By Karen Lee Richards*
Over the past decade, fibromyalgia has become better understood and accepted. However, a number of myths about it still abound.
MYTH #1: Fibromyalgia is a psychological problem, not a real physical illness.
FACT: Fibromyalgia is a real physical disorder with measurable biological abnormalities.
This myth has probably caused the most frustration to fibromyalgia patients. Unfortunately, some patients continue to be told, “It’s all in your head,” even though numerous studies have clearly shown FM to be a real physical illness. Research has revealed a number of biological abnormalities with fibromyalgia, including:
- Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems experienced by Fibromyalgia patients.
- High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
- Low levels of nerve growth factor.
- Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
- Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
- Low levels of phosphocreatine and adenosine, muscle-cell chemicals.
- Significantly dysregulated white blood chemokine and cytokine patterns.
Despite the scientific evidence, some medical professionals continue to dismiss fibromyalgia as a psychological problem, insisting that the symptoms are caused by depression. The fact is that the percentage of FM patients who suffer with depression is no higher than for any other chronic illness.
MYTH #2: Fibromyalgia is a “wastebasket diagnosis” doctors use when they can’t figure out what’s wrong with you.
FACT: There is a specific set of diagnostic criteria developed by the American College of Rheumatology to be used for diagnosing fibromyalgia.
While there may be a few doctors who use fibromyalgia as a wastebasket diagnosis when they have patients with pain they can’t explain, there is actually a specific set of diagnostic criteria that should be used. In addition to pain, the 2010 ACR Preliminary Fibromyalgia Diagnostic Criteria takes into account other common FM symptoms, such as fatigue, sleep disturbances, and cognitive problems.
MYTH #3: Fibromyalgia is a middle-aged woman’s disease.
FACT: Fibromyalgia affects men, women and children of all ages.
Although a larger percentage of adult women have been diagnosed with fibromyalgia, it does affect all ages and both sexes. And it may turn out that more men and children have fibromyalgia than previously thought. Doctors are finding that men may have fewer than the traditional 11 tender points, yet still meet all the other criteria for FM. Using the newer 2010 ACR Diagnostic Criteria which doesn’t rely on a specific tender point count, we may find that considerably more men have FM than previously thought.
As for children, what was once thought to be “growing pains” may actually turn out to be a form of fibromyalgia. But because most pediatricians are not very familiar with FM, they are unlikely to diagnosis it. Although FM will likely continue to be diagnosed more often in women, we may eventually discover it affects significantly more men and children than once thought.
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MYTH #4: There is no inflammation in fibromyalgia.
FACT: Several recent studies have revealed markers of inflammation in fibromyalgia.
Originally it was thought that there was no inflammation involved in fibromyalgia because the tests typically used to detect inflammation (like those used for lupus and arthritis) were normal or only slightly elevated in FM patients. However, since 2010, improved scientific methods have begun to reveal a number of markers of inflammation in FM, including high levels of pro-inflammatory cytokines and C-reactive protein.
MYTH #5: Exercise will make fibromyalgia worse.
FACT: Exercise, when done properly, can reduce some fibromyalgia symptoms and improve overall quality of life.
The reason many patients feel like exercise makes their fibromyalgia worse is they try to do too much too soon. The key to exercising with fibromyalgia is to start very slowly and increase very gradually. The fact is that numerous studies, conducted over many years, have repeatedly found that exercise helps reduce fibromyalgia pain and fatigue and improve overall quality of life.
MYTH #6: Nothing can be done for fibromyalgia. You just have to learn to live with the pain.
FACT: Although there is not yet a cure for fibromyalgia, it can be managed with the right combination of treatments and therapies.
Treating fibromyalgia remains challenging for both doctors and patients because every FM patient is different. What works well for one patient may not work at all for another. Successfully managing fibromyalgia generally takes a multidisciplinary approach which may include a combination of medication, exercise, complementary therapies and lifestyle adjustments. It’s usually a matter of trial and error for patients to discover the combination that works best for them. The important thing is to try not to get discouraged through the process. While it may not be possible to completely eliminate all symptoms, it is possible to experience significant improvement and to lead a fulfilling life.
See ProHealth’s Treatment Section for more information.
* Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE, the very first full-color, glossy magazine devoted to FM and other invisible illnesses. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, and then for eight years as the Chronic Pain Health Guide for The HealthCentral Network.</em
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