Myths & Facts: Fibromyalgia

AS A DISORDER considered by many to be fictitious, fibromyalgia (FM) affects a surprising number of people worldwide. In fact, it is one of the most common chronic pain conditions, affecting an estimated 10 million people in the U.S. and an estimated 3 percent to 6 percent of the world population. Of the one in 50 Americans who suffer from FM, 75 percent to 90 percent are women; however, the disease also occurs in men and children of all ethnic groups.¹ And, it is believed there is a genetic component since a study conducted by the American College of Rheumatology showed women who have FM often have a family member diagnosed as well.²

FM dates back to the 1600s when it was coined “muscular rheumatism”;³ however, the condition wasn’t actually studied until the 1800s. William Balfour, MD, a surgeon at the University of Edinburgh, was the first person to medically describe FM in 1816, and in 1824, he described its tender points and what they are. In 1904, the name to describe symptoms of FM was changed to fibrositis by Sir William Gowers, a British neurologist, to recognize the tender points those with the condition experienced.² Hugh Smythe, MD, laid the foundation for the modern definition of FM by describing widespread pain and tender points. During that same time, no evidence of inflammation could be found, so the name of the disorder was changed from fibrositis to FM (meaning pain in muscles and tissues).³

Unfortunately for those afflicted by the disorder, it wasn’t until 1987 when FM was recognized as a “real” physical condition by the American Medical Association, and it took until 1990 for the American College of Rheumatology (ACR) to develop diagnostic criteria to be used for research purposes.³ The reasons for the delayed recognition were differing theories about what FM is and what causes the disease. Further, since FM mostly affects women, most doctors considered it a psychological disorder whose victims were “hypochondriacs, malingering or simply trying to get attention.” Indeed, many people still view the condition skeptically, with some physicians believing it is a “fad” disease.^3,4 Therefore, it is crucial to separate myths from facts about FM to ensure patients receive the care they require.

Separating Myth from Fact

Myth: FM is not a real disorder.

Fact: FM is a real, neurologic chronic condition. It is the second most common condition affecting the bones and muscles (the first is osteoarthritis). Classic symptoms are widespread pain in muscles, joints and tendons throughout the body and fatigue.⁵ Yet, FM is often misdiagnosed and misunderstood. Some doctors don’t believe the condition is real since pain is subjective and can be difficult to measure. “The most common and pervasive myth about fibromyalgia (amongst the medical community and at large) is that ‘it’s all in your head,’” said Donnica Moore, MD, president of Sapphire Women’s Health Group. “While we don’t know the exact mechanism of fibromyalgia, we do know that it is a diffuse, common pain syndrome characterized by patterns of muscular tenderness on both sides of the body called trigger points.”⁶

“Most doctors think that if your elbow hurts, or your knee hurts or your shoulder hurts, the pathology is directly in those areas,” said Don L. Goldenberg, MD, a rheumatologist and professor emeritus of medicine and nursing at Oregon Health and Science University in Portland. “In fibromyalgia, that doesn’t work. The pain is actually coming from the brain.” Misunderstanding of the origins of the pain, said Dr. Goldenberg, is “one of the reasons it’s very controversial, and was for a long time kind of pooh-poohed as ‘it’s all in your head.’”⁷

Myth: The only symptom of FM is pain. Fact: While widespread pain is the most common symptom of FM, there are many other symptoms that often accompany it, including irritable bowel syndrome, daytime fatigue, thinking and memory problems, insomnia, depression, headaches, numbness and tingling, pelvic pain and temporomandibular disorder (TMJD).^5,8 In 1999, the Fibromyalgia Network discovered that up to 90 percent of FM patients have the sensitivity that mimics TMJD, and half of FM patients display sensitivity to odors, bright lights, noise, various foods and medications.²

The pain caused by FM can be so severe that people can often be unable to do things they otherwise love to do. And, these additional symptoms can seriously impact everyday life and the ability to live a normal life.⁶

Myth: FM and arthritis are the same condition.

Fact: Arthritis and FM have little in common other than sensations of pain and fatigue. Whereas arthritis affects the joints, FM does not; it affects muscle and soft tissue. In addition, FM isn’t a disease characterized by inflammation, and in those afflicted, inflammation markers tend to be normal.⁷

Myth: It is known what causes FM.

