GAINESVILLE, Fla.—Imagine having a disease that causes disabling body pain and fatigue. Doctors think you have a mysterious disorder known as fibromyalgia. But this diagnosis is based on unspecific signs and symptoms — medical science cannot prove it.
University of Florida researchers are embarking on a study of this puzzling ailment, which mainly afflicts women and is a leading cause of disability in Florida, says Dr. Roland Staud, an associate professor of medicine at UF’s College of Medicine.
Researchers working at the Clinical Research Center at Shands at UF aim to develop a diagnostic tool for fibromyalgia and at the same time glean insight into how the disease causes pain. Currently, standard tests or scans are unable to detect abnormalities that set these patients apart from the general population.
“So far neither blood tests nor MRIs (magnetic resonance imaging), nor PET (positron emission tomography) scans have shown any differences in these patients,” Staud said. “This lack of findings causes a lot of anxiety with fibromyalgia patients. We really need to find something tangible.”
About 10 percent of the U.S. population — or 30 million people — has fibromyalgia, Staud said, yet only a minority of these patients come to medical attention. Only about 1 percent actually see their doctor about it, he said.
“The rest suffer and cope alone,” he said.
So far no single cause or defect has been found to explain the syndrome, which consists of generalized body pain, sleep abnormalities, memory problems and fatigue. Patients also experience tenderness in many so-called “tender points” in the body.
“Fibromyalgia ranges from minimal interference to absolute disability,” Staud said. “It’s really a major health problem. Many patients can’t work because of the incredible pain and fatigue they have, and they are not responsive to pain medications. Physical activity worsens their symptoms…they have more pain and they have worse sleep abnormalities. Rest usually improves this but only to some degree — they never get completely symptom-free.”
Previous studies examined psychological abnormalities of fibromyalgia patients but found no difference between these patients and the general population.
“These people are not crazy and their symptoms cannot be explained by depression,” Staud said.
Some patients describe battling infections or illnesses prior to the onset of fibromyalgia, but no specific incidents have been definitively linked to the disease.
“Some patients just start to hurt,” Staud said. “Others think they’ve just got the flu and it’ll go away, but then it doesn’t.”
Researchers will seek to detect an abnormality in the way men and women with fibromyalgia ages 18 to 60 respond to certain stimuli. They must meet the clinical criteria for fibromyalgia and must have had body pain for at least three months.
“We are looking for abnormalities of ‘wind-up’,” Staud said. “Wind-up is a phenomenon of body sensation caused by repetitive stimulation of the skin. We will be testing these patients with a special apparatus and compare the changes they report with normal controls.
“Our hypothesis is that patients with fibromyalgia have an abnormality in wind-up,” he added. “They don’t react to repetitive stimulation as the normal population does.”
Patients will undergo three sessions lasting 20 minutes each at Shands’ Clinical Research Center. These sessions can be spaced out over the course of several days or weeks.
“If we find our hypothesis to be true we are naturally very interested in testing medications for the treatment of this disease,” Staud said.
Staud, the study’s principal investigator, is working with researchers in the department of neuroscience. Eventually they plan to seek funding from the National Institutes of Health for expanded studies of the disease.