Myths and Facts: Fibromyalgia

According to the Old Testament, Job described physical anguish that bore the same symptoms of what, today, is known as fibromyalgia: “I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, ‘When will it be morning?’ But the night drags on, and I toss till dawn … And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones” (Job 7:3-4; 30:16-17 NLT).

Throughout history, many well-known people reported fibromyalgia-like symptoms, including Florence Nightingale, who became ill while working on the front lines during the Crimean War (1854-1856) and was later bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia.¹

Originally, this mysterious illness that has been studied since the 1800s was referred to by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term “fibromyalgia” was first coined by doctors in 1976 in an effort to describe its primary symptom (fibro, meaning fibrous tissue; my, meaning muscle; and algia, meaning pain).¹ And, in 1987, fibromyalgia was first recognized by the American Medical Association (AMA) as a “true” illness and the cause of disability.² Yet, despite the widespread complaints of fibromyalgia symptoms that have persisted, many individuals and medical professionals continue to believe that this condition is psychiatric or psychosomatic. But, that is changing.

Separating Myth and Fact

Myth: Fibromyalgia is all in a person’s head.

Fact: Fibromyalgia is a real, complex illness that is characterized by a variety of symptoms, above all persistent and widespread pain with multiple tender points, poor quality of sleep and fatigue.³ This condition is included in the World Health Organization Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems published in 1992. Unfortunately, fibromyalgia is sometimes thought of as the “garbage-can diagnosis,” says Connie Leudtke, RN, nursing supervisor of the Fibromyalgia and Chronic Fatigue Clinic at Mayo Clinic, Rochester, Minn. In essence, if doctors can’t find anything else wrong, they say the individual has fibromyalgia.⁴

Because fibromyalgia is defined by a list of symptoms, most doctors believe that individuals’ symptoms are real. But, because these symptoms can’t be reversed or cured, they often don’t believe it’s caused by an underlying disease. In addition, since individuals with fibromyalgia don’t look sick, it’s difficult to convince others that there is anything wrong with them, especially since the symptoms come and go. In fact, people often assume that those complaining of fibromyalgia symptoms are faking their problems to get out of work or to lighten their load at home.⁵ But, more people are understanding that fibromyalgia is a real problem, usually because they know someone who has it.⁴

Myth: Fibromyalgia is difficult to diagnose.

Fact: It can take some time to diagnose fibromyalgia, oftentimes because doctors will need to run many tests to rule out other diseases and conditions first. And, there are no blood or X-ray tests to help doctors diagnose fibromyalgia. However, in 1990, the American College of Rheumatology developed a set of criteria that helps doctors diagnose fibromyalgia, and in May 2010, it published new provisional criteria to address certain limitations to the 1990 criteria. Under the 1990 criteria, pain was the only symptom mentioned. To be diagnosed, the patient had to have pain in all four quadrants of the body and in the axial skeleton (bones of the head, throat, chest and spine) that has been present on a more or less continuous basis for at least three months, and pain in at least 11 of 18 tender points, which are specific spots on the body that hurt when pressure is applied. The new 2010 criteria take into account more symptoms, including fatigue, waking unrefreshed, cognitive symptoms and somatic symptoms, such as headache, weakness, bowel problems, nausea, dizziness, numbness/tingling and hair loss. The new criteria also provide a method for monitoring symptom severity, and they provide flexibility: The same person can have different results at different times. The researchers behind this new criteria say they are about 88 percent accurate.⁶

Myth: The mind has nothing to do with fibromyalgia symptoms.

Fact: While fibromyalgia is not all in the mind, the mind does play a role in fibromyalgia symptoms. “Studies have shown that anxiety that occurs in anticipation of pain is much more problematic than the pain experience itself. In that sense, the mind has a negative impact on symptoms,” says Dr. Leudtke. “Many of the people who come to our fibromyalgia clinic are perfectionists who have very high expectations for themselves; likewise, they can’t adjust to more realistic expectations after they develop fibromyalgia symptoms. These people have difficulty learning to relax. They may push through the pain and keep doing activities to the point they crash and burn and need extra time to recover. So, the pain keeps reinforcing itself in a never-ending cycle.”⁴

Myth: Fibromyalgia affects only women and older adults.

