When pain comes to stay
Early diagnosis is the best hope for RSD nerve illness
By Jennifer Ryan
East Valley Tribune

NO GUARANTEES: Bill Fischer, seen in his Gilbert home, suffers from RSD. (Tim Hacker, Tribune)

It’s a strange disease baffling patients and missed by doctors.
There is no test to diagnose it, no cure, and, if caught too late, its painful symptoms don’t go away.

The signs of reflex sympathetic dystrophy have been recorded since the Civil War, yet today medical authorities know little about RSD — a disabling neurological disease affecting millions of people nationwide.

"It is the most bizarre thing," said Bill Fischer of Gilbert, who has the skin sensitivity, muscle spasms and shooting pain of RSD from the middle of his back down. "Even when you have it, you’ll think it’s in your head."

For RSD sufferers, the pain is real. A hand or foot feels like it’s being scalded with boiling water or frozen in an icy lake. Extremities are swollen, bluish and so sensitive a light breeze hitting the skin is agonizingly painful.

"Every day, I have the pain," Fischer said. "Not many of us get to enjoy a remission unless you’re lucky enough to be caught early."

RSD patients say it’s time their disease got more attention so victims aren’t afflicted with a lifetime of pain. Advocates plan to ask Gov. Janet Napolitano to proclaim November RSD Awareness Month for the second year in a row. They hope to hold an RSD expo this fall, and they continue to share information about the condition at educational events, including one recently for school nurses in Prescott.

Also called complex regional pain syndrome, RSD usually occurs after a recent surgery, infection or trauma, such as a sprain or fall. Patients sometimes experience pain worse than the injury itself.

The disease involves a deregulation of the autonomic nervous system. Treatment can involve physical therapy, medicines to block the sympathetic nervous system and antidepressants.

Symptoms include skin sensitivity in the affected area, the feeling of extreme heat or cold, swelling and discolored skin. Those who suspect they have the syndrome should ask their doctor about the possibility of RSD, said Dr. Rich Ruskin, a managing partner of the Desert Pain Institute in Mesa.

"I would be on the lookout for pain invading a body part, especially a hand or foot . . .
pain that doesn’t seem to go away in the normal course of time," he said. "The sooner the diagnosis can be made, the better the outcome."

If RSD is caught in the first several months, medical treatment can return patients to normal. If left to linger too long without the right treatment, RSD worsens and remains indefinitely. Patients are left to struggle with pain that is so intense they often can’t eat or think straight.

"We don’t have any solution to this disease, or any cure, unfortunately," said John Simonis, a psychologist practicing in Scottsdale and Phoenix who has treated patients with RSD for more than 20 years. Medications help, but pain management therapy is necessary, he said.

About 50 people participate in a Valleywide RSD support group run by Margie St. Pierre of Phoenix.

"We never talk about prognosis. It’s now talking about pain and symptoms and preventing (RSD) from spreading more," said St. Pierre, whose RSD put her in a wheelchair for five years. "We would like people to be able to get the help they need." Fischer said he tries to live with the pain as best he can.

"There’s no telling if I would go into remission or not," he said. "There’s no guarantees."

Learn more For more information about reflex sympathetic dystrophy, visit the Web site of the National Institute of Neurological Disorders and Stroke at www.ninds.nih.gov or the Reflex Sympathetic Dystrophy Syndrome Association at www.rsds.org.

Source

July 8, 2004