Fibromyalgia, a painful but often misunderstood condition affecting millions of Americans, appears to be popping up in more people -- but limited funding for research and skepticism among some doctors about the disease have frustrated patients and inhibited progress toward developing effective treatments.
Fibromyalgia is a chronic condition that causes fatigue, difficulty sleeping, pain throughout the body and an inability to concentrate as well as a host of other symptoms. The cause of the disorder is unknown.
Patients describe the pain from fibromyalgia as an aching or burning all over the body and while it is not crippling, it can be so severe that it interferes with the ability to work. The fatigue from the condition can also vary in severity and can range from mild tiredness to exhaustion.
Russell Rothenberg, a rheumatologist in private practice in Washington, and an associate professor of medicine at George Washington University Medical Center who routinely treats fibromyalgia patients, told United Press International that the disease has been on the increase for the last 15 years but whether this is due to physicians getting better at diagnosing it or it is actually on the rise is unknown.
One reason the disease is being detected more often is "doctors are becoming more and more aware of fibromyalgia," Rothenberg said.
Another reason the increase is the fast-paced, over-achieving lifestyle of our society. "A lot more people are symptomatic with it ... because there is not time to rest, which can make symptoms more critical," Rothenberg said.
Deborah Ader, director of the behavioral and research program in the rheumatic diseases branch at the National Institute of Arthritis and Muscoskeletal and Skin Diseases, said there is no good data on the prevalence of the disease so it is "difficult to document that there's an increase."
The Centers for Disease Control and Prevention does not track the disease and no studies have been done on the prevalence of the condition since the 1980's -- so getting an accurate figure of how many people have the condition across the country is a bit of a guessing game, Lynne Matallana, director of the patient advocacy group the National Fibromyalgia Association, told UPI.
"I think what may be on the increase is the detection of it," Ader told UPI, noting that physicians are more aware of it and are getting better at diagnosing it.
She estimated that two to three percent of the U.S. population suffers from fibromyalgia, although she has heard some estimates go as high as four to five percent.
This would mean somewhere around four to six million people suffer from the condition, but some experts believe it is closer to 10 million, Matallana said. The majority of patients -- 80 percent -- are women, but the illness also affects men. The disease may hit people of all races.
Another problem is that some members of the medical community have not completely accepted fibromyalgia as a real disease, even though the American College of Rheumatology established widely accepted criteria for diagnosing it in 1990.
The disorder is diagnosed by having a history of pain above and below the waist and on both sides of the body. There are 18 tender points -- located on the neck, upper back, chest, elbows, hips and knees -- that are more sensitive in fibromyalgia patients than in normal people.
"It is still controversial" among some physicians, Ader said, noting that there are "definitely doctors who do not take it seriously as a disorder or disease. They think it's all in the mind."
"Many patients find it very frustrating because they often feel they aren't taken seriously by their primary care physician or even their rheumatologist," she said.
Matallana said she saw 37 doctors before she was finally diagnosed with fibromyalgia. The average time from people realizing that something is wrong to getting an accurate diagnosis of fibromyalgia is five years, she said. Initially, she was incorrectly diagnosed with Lupus and ended up in the hospital because the Lupus treatment exacerbated her condition.
Ader noted, "We take it serious at NIAMS and we fund fibromyalgia research."
Rothenberg said in his experience, the bulk of the doubting doctors seem to be those who were trained before 1990 when the diagnosis guidelines were established. Physicians trained after that "are more accepting of it," he said.
The skeptical doctors and the vague, elusive nature of fibromyalgia can make it difficult to get funding to conduct research that could lead to treatments for the disease. Fibromyalgia "has to compete against a mindset that's oriented to diseases with a clear cause," Ader said.
"A lot of clinical scientists are not comfortable with subjective measures like pain," which makes it hard to get them to approve funding for fibromyalgia research, she said. But she noted that there are special emphasis panels at the National Institutes of Health that focus strictly on getting funding for fibromyalgia and a closely related disease chronic fatigue syndrome.
The disease definitely needs a lot more research, she said. The lack of funding limits this but another problem is the lack of researchers. There are not enough scientists working on this disorder, but this too is driven by a lack of research dollars, she said.
Federal funding has been "just a pittance compared to other illnesses that have lot less people affected," Matallana said. She noted that the director of NIAMS Stephen Katz, asked her organization "to create a larger voice in the individual states," which could result in federal pressure to increase research funding.
Mattalanaa's organization has worked to get fibromyalgia education and awareness legislation passed in California and they plan to get similar legislation passed in Tennessee, Texas, Florida, Illinois, Michigan and Alabama.
They also plan to approach the CDC to ask them to begin tracking the disease and paying more attention to it, she said. A CDC spokesperson told UPI that fibromyalgia is not a disease the agency tracks or that states are required to report to the CDC.
This despite the fact that millions have the disease and at least one estimate has calculated that economic costs of the disease due to healthcare expenses, days lost from work and other factors amount to $14 billion a year.
"Definitely we need more money," Ader said, adding that she is "strongly encouraging researchers to submit proposals" for research studies to the NIH.
Because so little is understood about what causes the condition, little progress has been made in developing effective treatments.
"There is no drug that is approved by the Food and Drug Administration for treating fibromyalgia," Rothenberg said. Pharmaceutical companies have been unwilling to search for drugs that might work on the condition because they do not know where to start.
One drug that works well for his patients is a painkiller called Ultracet. The manufacturer, Ortho McNeil, completed a study last year that showed the drug was effective for reducing fibromyalgia pain.
"I'm optimistic that this might work in a lot of fibromyalgia patients," Rothenberg said.
Many patients benefit from antidepressants, painkillers, muscle relaxants and anti-inflammatory medications but none of these are specific for fibromyalgia, he said. "We're still looking for that drug that is going to get down to what the core of the problem is," which he believes is an imbalance of chemicals in the brain and central nervous system.
One promising drug is in development by Merck. The drug, which does not yet have a name, reduces a chemical found in the central nervous system called substance P, which may play a role in causing some of the symptoms of fibromyalgia, Rothenberg said.
Low levels of a brain chemical called serotonin also may play a role in the disease, Ader said. Researchers are also conducting brain imaging studies to determine if there are differences in the brains of fibromyalgia patients as compared with healthy people.
A factor that may additionally complicate attempts to treat the disease is the possibility that there may not be just one form of fibromyalgia, but a number of different disorders that share common symptoms, Ader said.
Non-drug treatments include exercise and rest. Exercise seems to help some patients, but it is difficult for fibromyalgia patients to do, Ader said.
Adequate rest is also important, Rothenberg said. But he noted, "Most people would rather take a pill than take a day off of work."
The good news is that many patients can keep their fibromyalgia symptoms at bay. "Only about 15 percent go on to disability," Rothenberg said. Most patients continue to work and studies over 15 years have found that the symptoms do not tend to get worse with time, he said.
And a few patients, probably less than 10 percent, will go into remission and their symptoms will stop, sometimes for years, Rothenberg said.
Most patients who receive adequate medications, adequate rest, exercise and proper accommodations at work "will do reasonably well," he said. Work accommodations include ergonomic office equipment and positions that do not require overtime due to the need for patients to get rest.
"If a patient gets adequate accommodations, they tend to perform at a fairly high level in the workplace because they tend to be type A personalities," Rothenberg said.
Finding a doctor who is experienced with fibromyalgia and understands the problems associated with it is essential to managing the illness, he said. "The people who tend to do worse are the ones who don't see a doctor who understands their condition."