5 Fibromyalgia Myths and Facts What You Should Know About This Misunderstood Illness

Fibromyalgia has dozens of symptoms and almost as many myths surrounding it. Is it a real disease? Do all sufferers have the same symptoms? Is it treatable? Read on as fibromyalgia experts explain the facts and fiction behind this mysterious chronic pain disorder... Misconceptions about fibromyalgia abound – even among doctors – starting with the belief that it may not even exist. For sufferers, that means delayed diagnosis and treatment of this debilitating, painful condition. Jenna Abts, 27, a Seattle-based artist, knows that situation well. She has suffered from fibromyalgia since she was a teen, when she was initially misdiagnosed with anxiety. “Most doctors dismissed my complaints of joint pain as some kind of hypochondriac fantasy,” she says. “I saw four doctors before I was lucky enough to find an internal medicine doctor who recognized the symptoms. I'm sure that given that I was a teenager, nobody thought to look at a chronic pain disorder.” Her situation isn’t uncommon. It takes an average of five years to get diagnosed, according to the National Fibromyalgia Association (NFA). One reason is that fibromyalgia can’t be identified through diagnostic tests such as blood work, MRIs, CT scans and X-rays, says Patrick Wood, M.D., a fibromyalgia specialist who practices in Seattle. Also complicating diagnosis: The condition can strike with a host of co-existing conditions – such as chronic fatigue syndrome, depression and lupus – and involve pain in many parts of the body. As a result, many people with fibromyalgia struggle to find both answers and relief. Here, experts explain the science behind 5 common beliefs about this chronic pain disorder. 1. Fibromyalgia isn’t a real disease Well, that’s actually true. It’s not a disease, but a disorder. The distinction is important: Diseases have specific causes. Disorders (or syndromes) are a collection of symptoms and other medical problems that occur together. “I don’t think a lot of primary-care physicians and specialists are aware it’s a disorder, not a disease,” says Ann Vincent, M.D., a fibromyalgia researcher at the Mayo Clinic in Rochester, Minn. However, in 1990, the American College of Rheumatology published a list of criteria that made it easier for doctors to identify and treat fibromyalgia. Because there are no diagnostic tests, doctors rely on self-reported symptoms, patient histories and a physical examination to see if patients fit this criteria. To be diagnosed with fibromyalgia, patients must have chronic, widespread pain that has been present for at least three months. Pain has to occur on both sides of the body, above and below the waist. The exam also includes checking for soreness in 11 of 18 “tender point sites,” which include the back of the head, upper chest and tops and sides of knees. These are tested by applying moderate pressure on each area. 2. Fibromyalgia is all in the patient’s head This is false, but many patients are left feeling that way when doctors don’t detect their fibromyalgia or misdiagnose it as solely the depression, anxiety or trauma that often accompany it. When they do find a doctor who suspects fibromyalgia, the physician must convince patients they aren’t imagining their symptoms. “I sometimes show them evidence from a 2002 study [done at Georgetown University Medical Center and the National Institutes of Health] proving that patients with fibromyalgia feel pain more acutely than other people,” says John Stracks, M.D., an integrative medicine physician who practices at Northwestern Memorial Hospital in Chicago. Getting an official diagnosis can ease the emotional impact of the chronic pain. Increased awareness of the disorder also helps, according Abts, the Seattle fibromyalgia patient. “Now there are online support groups for sufferers,” she says. “Every time I hear an ad for [fibromyalgia medication], it startles me. I can't believe that there's a drug geared to fibro patients.” 3. Everyone with fibromyalgia has the same symptoms No two fibromyalgia patients are alike. The disorder has a number of symptoms, with varying degrees of severity that can affect different parts of the body. “In general, many paths lead to the symptoms of fibromyalgia," Stracks says. "So each patient I see gets a different combination of recommendations based on what I think the primary causes are." According to the NFA, symptoms can include the following: Joint and muscle pain Chronic tension headaches and migraines Numbness Fatigue Depression Anxiety, insomnia Hypersomnia (sleeping too much) Irritable bowel syndrome (IBS) Tingling, burning and skin sensitivity Chronic low-grade fever and flulike symptoms Restless legs Dizziness Vision problems Impaired memory and cognitive function “[The range of symptoms] makes the disease so hard to treat in a conventional setting. I don't think there's any single treatment that will work for all patients, unlike, say, strep throat, which always responds to penicillin.” 4. Fibromyalgia and chronic fatigue syndrome should be treated the same One of the biggest debates among fibromyalgia specialists is the relationship between the disorder and chronic fatigue syndrome. Some insist the two are separate conditions with their own symptoms; others argue they’re the same. One difference, according to Stracks: Fibromyalgia patients are more likely to have thyroid complications, while chronic fatigue sufferers have more problems with adrenal function. Both can leave patients with low energy levels, but because they stem from different causes, using the same treatment for both could be harmful, he adds. 5. Fibromyalgia isn’t treatable Not true. There are several ways to manage it. Medication: The Food and Drug Administration has approved medications such as pregabalin (Cymbalta), milnacipran (Savella) and duloxetine (Lyrica) to treat fibromyalgia. These drugs – which were designed to treat other conditions, including depression, neuropathic pain and seizure disorders – are usually prescribed to treat fibromyalgia-related muscle and joint pain, says Wood. They do, however, come with potential side effects, including weight gain, drowsiness and loss of sex drive. Woods recommends patients avoid food additives like monosodium glutamate and the artificial sweetener aspartame, which can increase pain. Taking fish oil supplements and avoiding common allergens, such as eggs, wheat and dairy, may also help. Psychological treatment: “Depression and/or depressive symptoms are prevalent among patients with fibromyalgia,” Wood says. So treating that problem can improve quality of life. If stress is a factor, as it is for many fibromyalgia sufferers, cognitive behavioral therapy (CBT) can provide better ways to manage it. Several reputable studies, including one in 2006 by the University of Louisville, Ky., have found people with high levels of childhood trauma are more likely to develop fibromyalgia. For these patients, Stracks calls on the help of clinicians with experience in trauma healing. Diet: Fibromyalgia patients should consume foods with anti-inflammatory properties, to prevent pain caused by inflammation. “That means limiting foods with simple sugars and carbohydrates, fatty meats, and processed and fast foods,” Stracks says. “Instead, people with fibromyalgia should eat mostly lean meats, complex carbohydrates, fruits, vegetables, and nuts and seeds.” Exercise: Gentle exercise such as yoga, water aerobics and daily walking can be helpful, Stracks says. But if you have a flare-up of symptoms, don't feel bad about taking it easy, he points out. Education: Learning more about how fibromyalgia affects your body and daily life can make it easier to ward off pain triggers. Abts participated in a three-week pain management class and credits it with helping her gain control of symptoms. “I learned that the ideal split of time is one-third work, one-third fun and one-third leisure,” she says. “I keep that model in mind when scheduling things.” She also discovered the importance of having realistic expectations. “I had to learn to cope with some pain, and then modify exercise, diet and environment (as much as possible) to reduce flare-ups.” To learn more about this disorder, visit our Fibromyalgia Health Center. How Much Do You Know About Fibromyalgia? Described by Hippocrates in ancient Greece, fibromyalgia is one of the world’s oldest medical mysteries. The disease – a complex illness marked by chronic muscle, tendon and ligament pain, fatigue and multiple tender points on the body – affects about 2% percent of Americans, most of them women.