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."
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.
One of the many mysteries of the disease is how a relatively minor injury can touch off a devastating illness in some people but not in others. A few researchers believe some people may have a genetic predisposition to RSD, but there is scant research on the point.
"Why do some people get RSD and others don't?" asks Prager. "That's the $64,000 question that current research is trying to answer."
When diagnosed early and treated aggressively, RSD is often put into remission, medical experts say. Left untreated for several months or longer, however, and the likelihood of successful treatment falls off sharply.
In severe cases, RSD patients suffer intractable pain that leaves them bedridden. They are unable to tolerate the slightest touch; even being covered by a bedsheet is excruciatingly painful. Muscles and joints waste away, immune systems weaken, and arms and legs go into disfiguring contractures.
Many RSD sufferers find it impossible to hold jobs or perform everyday tasks such as cooking. The impact on their social lives "can be devastating and can break up families," says Stanton-Hicks.
Many patients must battle bouts of depression that occasionally end in suicide. As if their physical problems weren't bad enough, RSD patients also must cope with barriers to care within the medical system.
RSD patients describe years of being bounced between specialists without a diagnosis or useful treatment, experts say. When patients finally do find a doctor familiar with the disease, their condition often has deteriorated to the point at which treatment is difficult, expensive and ineffective. This leaves patients angry and distrustful of the medical system, experts say.
"I've had some patients who have seen 20 doctors," says Dr. Edward Carden, a pain specialist at Centinela Hospital Medical Center in Inglewood. Many patients are seen by orthopedists, "who do a nerve conduction study that appears to be perfectly normal. Then they'll tell the patient: 'Go see a psychiatrist.' "
RSD patients often complain of poor treatment by doctors who are not well informed about the illness and often too quick to dismiss their complaints of pain as imagined.
"Patients often are not believed by their doctors and others that their pain is real," says Alfie Burns, co-founder of the RSD Assn. of California. In 1984, Burns was pushing her son's stroller when she stepped on a stone and bruised her foot, sparking an explosion of pain that eventually put her in a wheelchair. It wasn't until 1988 that doctors diagnosed the problem as RSD.