Living with unending pain: Little known of debilitating disease
By Debra Pressey
The News-Gazette

TUSCOLA – For Linda Nation, it all started with a little household accident back in 1999. One minute she was lugging some plastic bags of groceries into her house, and the next she was yelping in pain when a can fell out of a bag and struck her foot.

"I don't normally cuss, but when that can hit my foot, I did," she recalls. Nation, 49, of Tuscola, suffered a stress fracture that healed long ago.

But five years later she still lives with an intense, burning pain that may never go away because her grocery bag accident launched the onset of a debilitating, little-known disease called Complex Regional Pain Syndrome, also still known by its old name, Reflex Sympathetic Dystrophy Syndrome. Whichever name you use, for the more than 1.5 million Americans believed to have this chronic neurological syndrome, it means tormenting pain.

It can start after a trauma injury, such as the one caused by Nation's falling can, or a gunshot wound. But it can also be triggered by such things as a cardiovascular collapse, a crushing injury, surgery and repetitive vibrating motion – such as the kind that comes from using a jackhammer or weed-cutting tool. Countless people are exposed to these things every day and never get the syndrome. Why some do is a mystery researchers have yet to solve.

"There are circumstances that predispose it, but it's a random thing, and we haven't been able to figure out why," says Dr. Steven Schmidt, an anesthesiologist and pain management specialist with Carle Clinic in Danville.

While the cause of the disease remains unknown, some experts believe it is the result of a malfunction or misfiring in the body's sympathetic nervous system, the part of the nervous system that regulates involuntary reactions to stress. The injury heals, but the pain continues.

Basically, something "goes haywire," says Dr. R. Norman Harden, director of the Center for Pain Studies at the Rehabilitation Institute of Chicago.

"Usually you have a trauma to start with," he said. "It's pain that is disproportionate or longer-lasting than would be expected in the normal course of healing."

This isn't the kind of pain that can be relieved with a couple of Ibuprofen tablets and an ice pack. People with the disease describe pain so intense they say they feel as though they're being scalded with boiling water or stabbed repeatedly with a red hot poker.

If that's not bad enough, the pain can spread to other parts of the body, and the disease can eventually affect the muscles, bones, blood vessels and skin. It leaves some victims so sensitive to the touch that even putting on clothing hurts.

"Even a windy day is too much for them," Schmidt said. The mother of two daughters and a former preschool teacher's aide, Nation said her life hasn't been the same since she got the disease.

Long after her foot injury healed, she continued to feel pain and a "creepy" sensation in her foot that felt like it was covered with ants, she said. So hot was the burning sensation, she couldn't bear to put on socks, even in the winter, she said.

Nation said she was lucky to have seen a podiatrist at Christie Clinic who recognized signs of the disease early and sent her to a pain management specialist.

But despite surgeries, treatments and physical therapy, the pain persists and has spread from the ball of her foot to her ankle, Nation said. Her shoulders, back and hips ache, she has trouble sleeping, and she is now under psychiatric care for depression – another one of the disease' insidious side effects. Nation said she became depressed after she realized life as she once knew it was gone.

"I just didn't feel like I had a life of my own," she said. Fellow patient Donna Feldman, 58, of Deerfield said many patients, herself included, lose their jobs because they can't work any more. And the stress of dealing with constant pain and lifestyle changes leads one out of four people with the disease to attempt suicide, she said.

Feldman's own introduction to the illness occurred on a business trip back in 1994, when she tripped on a flight of stairs and hurt her hand and arm trying to break the fall, she said.

"It should have healed in a very short period of time, but almost immediately I had an unbearable burning pain like someone was pouring scalding hot water on it," she recalled.

Feldman said she wasn't so lucky when she first sought care. She wound up seeing 17 doctors, and some of them accused her of imagining the pain or trying to get attention, she said.

