Q: My sister has been diagnosed with RSD (reflex sympathetic disorder) also known as CRPS. She has been to several doctors who have not been able to help her, other than with pain medications. She needs hip and knee replacements but because of the disorder she has been told that they can’t be performed. She is in severe pain and is desperately looking for help. Please, can you help?
A: Reflex sympathetic disorder, a/k/a complex regional pain syndrome (CRPS), is a rare neurological disorder that can occur following minor injury, trauma to the extremities, blood vessel damage, specific brain injuries, infection, radiation therapy, atherosclerotic cardiovascular disease, and more. It occurs when the injury fails to heal properly, nerves misfire, and unrelenting pain signals to the brain follow.
Symptoms commonly affect one of the extremities, possibly beginning with a burning pain of the fingers, palms of the hand and shoulders. For some individuals, the condition might appear in the knees, hips or in one or both legs. The skin over the affected area may become inflamed and swollen, and be very sensitive to touch as well as variations of hot and cold temperature. The pain can spread to a larger area, such as the opposite extremity, from the fingers up the arm(s) or leg(s). Skin color may vary to pale, red, or even appear blotchy. The skin may be extremely sweaty and the patient may have a gait abnormality that makes ambulation more difficult.
Some experts feel there are three progressive stages of RSD, with changes apparent in the skin, muscles, joints, ligaments and bones of the affected area. Stage one lasts from one to three months with symptoms including muscle spasms, joint stiffness, burning pain, and rapid hair growth; stage two lasts from three to six months and presents with softened bones, stiff joints, intense pain, weak muscle tone, and more; stage 3 presents with continuous pain, muscle atrophy, a major loss of mobility, muscle contractions, and more. However, the progression of the disorder or the stages have not been confirmed by clinical studies and will require more research for confirmation.
RSD is essentially treated with physical therapy, exercise, methods of relieving stress and anxiety, medications such as corticosteroids, capsaicin, calcitonin and bisphosphates, and when necessary, surgical procedures. Stress and anxiety are known to contribute to an exacerbation of symptoms. Treatment may differ from patient to patient and be individualized according to the severity of symptoms and may include spinal cord stimulation and epidural clonidine, as well as nerve blocking to the involved area. When treatment is provided within the first three months of symptoms, RSD has been known to go into remission. There is experimental use of IV ketamine and IV gammaglobulin and advances in research are promising. Therefore, I recommend your sister make an appointment with a pain medicine specialist or top-notch neurologist at a teaching hospital near her residence who has specific knowledge of RSD. Once her records are reviewed and she is examined, the specialist may have a better idea as to whether she is a good candidate for hip and/or knee surgery, despite the fact that surgery and trauma are known triggers for a recurrence that may present in a different limb.
Additional information on the disorder can be obtained through the Reflex Sympathy Dystrophy Syndrome Association of America by logging on to www.rsds.org or emailing to info@rsds.org. Readers who would like related information can order Dr. Gott’s Health Report Managing Chronic Pain” by sending a number 10 envelope and a $2 US check or money order to Peter H. Gott, MD Health Report, PO Box 433, Lakeville, CT 06039. Be sure to mention the title or print an order form from www.AskDrGottMD.com.
