Fibromyalgia: A Disease Without a Medical Home on Orlando Medical News

Fibromyalgia: A Disease Without a Medical Home

By: SHARON H. FITZGERALD

“Ideally, It Would Be Neurology,” Expert Says

Rae Marie Gleason, executive director of the National Fibromyalgia Association, said the tendency still exists among physicians to view fibromyalgia as “an illness of whining women who really could get better if they just wanted to.” Yet, Gleason’s job gets easier every day, as an abundance of research ties those patients’ complaints to brain activity – or lack thereof.

Fibromyalgia Symptoms

Chronic widespread body pain is the primary symptom of fibromyalgia. Most people with fibromyalgia also experience:

moderate to extreme fatigue,
sleep disturbances,
sensitivity to touch, light and sound, and
cognitive difficulties, known as “fibro fog.”

Other patients may also experience:

irritable bowel and bladder,
headaches and migraines,
restless legs syndrome,
skin sensitivities and rashes,
dry eyes and mouth,
anxiety or depression,
ringing in the ears,
dizziness,
vision problems and
Raynaud’s Syndrome, discoloration of fingers, toes and other extremities.

“Ideally, it would be neurology,” Gleason said when asked which medical specialty should own the disease. “But sadly, they’re the ones who know the least about fibromyalgia, and they’re the ones who are the least willing to treat it.” Then she added, “I think if more neurologists had access to the functional MRIs in fibromyalgia and some of the wonderful work that’s being done now on dopamine depletion in the brains of fibromyalgia, I think they would be astounded. Most of them don’t know that.”

The NFA was founded in California in 1997 by President Lynne Matallana, who woke up during a surgical procedure and then awoke post-surgery “feeling that something was drastically different in her body,” Gleason said. Wracked with pain, Matallana visited 37 doctors in three years until her fibromyalgia diagnosis, and she founded NFA for patient information and advocacy. The organization’s mission has expanded through the years to include physician education and research support.

The Research

Matallana’s experience, while unnerving, isn’t shocking to researchers like Patrick B. Wood, MD, a noted fibromyalgia authority. He said “classic narratives” that appear to prompt fibromyalgia are stressful situations and physical trauma.

“There are reasons to believe that simply experiencing stress has an effect on the brain and the central nervous system,” he said.

Wood, who calls fibromyalgia “medicine’s F-word,” said his interest in the syndrome began during his family-practice residency at Louisiana State University, where he treated several fibromyalgia patients. “They seemed very different than the way people stereotyped them. They had some things in common, and I started looking at the literature. I began doing research into it as a result of that,” he recalled. What followed was a psychopharmacology and neuroimaging research fellowship focused on fibromyalgia. Asked if he believes fibromyalgia is a neurological disorder, he replied, “Absolutely. No question about that.”

In Wood’s neuroimaging research, he uses a type of MRI (voxel-based morphometry) to study brain structure. “There’s some atrophy or changes in the size of the brain that have been reported,” he said. Using MR spectroscopy, he evaluates brain metabolism, and his research has shown some abnormalities related to fibromyalgia’s clinical symptoms. Yet Wood is best known for his theoretical work on dopamine, using positron emission tomography to evaluate fibromyalgia patients’ dopamine parameters. “That has shown that patients with fibromyalgia make less dopamine at baseline, and then when you give them a painful stimulus, they don’t release it appropriately,” he said.

“Historical Anachronism”

Wood says rheumatologists treating fibromyalgia is “the great historical anachronism that characterizes the field right now. Because the pain was appreciated in the muscles and the joints, they thought that was the purview of people who did muscle and joint medicine.” Yet, rheumatologic workups came up short.

Nonetheless, fibromyalgia became rheumatology’s stepchild, and diagnostic criteria were established in 1990 by the American College of Rheumatology. Still today, most research in fibromyalgia is presented at rheumatology meetings. In an interesting twist, Wood left LSU last year to join Pacific Rheumatology Research Inc. near Seattle, where he treats fibromyalgia patients and has joined the research of a rheumatologist studying the syndrome.

