REFLEX SYMPATHETIC DYSTROPHY
Chronic pain sufferers find support

By: CARLENE HEMPEL
Sun Staff

"It hurts, and the pain never stops.

"It doesn't turn off at night and no matter how hard you wish, the pain will never go away," says  Eric Phillips, a Bedford resident who, for the past six years, has had a condition called Reflex Sympathetic Dystrophy or RSD.

Phillips' first words to describe his ailment are "imagine that you stick your hand into a burning hot oven and you can't take it out. That's what it feels like to have RSD, all the time."

RSD is a chronic pain syndrome usually brought on by a trauma to one's system. The trauma, which includes surgery, could be anything from a stubbed toe to amputation of a limb, said Dr. Daniel Carr of the Anesthesiology Department, Division of Pain Management, at Massachusetts General Hospital in Boston.

Carr said little is known about RSD. Many people with the condition are misdiagnosed at first or the pain is simply dismissed as normal for the injury, he said.

Phillips said he was partly responsible for establishing a local support group about a year ago to help victims of RSD combat the pain they have to go through. The organization is called Supporting Friends and Patients of Reflex Sympathetic Dystrophy. Phillips is the president. There are about 50 members, "with more joining all the time," he said.

A 40-year-old Lowell resident and member of the support group has also been diagnosed with RSD. He is in his fifth lawsuit against the company he worked for and asks that his name not be used.

He said his battle with RSD began in 1985 when he fell through a floor at work, but he was not diagnosed with the aliment until two years after the initial injury "I thought I was the only one in the world who had this," he said.

After seeing a series of doctors, he was referred to Mass. General in Boston and was informed of his condition. "I can't work anymore. I just sit at home now and try to take care of myself - try not to fall and hurt myself." He was told that his leg will break soon because his bones have become very weak.

'" I'm trying not to move much. I'm just waiting for it (the break) to happen," he said. Of his legal battles, he said: "Right now, I've seen 27 doctors and all of them have confirmed I have RSD. But my insurance won't cover it. My company's doctor said that I am obviously in pain, but he won't acknowledge the RSD."

He said he will continue with the battle until he receives what he deserves, which is "complete medical coverage, including a nurse.

RSD has three recognizable stages that vary in each case. The first is called the "acute stage" where abnormally in-tense pain will persist after an injury, with redness and warmth of the injured extremity, soft swelling and increased nail and hair growth.

Stage two, or the "dystrophic stage," results in increased pain that often spreads to other extremities, skin that becomes pale and cool with increased sweating, brittle nails, the be-ginning of skin atrophy and marked osteoperosis.

The final stage is called the "atrophic stage," where pain reaches a plateau but tissue changes progress and often become irreversible. The extremity becomes stiff and immovable with "pencil-pointing" of the fingertips and skin atrophy.

Although most documented cases have involved an individual's extremities, there have been severe circumstances where the patient has RSD in the face or genitals.

"I have a friend who is a body-case,"' said Phillips. "The RSD has taken over her whole body. She is now bedridden."

Dr. Raymond Maciewicz, director of the Spaulding Rehabilitation Hospital in Boston, said that throughout the stages, the victim might experience severe changes in skin temperature and color. One day the person might have an ice-cold, purplish-white hand and the next day it could be red hot.

The skin color usually begins with redness of the affected area It might become grayish-blue or even grayish-black as the condition continues, he said.

"People are not aware that the ailment exists and they think they are crazy - that it's all in their heads," said Phillips. "The purpose of our group is to let people know that there are others like them out there. They are not alone and more importantly, they are not crazy.

Phillips said July was designated as RSD awareness month by former Gov. Michael S. Dukakis. Phillips said the group is hoping for some cover-age on local television stations to increase awareness about the ailment.

More information about RSD or Supporting Friends and Patients of Reflex Sympathetic Dystrophy may be obtained by calling Eric Phillips at 508-946-9888