When Frances Winfield Bremer stepped up to the podium at the National Press Club in Washington, D.C., in January, she was by turns grave and good-humored — tackling her topic, fibromyalgia, with a deft touch. A teacher, writer, artist and wife of former U.S. Iraqi envoy L. Paul Bremer III, she was also candid about a disease she said has shaped her life.
“This is not a death sentence,” Frances Bremer said. “But it is a life sentence. As I stand here my clothes hurt. My hands hurt resting on this nice podium. The skin of my face hurts because it’s a little cold today.”
Bremer has fibromyalgia syndrome (FMS), which primarily afflicts women and is characterized by chronic, at times debilitating pain, stiffness, tender points throughout the body, fatigue and sleep difficulties. FMS is sometimes found in people who also have rheumatoid arthritis, clinical depression, lupus, irritable bowel syndrome or chronic fatigue syndrome, as well as those who later develop Parkinson’s disease. Symptoms come in cycles and may last a year, a week, or 24 hours.
Indeed, given its unpredictable nature and ability to overlap with other conditions, fibromyalgia often confounds doctors and patients alike. For instance, many — but not all — fibromyalgia patients suffer from clinical depression, although patients can respond to treatment with antidepressants whether diagnosed with fibromyalgia or not.
According to Dr. Daniel Clauw, a professor at the University of Michigan Medical School and executive director of its Chronic Pain and Fatigue Research Center, the fibromyalgia-depression connection varies for two reasons: First, fibromyalgia co-occurs with a host of other diseases partly because our brain chemicals multitask, and neurotransmitters out of kilter in fibromyalgia have a role in other body processes and diseases, including clinical depression and Parkinson’s. Second, anyone with chronic pain has a heightened risk of normal or “reactive” depression to that initial medical condition. “Depression is 20 to 25 percent more common among people with any chronic disease, such as diabetes,” Clauw noted.
As a result, fibromyalgia patients can present doctors with a confusing collection of symptoms that have often been misdiagnosed—or dismissed as imaginary.
Pushing the Issue Bremer is part of a push to improve physician education and public awareness about fibromyalgia, serving as spokeswoman for the National Fibromyalgia Association, which sponsored the January press conference. She is also one of the estimated 3 million to 6 million people in the United States who have FMS. Here, as in other countries, fibromyalgia appears in 2 percent to 5 percent of the population, experts say, primarily among middle-age women. (The female to male ratio is nine to one worldwide.)
This type of education push is needed, patients and advocates say, because it is “still a problem to get diagnosed with FM [fibromyalgia], be taken seriously, and to find a knowledgeable doctor,” said Gwenn Herman, founder and director of the Pain Connection – Chronic Pain Outreach Center in Maryland.
Before her fibromyalgia was identified in 2005, Herman had seen 19 physicians and 20 other therapists. California resident Lynne Matallana, 53, founder and president of the National Fibromyalgia Association, had a similar experience. “I saw 37 doctors over a period of two and a half years,” she recalled. Matallana was diagnosed with fibromyalgia in 1995, but even with health insurance, her family’s out-of-pocket expenses came to ,000.
Bremer, who also “struggled for years” with mysterious symptoms, said, “It’s a tremendous relief to have a name for it.”
For both patients and practitioners in the field, it’s been an uphill battle for recognition—but why?
Ignorance and gender bias as well as the vague symptom profile are some of the reasons, according to D.C.-area rheumatologist Dr. Sarah Cochran. Similarly, Clauw of the University of Michigan Medical School said skeptics tend to be “older male physicians who have not kept up” with the medical literature and current science.
Many of the controversies about fibromyalgia seemed to be largely put to rest in 1990, when the American College of Rheumatology published diagnostic criteria for fibromyalgia that looked to pain and tenderness at 18 pain-sensitive “trigger points” located along muscles in the neck, shoulders, hips and legs. In 2004, experts told The Washington Diplomat that the criteria were being accepted and used worldwide (see February 2004 issue).
However, the controversy and confusion flared up again with the publication of an article in the New York Times on Jan. 14, 2008. Written by Alex Berenson, a reporter who covers the pharmaceutical industry, the article questioned the existence of fibromyalgia and whether the disorder was being used as a vehicle for lucrative new drug offers, such as Pfizer’s recent promotional campaign for Lyrica, the first medicine approved to treat fibromyalgia.
“Advocacy groups and doctors who treat fibromyalgia estimate that 2 to 4 percent of adult Americans, as many as 10 million people, suffer from the disorder,” the article said. “Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.”
Berensen also described fibromyalgia as a “nebulous condition” of “unknown origin” with “vague complaints,” citing skeptical doctors who variously said fibromyalgia was a response to stress or other disorders, or that it was a character deficiency and not a disease—an inability to adapt to life’s “vicissitudes” unlike “most of us.”
In fact, one of the main skeptics quoted in the article was Dr. Frederick Wolfe, director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia. “Some of us in those days thought that we had actually identified a disease, which this clearly is not,” said Wolfe, who now believes fibromyalgia is a physical response to stress, depression, and economic and social anxiety. “To make people ill, to give them an illness, was the wrong thing.”
Fact or Fiction? The National Institutes of Health and the Food and Drug Administration both now recognize fibromyalgia as a medical condition characterized by altered pain processing. The World Health Organization (WHO) recognized it as a “soft tissue disorder” back in 1992, and more recently it has begun to address the pain component.
National Fibromyalgia Association President Matallana met with World Health officials in Geneva last fall, and this March Matallana’s organization was invited to participate in a WHO panel charged with developing new normative guidelines for managing acute and chronic pain.
