Fibromyalgia – Difficult to Diagnose, Difficult to Treat

There are a number of syndromes or medical conditions that cause distress, pain, or suffering to many people, but are either misunderstood, misdiagnosed, or under-diagnosed, with the result that the suffering is actually prolonged rather than treated. For example, anyone who knows someone who suffers from chronic fatigue syndrome (CFS) has heard the stories of them being told by doctors that they’re “imagining it,” and aren’t really sick at all.

Another syndrome that is difficult to diagnose (and that many feel is under-diagnosed) is fibromyalgia. It is one of the most common chronic pain conditions, affecting an estimated 3% to 6% of the world’s population, but like CFS, it is difficult to “pin down” in a medical diagnosis because there is no laboratory test one can perform and say, “Yes, you have fibromyalgia,” based on the test results. Instead, doctors have to diagnose the disorder based only on the patients’ reported symptoms, and these symptoms may vary, depending on the individual. To make the diagnosis even more difficult, the symptoms of fibromyalgia often imitate other conditions, such as multiple sclerosis, rheumatoid arthritis, and lupus. Fibromyalgia is often diagnosed only after other possible causes have been ruled out.

Many symptoms, one disorder

One of the reasons that fibromyalgia can be so difficult to diagnose is that the list of possible symptoms is a long one, and not every patient has them all. In addition, some of the symptoms may present themselves only at certain times of the day, and may vary in intensity because they can be affected by temperature (especially cold), fatigue, inactivity, overexertion, stress, depression, and hormonal factors. Symptoms commonly associated with fibromyalgia include:

• Chronic muscle pain, spasms, or tightness

• Muscle stiffness, either upon waking or after remaining in one position for too long

• Decreased energy levels and moderate to severe fatigue

• Waking up feeling as tired as when you went to sleep, often coupled with insomnia

• “Fibro fog” – having difficulty remembering, concentrating, and performing simple mental tasks

• Tension or migraine headaches

• Stomach problems similar to irritable bowel syndrome, including abdominal pain, nausea, bloating, and constipation, alternating with diarrhea

• Tenderness in the jaw and facial areas

• Numbness or tingling in the face, arms, hands, legs, or feet, or “restless leg” syndrome

• Heightened sensitivity to odors, medications, noises, bright lights, some foods, and cold

• Chronically feeling anxious or depressed

• Irritable bladder – increase in urinary urgency or frequency

• Reduced tolerance for exercise or muscle pain experienced after exercise

• A feeling of swelling (but no actual swelling) in the hands and feet

If you experience many of these symptoms and wonder whether fibromyalgia might be the reason, the advice of many health care professionals is that you try to find a doctor who is knowledgeable about the disorder, such as a rheumatologist. He or she will do both physical and neurological examinations, and possibly some lab tests, but the final diagnosis may depend on the presence of tender points in the body, because that is the distinguishing characteristic of fibromyalgia. The guidelines released by the American College of Rheumatology require a minimum of 11 out of 18 specific tender points to qualify for a diagnosis of fibromyalgia.

How is fibromyalgia treated?

There is no known cure for fibromyalgia, and patients with the condition usually have to live with it for the rest of their lives. However, it doesn’t get worse as a result of aging, and doesn’t seem to cause damage to muscles, ligaments, or tendons, so many people are able to manage their symptoms with a combination of exercise, physical therapy, relaxation, and meditation. Naturally, this requires almost a team of health care professionals, including doctors, physical therapists, and other specialists.

Treatment of some of the conditions known to commonly coexist with fibromyalgia – like depression, rheumatoid arthritis, and sleep apnea – also often help to relieve the fibromyalgia symptoms as well. Antidepressants may be prescribed, not only to help with depression, but to elevate the levels of brain chemicals that lessen the perception of pain and fatigue. Many fibromyalgia patients have reported gaining relief from their pain symptoms from acupuncture, massage, movement therapy, and mindfulness meditation techniques to help manage chronic pain.

Some patients have found relief at work by working with an occupational therapist to redesign their workstation environment to make it more comfortable. Lifestyle changes such as getting more sleep and/or cutting down one’s work hours have also helped in many cases.

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Juliette Siegfried, MPH

Juliette Siegfried, MPH, has been involved in health communications since 1991. Shortly after obtaining her Master of Public Health degree, she began her career at the National Institutes of Health in Bethesda, Maryland. Juliette now lives in Europe, where she launched ServingMed(.)com, a small medical writing and editing business for health professionals all over the world.

Juliette's resume, facebook: juliette.siegfriedmph, linkedin: juliettes, (+31) 683 673 767

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