Wednesday, November 24, 2010

RSD Awareness Month

+ the light touch of your pants making your legs hurt so badly that you can't stand it
+ pain that burns so badly it literally feels like you are on fire
+ swelling so that your knees look like lumps all the time, and you can't remember what they used to look like
+ out of nowhere have a part of your body become extremely hot for awhile, and having this happen at least 30 times per day
+ having that same body part get freezing cold in between
+ having your skin always look mottled and marbled
+ having your knees become like jelly underneath you after you've done only a moderate amount of walking

These are just some of the many things people with CRPS/RSD have to go through every day.

RSD stands for Reflex Sympathetic Dystrophy, the name for this incredibly painful, chronic, progressive neurological disease. More recently, doctors started calling it CRPS, Complex Regional Pain Syndrome, which encompasses both RSD (Type I) and Causalgia (Type II) which involves a direct injury to the nerve. It affects the sympathetic nervous system, which regulates things like heart rate and breathing, and sends a constant loop of pain from the brain to the effected body part(s). No one knows why RSD chooses to affect certain people, but it is rare. One of the defining characteristics is pain that is disproportionate to the initial injury. Personally, I know I never would have thought that a simple fall one day would cause me to be in terrible, ever-worsening pain over one year and seven months later. I also never would have imagined that having surgery on that knee 6 months after the injury would actually cause the pain to spread to my other knee.

The disease is baffling, really. The symptoms seem to make no sense. Often times people with RSD are not believed by family, friends, and doctors. They can be accused of making their pain up or exaggerating the extent of it. I did go through times where people, and even one doctor didn't believe me. Other doctors dismissed me, either quickly or eventually, because they had no idea what was wrong with me anymore and said there was "nothing more they could do for me." Many times I wanted to give up, to not face another disappointing doctor's visit. But I persevered because I knew something was obviously wrong with me, and I deserved a diagnosis. Finally, I found a doctor who knew what I had, and had an answer to explain all of my "odd" symptoms.

This is why RSD awareness is very important to me. I don't want others to have to go through what I went through. If my previous doctors had at least been familiar with the symptoms, they could have been able to detect it so much sooner. I want more awareness for doctors badly, but I also want awareness spread of this disease for everyone. It is very difficult to understand what a person with RSD goes through every day (I know I wouldn't have before I had it myself) but with at least more familiarity, the name won't be so foreign to people. If you come across someone with the disease, you can understand what it's about. And with more awareness comes more research and knowledge about what exactly causes RSD, what better treatments might exist, and if a cure is possible.

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