April 6, 2020 by Amy Kimberlain
Facing the Facts of Fibromyalgia
Irish singer-songwriter Sinead O’Connor, actress-comedian Janeane Garofolo and Academy-award winning actor Morgan Freeman know the agony of the chronic, widespread and severe pain associated with fibromyalgia. Yet, because so much is unknown about the condition, many of the 2 percent of Americans whom the Centers for Disease Control and Prevention estimates are afflicted by fibromyalgia do not receive a proper diagnosis or treatment for the debilitating disease.
What is Fibromyalgia?
According to the National Institutes of Health, the term “fibromyalgia,” sometimes also referred to as fibromyalgia syndrome, describes pain in the muscles and joints. And while originally believed to be a form of arthritis because of this similar trait, fibromyalgia doesn’t cause inflammation and damage to soft tissues, like arthritis does. Instead, as the American College of Rheumatology explains, fibromyalgia sufferers’ brains have the “volume control” of their pain “turned up too high.” They find the pain unbearable and lose their ability to live functional lives.
Causes of Fibromyalgia
While researchers conduct numerous studies looking for the cause of fibromyalgia, the National Fibromyalgia Association reports that the current understanding of the disorder points to some physiological differences in fibromyalgia patients that makes their brains process and transmit sensory information much differently than in other people.
Morgan Freeman told Esquire magazine that he attributes his fibromyalgia to a life-threatening automobile accident in 2008, where his left hand was severely injured. Some historians believe that iconic 19th century founder of modern nursing Florence Nightingale also suffered from fibromyalgia. Her writings after returning from deplorable hospital conditions in the Crimean War, they say, describe symptoms strikingly similar to fibromyalgia, pointing to the infection she contracted as a possible cause. Still others report extreme stress – either physical or emotional – leads to fibromyalgia. These various potential causes make it difficult for many doctors to properly diagnose fibromyalgia.
“When we suspect fibromyalgia, we look for severe pain and multiple areas of tenderness, usually around joints and muscles, that has lasted for more than six months and has no other underlying cause,” said Cindy Shaffer, M.D., a Baptist Health Medical Group physician with Baptist Health Primary Care. “That’s what’s so difficult about this disease. Patients must endure numerous tests to first rule out other causes of their pain.” And, she says, there isn’t one test to pinpoint fibromyalgia.
The Arthritis Foundation, though, uses a couple of measures to help doctors diagnose fibromyalgia. These include a Widespread Pain Index (WPI) score, in which patients get a point for each area of pain that coincides with 19 areas of the body where other fibro sufferers often report pain, and a Symptom Severity (SS) score, based on patients ranking their fatigue, sleep, cognitive function and other physical symptoms, such as headaches, dizziness, tingling or numbness in the hands and feet, or bowel problems, on a scale of 0-3. The higher the score, the more likely a patient has fibromyalgia.
In addition to these signs, Dr. Shaffer also looks for mood disorders and depression as symptoms of fibromyalgia, although she says depression may result from the uncertainty of the pain and the patient’s inability to function normally.
She says most fibromyalgia patients are women, between the ages of 20 and 60, although men and children do suffer from it as well.
Dr. Shaffer recommends that fibro patients exercise regularly. Stretching and flexibility exercises like yoga and tai-chi-style movement, offered through Baptist Health’s Community Exercise Programs, have been shown to improve pain management for fibromyalgia patients, she says. For those who can tolerate it, aerobic exercise also helps.
Yet medication may also be prescribed to improve the quality of life for fibromyalgia patients. The U.S. Food and Drug Administration (FDA) has approved three medications for the treatment of fibromyalgia. These work by changing the way chemicals in the brain transmit pain signals. They include brand-names Lyrica – originally an anti-seizure drug; Cymbalta – an antidepressant; and Savella – similar to an antidepressant – and the only one used specifically for the treatment of fibromyalgia.
Dr. Shaffer says it’s important not to allow chronic, severe pain to affect your life. “Patients should understand and trust their bodies when they’re telling them something is wrong,” she said. “Don’t give up trying to seek answers, because fibromyalgia can lead to severe depression. Seek out a specialist, such as a rheumatologist or pain specialist, who understands fibromyalgia is real and can get you the help you need.”