Driving this increased interest is an “explosion” of fibromyalgia research over the last five years, said the University of Michigan’s Clauw, pointing to thousands of fibromyalgia articles published in medical journals, new articles coming out every month, and “many pharmaceutical companies looking for new drugs to treat it.”
Research at the clinical level shows fibromyalgia patients have a “heightened problem with pain sensitivity,” said Dr. Patrick Wood, chief medical advisor to the National Fibromyalgia Association and a former professor at Louisiana State University. “With damage to their tissues, a fibromyalgia patient will feel significantly more pain” than others with the same damage. Additionally, at the extreme end, a fibromyalgia patient can have pain throughout the entire body without any inflammation or damage to the tissues at all, according to Wood.
It’s not a disease of tissues, however, but a disorder of the central nervous system, brain and spinal cord “masquerading” as something musculoskeletal, Wood said, explaining that fibromyalgia patients suffer from an imbalance in neurotransmitter brain chemicals that affect their pain sensitivity.
In work published this February, Wood and colleagues conducted brain-scan studies involving dopamine, a neurotransmitter that when released into the brain, can control the pain experience. (Dopamine has been found to play a role in schizophrenia and Parkinson’s disease.)
The researches used the brain scans to look at the differences between fibromyalgia patients and healthy subjects when given a painful stimulus. The results showed the healthy subjects releasing dopamine but not the fibromyalgia patients, who experienced more pain than their dopamine-releasing counterparts—“evidence that [they] have an abnormal dopamine response to pain,” according to the study.
In another new study featuring brain scans (published in March by the American College of Rheumatology), Michigan’s Clauw and colleagues looked at the pain interaction of another powerhouse neurotransmitter, glutamate. They did brain scans that examined glutamate levels in FMS patients before and after pain-reduction treatments that didn’t involve drugs. After four weeks of treatment, the participants’ pain levels and their brain glutamate levels both went down. Patients with greater reductions in pain also showed corresponding greater reductions in glutamate.
Such brain scans prove that “patients are telling the truth” about their symptoms, Clauw argued, adding that the notion of fibromyalgia as a psychological disease “is not supported by imaging studies.”
Moreover, studies have revealed interesting differences in gender when it comes to pain response, which may underline fibromyalgia’s strong presence among women. A 2002 study published in the Journal of Neuroscience looked at the body’s built-in opioid or “natural high” endorphin system, examining individual differences in pain response. In a brain-scan study of 14 men and 14 women who received the same painful stimulus, the women reported more intense pain and more negative emotions than the men.
All of the women were studied at a time in their menstrual cycle when levels of estrogen were low. When women with high estrogen levels were exposed to the painful stimulus, they released more endorphins and became better at damping down their pain, resembling the pain responses of their male counterparts.
This gender difference in pain response made sense in light of what is already known about women and pain, according to Dr. Jon-Kar Zubieta, a University of Michigan neuroscientist who led the study. “Women experience chronic pain syndromes more frequently, often in tandem with stress-related mood disorders, and they are also more sensitive to the effects of opiate drugs,” he explained.
In 2003, University of Michigan researchers summarized their estrogen-pain findings at a meeting of the American Association for the Advancement of Science. They said brain scans demonstrated that variations in women’s estrogen levels can affect the brain’s “natural high” chemicals, the endorphins, and thus alter the body’s natural ability to suppress pain, with low estrogen levels resulting in less effective pain control.
In addition to breaking down bias, all of these studies could open the door to new treatments for patients. Glutamate, for instance, could be a new target drug for fibromyalgia and pain control. Wood of the National Fibromyalgia Association noted that three fibromyalgia drugs currently in the pipeline and likely to be approved for patient use in the near future either raise the levels of neurotransmitters that normally stop the spread of pain, or lower the levels that increase pain’s spread.
With evidence like this piling up, most researchers now accept FMS as a distinct medical syndrome. “There’s a consensus,” said Richard E. Harris, a colleague of Clauw’s at the University of Michigan Medical School, although Harris admitted that there remains a group of clinicians “reluctant to embrace it,” estimating that they make up about a quarter of all practicing physicians.
After the Diagnosis “Getting a diagnosis doesn’t have to ruin your life,” Matallana said. “It will change it, but having a positive attitude and partnering with a good health care provider can be helpful, as can, especially in the beginning, a good support group.”
Experts say that the kind of physician you see as a fibromyalgia patient is less important than whether or not that doctor is up to date, empathetic, and willing to work with you on what can be a complicated course of treatment.
“What you really have to do is find an empathetic and caring physician who believes your symptoms are real,” Clauw said.
Primary care physicians, family doctors, internal medicine specialists, rheumatologists and pain specialists can all offer valuable help. Other kinds of caregivers such as physical therapists, massage therapists, acupuncture experts and exercise specialists such yoga instructors are also recommended as possibilities, depending on the patient.
Then, after dealing with the disease to the best of your ability, you need to “move beyond it,” Matallana advised. “Don’t let it be who you are.”
National Fibromyalgia Association: www.fmaware.org
Pain Connection Chronic Pain Outreach Center: www.pain-connection.org
Fibromyalgia online tutorial from the National Institutes of Health: www.nlm.nih.gov/medlineplus/tutorials/fibromyalgia/htm/index.htm
The Food and Drug Administration’s consumer Web site on living with fibromyalgia: www.fda.gov/consumer/updates/fibromyalgia062107.html
Angler Biomedical Technologies, LLC, the Web site of Dr. Patrick Wood, medical advisor to the National Fibromyalgia Association: www.lifebeyondpain.com
“The Complete Idiot’s Guide to Fibromyalgia” co-authored by Lynne Matallana: available at area bookstores and www.amazon.com
About the Author
Carolyn Cosmos is a contributing writer for The Washington Diplomat.