Quick questions

Discussion in 'Fibromyalgia Main Forum' started by isiselixir, Jul 23, 2009.

  1. isiselixir

    isiselixir New Member

    Do you have ME/CFS, FM, or both AND did you have a gradual onset or immediate onset?

    me: ME/CFS, gradual onset
  2. greatgran

    greatgran Member

    CFS/FM so they say as I doubt my dx so often.. Immediate onset, all started with a vertigo
    attack... haven't been the same for 8 years..

  3. debilyn

    debilyn New Member

    This may be a silly question, but I honestly don't know answer:

    Are FM and CFS the same thing? Can you have one and not the other? I have FM, but I'm not sure whether I have CFS. My doctor uses the terms interchangably and has written my dx as FM/CFS.

    Yet, I don't have swollen lymph nodes, don't suffer from fevers. I did show some EBV and HHV6 activity, but I don't think it was huge. I took Valtrex for six months, but never really suffered eccacerbated symptoms or herxxing. I'm not sure if I have CFS.

    For me, the onset of chronic pain and unrestorative sleep started in fall of 2006 after I had been to Guatemala and contracted an ameoba, and during that same month, I had very upsetting/stressful personal stuff as well as two car accidents.

  4. isiselixir

    isiselixir New Member

    From what I understand CFS and FM are two separate conditions but some folks have both. Also there are overlapping symptoms as many with CFS have pain and many with FM have fatigue, for example.
  5. shari1677

    shari1677 New Member

    I am 42. I was diagnosed with FM 5 years ago. I had what the doctor called a "relapse" in October of 2007. I dont think this was a relapse. I think it was ME/CFS.

    Though my activities were cut drastically after being diagnosed with FM, I have been in a literal state of being homebound since my "relapse" in October of 2007. I have never recovered.

    Of note, my doc says ME/CFS and FM are one in the same, though I disagree.

    Is treatment the same for both?
  6. karynwolfe

    karynwolfe New Member

    To isiselixir:

    ME & FM.

    Acute onset of ME, gradual onset of FM.

    To the others:

    FM is a pain syndrome with many other accompanying symptoms such as fatigue, irritable bowel syndrome, and sleep disturbance; biological markers exist such as excess Substance P in the brain, and tender points that aid in diagnosis.
    CFS today is a syndrome based on fatigue with any combination of other accompanying symptoms; named "CFS" by the CDC in 1988 after what was actually an M.E. outbreak; they're incorrectly used interchangably today.
    M.E. is a neurological disease with autoimmune components, accompanied by cardiac insufficiency, and mitochondrial dysfunction.

    FM is helped greatly by gentle exercise/stretching, and specific types of pain medication such as Lyrica or trycylic antidepressants (not usually Vicodin, ibuprofen, etc.).
    CFS treatment is based upon what condition you actually have that's causing your extreme fatigue (often people suffering chronic infection such as Lyme disease are incorrectly thrown into this category), so sometimes exercise helps and other times it does not.
    M.E. is irrevocably made worse by exercise, and there is an extreme sensitivity to the same medications people with FM use.

    FM is triggered by a stressful event, such as a car crash, a surgery, a severe infection, or another illness worsening/starting.
    CFS has no specified onset because it depends on what's causing your state of extreme fatigue.
    M.E. is always triggered by a viral infection (most new studies are pointing to a polio-like virus) and is acute onset.

  7. gb66

    gb66 Well-Known Member

    I have both CFS and FM, also MCS (multiple chemical sensitivities). I had a sudden onset of the CFS/FM and gradual onset of the MCS. It started 31 years ago and has gotten progressively worse. GB66
  8. skeptik2

    skeptik2 Member

    I had viral onset of M.E. 21 years ago; I have had FM for 22 years. They are different.

    That was a really good and concise explanation; I hope it helps other realize that CFS is a "construct" by the CDC.

    The name was decided by a committee where three prominent virologists walked out and refused to sign their names to the renaming of M.E. to CFS.

    The CDC has irreparably harmed true M.E. patients. It has been willfull and well thought out, with the endpoint being to cover up what is a very serious epidemic in the U.S. It is malpractice in it's most evil form.

    Today, jan van roijen of the HELP ME CIRCLE circulated a paper being printed in the July 21 issue of the journal clinical lab al\nalysis which states that the mitochondris linings are impaired by an autoimmune process, and that CFS should be reclassified as such.

    Dr. Hokama of the John Burns School of Medicine in Hawaii (who, the NCF funded to look at the blood of CFIDS/ME patients and 95% had reactions to the ciguetera toxins found in marine life) is the lead researcher. He further stated 95% of the serum from 'CFS' patients had high anticardiolipin antiboies (ACA) to IgM and two others.

    He said he is doing further research to find out WHY this is happening, and gave the name of the treatment which will stop the process...this is groundbreaking and great news for us.

    If the mitochondria are 'sick' (and dr. Hokama say it specifically affects the liver), then FM pain could be caused by malfunctioning mitochondria in the muscles, I believe. We may find out they are related.

    Time will tell.

    Don't know if you read aunttammie's post about my trying to start a lawsuit against the NIH and CDC for their monstrous, willfull cover-up of true M.E., in the face of so many affirmed studies of the serious abnormalities that have been found over the past 20 years. They have caused a denial of appropriate treatement by the medical community with their misinformation to doctors across this nation and are influencing the rest of the world to do the same.

    The legal research is ongoing as we speak. It will take time, but hopefully, with all the great information being published recently, we can get true m.e. into the hands of the appropriate government health agencies at the NIH.

    Thank you again for your concise reporting of the facts.

  9. nixon

    nixon New Member

    But almost 99% sure I suffer from CFS also !! I have almost ALL the symptoms of BOTH.

    Mine came on slowly, Strange symptoms, kept popping up......and it has gotten worse over the last 5 years. I've also developed cancer after being DX with FMS !!

    My symptoms change on a daily basis, although I'd say my case is VERY SEVERE, haven't been able to work since May 2006.

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