Daily struggle with chronic pain, disability defines patients’ lives, experts say.
By Alan Mozes,
Earlier this month, superstar Lady Gaga took to social media to announce that she has long struggled with fibromyalgia.
The news has put the painful and poorly understood illness center stage.
Just this week, the singer announced on Twitter that she’s postponing the European leg of her 2017 “Joanne” concert tour due to what she described as fibromyalgia-related “trauma and chronic pain.”
Gaga hasn’t offered up details of her condition, although it comes just before a new TV documentary about the singer — set to premiere Friday on Netflix — that will reportedly highlight some of her health concerns.
But one thing is already clear: the disease does, at times, pull the rug out from under the performer’s best-laid plans.
“The pain and disability seen in fibromyalgia is typically worse than almost any other chronic pain condition,” explained Dr. Daniel Clauw. He is a professor of anesthesiology, medicine/rheumatology and psychiatry at the University of Michigan.
“[The pain] doesn’t just affect one area of the body you can avoid moving, and often is accompanied by severe fatigue, sleep, memory and other issues,” Clauw noted.
Dr. Marco Loggia added that “it can be extremely debilitating.” Loggia is associate director of the Center for Integrative Pain NeuroImaging at Massachusetts General Hospital in Charlestown, Mass.
“Most of the patients we encounter in our research studies are significantly impacted by the disorder,” Loggia noted, “which sometimes prevents them from having normal work and social lives.”
RELATED: Rheumatoid Arthritis and Fibromyalgia: What’s the Link?
Fibromyalgia was first recognized by the American Medical Association as a distinct disease back in 1987, and is “a relatively common chronic pain disorder,” Loggia said.
How common? The National Fibromyalgia & Chronic Pain Association (NFMCPA) indicates that the illness affects up to 4 percent of the world’s population, and anywhere from 5 million to 10 million Americans. It is much more common among women, who account for 80 percent of patients. Although it can affect children, it is most often diagnosed during middle age.
According to Loggia, the disorder is characterized “by persistent, widespread pain, fatigue, un-refreshing sleep, memory loss, poor concentration and other symptoms.”
The NFMCPA adds that it can also give rise to sensitivity to light and sound, as well as to a degree of psychological distress in the form of anxiety and depression.
But what exactly is it, and how does it develop?
The picture is murky, with the U.S. National Institute of Arthritis and Musculoskeletal and Skin Diseases flatly acknowledging that “the causes of fibromyalgia are unknown.”
But experts suggest that the disorder is likely driven by several factors, including exposure to a traumatic event (like a car crash) and/or exposure to repetitive injuries. Central nervous system disturbances may also play a role, as might a genetic predisposition to feel pain in reaction to stimuli that most people perceive as benign.
Struggling to find more in-depth answers, Loggia noted that American and German researchers have recently identified a subset of fibromyalgia patients who appear to have abnormalities in some of their peripheral small nerve fibers.
His own research suggests that some degree of brain inflammation may be at play, given that brain inflammation is common among chronic back pain sufferers and most fibromyalgia patients suffer from chronic back pain.
Unfortunately, Clauw cautioned that the failure to identify a clear cause for fibromyalgia has given rise to the myth “that it is not real.” That, he said, is decidedly not the case.
“Traditionally, patients with fibromyalgia have been met with a great deal of skepticism, stigma and even condescension, including by many physicians that are supposed to take care of them,” Loggia said. “Even today, their pain is often dismissed as ‘all in their head,’ not real,” he added.
“However, many studies — and particularly those using brain imaging techniques such as functional magnetic resonance imaging — have now provided substantial support to the notion that the excessive sensitivity to pain that these patients demonstrate is genuine. I think that it is time to stop dismissing these patients,” Loggia said.
What these patients need now are “better drug and non-drug treatments,” Clauw said.
“We’ve only begun to take this condition seriously from a research standpoint for about 20 to 30 years,” he noted, adding that there are no “really effective” drugs for fibromyalgia.
Loggia said that means a lot of the focus has been placed on pain management, with patients turning to interventions such as painkillers (opioids) as well as yoga and cognitive behavioral therapy. “But these interventions are rarely ‘completely curative,’” he added.
As for Lady Gaga, she likely faces a better prognosis than most.
“That this was diagnosed when she was younger is good, because many people go years or decades undiagnosed,” Clauw said. “But she also almost certainly got better recognition and treatment for her condition given who she is. Others in similar medical — but different social — situations would struggle to even find a doctor to see them and take them seriously.”