Although it was discovered in the 1860s, the condition remains so poorly understood that doctors don't even agree on whether RSD is rare or suffered by millions. It can develop in a person after an injury, including 2 percent to 5 percent of people who suffer peripheral nerve damage. Or it can pounce on a victim for no reason at all. Depending on whom you ask, it is either hereditary or the result of bad trauma care. Or — as most RSD patients are told at least once — all in the sufferer's head.
A doctor told Cynthia Toussaint that what she really suffered from was stage fright. The University of California, Irvine-trained ballerina was advised to give up her dreams of performing, settle down and become a housewife.
Nanci Kapp was told she was a lunatic. Her doctor refused to treat her unless she got psychiatric counseling.
Catrina DeMicelli's doctor said she wasn't in pain so much as stressed from a custody battle.
Faith eroded
By the time they were diagnosed with RSD, their conditions had advanced and their faith in themselves had eroded.
"I felt somehow responsible," said Toussaint, 42. "I felt guilty."
Now those who were written off as "head cases" are trying to help others overcome the same discrimination.
Toussaint has started For Grace, a Los Angeles-based nonprofit group to educate the public about RSD. Kapp, 55, of Newport Beach, Calif., has started the RSD World Foundation to raise awareness and funds to provide financial and medical help to RSD patients.
"At our first fund-raiser, we had nine people diagnosed," Kapp said. "Of those nine, seven were told they had a nerve disorder. Seven were sitting at home in tears, thinking they were nut cases, and two of them were suicidal."
Loneliness is one of the worst aspects of RSD. The condition leaves its victims so alone and in so much pain, it is often called the "suicide disease," after the "cure" that some patients find.
While there is no real cure, a combination of physical therapy, drug therapy and psychological counseling can allow patients to live normal, productive lives, pain specialists said.
Skeptical doctors
But before patients can begin such a regimen, they have to find a doctor who believes them.
It is a well-known ploy of drug addicts to bounce from physician to physician, feigning aches and stuffing prescriptions into their pockets. Doctors can lose their licenses and face criminal charges for over-prescribing, and therefore are wary of chronic pain sufferers. But those who treat RSD patients say fellow physicians' misconceptions lead to much needless suffering.
"You have someone who appears to have had a minor injury, and they're howling. And the first thing the doctor thinks is, 'This person is nutso,' " said Stanford University Associate Clinical Professor Dr. Steven Feinberg, who is co-writing a book on RSD. |
