Info for those who do not believe in FMS/CFS

Discussion in 'Fibromyalgia Main Forum' started by loonie, Apr 11, 2003.

  1. loonie

    loonie New Member

    Print and keep this to give to whomever thinks your disease is in your head, or does not exist, or "all you have to do is...."

    Hand it to them and ask "Is there anything else you know nothing about????" Or whatever you want to say about their stupidity, stubbornness (sic), or ignorance.

    These are from various websites, no URL's due to board policy, but a search on any heading will get you all kinds of information.

    {Fibromyalgia Network}

    the 1990 ACR multi-center criteria study (published in the February 1990 issue of Arthritis and Rheumatism.....trained examiners were not foiled--they hand-picked the FMS patients out of the "chronically ill" melting pot with an accuracy of 88%. FMS is not a wastebasket diagnosis!

    Chronic fatigue syndrome is diagnosed using the CDC 1994 guidelines published in the Annuals of Internal Medicine 121(12):953-959.

    The American College of Rheumatology (ACR) has developed criteria for fibromyalgia that physicians can use in diagnosing the disease. According to ACR criteria, a person is considered to have fibromyalgia if he or she has widespread pain for at least 3 months in combination with tenderness in at least 11 of 18 specific tender point sites.

    {CDC}

    In an effort led by the University of New Mexico Health Science Center, researchers will attempt to define the prevalence, types, and determinants of CAM use among people with osteoarthritis, rheumatoid arthritis, and
    fibromyalgia.
    (this is CDC funded research)

    Fibromyalgia, or FM, is another debilitating illness that is often associated with fatigue. Because it is often associated with fatigue, it overlaps greatly with CFS. However, patients with FM have their most marked problem
    with widespread muscle pain more than with fatigue.

    Doctors have seen FM in people of all ages, races, and socioeconomic classes.

    How Many People Get FM? Current best estimates indicate that as much as 2% to 4% of the population, or 4 to 8 million Americans, has FM. These figures make FM the second most common rheumatological illness
    after osteoarthritis.

    {National Institute of Health + National Institute of
    Arthritis and Musculoskeletal and Skin Diseases}

    Background on Fibromyalgia

    Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas of the neck, spine, shoulders, and hips called "tender points." People with this syndrome may also experience sleep disturbances, morning stiffness, irritable bowel syndrome, anxiety, and other symptoms. Available data
    suggest that the number of persons aged 18 and older in the United States with fibromyalgia is approximately 3.7 million. It primarily occurs in women of childbearing age, but children, the elderly, and men may also be affected.

    Treatment of fibromyalgia requires a comprehensive approach. The physician,physical therapist, and others in the medical support system, as well as the patient, may all play an active role in the management of fibromyalgia.

    Research on Fibromyalgia

    Support of fundamental research is extremely important in fibromyalgia as well as in many disorders characterized by pain and sleep abnormalities, and many disciplines of medical research contribute to the knowledge base in
    understanding these symptoms.

    The research on fibromyalgia supported by NIAMS covers a broad spectrum from basic research to clinical studies to behavioral interventions.Basic research studies to advance our understanding of the molecular and genetic basis of sleep and sleep disorders are also included in the NIAMS
    research portfolio.

    The Neuroscience and Endocrinology of Fibromyalgia: A Scientific Workshop.
    In July 1996, NIAMS and several other NIH organizations sponsored a scientific workshop that explored advances in the neuroscience andendocrinology of fibromyalgia. The workshop focused on chronic pain, neuroendocrinology, and sleep disorders associated with fibromyalgia.
    What made this workshop so unusual and effective was its design, which brought together researchers in the basic sciences of chronic pain,neuroendocrinology, circadian rhythms, and sleep disorders--all challenges
    for patients with fibromyalgia. These experts in basic research were joined by clinicians who treat patients with fibromyalgia and by a significant
    number of patients themselves. This multidisciplinary workshop helped to identify research needs and opportunities, and the gaps in understanding of
    this clinically challenging condition.

    The summary report of the workshop presentations and discussion was published in Arthritis and Rheumatism, Vol. 40, No. 11, November 1997.
    Publication of the summary of the workshop in this peer-reviewed journal provides for wide distribution of the discussion of research opportunities to the scientific community with interest in this disorder.

