New research sheds light on mysterious fibromyalgia pain

This new understanding of fibromyalgia will hopefully lead to better treatments, Rice and Oaklander say.

Right now, most people are treated with the antidepressants Cymbalta made by Eli Lilly, or Savella by Forest Pharmaceuticals, or with Lyrica, a seizure medication from Pfizer — which have all been federally approved for use in fibromyalgia.

But these drugs have side effects and don’t help everyone.

“We’re looking now to understand more about other features of the pathology that might lead to a more targeted approach and less of a shotgun that causes side effects,” says Rice, also an adjunct professor at the University at Albany, State University of New York.

The trigger for fibromyalgia is still a mystery, although stressful events in patients’ past have been thought to play a role.

Rheumatologist Richard Chou says there is some preliminary evidence that the nerve damage is caused by the immune system.

“We’re hoping some day we’ll be able to say exactly how your immune system is causing damage to the sensory nerves that results in fibromyalgia pain,” says Chou, an assistant professor at the Geisel School of Medicine at Dartmouth in New Hampshire. Researchers don’t yet know whether the pain causes the other problems of fibromyalgia — disrupting sleep, for instance — or whether both pain and sleep disturbances share the same cause.

Fibromyalgia’s constellation of symptoms is very similar to those of chronic fatigue syndrome and Gulf War syndrome, which Oaklander’s group also studies. “If someone has more of one symptom than another they might call it one thing, like chronic fatigue, but it’s not clear that these are different,” Oaklander says.

She says researchers still have a lot to learn about these conditions, but scientists are taking them more seriously and making real progress for the first time.

Carolyn DiSilva of Maynard, Mass., one of Oaklander’s patients, says she was stunned to learn that she had small-fiber neuropathy caused by an overactive immune system, instead of fibromyalgia.

“I think a lot of people, they get a blanket diagnosis as fibromyalgia because doctors don’t know what’s wrong with them,” says DiSilva, 47, who has suffered from unexplained pains for about 14 years. The non-stop agony and the pins and needles that plagued her for hours at a time forced her to give up her work as a hair stylist, she says.

Understanding what’s causing her pain has helped her, she says, because doctors and others take her problems seriously, instead of dismissing her as they used to do.

And now that it’s clear DiSilva has an immune problem, Oaklander has put her on intravenous immunoglobulin treatments — instead of conventional fibromyalgia therapy — which seem to be making a profound difference in her health.

DiSilva says her pain has dropped from a 10 on a 10-point scale to about a 4.

“I always hope that someday I’ll wake up with no pain, but I’m so grateful that I’ve come this far.