Fact: The causes of FM are unclear and may differ for different people. What is known is FM is not from an autoimmune, inflammation, joint or muscle disorder. Instead, the central nervous system (brain and spinal cord) is thought to be involved. Researchers believe FM amplifies painful sensations by affecting the way the brain processes pain signals. Specifically, repeated nerve stimulation causes an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a memory of the pain and become more sensitive, meaning they can overreact to pain signals.⁹

Researchers also believe certain genes can make people more prone to FM and other health problems that can occur with it (but genes alone do not cause FM).⁹ A study conducted in 2009 by the Centers for Disease Control and Prevention (CDC) found as many as 28 percent of children born to a parent with FM eventually develop the disease.²

According to the National Institute of Arthritis and Musculoskeletal and Skin Disorders, there are likely numerous factors that increase the risk of triggering FM, including a physically or emotionally traumatic event such as a car accident (50 percent, according to the CDC study²), repetitive injuries, genetics, problems with the central nervous system contributing to how the brain processes pain and a connection with other illness⁶ (FM often occurs in individuals who have other rheumatic diseases such as lupus and rheumatoid arthritis2 ). However, the CDC study also found 40 percent of FM cases occur spontaneously without any apparent cause or trigger.²

Myth: FM is a “catchall” diagnosis.

Fact: Because there isn’t any single test or obvious symptom for FM, which makes it difficult to diagnose, many believe it to be a “catchall” or “fallback” diagnosis. However, there are specific diagnostic criteria developed by ACR.⁷

Since 1990, FM was diagnosed primarily by the presence of tender points (small areas of the body located near but not on a joint that causes pain when pressed). Yet, while tender points are characteristic of FM, studies have long questioned their ability to correctly diagnose the disease. In response, ACR revised its guidelines for diagnosis in 2010 and again in 2016, replacing the tender points exam with two separate tests that characterize the overall symptomatic experience: the widespread pain index (WPI) and the symptom severity scale (SS).

WPI is a questionnaire that asks patients if they have experienced pain in any one of 19 parts of the body in the past week. Each “yes” response is given a score of one for a possible maximum score of 19. SS is a questionnaire that ranks the severity of four different symptoms (fatigue, unrefreshed sleep, cognitive symptoms and physical symptoms) on a scale of zero to three for a possible maximum score of 12. To definitively diagnose FM, a doctor needs to confirm either a WPI of seven or more with an SS of five or more or a WPI of three to six with an SS of nine or more, persistent symptoms at a similar level for at least three months and no other explanation for symptoms.

According to ACR, these new criteria shifted the focus from a specific pain at a point in time to an overall characterization of the disease state. Research published in the journal Arthritis Care & Research showed these new criteria were able to capture 88.1 percent of people with FM without the need for a tender point exam — a significant improvement over the previous criteria for which early studies had suggested tender points, when used in isolation, could render a correct diagnosis in only 50 percent of cases.¹⁰ However, it is important to note that a positive WPI and SS can only render a presumptive diagnosis. First, other conditions that can present with similar symptoms based on age, sex, medical history and co-occurring illnesses must be ruled out. These include:¹⁰

• Ankylosing spondylitis
• Hepatitis C
• Hypothyroidism
• Lupus
• Multiple sclerosis
• Myasthenia gravis
• Polymyalgia rheumatica
• Rheumatoid arthritis
• Scleroderma
• Sjögren’s syndrome

Myth: There are no medicines to treat FM.

Fact: There are three U.S. Food and Drug Administration (FDA)-approved medicines to treat FM, as well as other non-FDAapproved medicines. Lyrica (pregabalin) was the first medicine approved to treat FM in 2007. Lyrica and another non-approved drug, gabapentin (Neurontin), work by blocking the overactivity of nerve cells involved in pain transmission. The downside to these medicines is they can cause dizziness, sleepiness, swelling and weight gain. Since then, two other medicines have been approved to treat FM that change some of the brain chemicals (serotonin and norepinephrine) that help control pain levels. These include duloxetine (Cymbalta) approved in 2008 and milnacipran (Savella) approved in 2009. In addition, two older medicines that affect these same brain chemicals (amitriptyline [Elavil] and cyclobenzaprine [Flexeril]) can also be used to treat FM. And, antidepressant drugs can be helpful in some patients.⁸

Opioid narcotics are discouraged for use in treating FM since they can cause greater pain sensitivity or make pain persist. However, tramadol (Ultram) may be used short-term if an opioid narcotic is needed. And, while over-the-counter medicines such as acetaminophen (Tylenol) or nonsteroidal anti-inflammatory drugs such as ibuprofen (Advil, Motrin) or naproxen (Aleve, Anaprox) are not effective for FM pain, they can treat the pain triggers of FM.⁸

Myth: Only prescription medicines can relieve FM symptoms.

