To people living with fibromyalgia, the symptoms are all too real. Muscle tenderness, full-body pain, and brain fog make it hard to function—and getting a restful night’s sleep isn’t much easier. To the frustration of patients, other aspects of the chronic condition—such as what causes it, how to diagnose it, and how to treat it—are more of a mystery. But after decades of rampant misconceptions, we know more facts about fibromyalgia than ever before.
1. SYMPTOMS FEEL DIFFERENT FOR EVERYONE.
Symptoms of fibromyalgia can vary widely. The defining characteristic of the condition is widespread pain, or pain felt throughout the entire body, but how often this pain occurs and how intensely it’s felt is different in each patient. Some people may feel pain reminiscent of a sunburn, a pins-and-needle sensation, sharp stabbing, or some combination of the above. Beyond pain, the condition can come with fatigue, disrupted sleep, depression and anxiety, and trouble focusing (known as “fibro fog”).
2. IT AFFECTS MOSTLY WOMEN.
Most fibromyalgia patients are female, making it more prevalent in women than breast cancer. Not only are women more likely to have fibromyalgia than men, but they report experiencing the symptoms more acutely as well. Researchers still aren’t sure why the condition has a disproportionate impact on women, but they speculate that because the diagnosis is most common during a woman’s fertile years, it may have something to do with estrogen levels. Some experts also suspect that the condition may be under-diagnosed in men because it’s often labeled a woman’s problem.
3. IT’S RARE.
Though it has gained visibility in recent years, your chances of experiencing fibromyalgia are still slim. According to the Centers for Disease Control and Prevention, it affects roughly 4 million adults in the U.S., or 2 percent of the population. Fibromyalgia’s similarity to other mysterious conditions also means it is likely overdiagnosed, so that number may be even lower.
4. MOST PEOPLE GET IT IN MIDDLE AGE.
People who have fibromyalgia tend to develop it well into adulthood. The condition is most common in 30- to 50-year-olds, but people of all ages—including children and seniors—can have it. Fibromyalgia in patients 10 and younger, also called juvenile fibromyalgia, often goes unrecognized.
5. IT’S HARD TO DIAGNOSE.
There’s no one medical test that you can take to confirm you have fibromyalgia. Instead, doctors diagnosis patients who exhibit the condition’s most common symptoms—widespread pain, fatigue, trouble sleeping, and muscle tenderness in certain points on the body—by process of elimination. Polymyalgia rheumatica and hypothyroidism (or an underactive thyroid gland) provoke similar symptoms, and both show up in blood tests. Doctors will usually tests for these conditions and others before diagnosing a person with fibromyalgia.
6. THE NAME IS RELATIVELY NEW.
People have suffered from fibromyalgia for centuries, but it received its official name only a few decades ago. In 1976, the word fibromyalgia was coined to describe the condition, with fibro coming from fibrous tissue, myo from the Greek word for muscle, and algia from the Greek word for pain. The name replaced fibrositis, which was used when doctors incorrectly believed that fibromyalgia was caused by inflammation (which –itis is used to denote).
7. IT MAY BE ASSOCIATED WITH PTSD.
Health experts have long known that post-traumatic stress disorder can manifest in physical symptoms—now they suspect the disorder is sometimes connected to fibromyalgia. According to a study published in the European Journal of Pain in 2017, 49 percent of 154 female fibromyalgia patients had experienced at least one traumatic event in childhood, and 26 percent had been diagnosed with PTSD. Researchers also saw a correlation between trauma and the intensity of the condition, with subjects with PTSD experiencing more and worse fibromyalgia pain than those without it.
8. IT’S NOT “ALL IN YOUR HEAD.”
As is the case with many invisible illnesses, fibromyalgia patients are often told their symptoms are purely psychological. But findings from a 2013 study suggested what many sufferers already knew: Their pain is more than just a product of mental distress or an overactive imagination. The small study, published in the journal Pain Medicine, found extra sensory nerve fibers around certain blood vessel structures in the hands of 18 of 24 female fibromyalgia patients compared to 14 of 23 controls. The study proposed that the nerve endings—once thought to merely regulate blood flow—may also be able to perceive pain, an idea that could help dispel a harmful myth surrounding the condition.
9. IT’S CONNECTED TO ARTHRITIS, CHRONIC FATIGUE SYNDROME, AND IBS.
For many patients, fibromyalgia isn’t the only chronic condition they suffer from. Fibromyalgia has been linked to chronic fatigue syndrome, irritable bowel syndrome, sleep apnea, migraines, rheumatoid arthritis, and other medical problems. In some cases, as with chronic fatigue syndrome, the two conditions have such similar symptoms that their diagnostic criteria overlaps. Others conditions like irritable bowel syndrome are related to fibromyalgia—not confused with it.
10. IT’S PROBABLY NOT GENETIC—BUT IT CAN CLUSTER IN THE FAMILIES.
If you’re closely related to someone with fibromyalgia, you’re more likely to have it yourself. Studies have shown that the diagnosis tends to clusterin families. At first this seems to suggest that the condition is genetic, but scientists have yet to identify a specific gene that’s directly responsible for fibromyalgia. The more likely explanation for the trend is that members of the same family experience the same environmental stressorsthat can trigger the symptoms, or they share genes that are indirectly related to the issue.
11. ANTIDEPRESSANTS CAN HELP …
Since we don’t know what causes fibromyalgia, it’s hard to treat. But patients are often prescribed antidepressants to ease their symptoms. These medications have been shown to alleviate some of the most debilitating hallmarks of the condition, such as general pain and restless nights. Doctors who support antidepressants as a fibromyalgia treatment are quick to note that that doesn’t make the condition a mental disorder. While these drugs can lift the depressed moods that sometimes come with fibromyalgia, they also function as painkillers.
12. … AND SO CAN EXERCISE.
One of the most common pieces of advice fibromyalgia patients get from doctors is to exercise. Hitting the gym may seem impossible for people in too much pain to get off the couch, but physical activity—even in small doses—can actually alleviate pain over time. It also works as treatment for other fibromyalgia symptoms like depression and fatigue.