The condition involves chronic, widespread pain, and can also cause weakness, fatigue, and memory problems.
In 2017, Lady Gaga postponed the European leg of her world tour because she was in “severe physical pain,” according to a statement posted on Twitter. This comes just days after the singer cancelled a performance in Brazil and revealed that she suffers from fibromyalgia—a chronic illness she also addresses in her documentary, Gaga: Five Foot Two.
While Gaga may be one of the highest-profile celebs to speak out about a struggle with fibromyalgia, she’s certainly not alone. The disorder affects an estimated 5 million adults, according to the National Institutes of Health.
To learn more about the chronic and often debilitating illness, Health spoke with Roland Staud, MD, professor of medicine at the University of Florida’s Center for Musculoskeletal Pain Research. Although Dr. Staud is not involved in Lady Gaga’s care, he has researched fibromyalgia extensively and treated many other patients who suffer from it. Here’s what we learned.
Fibromyalgia involves “amplified” pain signals
“Fibromyalgia is a disorder of disordered sensory processing,” explains Dr. Staud. “Signals in the body, particularly pain signals, are amplified to an extensive degree.” The resulting pain generally affects deep tissues—like the muscles, ligaments, and joints—and is often accompanied by other symptoms including fatigue, sleep problems, and trouble thinking.
Why fibromyalgia occurs is “only partially understood,” says Dr. Staud, but the condition has been linked to stressful or traumatic events, repetitive injuries, illness, and certain diseases. Fibromyalgia can also run in families, and some experts believe that one or multiple genes may play a role, affecting how strongly people react to pain.
Diagnosis involves ruling out other conditions
Anyone can get fibromyalgia, but between 80% and 90% of those diagnosed are adult women—most of whom are diagnosed in middle age. There is no test to prove that a person has fibromyalgia, so doctors first have to rule out other conditions that could be causing a person’s symptoms.
In the past, a person could only be diagnosed with fibromyalgia if they met the criteria for a certain number of painful or tender areas on the body. “That’s changed more recently,” says Dr. Staud, “so that now a diagnosis is based not just on abnormalities of pain, but also abnormalities of memory and sleep, as well.”
Hospitalization isn’t usually necessary
When her Brazil show was cancelled, Gaga tweeted that she’d been taken to the hospital because she was in so much pain. But Dr. Staud cautions that fibromyalgia pain isn’t something that most people should run to the emergency room for.
It is “important to know that there are really no proven therapies for this condition that need hospital admission.” Instead, he says, patients should work with their doctors to develop long-term treatment plans for managing their pain.
Medication, behavioral therapy, and lifestyle changes can all help
There are currently three medications approved to treat fibromyalgia pain, which Dr. Staud says have “moderate effectiveness.” Cognitive behavioral therapy should also be part of a fibromyalgia treatment plan, he says, because it can help people learn to respond differently to pain sensations and to stressful situations.
Lifestyle modifications—like taking a break from a busy tour schedule—are also critical, says Dr. Staud. “Getting enough sleep is very important, as is proper nutrition and getting light-intensity, low-impact aerobic exercise several times per week,” he says. “It’s also important to reduce stressful events, because anxiety is a consistent problem in fibromyalgia patients that seems to make symptoms worse.”
Patients should ask their doctors about other therapies and alternative remedies that might help with their specific symptoms. In her documentary, Gaga receives treatments for painful muscle spasms; she’s also shown getting massaged and putting ice on sore muscles during and after rehearsals.
It’s associated with stigma—and often with disbelief
Since fibromyalgia has no obvious cause or visible symptoms—and because there is no test to definitively confirm the disease—those who are diagnosed with it often have to deal with the added challenge of not being taken seriously. Gaga hinted at that in her Twitter message in 2017, as well.
“I use the word ‘suffer’ not for pity, or attention, and have been disappointed to see people online suggest I am being dramatic, making this up, or playing the victim to get out of touring,” she wrote. “I use the word not only because trauma and chronic pain have changed my life, but because they are keeping me from living my normal life.”
More research is desperately needed
Gaga also wrote that she will share more of her story when she feels stronger, and that she hopes to raise awareness and help expand research to help others. That’s good news, says Dr. Staud, because there’s still very much that doctors don’t know about the disorder and how best to treat it. (His lab, in fact, is researching those very questions.)
And more good news, says Dr. Staud, is that many people with fibromyalgia are able to successfully manage their symptoms. “They may have to modify their behavior a bit—maybe they wouldn’t want to play contact sports or anything like that,” he says. “But with medication and the right therapy, many people can live relatively normal lives.”
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