Fact: Robert Bolash, MD, a pain management specialist at Cleveland Clinic, said medications account for only 20 percent to 30 percent of treatment.⁵ In fact, Mark J. Pellegrino, MD, of Ohio Pain and Rehabilitation Specialists and author of 13 books on FM, says the “three pillars of treatment” for FM are medicine, supplements and physical therapy.

Dietary supplements commonly used to treat FM symptoms include:¹¹

• 5-HTP (5-Hydroxytryptophan), a building block for the brain chemical serotonin. Since low levels of serotonin are associated with depression, it’s believed that raising serotonin levels can lead to a better mood. One study found 5-HTP supplements may also help ease anxiety, insomnia, FM pain and morning stiffness.
• SAMe (S-Adenosyl-L-Methionine), an amino acid derivative that may boost levels of serotonin and dopamine, another brain chemical. Limited research suggests SAMe may improve mood and sleep.
• Magnesium, an element that may be linked to FM. However, research has not found that taking magnesium supplements improves symptoms.
• Melatonin, a hormone often used in supplements to improve sleep, which may ease FM pain.
• St. John’s wort, an herb sometimes used to treat certain FM symptoms. But, there’s no evidence it works. And, while a few studies suggest it may help with mild depression, it can also limit the effectiveness of some medications.

In addition to physical therapy, patients are encouraged to incorporate other forms of nondrug therapies such as cognitive behavioral therapy, acupuncture, chiropractic care and massage.8 Recently, a study published in the Journal of Sleep Research found cognitive behavioral therapy for pain can lead to an immediate decrease in the use of sleep medications among people with insomnia due to FM. However, such behavioral therapy is not effective in the long-term or as a stand-alone treatment, with medication use returning to pretreatment levels after about six months.¹² A study in 2017 found a connective tissue massage helped with pain, fatigue and sleep disruption in women with FM.⁷

It is also recommended to address risk factors and triggers for FM, including sleep disorders such as sleep apnea and mood problems such as stress, anxiety, panic disorder and depression, which may require involvement of other specialists such as a sleep medicine doctor, psychiatrist and therapist.⁸

Finally, another recent study published in Clinical and Experimental Rheumatology shows adding medical cannabis to standard pain relief therapy leads to clinical improvements in a significant proportion of patients with FM, particularly among those with sleep problems and a lower body mass index. Medical cannabis treatment is a recently introduced therapeutic option for patients who are dissatisfied with their current pain relief treatment.¹³

Myth: People with FM shouldn’t exercise.

Fact: According to ACR, exercise is the single most effective treatment for FM. Aerobic exercises that include walking, biking, swimming and water aerobics have been found to be most useful. But, stretching and strengthening exercises using weights, machines, bands or one’s own body weight are also helpful.⁷

Yoga and tai chi are also highly recommended to ease symptoms of FM. In fact, a 2018 study suggests tai chi may be as good or better than aerobic exercise. In the study, 226 participants, of which 92 percent were women who had suffered from FM for an average of nine years and had not been treated with alternative medical therapies in the six months preceding, compared the effectiveness of sessions of tai chi with aerobic exercise. Changes in their symptoms were assessed at 12, 24 and 52 weeks, and participants continued their standard medical treatment throughout this time. Findings showed better outcomes for patients who took part in twice-weekly tai chi classes than for those who took part in supervised aerobic exercise. What’s more, long-term practice of the discipline was found to be more effective than more frequent sessions, with little difference among patients who did tai chi once or twice a week, but increased benefits after 24 weeks of practice as opposed to 12 weeks.¹⁴

Myth: FM is a life-threatening disease.

Fact: FM isn’t life-threatening, and it doesn’t directly cause physiological damage to the body. However, FM can affect a person’s life in different ways. “If you become hopeless in your attitude and focus only on your pain, there is a more likely chance that you will develop other physiological and emotional illnesses,” says Lynne Matallana, founder and president of the National Fibromyalgia Association. For example, she says, if a person doesn’t stay socially active, he or she could become depressed. If someone doesn’t exercise because of his or her pain, symptoms can become worse and can lead to illnesses such as osteoporosis and diabetes.

There are also other potential complications of FM, including lower quality of life, more frequent hospitalizations, higher rates of depression, increased rates of other rheumatologic conditions and higher rates of death from suicide or injury.¹⁵

Dispelling the Myths Now

FM is a disorder that affects millions of people in the U.S. The pain and other accompanying symptoms of FM can severely disrupt a person’s quality of life. Yet, like many other disorders, people with FM have good days and bad. And, with proper treatment, regular exercise and avoidance of triggers, most people attain good symptom relief. But the only way FM patients can get the treatment they need is by dispelling the myths surrounding this disorder, especially the myth that it is a psychological disorder.