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Living With RSD--When the Only Constant in Your Life Is Pain Nancy H. Rosenberg, Medical Writer Published Publishing Information Published by CBSHealthWatch.com Read an Excerpt Imagine sustaining a minor injury, like a sprained ankle, but the pain from the injury is much worse than you would expect, and, to your horror, it doesn't go away. Instead, the pain worsens, the ankle swells, and the skin around your ankle suddenly seems to develop a mind of its own. It gets cold and turns blue, then gets hot and turns red. You think you're losing your mind, and your family and coworkers are inclined to agree. You probably haven't lost your mind, but you may well have developed a disease known as RSD, or Reflex Sympathetic Dystrophy (also known as CRPS, or Complex Regional Pain Syndrome). No one knows for sure how many Americans suffer from this debilitating pain syndrome, though some physicians estimate that as many as 5% of minor injuries lead to at least a minor manifestation of the disorder. The RSDSA, or Reflex Sympathetic Dystrophy Syndrome Association of America, estimates that as many as 5 million Americans may suffer from RSD. "RSD is the most miserable disease," says Mark Silverberg, 37, who was diagnosed with the disease when he was 33. "It doesn't kill you, but it will destroy your life. You suffer pain, there is little relief, and you feel isolated because you can't communicate the amount of pain you have because you think no one will believe you." RSD can be mild or severe, it can progress, or it can go into spontaneous remission. Symptoms can last for weeks, years, or, in rare instances, a lifetime. Pain is usually intense and burning and is often exacerbated by touch or changes in temperature. Diagnosing RSD While no one knows for sure what causes RSD, researchers suspect that an overactive, abnormal function of the sympathetic nervous system is to blame. Nerve impulses are activated by usually minor trauma, then they fail to "turn off" and continue sending signals of pain. The body responds and swelling, or edema, often results. Swelling can be severe and may be characterized by a marked demarcation line. Pain is the hallmark symptom of RSD. It is severe, debilitating and unrelenting. Patients describe the pain as "burning," "stabbing" and "knifelike." Additional suffering may result when patients feel helpless to convey the amount of pain they feel, especially when the pain is in dramatic disproportion to the original injury. "While RSD is not the most common pain disorder, it certainly is one of the more disabling ones," says Dallas neurologist John Claude Krusz, M.D. "RSD is also one of the toughest pain disorders to keep under control." Skin changes often accompany RDS, with changes in temperature, texture and skin color being the predominant indicators. The skin in the affected area may be warmer or cooler than the contralateral, or opposite, extremity, and it may appear red, blue or mottled white. Fingernails are often affected by this disease; they may grow faster and become brittle and ridged. Body hair may change in texture, becoming alternately thin then coarse. Movement disorder often characterizes RSD. The disease causes muscle to become stiff, and sometimes patients experience wild, jerking motions. In addition, because movement of the affected area is painful, patients understandably try to minimize movement, which can lead to compounded stiffness and muscle wasting. Changes in bone density may accompany RSD, with patchy osteoporosis resulting. Secondary fractures can then occur, which can exacerbate RSD symptoms. Not surprisingly, sleep disturbances and depression due to chronic pain often accompany RSD. "I would say that close to 100% of the patients I see who suffer from RSD are clinically depressed," notes Dr. Krusz. Finally, one of the most cruel aspects of RSD is its tendency to spread. Initial symptoms usually occur at the site of injury, but as time passes they tend to spread to adjoining, opposite, or unrelated sites. Because the pain is severe and chronic, it is important for RSD patients to have in place a network of family, friends, therapists and physicians who understand the disease and its implications, notes David Hanks, Ph.D., a therapist who sponsors an RSD support group in Plano, Texas. Counseling can help RSD patients and their family members come to terms with this difficult and potentially disabling condition. Treatment of RSD Fortunately, the pain and the underlying nerve dysfunction of RSD often respond to treatment, says Anthony F. Kirkpatrick, M.D., Ph.D., Director of Research of the RSDSA. Physical therapy, patient education, counseling, drug therapy and pain management, including sympathetic nerve blocks, may all be utilized in helping to minimize pain, reduce swelling and resolve sleep disturbances. In extreme cases a total surgical severing of the affected nerves may offer partial or complete relief. Despite severe pain, patients must learn to use the affected body parts as much as possible. "RSD patients have to learn that to hurt is not to harm," says Dr. Kirkpatrick. Early detection and treatment are also important; without intervention the symptoms often progress and spread to other parts of the body, which can make treatment more difficult. Excerpt Imagine sustaining a minor injury, like a sprained ankle, but the pain from the injury is much worse than you would expect, and, to your horror, it doesn't go away. Instead, the pain worsens, the ankle swells, and the skin around your ankle suddenly seems to develop a mind of its own. It gets cold and turns blue, then gets hot and turns red. You think you're losing your mind, and your family and coworkers are inclined to agree. You probably haven't lost your mind, but you may well have developed a disease known as RSD, or Reflex Sympathetic Dystrophy (also known as CRPS, or Complex Regional Pain Syndrome). |
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