Tuesday, May 12, 2009

Fibromyalgia Awareness Day

Today, May 12th, has been declared Fibromyalgia Awareness Day. Led by the National Fibromyalgia Association, groups all over the United States are hosting activities in their communities to educate people about this chronic pain disorder which directly affects an estimated 10 million men, women and children in the U.S. and indirectly affects millions more of their family, friends and health care providers.

Fibromyalgia is a chronic immunological disease with symptoms which include chronic widespread pain, abnormal pain processing, multiple tender points, fatigue and sleep disturbances. It is one of a group of closely related immunological and neurological diseases, which also includes MCS (multiple chemical sensitivity). Many people with MCS also suffer from fibromyalgia.

I know the effects of this debilitating disease firsthand. I watched my mother suffer the pain of fibromyalgia for several years near the end of her life, and I myself have struggled with it to a lesser degree. Mom really expressed how she was feeling a few years before her death at a family reunion. One of her grandchildren mentioned the possibility of another reunion in another five years, and her reply was, "Oh, I hope I don't live that long. I can't imagine being in this much pain for five more years." The grandchild, to say the least, was a little shocked and dismayed, but I have since had some days when I have truly understood Mom's feelings.

I'm one of the lucky ones, however. Though I have days when I hurt so badly that I just want to crawl into a hole and disappear, those days are the exceptions. Most days, especially when I haven't had any recent chemical exposures, the pain is just a dull ache to which I have become accustomed. But I know people for whom the pain of fibromyalgia is completely disabling. They are unable to perform the most simple of daily tasks.

When Mom was first diagnosed with fibromyalgia, it was relatively unknown. Many doctors didn't even believe it really existed. Some still don't want to acknowledge it as a true disease because, like other similar maladies, it doesn't fit into their narrow definition of "disease." That doesn't make it any less real for those for whom it is a constant companion. Perhaps the best thing the rest of us can do is speak up about it when we can, support education and research and show compassion (and validation) for those who suffer.

For more information, visit the NFA website at www.fmaware.org.

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