Gleason said the fact that fibromyalgia is housed with the National Institute of Arthritis and Musculoskeletal and Skin Diseases “has been one of the drawbacks because the way rheumatologists treat pain is to take care of inflammation. Well, there isn’t any inflammation with fibromyalgia. Then it becomes even as perplexing to them as to primary-care doctors.”

Gleason acknowledged that fibromyalgia is a frustrating syndrome to treat. “There isn’t that magic blood test or urine test or X-ray that’s going to prove to you that this person has something severe enough to cause the symptoms that they are telling you they have,” she said. That’s why most neurologists shy away from fibromyalgia patients. Yet she added that, as research progresses, “we’re going to end up right smack dab in the middle of the National Institute of Neurologic Disorders and Stroke. That’s where we need to be, and I think that will happen, but it’s going to take a while.”

In the meantime, she said primary-care physicians are serving as “the orchestra leaders,” recognizing the symptoms of fibromyalgia and ensuring proper treatment protocols.

Stroke Conference Unveils Promising Science

The International Stroke Conference, held in February in San Antonio, offered neurologists a wealth of research abstracts and late-breaking stroke science. Among the findings presented were:

Smoking makes people with three specific gene changes five times more likely to develop an aneurism.
Two ways to open narrowed neck arteries — surgery or stenting — proved similarly safe and effective. Yet younger patients had fewer cardiovascular events with an implanted stent, while older patients had fewer events with the surgical option.
Compared to patients taking aspirin, patients taking the antiplatelet drug cilostazol were less likely to have a subsequent ischemic stroke or develop bleeding requiring hospitalization.
A new anti-clotting drug, dabigatran, proved as effective as the blood thinner warfarin – and at a lower dose. Dabigatran produced less risk of bleeding in the brain than warfarin did. The drug is not U.S. approved, but it is available in other countries to prevent blood clots after elective hip- and knee-replacement surgery.
One study found that blacks are more likely to have an undiagnosed key risk factor for stroke: atrial fibrillation. For blacks who are diagnosed, they are less likely to be treated with proper medication.
Placing stents in the brain and injecting clot-busting drugs directly to the brain had better success rates for acute ischemic stroke than other treatments. There was no excess risk of hemorrhage from either of the two treatments.
Post-menopausal women who ate the most daily dietary fat had a 40 percent higher incidence of ischemic stroke compared to those who consumed the least. In addition, high trans-fat consumption was associated with a 30 percent increase in the incidence of stroke caused by blockages in the brain.
Often considered a disease of old age, stroke is declining in the elderly and increasing at younger ages. The percentage of strokes occurring in people under age 45 has grown significantly since the 1990s.

Into the Future

While it will take fibromyalgia science time to evolve, research “grows by leaps and bounds,” Wood said. A trial balloon is floating in medical circles to establish a new discipline within medicine to take care of fibromyalgia and the allied conditions. “I would very much like to see that happen, but that’s an even greater undertaking in terms of medical culture than just bringing a new group of physicians onboard,” he said.

Several FDA-approved medications are somewhat successful in fibromyalgia treatment: Lyrica (pregabalin), an anti-convulsant; Cymbalta (duloxetine), an antidepressant; and a new antidepressant just approved last year called Savella (milnacipran), a dual selective serotonin and norepinephrine reuptake inhibitor. Another option is Mirapex (pramipexole), which mimics the activity of dopamine and already is used to treat Parkinson’s and restless legs.

“There are other strategies to increase dopamine activity, but they’re certainly not approved and would be quite out-of-the-box,” said Wood, adding that such research has been neglected in drug development. A sleep medication called Xyrem (sodium oxybate), submitted for FDA approval this year, has physicians who treat fibromyalgia watching and waiting. “It works, in part, by increasing the brain’s synthesis of dopamine, and the brain releases more dopamine as a result,” Wood explained. “That’s a very promising medication.”