Reflex sympathetic dystrophy leaves its victims in agony, suffering and often disbelieved
Sept. 29, 2003

By MAYRAV SAAR
The Orange County Register

SANTA ANA, Calif. — It sounds impossible. A pain so great that the softest pajamas burn the skin. A chronic condition that leaves the body in constant, violent agony is just too horrible to believe. So many people don’t believe it.

Patients who battle reflex sympathetic dystrophy get used to suffering doctors’ skepticism along with their pain — to being called liars, drug addicts and attention-seekers. They would probably mind being maligned more if they had a moment to think about it. But so many of their moments are occupied by pain. Pain, and little else.

RSD, also known as Complex Regional Pain Syndrome, essentially causes the “fight or flight” sympathetic nervous system to work on overdrive. Blood vessels in the skin contract, forcing blood deep into the muscles. Pupils dilate. And the sensation of pain, the quick-fire brain signal that tells a person to let go of a hot pot handle, shoots through the body. Normally, the sympathetic nervous system calms down after a spell. But in people with RSD, it’s as though the switch is broken.

Although it was first 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 all 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 out from a rough custody battle.

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. She has testified about the disease before the state legislature and boasts Sen. Liz Figueroa, D-Fremont, Calif., as one of For Grace’s board members. Kapp, 55, of Newport Beach, Calif., has started the RSD World Foundation to raise public awareness and funds to provide financial and medical help to RSD patients. She and her friends started the RSD Friends pain support group, which meets monthly.

“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.”

Toussaint was a 21-year-old ballet student at UCI when RSD crushed her dreams of performing. She still remembers it vividly. Her right hand was on the ballet barre, her left leg behind her in an arabesque. Just a standard stretch before the day’s floor exercises. She lowered her torso to her knee, straightened her back, and came back up. That’s when she heard the pop of her hamstring. It sounded like a guitar string breaking.

She was told to stay out of dance class for eight weeks but barely managed to stay away for six. Her right leg was purple, sweaty. She had muscle spasms that twitched throughout her body. Doctors at UCI couldn’t help her. Doctors back home in Northern California didn’t know what to make of her. Sitting in her college apartment, not being able to dance, left her isolated and miserable. Only performing would make her happy, so she dropped out of school early to take a job with a magician in Reno.

About a year later, the pain got so bad that she could no longer perform. She returned to her childhood home and stayed bedridden for six years there, feeling as though she’d been “doused with gasoline and lit on fire.”

She spent an additional four years bedridden in Los Angeles, where she still lives. For more than 13 years, doctors told Toussaint and her family that nothing was wrong. That she screamed in pain for no reason. Eventually, her brothers and sisters believed the doctors. They didn’t know what else to do.

“It’s a symptom of RSD to lose your spouse and family,” Toussaint said. “Friends are long gone.”

In 1997, she was carried in on a gurney in the fetal position to Dr. Edward Carden, a Los Angeles pain management specialist who diagnosed Toussaint with RSD. Just hearing that her condition had a name made her cry. It was as if her sullied reputation were cleared. Family members have started to return, and relationships in Toussaint’s life are being mended. The one person who always believed her, her boyfriend of 23 years, John Garrett, helped her found For Grace in April 2002. The organization tries to help others with the disease learn that they are not crazy and not alone.

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. 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-authoring a book on RSD.

True pain patients don’t feel the narcotic effects of the medicines they seek. They rarely grow to crave the drug or become addicted, said Dr. David Friedman, professor of physiology and pharmacology at Wake Forest School of Medicine in North Carolina.

“There may be a population of people who don’t want to go back to work, who hate their lives,” said Friedman, describing why doctors are reluctant to prescribe. “But the downside of that mindset is that people who need (the drug) can’t always get it.”

Feinberg suggests that patients who feel that their pain isn’t being taken seriously see a pain specialist.

At the pain clinic Feinberg runs in Northern California, about 20 percent of his patients have RSD. He said the problems of these patients are not that different from those of any other pain patient. Pain is a difficult condition to treat, and a tough thing for friends and family members to be around.

“It doesn’t matter whether it’s RSD or chronic back pain. People don’t want to be around sickies,” Feinberg said. “You don’t want to be around someone who is whining and moaning and sick all the time; it reminds us too much of our vulnerability.”

Even fellow RSD patients have trouble with it.

“A lot of people think it’s in your head. I even have trouble understanding people who are worse than I am,” said Colleen Moran, 42, a high-functioning RSD patient.

RSD patients hope to put an end to the misunderstanding by sharing their stories. Kapp and DeMicelli are planning public events to raise awareness about the disease and teach parents that RSD can occur in children as young as 3. And Toussaint dreams of returning to UCI’s dance department to tell current ballet students what she wished she had known: that even slight injuries can lead to RSD. She believes that if her condition had been caught early, she could have been spared years of pain.

“I want the general public and medical community to know what RSD is just as much as they know what breast cancer is,” Toussaint said. “So when anyone gets it, they can go to the doctor and be believed and cared for.”

Distributed by Knight Ridder/Tribune Information Services.