    {American College of Family Physcians}

    recent findings about the pathogenesis and pathophysiology of fibromyalgia have dispelled the belief that the disorder is psychosomatic.

    While the cause of fibromyalgia remains elusive, substantial findings implicate disturbances in the neuroendocrine axis as central to its etiology.

    Chronic Opioid Analgesic Therapy (COAT). This intervention should be reserved for patients with moderate to severe pain or significant functional impairment and for those in whom other therapies are ineffective or contraindicated. Controlled clinical trials demonstrate COAT to be safe
    and effective in patients with pain that is not related to cancer.

    Nonsteroidal Anti-Inflammatory Agents (NSAIDs). Although commonly prescribed in analgesic doses, NSAIDs have not been proved to be effective in the treatment of fibromyalgia.

    {Mayo Clinic}

    Fibromyalgia is a chronic condition characterized by fatigue and widespread pain in the fibrous tissues in your muscles, ligaments and tendons.
    Previously, the condition was known by other names such as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias.

    In this Article (about Fibromyalgia)
    Signs and symptoms
    Causes
    Risk factors
    When to seek medical advice
    Screening and diagnosis
    Complications
    Treatment
    Self-care
    Coping skills
    Complementary and alternative medicine

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  2. LErdman

    LErdman New Member

    Thank you, thank you, thank you! My Dr does know about this disease but it would be nice to show anyone that just does not understand. This article pretty much sums it up.
  3. loonie

    loonie New Member

    Thank you, ERdman (oops, LErdman)(foggy, foggy dew)

    This actually a compilation of items found in websites from the fibromyalgia network, CDC, etc. Each heading identifies where the info came from.

    My healthcare provider is Madwolf, for which I am very grateful. I have just been so frustrated with all the posts of people who have been disappointed and even humiliated by incompetent doctors who just have not kept up on current medical literature. I have wanted to heave something heavy at each arrogant idiot DR that I hear about, so I decided to try to give anyone who wants it some info to heave at them for me!!LOL

    Good days to all, Loonie

    PS Madwolf has a new den!!! Upscale, what?
    [This Message was Edited on 04/11/2003]
  4. robing2

    robing2 New Member

    i keep getting in those situations that doctors have pre-determined opinions about Fibro and the "type" of people who have it and of course it is always negative. It makes me not even want to tell them. I wish one of the associations would send that info you posted to every doctor and doctor association. It is so demoralizing.
    Just felt the need to vent. Been through alot of this lately.
    Thanks
    robing
  5. loonie

    loonie New Member

    BIMP (Pink Panther)
  6. lucky

    lucky New Member

    are idiot doctors fortunately. My experience with my doctor and specialists were just the opposite of what a lot of you had to go through.
    From the beginning, 15 yrs. ago to now, my family physician has been a great support and never once believed that all my symptoms were in my head nor that I suffer from mental depressions, which is not to say that with these illnesses one cannot get depressed emotionally - which is unfortunate but with being chronically ill for a long time, who would not get depressed at times.
    It would be great, if more people will get treated the same way which would make their suffering less stressful.
    However, it also is of benefit to get all the info one can get on these illnesses to be equipped and knowlegeable to challenge a lot of doctors - or in the worse case just walk out on them.
    I really hope, that the medical profession is waking up fast, but we have to help them waking up.
    Kind regards, Lucky
    [This Message was Edited on 04/12/2003]
  7. loonie

    loonie New Member

    MODERATORS-using this conversation with jelly as a BUMP


    Hi, girl!!

    Will open up my hotmail and reply will give you my other e-mail addy.

    Love, loonie

    DID I HEAR A FOGHORN? Guess you could use the hotmail addy!! closing hotmail addy-getting too much garbage, will post a thread later with your name and when you reply, will open it again.[This Message was Edited on 04/15/2003]

    MULTIPLE FOGHORNS- not our name, but we are of a great crowd-(Proclaimers helps dispel fog) :eek: :]
    [This Message was Edited on 04/15/2003]
    [This Message was Edited on 04/19/2003]
  8. loonie

    loonie New Member

  9. loonie

    loonie New Member