Friday, November 1, 2013

My Story- RSD/CRPS part I, the basics

November is RSD/CRPS Awareness Month. I know I mention it a lot, as it is my biggest physical impairment, but I don't think I've ever given a proper run down on it. So throughout the month of November, I'll be posting about the basics, treatment options, coping, all the fun stuff.

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Basics:
CRPS, or Complex Regional Pain Syndrome, is the current name of the disease. It is a rare neurological disorder that affects the Sympathetic Nervous System (SNS), wreaking havoc on the body and causing extreme pain. In fact, CRPS is currently recognized as the most painful non-terminal illness as ranked on the McGill Pain Index, with a score of 42/50*. For reference, unmedicated childbirth is about a 35/50. The MPI was done in 1971* as a way of creating a reference point for physicians but has been updated over the years.

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CRPS is a response to an injury in the body. The injury can be as minor as a stubbed toe or as major as a surgery or spinal damage (note: a very small percentage of patients have no known starting injury). Typically, when there is an injury, the nerves respond by sending out pain signals. Once you heal, the nerves stop sending pain signals, so you're brain no longer fears for its' safety. When CRPS develops, the nerves never stop sending pain signals. In fact, it becomes a viscous cycle and it feeds on itself as it endlessly loops.

The easiest way to think of it is this- ever slam your hand in a car door? That moment where you're bent over, clutching your hand, in so much pain you can't function? Now imagine your nerves become trapped in that moment, looping it endlessly.

CRPS is typically a localized disease. It will often set into the portion of the body where the injury is. In my case, I developed CRPS following Hip Surgery #2, and it was originally confined to my right hip. CRPS, though, enjoys spreading, especially if there is a further injury to the body. So with every passing surgery, the area affected by the CRPS spread and I now have it from my waist to my toes (moderate on the left side, severe on the right). CRPS most often affects extremities, but it can, and does, spread to include the entire body and internal organs. I've heard of cases where it has spread to the lungs and digestive tract.

Both graphics, as well as some dates, came from the website RSD Hope, which is one of the best information and support websites out there for RSD/CRPS patients. 

Tomorrow: Symptoms. 

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