a guide for family to undrestand

Discussion in 'Fibromyalgia Main Forum' started by charlenef, Apr 12, 2007.

  1. charlenef

    charlenef New Member

    A Guide for Relatives and Companions

    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 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.

  2. jmq

    jmq New Member

    and easy to understand and read. I will be meeting again with my boss and think I will share it with him. I have shared so much info with my family and I think they do not bother reading it because I never get any feed back.

    Oh well, we just have to take care of ourselves.
  3. annaleeb

    annaleeb New Member

    I am sending this to my husband, it should be pretty easy for him to get some of it, and what I go through daily,if i send it to him through e-mail he is more apt to read it.
    as he just brushes me off pretty much, even when in horrible pain :(
  4. Empower

    Empower New Member

    Thank you

    Where did you get the info?
  5. charlenef

    charlenef New Member

    from devin star s websites charlene
  6. JoaneWing

    JoaneWing New Member

    This was great! Thank you so much!
  7. coolma

    coolma New Member

    Good work! Everyone please read the book on FM/ME by Dr. Devin Starlanyl and Mary Ellen Copeland. Every few years I forget all the details! (aren't they many!) and add degenerative disc disease or ruptures because they also have been added to the mix. For some people the symptoms are overlapping. It does get confusing, doesn't it????
  8. mujuer

    mujuer New Member

    That was an excellent article. I will have to check out this guys website. P
  9. Engel

    Engel New Member

    thanks for sharing
  10. mujuer

    mujuer New Member

    What is devin stars website? P
  11. suzette1954

    suzette1954 New Member

    I had to get this into my posts so that is why the title is thus here so I can print it for my primary dr visit next week.

    Thank you so very much for the info.

  12. charlenef

    charlenef New Member

    p google devin starlanyl she has a ton of websites charlene
    [This Message was Edited on 04/13/2007]