"I got answers like, 'You're being melodramatic,'" she added. Feldman said she has since had some 30 surgical procedures, but the pain has spread from her left arm to her right arm and is now also in her right leg. It has robbed her of much of her physical mobility. Her left arm flails involuntarily, she has tremors in her right hand, and she frequently feels as though an electrical shock is traveling through her limbs, she said. And her medical bills have long since overwhelmed her tiny Social Security income. A former insurance professional, Feldman said her former company fired her before she could make a disability claim.

Jim Broatch, executive director of the Connecticut-based RSDS Association of America, says his organization promotes public awareness and education about the disease so experiences like those Feldman had, going from doctor to doctor, don't keep happening to other patients. Awareness of the disease is growing at medical schools, he said, but it's still "woefully underrecognized" by doctors. "Nobody knows how to treat it," he added.

The RSDS Association says the disease strikes women more than men, and adults more often than children – although there has been an increase in pediatric cases. Broatch said most children who get the disease eventually get better, but four out of five adults with the disease are unable to resume their former activities.

"That doesn't mean that people can't have meaningful lives if they get treatment and counseling," he added.

Schmidt said early diagnosis and treatment are important for patients to have the best results. One treatment, for example – using a local anesthesia in precise locations of the body to turn off the sympathetic nerve stimulus – can sometimes turn off the syndrome if it's caught quickly enough, he said.

For those who don't respond to treatments, he said, depression is a common reaction. "You just try to use narcotics to make them as comfortable as you can," he added.

Harden said it's believed early diagnosis and treatment is best, although there's no evidence to support that someone diagnosed later can't eventually get better.

He also says it's important to note there's no cookie-cutter approach to treat this complicated disease, because every case is different, and patients don't all respond the same. What patients largely have in common is that they will all likely need physical and occupational therapy, plus psychotherapy or counseling to help them through the anxiety and depression, Harden said.

Some can also be helped with medications, he said.

Harden said he advises doctors to keep patients with the syndrome as comfortable and active as possible, and to steer them away from expensive and invasive surgical procedures he believes ultimately do more harm than good.

He acknowledges this approach can be a hard sell, because typical American patients want to see every possible remedy tried for their illnesses. "Americans won't let it fly if you say it will probably be OK if we just let it alone," he added.

Harden said he has heard horror stories about people with the disease stumbling around for years before they found a doctor who recognized their symptoms, but both he and Schmidt contend many doctors today do recognize the disease.

For most patients, Harden said, it's probably a matter of how sophisticated the medical providers are in their own communities and how well their primary care doctors have kept up with continuing education.

For patients who suspect they might have the disease, Harden says, a telltale sign is "a blue, cold, sweaty extremity that is exquisitely painful."

Schmidt said patients can also find a plethora of information online, but it can be confusing because, ultimately, there's so much about the disease that remains unknown.

"When you get to the bottom line, we can't just cure it because we don't know why it's doing that," he added. In the absence of a cure, both Nation and Feldman have made dramatic adjustments to their lifestyles and kept going.

Feldman says pain often isolates her at home, but she uses her available energy to bring the disease to the public's attention. She recently held a fund-raiser in the Chicago area and has been working to get an awareness and education bill passed by the Illinois Legislature.

Nation, who counts herself blessed to have a supportive family, has traveled to two church mission sites abroad with her husband despite the discomfort she now feels on plane trips, she said.

She also switched to cake-baking for a living – something she can structure around her most painful times without having to leave her home. She keeps in touch with fellow patients via email, and leads a monthly support group for chronic pain sufferers at Provena Covenant Medical Center in Urbana.

Research about the disease is ongoing, but Schmidt said he thinks finding a cure will require a quantum leap in technology and knowledge. "I don't expect to see it in my lifetime," he added.

Broatch remains hopeful, though he also says major strides are needed in public awareness and education if the disease is ever to attract the major attention it deserves from researchers. "I see some encouraging research on compounds that are helpful in this syndrome, so I do have much hope there will be significant progress," he said.

Source

June 7, 2004