Reflex Sympathetic Dystrophy, what is it?

By Linda Calhoun RSD Rebel

Reflex Sympathetic Dystrophy aka RSD is a disease caused by an injury (unusually minor) or surgery done due to an injury. Everyone has a Reflex nerve. What occurs is when you are injured your Reflex Nerve does not shut off. When someone gets hurt they feel pain, than some burning as the healing process starts the pain goes away as well as the burning. With RSD it's a progressive disease of the Autonomic Nervous System. It involves the nerves, skin, muscles, blood vessels (causing constriction and pain) as well as bones. When the injury occurs instead of the symptoms going away the pain gets worst.

The burning sensation within the injury site is so bad you feel like your on fire underneath the skin. The way to explain the burning is if you have a cut and gasoline gets in it, multiple by 10 dealing with this 7/24. Other RSDers describe the burning as a red hot poker being inserted into the effect site. The sympathetic nerve does not shut off. RSD spreads as well in 75 % of people that have it. Many people with RSD develop full body RSD. This means when I hit my R. tibia within a month RSD spread to my left leg. There is no cure for this disease. On the McGill Pain Index, Arthritis is 18, a fracture is 19, Cancer pain is 26, Chronic pain is rated at 27, and RSD is rated at 42. It has the highest rating for pain. Anyone can get RSD. At the time I was DX with it there were 7,000,000 report cases in the US alone. This number has increase in the year 2000 to over 12,000,000 people in the US. Put this number together with other countries and we are talking over 50,000,000 with RSD.

Symptoms of RSD are: Constant chronic burning pain, present 24 hours a day, 7 days a week, Inflammation in the form of Edema (I have Edema +2), discoloration of the skin called mottling. (When I first got injured the site was purple within a few weeks I had purple and pink mottling on both legs), you bruise extremely easy and rashes appear. I also get what they call RSD lesions. Spasms in blood vessels and muscles of the extremities. I call the spasms Grippers. When they occur it feels like your muscles are crushing your bones. My doctor also writes down Grippers. They cannot be rubbed out or touched at the time they occur. I have found Zanaflex or Klonpin helps with the Grippers extremely well. Due to the pain being so bad the air touching your skin hurts. I could not lay down on sheets. I have not worn pants since 1994. I go to doctors in zero degree weather with shorts on. With all the pain comes Insomnia, Emotional Disturbance and of course depression.

Anyone can get RSD it seems to strike women more than men, but each day I am meeting more men with RSD. The age group is 3 years of age to 103. What is important about all the above is if you have any of these symptoms it's important to realize you are not crazy, nor are you losing your mind. There is more awareness of RSD today than there has been in years. There are many doctors that treat RSD. The best treatment is with opiates. It's very important to keep the pain under control. It's very important to stay active as possible. Without pain meds. there is no way of functioning. When you have RSD light bothers you, sound bothers you, clothing, sheets, a breeze, loud noises or even vibrations can cause an extreme amount of increased pain to a RSDer.

Many RSDers were very active before being afflicted with this disease. Extremely hard workers, always on the go. I have RSD in both legs and upper body as well. When you touch the skin it's ice cold, yet when tested for pulse rates <knock on wood> all was normal. How do I deal with RSD. I have started a support group on line along with two other RSDers. They also have support meetings in many areas. RSD is difficult to deal with due to family and so call friends. I find this with many people with any type of chronic pain. No one believes you in the beginning and you find out that you must listen to your own body and take what ever will help you.

If you have any more question on RSD feel free to write me at the address after my name. Thank you for taking the time to read this.

Linda Calhoun, RSD Rebel