Little known about RSD
Syndrome needs research, advocate says
Issue date: 11/8/06 Section: Features
For many readers, Jamie Young's story of living with Reflex Sympathetic Dystrophy may mark the first time they have heard of the syndrome.
For those who suffer from RSD, however, the chronic pain that accompanies it is a constant reminder.
"A lot of times people are isolated, and they have difficulty because no one really can understand it," said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, a nonprofit organization dedicated to raising awareness and funds for RSD research. "More and more people are telling their stories - that's increasing the publicity."
RSD, which is also known as Complex Regional Pain Syndrome, occurs when part of the nervous system malfunctions, sending constant pain signals to the brain. RSD can be triggered by a wide variety of events, some of which seem relatively harmless.
"RSD usually occurs after some sort of physical trauma," Broatch said. "It could be after an accident, after surgery, or it could be as simple as spraining ankle or giving blood. Somehow it sets off a chain reaction in the nervous system, and it must be hit quickly or it will spread."
CRPS/RSD is characterized by continuing pain in the affected region, changes in skin blood flow and evidence of edema. Although it remains virtually unknown, the syndrome has a fairly lengthy history in the United States.
"The first time it became prominent was when Union soldiers came back from the Civil War," Broatch said. "Their wounds had healed but they still complained of searing, terrible pain. They even got to the point that they put their limbs in buckets of ice."
Because of its relative obscurity both in the medical world and in the public eye, however, the syndrome is often misdiagnosed and misunderstood. Sufferers often have to see multiple physicians before being accurately diagnosed with CRPS/RSD, and many can have prolonged battles over compensation if they can no longer work due to the pain.
"Once you're labeled with something, then the company has to put up reserves," Broatch said. "This can be a very expensive diagnosis, because once adults are diagnosed with it, many cannot go back to work ever."
One of the most frustrating aspects of CRPS/RSD, Broatch said, is the simple lack of research on the syndrome.
"We really don't know why both of us can sprain our ankle, but one of us can get RSD and another won't," he said. The syndrome is two to three times more frequent in females than males, however, and diagnosis often occurs in patients in their early 40s.
There is no cure for CRPS/RSD, Broatch said, and there is no specific treatment to partially relieve its symptoms, although some effective methods include medication, physical therapy and sympathetic nerve blocks.
Those interested in learning more about CRPS/RSD can call the RSDSA at 1-877-662-7737 or visit http://www.rsds.org.
RSD At A Glance
Although the disease is often
misdiagnosed, Reflex Dystrophy Syndrome (RSD) is characterized by several symptoms, including:
• Severe burning pain
• Pathological changes in bone
• Excessive sweating
• Tissue swelling
• Extreme sensitivity to touch
• Changes in skin temperature
• Evidence of edema
• Decreased range of motion
• Motor dysfunction
• Immobilization due to pain
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Tuesday, November 14, 2006
Little known about RSD