RSD: The Monster Inside. *By Melanie Dickens (13 years old)****************************Burning, stabbing, electrocution, shooting jolts of pain, spiders crawling all over; this is not a gruesome murder plan, this is life with the monster inside. That monster has a name. It’s RSD. RSD is Reflex Sympathetic Dystrophy (also known as Complex regional Pain Syndrome/CRPS). It’s a medical condition which causes neurological dysfunction resulting in chronic pain and many other symptoms. RSD is considered an “orphan disease.” As stated at Medicinenet, an orphan disease is one which affects fewer than 200,000 people in the United States. This could be why you have never heard of RSD. It’s hard to imagine living with a monster inside. RSD warrants more awareness in order to develop strategies for medical management as well as for living with this disease.**How exactly does someone get RSD and what is it? Nobody knows exactly what causes RSD, or why only some people get it. According to one of the foundations for RSD awareness, RSD was first documented during the Civil War. 19th century physicians treated many veterans with wounds that would heal while tremendous pain remained. The pain was often called “hot pain” because of the complaint of intense burning pain by these men. The National Institute of Neurological Disorders and Stroke (NINDS) believes this pain condition is a result of dysfunction within the central and/or peripheral nervous systems. It is explained to be a misfiring of the nerves, which results in non-stop pain signals being sent to the brain. The leading foundation on RSD, RSDSA, has stated that a malfunction in the immune system may be a cause for the nervous system dysfunction, but it is still a mystery to researchers and doctors. This could be thought of as a disruption of the healing process describes NINDS.RSD is known to affect both men and women of all ages although it seems to be more common in women of the 40-60 year old range.**The symptoms of RSD can vary from person to person just as they do in severity and duration. Pain is described with many words which make the disease a “monster” to the affected person. RSDSA lists burning, deep aching, cold, increased skin sensitivity, heightened sensitivity to light touch, heightened pain from injury, swelling, limited movement, muscle weakness, abnormal temperatures, sweating, changes in skin color, and changes in hair and nail growth patterns. These symptoms can present in any part of the body, both external and internal. RSD typically present after an injury or surgery but can appear with no inciting event. RSD symptoms can spread to multiple body parts over time and go into spontaneous remissions in certain people. * *According to NINDS, RSD doesn’t have a cure; therefore treatment is aimed at helping the symptoms. Physical therapy is used to keep a painful body part in use and may decrease pain signals and increase strength and motion. Psychotherapy is used for emotional health during a life of pain. Some patients will receive nerve blocks, spinal cord stimulation or even implanted drug pumps in efforts to reduce pain. There are also many experimental means of controlling RSD pain. Medications from different classes are used in attempts to help the pain and symptoms of RSD but no one drug or combination has proved to help all RSD patients. RSDSA recommends that treatment plans be individualized and include pain control, psychological support and physical activity.**Due to RSD being a dysfunction of the nervous system, numerous parts of the body are affected and the symptoms are not always visible to others. RSD is often called an “invisible” illness because the people affected look so normal to others. Sunrise Physical Therapy explains in their blog that digestion, respiration, circulation, and heart rate can be affected when dealing with nervous system issues. Chronic pain, cognitive problems, fatigue, gut problems, sleep issues, depression, anxiety and other systematic problems can all occur when living with RSD. It is all these symptoms which make it necessary to find strategies for people to actually live with RSD.**When gathering information from real RSD patients, referred to as RSDers, it is seen that RSDers may know more than the medical community on how to survive with this monster set of symptoms. Kerry A., a woman in her 20’s who has fought RSD on and off since age 13, listed many activities as her means to live with pain and illness. She said, “What has been most helpful aside from treatment/medication is distraction therapy, in the form of coloring, Wii games, The Sims on the computer, board games and family/friends.” Kerry also reported using deep breathing and “blowing the stress and pain out of her mouth” as being a personal strategy. Another RSDer, Jennifer S., is in her 40’s and has lived with the symptoms of RSD for two decades. Jennifer stated biofeedback was a useful medical treatment she sought out on her own in order to control body response and rhythms through controlled breathing, but she stated, “I have different types of distraction to cope with flares. “ She uses movies, online and iPad games as well as writing. “I can completely lose myself when I am able to get into story-telling mode,” said Jennifer when interviewed on her coping mechanisms.**RSDers agree on distraction being critical to living with pain and illness just as they agree on the need for more awareness for this monster. Jennifer’s “wish that RSD was as commonplace of a term as Cancer, MS, Muscular Dystrophy, or even Fibromyalgia” is mirrored by Kerry who said, “I wish RSD was a household name, instead of something that barely anyone knows about.” Both women feel awareness is the only way people will ever understand their pain and suffering as well as accept the “invisible” disease of RSD as the challenge it is.*Research completely backs up this methodology of distraction as a way to cope with and even lower pain levels. The journal of Pallative Care published an article about music being a distraction which can “be a nonpharmacological approach to help pain and suffering. “ Science Daily researchers agree that “mental distractions make pain easier to take, and those pain-relieving affects aren’t just in your head.” Doctors at Vanderbilt University Medical Center believe in distraction for easing pain within their Pediatric Clinic. Dr. Lynn Walker states, “The conscious mind can focus on only so much, so when parents distract their children from pain they may actually reduce suffering.” According to the Tristate Pain Institute, distraction techniques are becoming more common as an alternative treatment. Research has also indicated that biofeedback can be an effective means of reducing pain by means of a patient learning to control their body processes such as breathing and heart rate when painful situations arise.**After a brief education on RSD symptoms as well information from RSDers, it’s clear this medical condition warrants more awareness in order to develop strategies for medical management as well as for living with this disease. RSD is a complex diagnosis which despite being known of since the 19th century, it needs far more awareness and understanding within the medical community and general population. RSD can affect anyone from the very young to the very old and there is no cure. Imagine that person might be you or someone you love living with a monster inside. Imagine the burning, stabbing, electrocution, shooting jolts of pain, and spiders crawling all over your body.
Posted on: Sat, 20 Jul 2013 06:55:43 +0000
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