Pain … with no relief in sight
Difficult to diagnose and treat Reflex Sympathetic Dystrophy can lead to a lifelong disability
By MICHAEL PRITCHARD
Staff Writer
Press of Atlantic City

It was just a little pain, cramping really, in her toes when then 16-year-old Christine McKelvey agreed to get a cortisone shot.

"I'm terrified of needles," said the Galloway Township woman, now 21. "But I was in pain. I wanted to get better, I didn't want to spend the rest of my life on crutches. People get shots like that all the time. In this case it didn't help. The shot would prove the catalyst for chronic, ever-increasing amounts of pain that would grow so bad, she now spends much of her time in a wheelchair.

The reason? McKelvey developed a condition called Reflex Sympathetic Dystrophy, which attacks the sympathetic, or involuntary, nervous system.

"Almost instantly, the pain got so much worse," she says. "If I had known that a simple shot was going to change my life forever, I wouldn't have done it. But I had no idea it would go this way. The pain spread to my hands, my arms and my abdomen. I live with it everyday."

The point of McKelvey's story isn't to avoid cortisone shots; it is to alert people to a little known condition that can be treated if diagnosed early. If not, it becomes chronic.

RSD effects millions of people in the U.S. in different ways, usually triggered by different types of trauma. In McKelvey's case, the cortisone shot may have acted as a catalyst. Everything from repetitive stress injuries to accidents can set off the condition. There is no cure and the condition is difficult to treat.

For most patients, getting the condition also starts a cycle of misdiagnosis and disbelief. With few outward signs in its early stages, and with few medical tests able to detect it, many doctors and health professionals aren't even sure what it is or how to treat it.

"It takes forever to even get the diagnosis," McKelvey said. "Even when I first started being treated for it, the hospital people were saying 'We think it's RSD, but we're not sure.' For some people, there are some outward symptoms - some discoloration and changes in temperature. But for many people, like me, there is nothing. If you walked up to most people with RSD, you'd say there's nothing wrong with them." And it doesn't help that the vast majority of the public has never heard of the condition.

"There's no Jerry Lewis or Michael J. Fox out there raising awareness of this," said Dr. Philip Getson, a family practitioner with offices in Cherry Hill and Northfield, who has made a specialty of treating the condition. "I have actually written to every talk show I could think of to get some attention for this, but so far nothing. All it will take is one show, and I think you'd hear a lot more about it."

RSD was first diagnosed during the Civil War. It is marked by constant pain - usually a burning pain - and can spread to other areas like a disease. Getson estimates that 10 million Americans have been diagnosed with the condition, while another 10 million may have it without being properly diagnosed. Getson is not the only doctor who treats the disease, but there aren't many.

"The training about this in medical schools is deficient," Getson said. "Most doctors don't know what to look for and don't want to take the time to find what caused it." In fact, for many patients, just being properly diagnosed can be a vindication.

Sandi Brocklebank, 48, of Stafford Township, Ocean County, a computer specialist, spent nearly two years being treated for carpal tunnel syndrome, including having several surgeries, before a doctor finally recognized that she also had RSD.

"I had never heard of it," she said. "But I remember just looking at him and thinking, 'Thank God, I'm not crazy.' I had been through so many doctors, but none of them had been able to tell me what was going on. Just finally knowing was a relief."

A short-lived relief, however. Like many patients, Brocklebank's condition has spread, in her case to her arms, back and neck. It also causes migraine headaches. Again, it is unclear if her surgeries caused the condition or simply was the catalyst for the RSD to become active. Either way, her pain is real.

"In one swoop, everything I had was taken away," she said. "I'm totally disabled. I had a good career going. I have always been a very independent person, and now, I need help with everything. And I know my husband suffers as well. There's nothing I'd like more than to jump on the back of his Harley again and go riding. But I can't. Now, that's just a goal."

For many patients, just being taken seriously by doctors can be a problem. Though the condition can have some symptoms - most notably the affected area loses body temperature - there is still a school of thought that the condition is psychosomatic, or just in the patient's head.

Suzanne Eads, 36, of Somers Point, developed the condition after being in two car accidents in the late '90s. It now affects her back, hips, shoulder and abdomen. She describes the pain as if "someone had stuck a hot fireplace poker inside my body."

But despite the seriousness of the pain, she doesn't always get sympathy. "I had an appointment with a urologist because I had a kidney stone," she recalled. "So I marked down RSD on the paperwork. He comes out and says, 'Oh, you have that nerve patch thing.' I was just in shock. I walked out of his office. Would you say 'Oh, you have that multiple sclerosis thing' or that 'cancer thing?' I don't have a 'thing.' I have a disease that I need my doctors to understand."

Eads participates in an online support group of RSD sufferers. The No.1 topic of conversation is finding doctors who understand how to treat the condition.

In New Jersey, however, things could get better under a bill working its way through the state Legislature. The bill would fund an awareness and outreach program to inform doctors and the public about RSD. It has passed the state Senate and is now before the Assembly

Research for a cure, however, is moving slowly. Getson is part of a pilot program studying treatments at Cooper University Hospital in Camden and Hahnemann University Hospital in Philadelphia. But even which tests should be used to diagnose the condition are debated, and many procedures to treat the condition are only offered in Europe. Those treatments provide only relief from pain, not a cure.

For most sufferers of the condition, chronic pain with little hope of a cure has taken its toll.

McKelvey has had the pain since she was 16. She had to miss much of her high school years, She did not walk with her graduating class and spent only one hour at her prom before the pain forced her to go home. The condition has also made her prone to memory loss - making it hard for her to take online college courses. And, she is in a wheel chair.

"I say to myself that I have to learn to live with it," she says. "I'm going to have this for the rest of my life. I don't want to spend that time being bitter and angry. I want to have a life.

"But there are times I do get bitter." she said. "I have my days when I ask 'Why me? Why did this happen to me?' I had a good life going. And I get bitter when I hear older people complain about pain. You know, they had a good long life before their problems started. I only had to 16. I can't help that. It makes me bitter. I know children 8, 9, 10 years old who have RSD. They will have to live with it even longer than me. That really gets me."

June 24, 2004