Special Report: Managing RSD
What spells relief for RSD sufferers?
People with moderate to severe reflex sympathetic dystrophy syndrome (RSD) often take a veritable cocktail of prescription drugs in an attempt to manage the pain, depression, and anxiety caused by this disabling condition. When those drugs fail, patients turn to a wide range of alternative therapies in their constant search for pain relief.
Since contracting RSD, Wilson H. Hulley, a member of the executive staff of the President’s Committee on Employment of People with Disabilities in Washington, DC, and a special assistant to both the Bush and Clinton administrations on disability issues, has been prescribed a wide range of medications, including Prozac, Catapres, Kolopin, Risperdal, Levo-Dromoran, C-Dextromethorphin, Effexor, and Fentanyl patches.
"When I was first diagnosed, I used duralgesic patches for four years. After three and a half years, I began to have bladder and bowel problems and I took myself off the patches," notes Hulley. "In addition to the bladder and bowel problems, I was constantly drugged, which increased my inability to function at work and at home."
Now Hulley, like many other RSD sufferers, uses a combination of other treatments, resorting only occasionally to pain medications. Among treatments Hulley believes have given him relief from his constant pain are whole-body acupuncture, which provides six to seven hours of relief, and a cranial electrotherapy stimulation (CES) unit called Alpha-Stim manufactured by Electromedical Products International (EPI) in Mineral Wells, TX. Hulley says the small cigarette pack-sized unit, which applies a low-level electric current through the head via ear clip electrodes, brings him several hours of relief.
"After using the CES unit for about 20 minutes, the patient becomes more relaxed and more alert," explains Daniel Kirsch, PhD, a neurobiologist and chairman of the board of EPI. "There is no such thing as pain without mood swings. The biggest challenge in pain management is helping people function better in society. When people are more relaxed, they function better and their pain doesn’t hurt as much — the pain is present but more manageable."
"RSD can be reviewed as the sympathetic nervous system stuck on overdrive," says Kirsch. "It’s easier to activate a physiological function than to suppress it. We think CES activates the vagus nerve, the leading parasympathetic nerve, and that activation of the parasympathetic system helps offset the overactivation of the sympathetic nervous system."
The Alpha-Stim unit Hulley uses sells for about $450 and comes with a five-year warranty, says Kirsch. "That’s a lot cheaper than the prescription drugs commonly used by chronic pain patients."
Searching for relief
RSD patients like Hulley often try multiple therapies to achieve pain relief. A survey of more than 1,300 RSD patients conducted by the Reflex Sympathetic Dystrophy Association of America in Haddonfield, NJ, found that those pain relief strategies include:
• Seventy-three percent of respondents have tried heat treatments with 23% reporting moderate relief and roughly 6% reporting excellent relief. About 16% reported that heat treatments worsened their pain.
• Eighty-nine percent of respondents have tried physical therapy with roughly 22% reporting moderate relief and about 9% reporting excellent relief. About 24% reported that physical therapy worsened their pain. However, roughly 10% of those patients who received physical therapy reported permanent pain relief following treatment.
• Sixty-three percent of respondents have tried bed rest. Roughly 35% reported moderate relief and about 5% reported excellent relief. About 7% reported that bed rest worsened their pain.
• Nearly 74% of respondents have tried elevation of the affected extremity with roughly 30% reporting moderate relief and about 6% reporting excellent relief. About 6% reported that elevation worsened their pain.
• Thirteen percent of respondents have tried acupuncture with roughly 15% reporting moderate relief and about 9% reporting excellent relief. About 17% reported that acupuncture worsened their pain.
• Roughly 18% have tried chiropractic care with roughly 16% reporting moderate relief and 7.3% reporting excellent relief. Nearly 20% reported that chiropractic care worsened their pain.
• Roughly 16% have tried traction with 16.8% reporting moderate relief and less than 3% reporting excellent relief. More than 32% reported that traction worsened their pain.
• Nearly 30% have tried biofeedback with 20.7% reporting moderate relief and 6% reporting excellent relief.
• Twenty-nine percent have tried psychotherapy with 23.5% reporting moderate relief and 7.2% reporting excellent relief. Nearly 11% of those patients who received psychotherapy reported permanent relief following treatment.
• Nearly 69% have tried a TENS (transcutaneous electrical nerve stimulation) unit with 23% reporting moderate relief and roughly 5% reporting excellent relief. Roughly 16% of patients using TENS units reported that their pain worsened after treatment.
• More than 73% have tried nerve blocks with roughly 30% reporting moderate relief and less than 4% reporting excellent relief.
• About 17% have tried sympathectomies with about 23% reporting moderate relief and less than 2% reporting excellent relief. Of those who received moderate to excellent relief, 24% reported the relief was permanent.
• Roughly 42% have tried pain clinics with 26.5% reporting moderate relief and less than 1% reporting excellent relief.
In addition to pain management, Hulley finds that his service dog greatly improves his quality of life. "She picks up things that I drop when I can’t bend over, and when I’m in a crowd she protects my legs, because it hurts to have them touched," he says.
(Editor’s note: Several books and a video are available that explain the science behind the Alpha-Stim system. For ordering information and descriptions of these resources, visit the Electromedical Products International Web site at www.epii.com.)
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