Fact: Men do suffer from fibromyalgia. However, women are 10 times more likely than men to get fibromyalgia syndrome. And, while fibromyalgia is usually diagnosed between the ages of 20 and 50, it can occur in individuals of all ages, including children.³

Myth: There is a magical diet for fibromyalgia.

Fact: There may be anecdotal evidence, but there is no research-based evidence that shows that any particular substance in a diet will cause symptoms, or that removing any substances will make the pain go away. However, people with fibromyalgia do tend to use more dietary supplements, and some think that they should avoid certain foods, such as refined flour and sugar, sugar substitutes, the caramel color in some soft drinks or carbonated drinks in general.⁴

Myth: There are no medicines to treat fibromyalgia.

Fact: Doctors can recommend and prescribe several medicines to help reduce the pain of fibromyalgia and improve sleep. Common choices include analgesics, antidepressants and anti-seizure drugs.⁷

Analgesics. Acetaminophen (Tylenol and others) can ease the pain and stiffness, but its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that can be taken with or without acetaminophen. Doctors also may recommend nonsteroidal anti-inflammatory drugs, such as ibuprofen (Advil, Motrin and others) or naproxen sodium (Aleve and others), in conjunction with other medications.

Antidepressants. Duloxetine (Cymbalta) and milnacipran (Savella) can help ease pain and fatigue. And amitriptyline or fluoxetine (Prozac) can promote sleep.

Anti-seizure drugs. Epilepsy medications can reduce certain types of pain. For instance, pregabalin (Lyrica) was the first drug approved by the U.S. Food and Drug Administration to treat fibromyalgia, and Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms.

Myth: Exercise and overactivity are not recommended for people with fibromyalgia.

Fact: Many people with fibromyalgia avoid exercise because they fear increased pain. Yet, while it is difficult for individuals with fibromyalgia to exercise because of deep muscle pain, morning stiffness and painful tender points, aerobic exercise can help ease fatigue, minimize pain, improve quality of sleep and improve mood. In fact, numerous studies show that exercise is one of the most important treatments for fibromyalgia. Regular exercise increases the body’s production of endorphins, natural painkillers that also boost mood.⁸ However, individuals need to pace themselves and set realistic goals for each day. Overdoing it on good days may exacerbate symptoms by doing too much.⁵

Physical therapy also can help relieve fibromyalgia pain and stiffness by relaxing tense muscles. A physical therapist can show individuals the proper way to stretch painful muscles to get optimal relief, and they often use hydrotherapy (moist heat and ice packs) to ease pain more.⁸

Myth: Fibromyalgia can cause lupus.

Fact: While lupus is an autoimmune disease with symptoms similar to fibromyalgia, and they often are confused with one another, they are separate conditions. Lupus is much rarer and can be verified with a blood test. And, while lupus is often a precursor to fibromyalgia (it’s estimated that 30 percent of lupus patients develop fibromyalgia), it is almost certain that fibromyalgia is not a direct cause of lupus.⁹

Myth: Fibromyalgia can cause serious damage to the body.

Fact: Fibromyalgia patients have consistently reported an increase in the severity of symptoms such as pain that results in a decreased level of functioning, which in turn leads to decreased muscle deconditioning. However, fibromyalgia is limited to causing insurmountable damage to a patient’s lifestyle; it does not cause progressive deterioration to the body.³

Dispelling the Myths

Now It is often difficult to believe that a disease is present in fibromyalgia patients, because like many with chronic conditions, they show no telltale outward signs of illness. However, time has proved that fibromyalgia is indeed a real illness. And, while it is incurable, lifestyle changes and a few medications may help to ease patients’ pain and return them to normal functioning lives. As more information circulates to educate the population about the myths and facts of fibromyalgia, it is hoped that the history of fibromyalgia — the days when the disease was considered a psychiatric or psychosomatic disorder — will be just that: past history.