For years, fibromyalgia was a mystery illness. No one knew what caused it, how to diagnose it or how best to treat it. Some people, including doctors, even questioned its existence. In the last few years, however, researchers have cleared up some of the mystery. Although much about fibromyalgia still isn’t understood completely, two things are clear: It’s very real, and it affects a disproportionate number of people with rheumatoid arthritis (RA).
What Is Fibromyalgia?
Fibromyalgia is a syndrome marked by widespread pain, fatigue, poor sleep and memory problems. It’s often associated with other symptoms, too, including headache, irritable bowel syndrome and increased sensitivity to temperature changes, light and sound. In some respects, it can resemble RA, which is why patients with both RA and fibromyalgia sometimes go years without the fibromyalgia being diagnosed.
Unlike arthritis, however, fibromyalgia doesn’t affect or damage joints or other tissues. “Fibromyalgia pain tends to occur where arthritis pain doesn’t, such as the trunk, back and muscles in the thighs and arms,” explains Daniel Clauw, MD, a professor at the University of Michigan and noted fibromyalgia researcher. “Qualitatively, it’s a different kind of pain, too, more diffuse and migratory — not as constant from day to day as, say, rheumatoid arthritis in a finger joint.”
The cause of fibromyalgia pain is also different. Instead of resulting from inflammation, it’s thought to result from changes in the way the brain and spinal cord process and transmit pain signals.
Robert Bennett, MD, professor emeritus at Oregon Health & Science University in Portland, Oregon, and executive director of the Fibromyalgia Information Foundation, explains that in fibromyalgia, pain impulses are intensified, as if the volume on a radio has been turned up full blast.
Dr. Clauw and colleagues first demonstrated an association between fibromyalgia and a heightened pain response in 2002. In their study, people with fibromyalgia had measurable responses to gentle finger pressure in pain-processing areas of the brain. It took twice as much pressure to create similar responses in controls.
These findings have since been corroborated by other research, including a 2013 Harvard study published in Arthritis & Rheumatism suggesting that the brains of people with fibromyalgia are less able to guard against pain signals. This hypersensitivity to pain is known as central sensitization.
Having inflammatory forms of arthritis increases the risk of fibromyalgia. This may be due, at least in part, to chronic pain itself, which causes the brain to become highly sensitized not only to things that hurt but also to things that normally aren’t painful. The hypersensitivity makes arthritis pain worse and can create widespread pain and other symptoms, such as fatigue, even when arthritis is well controlled.
Ann Vincent, MD, a physician-investigator specializing in fibromyalgia at the Mayo Clinic in Rochester, Minnesota, points out, “People with fibromyalgia have pain receptors firing all the time. And in fighting that pain, people become fatigued, have unrefreshing sleep and cognitive problems. It’s important to recognize that chronic pain kicks the symptom burden much higher.”
It’s not clear how many people with RA have fibromyalgia. Researchers used to think it was around 20–30%, but that number may be too low. The current thinking, based on a 2013 study in Arthritis Care & Research, is that fibromyalgia is a spectrum disorder, with symptoms ranging from mild to severe. That means more people are likely to fall under the fibromyalgia umbrella.
“Once patients are diagnosed with RA or lupus, rheumatologists tend to attribute all pain and fatigue to the autoimmune disease. What can end up happening is that the RA is over-treated with disease-modifying drugs or biologics because symptoms such as fatigue and memory problems persist even after joint swelling and inflammation are reduced. Persistence of symptoms should be a blinking neon light to look for central sensitization,” Dr. Clauw says.
How Is Fibromyalgia Treated?
Dr. Clauw says one of the most common misconceptions is that there are no effective therapies for fibromyalgia.
“Fibromyalgia requires both pharmacological and nonpharmacological therapies,” he explains. “Pharmacological therapies address pain processing, and nonpharmacological therapies address the functional consequences of pain. So, for instance, we know [physical] activity is extremely important. Research has repeatedly shown that regular activity is one of the most effective treatments for pain syndromes, just as it is one of the most effective treatments for arthritis. I tell people to take it slowly because if they try to do too much at first, they get frustrated.”
Deep, restorative sleep is also essential for reducing chronic pain, but for many people with fibromyalgia, that’s easier said than done. Pain interferes with normal sleep, and lack of sleep makes pain worse. Conversely, a good night’s rest can significantly improve fibromyalgia symptoms.
Relaxation techniques, meditation, massage, deep breathing and cognitive behavioral therapy — a type of therapy that can help change certain thought and behavior patterns — are also helpful for relieving pain and fatigue.
Nonpharmacologic approaches are particularly important because the three drugs approved to treat fibromyalgia — pregabalin (Lyrica), duloxetine (Cymbalta) and milnacipran (Savella) — are only moderately effective. Dr. Clauw emphasizes that most patients find relief with a combination of treatments.
He also recommends that people with RA who have ongoing pain and other symptoms ask their doctor about fibromyalgia.
“That question may cause your physician to have an ah-ha moment,” he says.
Linda Rath for the Arthritis Foundation