sometimes gotten a mild sore throat.

    I was reading in Osler's Web that when the illness spread in Incline Village, some people had more of the neurological problems than the fatigue.

    It all is different in each one of us. That is why doctors think we are making it all up. In fact, I read the Wikipedia entry for CFS to my husband early on while I was doing research. It listed all the possible symptoms. He interrupted me and said, "No wonder doctors think it's not real, I could go in and say my toe hurts and it would be a symptom of this. Everything is a symptom of this."

    Well, that was an exaggeration. But point made.

    I never had the allergy or chemical sensitivity problems.

    I had some vertigo, later in the illness. But some have the vertigo as their worst symptom, see oh, just had a CFS moment... Laura Hillenbrand, is that her name? I am talking about the "Seabiscuit" author.

    Researchers are now classifying CFS into categories based on the symptoms. Their thought is maybe its four different illnesses with the same name, or four different causes of a dysfunction in the multiple systems that represents differently.

    So I know this may not help you in figuring out if you have it for sure or not. I know what convinced me.