RSD: A rare and puzzling disorder
By LINDA WONDOLOSKI
Burlington County Times
Suzy Holcomb can trace the pain in her forearm to a pencil jab she suffered in junior high school.
A doctor had removed the lead and wood splinters, yet years later, the pain in her right arm had not gone away. Even worse, it had spread. In fact, the pain was so bad, it had turned her life upside down. The Delran woman had to give up her job. Simple motions, such as buttoning a shirt or brushing her hair were out of the question.
There seemed no medical reason for it, but the pain was there. Always the pain.
It took a legion of doctors and several decades before Holcomb, 54, could attach a label to what was ailing her: reflex sympathetic dystrophy, also known as complex regional pain syndrome. Holcomb’s experience is not unusual.
"It’s very common, and it’s always missed," said Robert J. Schwartzman, a professor and chairman of the neurology department at Drexel University College of Medicine in Philadelphia. Schwartzman also sees patients at Hahnemann Univer-sity Hospital in Philadelphia.
Although classified as a rare disease because it affects fewer than 200,000 Americans, the number of those affected is believed to be much higher, according to James W. Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association of America.
"Fifteen percent of people who have surgery develop complex regional pain syndrome," Broatch said.
A disorder of the sympathetic nervous system — a network of nerves alongside the spinal cord — RSD affects all age groups, and inexplicably occurs more frequently in women than in men.
Schwartzman and other medical experts who have spent years treating and researching the condition say it is difficult to diagnose. Often, it is misdiagnosed as fibromyalgia, said Schwartzman.
There is no specific test to diagnose RSD. Most testing is done to rule out other ailments, said Philip Getson, a family physician whose practice has evolved into a specialization in RSD. Further, medical training does not address it well, so most doctors fail to recognize it, he said.
"There’s no real training course per se," said Getson, who has offices in Cherry Hill and Northfield. "The domain should fall under the realm of neurologists."
Often complicating matters, said Getson, are doubts about the degree of pain patients say they have. A key symptom of RSD is pain magnified beyond the normal realm of an injury.
Despite the confusion over diagnosis, "a tre-mendous amount is known about this," said Schwartzman, who saw his first RSD patient, a 17-yearold woman, 30 years ago. A pioneer in RSD treatment and research, Schwartzman has treated nearly 5,000 patients and was instrumental in establishing the RSD association. The RSD clinic he set up at Jefferson Hospital was later moved to Hahnemann University Hospital.
Schwartzman estimated that three times more women than men get RSD.
Any injury affecting the nervous system can trigger RSD. Fractures, especially those involving the wrist or ankle, sprains, surgery, or any injury to soft tissue are common causes, said Schwartzman.
RSD is "always traceable to an event," said Getson, who has treated about 450 RSD patients. He said most of his RSD patients have traced their conditions to surgery, automobile accidents or work-related accidents.
Describing RSD as "trauma, peripheral trauma," Schwartzman listed five distinct components common to the condition: pain disproportionate to its cause, swelling, autonomic dysregulation (malfunction in neural control of blood flow to tissues, excess sweating), movement disorder (limbs weaken, spasms, tremors, unable to initiate movement) and atrophy (wasting, deterioration) and dystrophy (muscles weaken).
Those with RSD describe their pain as deep, aching, cold or burning. They also experience increased skin sensitivity.
While experts do not know why injuries develop into RSD in some patients and not others, Schwartzman said research has revealed some important information about the nature of the injuries. For example, he said many of the people who develop RSD had injuries that required a cast. Also, molecules from the injury site had been carried to the spinal cord, said Schwartzman.
However, he said, "There is no hard genetic evidence."
Broatch, whose organization funds research, provides information and promotes awareness of RSD, said accurate diagnosis and effective treatment are essential. "The earlier, the better," he said.
