You’ve seen me write RSD and you’ve seen me write CRPS, but are they different? Reflex Sympathetic Dystrophy (RSD) is the old term used, this has now been replaced with Complex Regional Pain Syndrome (CRPS). So, really they are the same sucky syndrome! Most older physicians will call it RSD, while younger ones call it CRPS. CRPS can come on after heart attacks, strokes, surgeries, or even have no precipitating factor. I have Type 1 CRPS, meaning there was a precipitating factor (my surgery) this type used to be called Causalgia. Doctors aren’t sure what actually occurs in the body to cause some people to get CRPS, but they think that it is caused by mixed signals from your sympathetic nervous system. An orthopedic physician, that I work, with told me that CRPS involves the part of the body that doctors don’t really know too much about. This is why they aren’t sure the cause and therefore, there is no cure!
WebMD explains RSD and the sympathetic nervous system very well. The website explains, your sympathetic nervous system controls blood flow movements that help regulate your heart rate and blood pressure. When you get hurt, your sympathetic nervous system tells your blood vessels to get smaller so you don’t lose too much blood at your injury site. Later, it tells them to open back up so blood can get to damaged tissue and repair it. When you have RSD, your sympathetic nervous system gets mixed signals. It turns on after an injury, but doesn’t turn back off. This causes a lot of pain and swelling at your injury site.
WebMD goes on to say that often the symptoms, including pain, come on slow. People sometimes don’t even realize that the pain they’re experiencing is unusual. As with me, I didn’t realize that my pain wasn’t normal for the rib resection I had. I had never taken care of a patient who had a rib removed. Nor had I ever known anyone who had such a thing. I didn’t realize there was something off until my soft, fuzzy purple blanket set me on fire and woke me up in the middle of the night!
RSD is most common in women and most common in an arm, shoulder, leg or hip. RSD can and often does spread. Mine started at my incision site just above my collar bone. So far, it has spread down my upper right arm, over to the middle of my chest, and is now spreading to my back and up the right side of my neck. I have read many case studies where patients are seeing decreased spreading with early treatment and with spinal cord stimulators. I’ll get more into those at a later time, but I thought it would be good to mention.
A few of the other things RSD can cause is: redness, mottled appearance of the skin (bluish color), rashes, hair growth changes, sweating, muscles weakness and spasms, swelling, trouble moving the effected area, and stiffness. The pain can be described as throbbing, stinging, stabbing, cold, burning, and deep. The pain is constant, but can be increased by things that typically wouldn’t cause pain at all! For me, showers, rain, my long hair, clothing, wind, noises, and vibrations have caused extreme pain.
All of the symptoms I experience from RSD or CPRS, plus the symptoms I have from my neck injury make life interesting to say the least. I’ve had to change every single aspect of my life, even down to how I can interact with my daughter. She’s learned, over the last year, to hug me on my left side and to not wrap her arms around my neck like she used to. I now keep my back to the shower head, so that the water doesn’t hit around my incision site. Now, when I touch my upper arm or the middle of my chest, I feel it at my incision site. This is called referred pain or referred sensation, and again has to do with the nervous system. The physician I recently saw at the large hospital, who was no help, told me that this was NOT a symptom of CRPS. However, I have found case studies that support otherwise.
As with all health issues, not everyone is the same. Not everyone has typical features, and your symptoms shouldn’t be dismissed just because they aren’t “typical.” The best advice I have for someone who thinks they may have CRPS is to seek medical treatment ASAP. But you have to know that since CRPS is rare and there isn’t a whole lot understood about it, you have to advocate for yourself. You have to stay on top of everything, read all you can, take notes and NEVER GIVE UP! ❤️
Reflex Sympathetic Dystrophy Syndrome & Complex Regional Pain Syndrome. (n.d.). Retrieved March 23, 2019, from https://www.webmd.com/brain/what-is-reflex-sympathetic-dystrophy-syndrome#1