A 21-year-old ballerina and actress with aspirations of a show business career, Cynthia Toussaint was stretching on a ballet barre when she felt a sharp pain in her right leg.
Doctors told her it was a torn hamstring--a common injury for dancers--that would heal with time and rest. But as weeks passed, the pain didn't ease; it grew steadily worse.
She didn't know it at the time, but Toussaint would see her injury result in a devastating illness that would end her dreams of a career in the spotlight and, eventually, leave her disabled and mostly relying on a wheelchair. It also began a harrowing 15-year encounter with a medical community that often fails to properly diagnose and treat a little-known illness.
"I had this wonderful life planned," says Toussaint, of North Hollywood. "After I got sick, I was left in this constant, horrible pain, and I knew it was all over."
Doctors say Toussaint has a little-understood and controversial medical condition commonly known as reflex sympathetic dystrophy, or RSD. Recently, doctors who specialize in treating RSD have begun describing it by various other names, including "complex regional pain syndrome, type 1."
The new name reflects still-evolving research into the condition--originally described in the 1860s--and its causes, diagnosis and treatment. As research progresses, there is still significant disagreement within the medical community about how to diagnose the illness since there is no single diagnostic test that proves a person has RSD.
RSD is "definitely under-diagnosed because it's still not well-known" by the medical community, says Dr. Joshua Prager, a Santa Monica anesthesiologist and former director of the UCLA Pain Medicine Center. "This condition was described in vivid detail 130 years ago, but for some reason it's still not taught in medical schools."
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The condition often begins with an injury, as minor as a sprained ankle, or as traumatic as a broken leg. An early warning sign of RSD is pain that doesn't go away and is more severe than would be expected from the injury.
"There is an unbelievably dreadful burning pain and heat associated with this condition," says Dr. Michael D. Stanton-Hicks, an RSD specialist who heads the pain center at the Cleveland Clinic in Ohio. Swelling, unusual hair and nail growth, and changes in skin temperature and texture near the site of the injury are some of the other symptoms.
