The scope of pain: Will education prevent CRPS suffering?
By Stephanie Fosnight
Staff Writer
Pioneer Press

Donna Feldman of Deerfield explains how her left hand is deformed, due to complex regional pain syndrome. (Brian O'Mahoney / Staff Photographer)

"Perhaps few persons who are not physicians can realize the influence which longcontinued and unendurable pain may have on both body and mind . . . Nothing can better illustrate the extent to which these statements may be true than the cases of burning pain, or, as I prefer to term it, Causalgia, the most terrible of all tortures which a nerve wound may inflict."
—Silas Weir Mitchell, 1872 "Injuries of Nerves and Their Consequences"

As a doctor during the Civil War, Silas Mitchell treated patients who experienced worsening pain in their limbs even as their injuries healed. He named the disorder causalgia, and although it is today called reflex sympathetic dystrophy (RSD) or complex regional pain syndrome (CRPS), the disease still bewilders patients and doctors alike.

"Most doctors are completely clueless," said R. Norman Harden, M.D., who specializes in RSD/CRDS and other chronic pain conditions. "They may have heard about it in medical school, but that's about the extent of their knowledge. If they ever see it in their practices, it probably baffles them.

"The ugly truth of the matter is that most patients with the disease are probably never diagnosed," said Harden, who is the director of the Center for Pain Studies at Rehabilitation Institute of Chicago. Increasing awareness

RSD/CRPS sufferers have the help of state Rep. Karen May, D/58th, who sponsored a bill that would educate the public, medical community and government services about the disease. May's bill sailed through the House, picking up co-sponsors like Elizabeth Coulson, R/17th, but was defeated in the Senate after Sen. Barack Obama, D/13th and Sen. Dale Righter, R/55th, opposed it.

The bill was re-referred to the Senate rules committee, often a graveyard for bills whose deadlines aren't extended. But although the deadline has expired, May and Senate sponsor Sen. Mattie Hunter, D/3rd, promise to keep seeking opportunities to pass it.

"A bill isn't completely dead until we adjourn," May said. She said she backed the bill because she wants the disease more easily diagnosed in order to provide treatment.

"What I thought was the most heartwrenching of all was parents who took their kids to the Mayo Clinic and no one knew what was wrong with them," she said. Many believe that, if diagnosed in the early stages, RSD/CRPS patients have a greater chance of successfully treating the syndrome, although there is little epidemiological evidence to support this belief, Dr. Harden said.

"[But] in any chronic pain situation, you want to go after it aggressively before it gets out of the box," he said.

A mixed prognosis

No one knows what causes RSD/CRPS, although most doctors agree it involves the central nervous system and possibly the immune system. Over the years, however, the symptoms of RSD/CRPS have become clear to the educated eye.

Terrible pain will suddenly appear at the site of a relatively minor injury, often in a limb. Or, the pain may appear in a place where there was no prior injury. The affected area, like an ankle or wrist, may feel like it is burning, and the skin becomes hypersensitive to touch. The skin might change colors, turning blotchy, bluishpurple or excessively sweaty. Eventually the patient can lose use of the limb, the limb may become contorted and the disease may progress to the opposite limb, leaving the victim in lifelong agony.

Donna Feldman of Deerfield was on a business trip when she fell on some concrete stairs, breaking the fall with her left hand. As she healed from minor injuries, the RSD/CRPS began.

"First came excruciating pain," said Feldman, 58. "Then it started burning like someone was pouring scalding hot kettles of water on me. I couldn't find a comfortable place for my left hand, not even my down comforter. Before her diagnosis, Feldman went to 17 doctors and heard she was lazy and that the pain was in her head, she said.

"Besides the horrendous pain, your doctors are demeaning you," she said.

She lost her job as a result of the disease and now lives on Medicare and disability. She faces a life of physical pain and dealing with emotional fallout from the disorder.

"When they fired me and I was left there in excruciating pain, not knowing what was wrong with me, I went into a deep depression," she said. "I crawled into a ball and asked God to kill me. I was like that for a very long time." Nine years later, Feldman spends her good days campaigning for RDS/CRPS awareness and her bad days in bed.

In some cases, however, RSD/CRPS disappears the same way it comes: suddenly and inexplicably, as it did for 16-year-old Karen McGee of Glenview. Karen was 12 and finishing 6th grade when her right ankle started to hurt. Less than a week after she first noticed the pain, she could no longer walk on her ankle.

"It was intense pain," said Karen, now a sophomore at Glenbrook South High School. "Sometimes it would feel like it was burning and other times it would feel like a stabbing pain." Within a week and a half of the onset, Karen was correctly diagnosed with RSD/CRPS, but she found even those few days of trying to explain her symptoms frustrating, especially as her ankle had been perfectly healthy before the syndrome started.

"It was very difficult for them to find it believable," she said. "If they haven't heard of it, they think you're making it up. But it's all internal, you can't see it from the outside." By the middle of May, Karen was bedridden and had to leave school. The feel of wind blowing over her ankle burned. She endured a summer of various treatments, including epidurals, nerve blocks and painkillers. Nothing worked for long.

One morning, just before Karen was to start a class in managing chronic pain, she woke up to a surprise.

"The pain went away as quickly as it had come," she said.

After three months of disuse, her muscles had atrophied enough so that Karen had to learn to walk again. She started middle school with a walker. By winter, however, she was back to normal, and all that remains now of her puzzling bout with RSD/CRPS is a dime-sized spot on her right ankle that is numb to the touch.

Treatment

Once diagnosed, many patients undergo a strict regimen of opiates like morphine and increasingly invasive painkilling procedures.

Jim Kubisak of Aurora, who now has the disease across his body, takes morphine twice a day. He has a spinal cord stimulator, which is designed to intercept pain waves before they reach the brain, and is preparing to receive a morphine pump.

A former teacher and mountain climber, the 44-year-old Kubisak has been diagnosed for about 10 years. He says he, too, went to scores of doctors before finally discovering what was wrong with him.

"My legs feel like they're on fire," he said. "If I'm lucky, I get two to three hours of sleep a night, because of the pain."

Harden first discovered RSD/CRPS while a resident and has been treating it for years. He disagrees with doctors who treat only to relieve immediate pain, especially if they use only powerful sedating drugs and controversial invasive procedures.

Harden advocates interdisciplinary rehabilitation as the first step in treatment.

"The anesthesiologist has a hammer and makes the world a nail, but we also need physical therapists and occupational therapists and therapeutic recreation and a whole slew of psychotherapy," he said. "We have social workers and nurse educators, we have a whole array of drugs at our disposal and are not limited to opiates."

Harden says that caring for the patient's mental state is just as important as relieving physical pain. Kubisak, who sees a therapist, agrees.

"The McGill pain index rates RSD as the most painful disease," he said. "The problem is, it won't kill you. The thing that people die from is suicide."

May 18, 2004