Just ask Ursula Weed. After arthroscopic surgery on her left knee "didn’t help at all" and the spasms caused by the pain in her neck and back had become uncontrollable, the 25-year-old Palmyra resident didn’t know where to turn.
"Everybody thought I was crazy," said Weed, whose injury resulted from an automobile accident in January 2000.
"I had no life," said Weed, who was relying on painkillers to control constant pain and muscle relaxers to halt the shaking in her left leg. She said the medications made her drowsy all the time, and she had to quit her job as a medical assistant.
Weed’s neurologist in Cherry Hill referred her to Schwartzman. Recalling her initial appointment with him in August 2001, Weed said, "He just looked at me and in an instant knew what was wrong."
Now 27, Weed is on permanent disability. The RSD has spread to her right side. A pump containing the muscle relaxer baclofen implanted under the skin on her abdomen stops the shaking. She also has experienced success with an innovative treatment using ketamine developed in Germany and used here by Schwartzman.
Holcomb, who was diagnosed in 1988, 25 years after the pencil jab, managed to make the trip to her job at a Philadelphia TV station until 1996. She, too, collects Social Security disability benefits.
A series of falls, including a 2½-story drop from a spinnaker in 1985, helped spread the RSD from her right arm and hand through her entire body, said Holcomb. It has even affected her breathing.
After a ladder from a backyard swimming pool fell against her arm in 1988, the doctors treating Holcomb found a calcified tumor imbedded in the right arm, the arm that had suffered the pencil jab.
Holcomb has undergone countless diagnostic tests and surgery and is continually on the lookout for new tools or treatments that can make life bearable. She spends as much time as she can in the pool and sauna at the Family "Y" of Burlington County in Burlington City.
"You adjust your life in order to maintain as normal a life as you can," Holcomb said.
That includes emotional as well as practical adjustments such as wearing open-toed shoes with fabric fasteners and clothing with fabric fasteners instead of buttons or zippers. Holcomb avoids jewelry — it is too difficult to put on. Bracelets are too heavy for her wrists, anyway. She needs gloves to keep her hands warm while navigating supermarket aisles. Her bed sheets hang loose, she cannot bear the pressure of sheets tucked in, and she uses a down-filled comforter, even in warm weather.
In April 1996, Holcomb organized the Reflex Sympathetic Dystrophy & Chronic Pain Support Groups of Southern New Jersey to share information with others experiencing problems similar to hers. She oversees the monthly meetings at the Family "Y" of Burlington County in Mount Laurel; Kathy Henson of Tabernacle runs monthly meetings at Virtua Memorial Hospital Burlington County in Mount Holly.
A former school secretary, Henson learned firsthand about RSD after she tore a tendon and ligaments when her ankle caught in a metal rack at work Dec. 7, 1989 — "my day of infamy," as she calls it.
"I couldn’t figure out why it (her foot) was so swollen and painful," said Henson, 52. At the time, she was a 38-year-old mother of three children under age 5. Her mother, a heart patient, also lived with Henson and her husband.
She underwent "all the basic testing" and did physical therapy, but the real trouble began when a doctor decided her foot needed a cast. Henson said the cast caused her foot to swell and symptoms to multiply. Two years after her injury, a nurse advocate suggested Henson’s problems might be caused by RSD. A specialist in Haddonfield confirmed Henson’s condition.
She left her job in 1996, and was placed on disability. "It’s not just the pain, it’s the other baggage that comes with it," said Henson, who has trouble sleeping and has developed a sensitivity to medications and to environmental elements.
"The moods, the memory fogs — you just can’t stay focused," said Henson.
She said she has benefited from psychological help for pain management, and favors it as an alternative to drug therapy. Physical therapy, selfhypnosis and an anti-inflammatory medication keep her going. Henson gave up driving — she can go numb from the waist down — and relies on her husband to take her places.
Henson, who developed fibromyalgia four years after the RSD began, also noted that RSD may surface in different ways. "No two people are alike with it," she said.
June 7, 2008