Living with Reflex Sympathetic Dystrophy Syndrome/RSD

Living with Reflex Sympathetic Dystrophy Syndrome (RSD), is like having a nightmare, and never waking up from it! RSD/CRPS is a chronically painful and debilitating neurological disorder, that affects the central nervous system, the muscles, the bones and joints, and the skin. This disorder can manifest spontaneously, after an injury to a limb such as a broken leg, or after having surgery, a stroke, or a heart attack. Even injuries such as a paper cut or pinprick, can literally change one’s life forever.

In 1995, Complex Regional Pain Syndrome/CRPS, replaced Reflex Sympathetic Dystrophy Syndrome/RSD. However, it is still quite common for doctors and patients, to refer to this syndrome as RSD. There are several characteristic symptoms of this syndrome. Some of the more common symptoms are extreme chronic pain, harrowing burning pain, extreme swelling of the affected limb(s)/areas, and profuse sweating in the affected areas. Other symptoms are discoloration of the affected areas, temperature changes, such as a foot that feels like a block of ice, even in a warm environment, severe debilitation, depression, dysfunction, and sometimes paralysis of the affected limb(s). The pervasiveness of RSD varies from patient to patient. (Criteria for CRPS/RSD).

Reflex Sympathetic Dystrophy Syndrome, can literally turn one’s life upside down, and inside out! However, many patients are able to live some semblance of a normal life. For example, some patients are able to work, take care of their families, and enjoy outings, etc. Usually, this is due to a patient receiving an accurate diagnosis shortly after onset, as well as receiving aggressive treatment early on. Most who suffer from RSD were once productive citizens with successful careers, who are now totally disabled. Through online support groups, I have met many others who suffer from RSD. So many who are living with RSD have had, or are currently having a very difficult time getting their disability benefits. Also, the way patients are treated is literally inhumane at times; a very sad commentary, indeed. They are told by doctors, family members, and friends, that they are not telling the truth about their pain, and it is just in their heads. I remember being seen by a Spine Specialist several years ago. At that time, the RSD was affecting my right hand, my arm, and my shoulder. The doctor was absolutely astounded by the level of swelling in my right hand, as well as the dysfunction of the entire limb. After examining me, and noting visible symptoms, he suggested that I talk to a psychiatrist! A psychiatrist? I was absolutely flabbergasted! He insulted me more than once that day. I left his office almost in tears and totally deflated, because I could not believe the way I had been treated.

Reflex Sympathetic Dystrophy Syndrome is not a condition that has just come to light. This condition has been affecting people’s lives since the Civil War era. Because the soldiers were suffering from extreme burning pain as a result of severe nerve damage after being injured, this syndrome was called causalgia at that time. RSD is a very progressive syndrome, and the level of progression patients experience varies greatly! Many factors are involved. What was the precipitating injury, if any? How long after an injury was the patient diagnosed; weeks, months, years? Did treatment begin immediately upon diagnosis? These are just a few extenuating circumstances, that could help to determine the prognosis for each patient. Many treatments for this condition are still considered experimental. Being tagged experimental, means insurance companies will not pay for some of these treatments. Thankfully, many treatments are now being removed from the “experimental” list by insurance providers, than had been the case previously. Doctors also prescribe a variety of medications, while some suggest that patients have spinal cord stimulators and pain pumps implanted to help to control the pain, in addition to other treatments. At this time, there is no cure for this syndrome. However, a small number of patients go into remission. In many instances, the remission is not permanent. For unknown reasons, children go into remission much more often than adults who are strickened with RSD. Unfortunately, many doctors are not well versed in the area of treating patients who suffer from this syndrome. I am not looking for pity at all. I want others to know about this condition, because there are very little if any funds allocated towards research to find better treatments, and even a cure for this life-changing syndrome. I want legislation passed, that will force doctors to be educated more thoroughly in the areas of exactly what Reflex Sympathetic Dystrophy is, and how to better treat people who are suffering from this chronically painful, debilitating, crippling, and life-changing, disorder. Please view the video. I had the privilege of meeting the young lady depicted in the video on a RSD Internet Support Site. To navigate to the article titled, (RSD Types I and II), click on the link. If you have any questions, or would like to leave a comment, please feel free to do so. God bless!

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