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What is it? The term " reflex sympathetic dystrophy" (RSD) refers to a particular type of chronic pain, usually in a limb. One can recognize it by some typical characteristics: swelling, changes in the color or temperature of the limb (for example, it turns red and warm, or purplish and cool), increased or decreased sweating, and what is called "allodynia". Allodynia (from "allo, "other, and "dynia," pain)means that something non-painful ("other") such as a very light touch or a cool breeze, produces pain ("pain"). RSD often comes on after prolonged immobilization (such as a from a stroke) or an injury to the limb, such as a fracture, crush, or trauma to a nerve. Sometimes there is no obvious injury. Once it has begun, the process may become chronic, and unless treated early and aggressively, can produce a lifelong disability.
What causes it? Doctors do not understand RSD or what causes it. With the swelling and redness, the limb looks like a limb that was just sprained or burned. If it had really been injured, these changes would be desirable. They would last for a few days or weeks, and help the limb to heal by keeping it in a protected position. The nerves and spinal cord are probably responsible for these protective reflexes. In RSD, however, the changes continue far beyond the time of the initial injury, and turn a desirable healing reflex into an unwanted, counter-productive liability. They even get worse over time instead of disappearing on their own. Thus, it may be that the same "healing switch" that is turned on with an injury, and helps the limb to heal, stays on in RSD, in a kind of "short-circuit." This would then lead to the pain and all of the changes we see.
If no one knows what causes it, how do we diagnose it? Because doctors do not understand the complicated events that occur in the nervous system, either with the normal response in injury, or in RSD, testing for the disease is limited, and mainly descriptive. An X-ray may show thinning of the bone on the affected side. A bone scan is also sometimes abnormal. Probably the best method is to directly measure the changes we see, such as swelling, sweating, as well as color (reflects the blood flow in the skin) and temperature changes. This is called "Autonomic Testing." This test can confirm the diagnosis, and predict whether a person is likely to respond to commonly used forms of therapy.
So I may have RSD. How can I be helped? The pain is severe, and we often use an intensive and comprehensive pain program setting, where treatment can be carefully coordinated and adjusted to the individual. The main goal of treatment is to "turn off the switch." This means convincing the nervous system that there is no injury, that the turning on of the "healing switch" is an error, and that the limb needs to return to working normally. By and large, this is done by aggressive rehabilitation involving occupational therapy, physical therapy and psychotherapy (especially relaxation, biofeedback and behavior modification techniques).
We also temporarily turn off the switch by numbing a part of the nervous system (called the sympathetic ganglion) which controls the state of the limb, including swelling, sweating, and color, This is called a "sympathetic block". Some medications may also help temporarily. These give a window of time for the limb to begin to work more normally, and to send a message to the nervous system that "it is OK." Long-term progress is only made when the limb truly begins to function normally. We usually recommend continued formal exercises of the limb for life, because, unfortunately, RSD tends to recur, may even spread to other parts, when not aggressively managed. In this way, it is similar to diabetes in that it can be treated but rarely cured.
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