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Aches Define Life for Fibromyalgia Sufferers

  [ 801 votes ]   [ Discuss This Article ] • December 12, 2003

By Julie Marble-White

Herald News Staff Assistant

Sasha Howard found her life turned upside down by debilitating pain and fatigue. The 29-year-old Durango woman was waking up tired and un-refreshed, surprised that caffeine had no effect.

Pain varied from dull aches all over her body to specific pain in her ankles, wrists, neck and shoulders. She often felt as if she was in a fog, her ability to concentrate diminished. Always a "people person," Howard found herself withdrawing from social activities, not able to commit to a simple lunch with friends.

"There are times I can't even get out of bed," Howard says.
After three years of tests, she was diagnosed with Fibromyalgia Syndrome. Forced to quit her position as vice president of sales for a large California firm, Howard returned to the Durango area to live with her mother.

Fibromyalgia Syndrome causes long-term fatigue and widespread aches and pains in the muscles, ligaments and tendons. Experts estimate it affects anywhere from 3 million to 8 million adults in the United States 3 percent to 6 percent of the adult population. Eighty percent to 90 percent of those afflicted are women.

Research into the syndrome continues, but many questions remains as to its cause and methods of treatment. Sufferers can find it to be anything from a minor inconvenience to life-debilitating.

Some symptoms are common, while others vary from patient to patient and can change because of weather, stress, physical activity and even the time of day.

In 1990, the American College of Rheumatology defined the criteria for diagnosing fibromyalgia as experiencing pain upon gentle pressure in 11 of 18 possible body points, and having had widespread pain for at least three months. Many physicians believe the criteria are too narrow.

Karen Zink, a certified nurse practitioner in Durango, estimates she has 20 to 30 patients who have been diagnosed with fibromyalgia. She agrees that the official criteria are too rigid and that all symptoms should be considered as a whole. She further believes that "the medical community can fail sufferers of fibromyalgia by focusing only on the individual symptoms rather than the cluster of symptoms that can result in the proper diagnosis."

Fibromyalgia's cause in unknown, but a number of triggers are consistent among patients. According to the Mayo Clinic Web site, a common trigger is brain chemical imbalance, particularly in the chemical that regulates depression and migraines, and another associated with pain, anxiety and stress. The Fibromyalgia Network Web site says the same problem is seen with two hormones, one that is essential to the body rebuilding itself and another that influences nerve activity.

Other possible triggers are an injury or trauma to the upper spinal region or central nervous system; a viral or bacterial infection; an abnormality in the autonomic, or involuntary, nervous system; changes in muscle metabolism; and psychological stress.

Doctors know of no medication to treat fibromyalgia, although aspirin, ibuprofen or acetaminophen can help control aches and pains as can prescription muscle relaxants.

Zink believes that treatment must be approached as a "package" based on diet and exercise. Sufferers should limit the intake of starches, simple carbohydrates and sugar while eating more vegetables, particularly green. Also important are regular cardiovascular and stretching exercises and a regimen of premium vitamin and mineral supplements. Zink says additional treatments could include antidepressants or sleep aids.

Dr. Jennifer Heinicke, a local doctor of internal medicine, agrees with the importance of rest. "Sleep regulation has a profound (positive) effect on the body," and is Heinicke's first priority when treating fibromyalgia.

Howard has "tried it all" when it comes to fibromyalgia therapy. Those that have proven most successful for her are acupuncture, Shiatsu massage, Reiki (energy work) and craniosacral therapy.
Other alternative therapies that have proven successful for fibromyalgia sufferers include yoga, biofeedback and acupressure.

Experts agree, however, that the most important factor in successfully treating fibromyalgia is the patient's willingness to accept the diagnosis and take control of their own treatment process.
Living with a disease that waxes and wanes daily lends itself to living on an emotional roller coaster. The Mayo Clinic Web site refers to this as a "cyclic pattern" during which emotions such as fear, frustration, guilt, depression and hope continually recur. The National Fibromyalgia Partnership says, "It takes enormous energy as well as courage to adjust to fibromyalgia and find treatments that work well without wasting precious energy on guilt, self-deprecation and doubt."

Stephanie Neidermyer, a Durango-based family and marriage therapist, coaches her fibromyalgia patients to deal with the diagnosis by replacing negative views and behaviors with positive ones.
Durango has a support group, which Howard attended regularly, dedicated to Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia Syndrome which now meets as needed.

Howard says she is still struggling with the thought that fibromyalgia will affect the rest of her life. Though she is currently on disability and living on her own, she fervently hopes that she will someday be able to re-enter the workforce and "receive re-enforcement that her life has purpose."

Reach News Staff Assistant Julie Marble-White at Marble-White has been diagnosed with Fibromyalgia Syndrome.

Source: The Durango Herald. Online at Contents copyright © the Durango Herald. All rights reserved. Reprinted with permission.

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