Two months ago, I had never heard of Complex Regional Pain Syndrome (CRPS), but those four letters have changed my life. It is amazing how a few words from a doctor can make such a significant change in your life. Just as I had not heard of Complex Regional Pain Syndrome, I cannot assume you have, though there are more than 1.2 million people in the United States alone who are suffering with this disease formerly known as Reflex Sympathetic Dystrophy (RSD).
I’m writing about my Complex Regional Pain Syndrome not because I want to scare you by letting you know a little of the pain I’m in, but because I want to spread awareness. In spite of the fact that Complex Regional Pain Syndrome is fairly common, it isn’t well known, even in the medical community. Many doctors have not heard of Complex Regional Pain Syndrome before, which can be tragic for those who get it because treating it early can prevent worsening, spreading, and possibly put it into remission.
So, what is it? Complex Regional Pain Syndrome is a nerve disorder that causes severe chronic pain. Its name is actually pretty self-explanatory, if you look at each of the words in its name (some of this information is from the RSDSA web site).
Complex
Complex means that physicians do not know why it develops or what causes it and there is no known cure. In spite of the fact that it was first mentioned by a Civil War doctor, it has only been studied recently, so there is very little known about it at all. They do know that it is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, in my case the moving of my nerve in surgery. This syndrome may follow 5% of all nerve injuries, but can also be caused by a seemingly minor injury, such as a sprain.
Regional
Regional means that it is usually contained to one section of nerves, in my case, the left arm. Though it is usually regional (limited to one limb), it can spread to other parts of the body, including the opposite arm, legs, trunks, neck, or even head. The pain in my arm is the worst on the medial (inner) side of my elbow, but has spread to my wrist, hand, and a little into my shoulder.
Pain
Pain seems pretty obvious, but Complex Regional Pain Syndrome pain is unique, it is said to be the most painful chronic pain syndrome, even more painful than cancer. I am extremely grateful my pain hasn’t gotten this bad, for the measures the doctors are able to take to help me with my pain, and the fact that God blessed me with a very high pain tolerance. Patients with Complex Regional Pain Syndrome often describe their pain as burning, throbbing, aching stabbing, sharp, tingling, and/or crushing.
Syndrome
Syndrome indicates that Complex Regional Pain Syndrome doesn’t just cause pain, but other symptoms as well. Not only does it affect my hand, arm, and elbow, but it can cause problems with memory, concentration, attention, and word recollection. The pain often makes it difficult to sleep, and insomnia or lack of deep sleep is also common with Complex Regional Pain Syndrome, which complicates concentration further. Imagine trying to concentrate or sit still while someone rubs rough sandpaper on your entire arm. Some days, even wearing a shirt, a gentle breeze, or slight vibrations cause pain in my arm worse than rubbing sandpaper on my arm. Some other symptoms may include swelling, abnormal skin color changes, skin temperature, sweating, limited range of movement, or movement disorders.
What to find out more? Visit one of these web sites:
Reflex Sympathetic Dystrophy Syndrome Association
International Research Foundation for RSD/CRPS