Advice for loved ones? (pls help)

Discussion in 'Fibromyalgia Main Forum' started by Kacjac, Dec 4, 2005.

  1. Kacjac

    Kacjac New Member

    My husband is trying to understand Fibromyalgia.
    My kids are clueless.
    I don't want anyone to think, I'm faking anything or just trying to get attention.
    I always do what I can, when I can.
    The pain and exhaustion will get me down and depressed sometimes.
    This is very sad illness, and so very invisable to the outside world.
    Any thing that will help my family understand, I would be so thankful, say or add anything at all please.....Gentle hugz, Karen
  2. Mamalovinit

    Mamalovinit New Member

    Did you see the post about the letter to normals?

    I will try to post more to you later. I am so tired I can hardly hold my head up.

  3. lenasvn

    lenasvn New Member

    Fibromyalgia and Chronic Myofascial Pain:
    A Guide for Relatives and Companions

    by Devin J. Starlanyl

    Excerpted from Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual by Devin J. Starlanyl
    and Mary Ellen Copeland M.A. M.S., © 1996 by the authors. All rights reserved.

    This information may be freely copied and distributed only if unaltered, with complete original content
    including: © Devin Starlanyl 2002.

    Fibromyalgia (Fie-bro-my-al-gia) Syndrome (FMS) is a chronic invisible illnesses.
    It is not a musculoskeletal dysfunction. It's a disorder of the informational
    substances such as neurotransmitters, hormones, peptides, and other biochemical
    messengers which regulate and run the systems of the body and mind. It causes
    hypersensitivity to all sorts of stimuli, so it can amplify pain. There are no trigger
    points (TrPs) in FMS, only tender points, which do not refer pain.

    Fibromyalgia often occurs with chronic myofascial (my-oh-fass-shall) pain (CMP),
    which is a neuromuscular chronic pain condition with TrPs that can cause muscle
    weakness and dysfunction, and incapacitating, intolerable pain. TrPs can also
    cause extreme dizziness, migraines, buckling knee, clumsiness and calf cramps.
    Pains in localized parts of the body — the back, hands, neck and other areas — are
    a symptom of TrPs. Achy, body-wide pain is a symptom of FMS, but all widespread
    pain is not FMS. TrPs can occur all over the body in CMP, for example, causing
    widespread pain. FMS will amplify the pain of TrPs.

    In FMS, sleep is often fragmented, and there seems to be a problem with the
    microstructure of sleep. People with FMS wake up feeling that they haven’t slept
    at all. You are denied refreshing sleep, and sleep is when the body does much of
    its repair and biochemical regulation. The person with FMS can’t recover from
    exercise, stress and work like healthy people. They are constantly in a state of
    sleep deprivation unless they find a combination of medications, lifestyle
    modifications and diet that work for them.If people with TrPs are immobile at any
    time, such as during travel or sitting in a meeting or movie, their muscles get stiff
    and painful. It can feel like you are wearing a wet suit several sizes too small,
    your range of motion is limited, and your muscles are weak. Morning stiffness
    with both of these conditions can be severe. Symptoms fluctuate from hour to
    hour and day to day and may worsen with changes in barometric pressure,
    humidity, cold or heat. If you overextend your limits, you may have extra pain for
    days or weeks.

    Symptoms can be severe, yet blood tests, X-ray and other common diagnostic
    tests cannot diagnose FMS or TrPs, although there may be a way to document FMS
    (see Algometry). TrPs are easy to diagnose if your medical care provider has been

    Fibromyalgia and Chronic Myofascial Pain: A Guide for Relatives and Companions
    by Devin J. Starlanyl © 2002 Page 1

    trained to do so. FMS and CMP are two of the most common sources of chronic
    pain, and the most undiagnosed or misdiagnosed of illnesses.

    Most FMS patients have memory and cognitive impairments. Doctors often refer
    FMS patients to psychologists or psychiatrists because of this, yet studies show
    that psychologically, these patients have no more abnormal psychology than
    arthritis patients. People with FMS and CMP are often misunderstood and doubted,
    and this, in addition to the chronic pain and other symptoms, could cause anyone
    to feel depressed and confused. An American College of Rheumatology study in
    1992 found that the impact of FMS on your life is as bad, or worse, than
    Rheumatoid Arthritis. They listed one major factor in this as "clinician bias". FMS
    & CMP patients don't look sick and their symptoms vary, so they are often
    misunderstood and disbelieved by clinicians, family and friends.

    FMS and CMP are not progressive, but symptoms may worsen if the perpetuating
    factors are not identified and dealt with promptly and adequately. If you have FMS
    and CMP, you have a history of widespread pain and wake up every morning
    feeling like you’ve been run over by a truck. You may have headaches and loss of
    balance. Looking both ways when going into traffic can cause dizziness. You may
    have short-term memory loss and other cognitive dysfunctions, and you may not
    always have control over your muscles.TrPs are incredibly painful areas that often
    feel like knots, hard lumps, or taut bands of fibers in the muscles, and they can be
    everywhere and often refer pain to some other part of the body. They can cause
    irritable bowel syndrome, dizziness and loss of balance, buckling ankles and knees,
    pelvic pain, painful intercourse in women, impotence in men, and many more
    symptoms. The tightened and rigid myofascia surrounding the muscles can entrap
    nerves, blood vessels, and ducts. TrPs can cause blurring of the eyes, double
    vision, leg cramps, trouble swallowing, sciatica, numbness or tingling. Carpal
    Tunnel Syndrome, Migraines, TMJD, Piriformis Syndrome, and Thoracic Outlet
    Syndrome are some of the conditions that can be caused by TrPs. Muscles
    contracted by TrPs can pull bones out of alignment and lead to osteoarthritis.

    There is no cure for FMS right now. There are medications and therapies that help
    some symptoms of FMS and CMP. The key to reducing symptom load is always to
    identify every perpetuating factor (such as lack of restorative sleep, poor diet and
    posture, chronic pain, etc.) and deal with each of them as thoroughly as possible.
    It takes a commitment on the part of the patient to practice a healthy lifestyle,
    including good nutrition, a program of gentle stretching and moderate exercise,
    and avoidance of smoking and other bad habits. There must be recognition by
    both the patient and her/his companions in life (including the medical care team)
    that there are limitations for people with FMS and/or CMP. It isn't easy to find the
    right balance to optimize the quality of life. Be patient, compassionate, and listen.
    Ask if there is something you can do to help.

    Fibromyalgia and Chronic Myofascial Pain: A Guide for Relatives and Companions
    by Devin J. Starlanyl © 2002 Page 2

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