When Your Pain Has No Name

But finally, her pain had a name.

"When I got my diagnosis, it couldn't have been worse," Toussaint says. "But it was the happiest day of my life. They could never say I was crazy again."

Patients Battle Pain, Stigma

Toussaint's struggle with her condition turned her into an activist against pain. She launched the nonprofit site For Grace, devoted to helping women find answers about their chronic pain. More recently, she has channeled her crusade against chronic pain conditions into the political realm, making it a centerpiece of her run for a California state congressional seat in 2006 and in other political efforts to bring more attention to these conditions.

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It is a success story that stands in stark relief against the lives of those who are still searching for answers to their agony. Michael Smith, associate professor in psychiatry and behavioral sciences at Johns Hopkins University in Baltimore, says that there are a number of pain conditions for which the origins and exact causes are still unknown.

"We're supposed to be this wonderful medical system that can do anything, that can save lives," Smith says. "But we really don't know enough about pain."

"It is often difficult to come up with a diagnosis for a patient with chronic pain in particular," agrees Dr. Paul Christo, director of the Multidisciplinary Pain Fellowship at the Johns Hopkins School of Medicine. "Sometimes these types of pain do have names, but we still don't understand the exact mechanisms of the pain."

And because chronic pain is often misunderstood, many patients go without the treatment they need. This, in itself is a problem; untreated, chronic pain conditions can actually worsen, recruiting more nerves until the pain spreads throughout the body.

Dr. Doris Cope, director of the Pain Medicine Program at the University of Pittsburgh Medical Center, says that this spread is often ignored -- particularly in the absence of a proper diagnosis.

"Some doctors say, 'Oh, there's nothing wrong with you,'" she says. "Meanwhile there is pain."

Still, patients may find themselves swept into dismissing their conditions as well.

"First of all they begin to doubt it themselves," Cope says. "Secondly, they get the feeling of helplessness and hopelessness. They don't know what's happening."

Worse, for these sufferers chronic pain has not only a physical component but an emotional one as well. As the pain spreads, the same chemical signals involved in depression, anxiety and stress also come into play, commencing a symphony of physical and emotional misery for the chronic pain patient.