Awareness piece

Discussion in 'Fibromyalgia Main Forum' started by padre, Dec 1, 2006.

  1. padre

    padre New Member

    Here is the CFS/FMS community awareness piece that appeared in "Our Town" a Saturday feature of the Tracy Press, Tracy California, USA. It mentions prickles web site.

    Mike McLellan
    Written by Tracy Press/

    When we see someone pull into a parking space reserved for the handicapped, sometimes we wonder if they really need it.

    Good health is something that some of us take for granted. Many people suffer from one disease or another, some in silence. Breaking the silence, as long as it doesn’t sound like whining, promotes sympathy and understanding.

    This is Chronic Fatigue Syndrome and Fibromyalgia Awareness Month — two related illnesses that are widely misunderstood.

    The Web site of a bright and attractive 21-year-old English woman with fibromyalgia ( shares one person’s story. While her experiences are not extraordinary for her illness, the reader is struck by the courage it takes both to deal with the disease and to tell the world about it.

    This disease often does not show itself outwardly. It was not taken seriously by many doctors until the American College of Rheumatology declared it real, painful and disabling a couple of years ago.

    NBC just announced a major push by our government’s Centers for Disease Control to educate the public about fibromyalgia. It has even been discussed on Oprah.

    Fibromyalgia is a syndrome of diffused muscle pain, especially in certain tender points in the neck, shoulders, back and hips. People also have digestive upsets, dizziness and extreme fatigue.

    This disease has similar symptoms to multiple sclerosis, chronic mononucleosis, lupus, and thoracic outlet syndrome. Each causes diffused muscular pain, weakness and fatigue.

    The symptoms of fibromyalgia are described by some as being like an extreme case of the flu that never goes away.

    Those with this syndrome often look well. Yet the most insidious aspect of this disease may be affecting them. It is what is called “fibro-fog,” or cognitive difficulty. It is the inability to think clearly. Only sleep will help. Yet, people suffering from this illness also cannot fall deeply asleep. Not reaching Stage 4 sleep also prevents muscles from completely relaxing. The result is fatigue and pain.

    Physicians have known about the syndrome for generations. Using diaries, doctors have identified a variety of people who have had the disease. These people include Charles Darwin and Florence Nightingale. It affects more than 1 million people in the U.S.

    This syndrome does not kill you, but it can remove pleasure from life.

    In addition to vasculitis, I also suffer from fibromyalgia. The word “suffer” was easy to choose.

    For me, it started in childhood with “growing pains.” As an adult, the pain and stiffness can make a simple hike impossible.

    I can start the day feeling well, and within an hour find my pain uncontrollable. This unpredictability strains my whole family.

    We may start somewhere and have to turn around. I do not know if it is true, but my family swears that my joint pain is more accurate than the weatherman. Often, my wife has to open jars for me, as my hands have lost strength. I will be having a great vacation and suddenly need to go to bed with an incredible fatigue that makes me lose a day.

    When my illness flares up, I am disabled. No wonder many people with the illness suffer from the depression or anxiety that come with chronic pain.

    Because this column is about your behavior, what can you do You can support those who have this syndrome by advocating research into a cure. You can stop thinking we are “nuts” and accept us as ill.

    It is often true that people with this disease are grumpy and anxious and complain a lot. Try to live with pain and lack of restorative sleep for months and see how you feel. No, don’t. No one would wish this on another.

    Research it on the Internet. The Centers for Disease Control provides excellent articles. Then, if someone you know discloses that he or she suffers from the disease, you can sympathize and offer support.

    One step further is to do what you can to identify with anyone who has a long-term chronic disease.

    Do not pity them; rather, ask and listen for what you can do. The answer is more political than personal. As America grays, the percentage of disabled people will increase. They are often isolated, losing their income, independence and hope. They need advocates.

    Contact Mike McLellan at
  2. Pianowoman

    Pianowoman New Member

    Thanks for posting this. It's very good, gets right to the heart of things. And way to go Prickles!!!!

  3. IowaMorningGlory

    IowaMorningGlory New Member

    That was a very well written article. Thank you for posting it. It made me just feel better reading it!

    I am also so glad it mentioned Prickles website. Prickles you go girl, with any luck someday you will be on "The Today Show". (America's early morning news broadcast for world news)

    Take care and Kitten Hugs,
    Blessed Be,

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