When Everything Hurts
Diagnosis and treatment of fibromyalgia are often elusive
By Nancy Maes
Diagnosing this disease isn’t easy. It usually takes years, following chronic widespread pain and fatigue and sometimes sleeplessness, depression, migraines, irritable bowel syndrome and brain fog. People who suffer from this disease often spend three to five years consulting one doctor after another seeking a diagnosis. Finally, when other diseases are ruled out, the default diagnosis is given: fibromyalgia.
As many as 6 million to 12 million Americans have fibromyalgia, and the large majority of them are women, according to the American Chronic Pain Association. Because the test results of people with fibromyalgia are normal, many doctors don’t think the disease is real, and yet the symptoms are very real.
“I’ve learned that fibromyalgia almost always appears after some kind of stressful event in a woman’s life,” says David Edelberg, MD, founder of WholeHealth Chicago and the author of Healing Fibromyalgia: Why Everything Hurts and How to Feel Well Again. “Some women are more genetically susceptible to fibromyalgia. It is thought that they have very low levels of serotonin that [act] like a factory-installed stress-buffering chemical, so they are more susceptible to stress. The physical symptoms occur because their fight-or-flight response is constantly on.”
It is crucial for medical professionals to listen to patients to identify the events that trigger symptoms, Edelberg says. It is also important to check the 18 tender points that are painful when touched with 10 pounds of pressure, but he points out, “It’s too subjective a tool, so it has been discouraged over the past couple of years.”
While several drugs have been approved for fibromyalgia, Edelberg says they are not very effective and have very uncomfortable side effects. When he sees a patient with severe symptoms that have lasted many years, he might begin by prescribing a mild time-release pain medication during the day and a muscle relaxant for the night. “I always start with pediatric doses of medications with fibromyalgia patients and then work upward because they are very chemically sensitive, and if there are side effects, they are going to occur in them.”
It is important to explain to fibromyalgia patients what is happening in their bodies, Edelberg says, to help them identify their stress triggers and to find ways to eliminate as much stress as possible. He also recommends nutritional supplements and herbs such as St. John’s wort and 5-http, an amino acid, both of which raise levels of serotonin naturally, as well as acupuncture and myofascial massage to relax muscles, gentle exercises and sometimes a gluten-free diet.
While fibromyalgia is often diagnosed by eliminating other possible diseases, research conducted by the Department of Pathology at the University of Illinois College of Medicine at Chicago (UICM) and EpicGenetics, a privately held biomedical company in California, looked for a common denominator in patients diagnosed with fibromyalgia who had no other illnesses such as rheumatoid, neurological or immunologic diseases.
“We found that patients with fibromyalgia have an immune system dysfunction disorder,” says Bruce Gillis, MD, a member of the clinical faculty at UICM and founder of EpicGenetics. The discovery won an award for outstanding research in 2012 from the American Association of Clinical Chemistry, and the findings were published in the Biomedical Central medical journal Clinical Pathology.
The result of the research is the FM/a Test, a diagnostic blood test that looks for the unique set of biomarkers found in fibromyalgia patients. The accuracy of the test, known as its sensitivity, is 93 percent. The test costs $744, and Gillis says that some insurance companies are beginning to cover part or all of that amount.
“Much to our chagrin, patients with fibromyalgia, who are chiefly women, are usually thought of as being neurotic, hypochondriacal and hysterical, and they’re assumed to have a bogus affliction,” Gillis says. “The FM/a Test gets rid of these urban myths and legitimizes fibromyalgia as an actual medical disorder. This is a critical medical issue for people with fibromyalgia because family and friends don’t take them seriously when they say they are sick.”
Gillis hopes that pharmaceutical companies will use the findings to develop a cure for fibromyalgia. Currently, drug companies don’t understand the depth of the problem, as there are millions of American adults with fibromyalgia. It is up to physicians, Edelberg says, to inform themselves about fibromyalgia and help their patients find improvement and relief.
Originally published in the Winter/Spring 2015 print edition
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