CRPS By Susan H. Smith

I have a rare neurological disorder called CRPS, Complex Regional Pain Syndrome. Only 2,000,000 people around the world have it. So what is it? RSD, Reflex Sympathetic

Dystrophy was the name used for years. The current name is CRPS. It is the malfunction of the brain and Autonomic nervous system (composed of the parasympathetic and sympathetic nervous system). CRPS is the malfunctioning of the sympathetic nervous system resulting from an injury, surgery, fractured bone, trauma, and other things. So why is that important? We have many nervous systems in the body. The Central nervous system controls the body and it's functions.

The Motor nervous system controls movements. The Sensory nervous system controls things I see, smell, taste, and feel. So what does the Sympathetic nervous system do? It is the system that reacts when you are scared or stressed, called the "fight and flight" response. For instance, when you are walking in the dark and you think someone is following you and you get worried or scared the Sympathetic nervous system turns on. It responds by diverting blood flow from the limbs to send to the heart, lungs, and brain so that you can think fast, move fast, and react quickly so you can get to safety. When the crisis is over the Sympathetic nervous system shuts off until it is needed again. With CRPS the damaged Sympathetic nervous system remains on and does not shut off. So this causes decreased blood circulation to the area or areas that are affected. This decreased circulation affects the bones, muscles, tendons, and ligaments in the limb or affected area. This decreased blood flow makes the affected limb or area cold and for some hot, it changes the skin coloring to red or blue or purple. The skin, nails, and hair experience changes. It causes inflammation in the area that the body no longer knows how to respond to. Most importantly it causes pain 24 hours a day every day.

Let me talk pain. This condition is the most painful condition known to medicine. The pain makes no sense to the body or me. It causes pain to be greater then anyone would expect me to have due to my injury. The pain should've stopped but the damaged nerve tells the brain the body is in pain. Then there is another problem. Nerves are connected in a line called a nerve pathway. Between each nerve is a gate. When the damaged nerve stays on it can excite the nerve next to it opening the gate and turning on the next nerve.

This happens to many with this disorder, it is called spreading. Spreading is where the CRPS moves to a new area. And believe it or not this can happen to the whole body and also affect internal organs in the body. CRPS also affects the brain. But there is more then just pain. So let us pretend you hit your hand with a hammer, that hurts! Now take that hand and put it in a snow bank for a few minutes. What happens when you come in from the cold? Now there is tingling, cold, burning. Your hand may even feel like it is on fire.

It can itch. It can be swollen. Lucky for you when your hand warms up and with time the sensations and pain go away, for me they do not. For me the pain and sensations never stop.

There are days when I can cope with the pain and sensations. I can smile, laugh, and act like everything is fine. Then there are days when the pain is so out of control it is difficult to cope. I can cry, be crabby, irritable. You may even think I am whiny, bitching, or looking for sympathy. I am not. It is just the pain is so bad it makes functioning in life almost impossible. Because of the changes in the body many times even just touching the affected area can make the pain worse. A hug or being touched can actually be painful. Changes in the weather can make the pain worse. Sitting, walking, and even laying down can be painful for me. I am not exaggerating, there is medical documentation by expert physicians detailing all this at length. Since this condition also affects the brain I can have problems recalling words, speaking, or remembering things.

You may ask how do I get better? How long before I get better? Will I ever get better? Well that is a difficult question to answer. There is no cure for what I have, none. The doctors hope I can get in remission and the Sympathetic nervous system will function properly again. So you may ask how do I get to remission? That is a good question. No one has an answer for that yet. Most with this disorder do not get to remission. Doctors try to treat with medications. The medications they suggest I take have many side effects and many of them are not helpful. Then there are procedures I can try like injections of medications and nerve blocks that try to shut off the nerve. Some times they help, often they do not. They can try putting medical devices into my body that attach to nerves in my spine to try and decrease the pain and shut off the nerve/nerves however those too only help some with this disorder. And these procedures have risks that they can make me even worse. There are holistic therapies that can be tried like Acupuncture and Chinese medicine, however they are not covered by insurance and it is difficult to find knowledgeable practitioners. That is my main problem, finding even doctors that know what I have and how to treat it. This is not like diabetes or heart disease where I can go to any doctor or emergency room for help.

So why do I tell you this? I am not looking for your pity, sympathy, or to feel sorry for me. I tell you this because for me and others with this disorder it is a life changing diagnosis. It impact and affects EVERY part of my life. It can be frightening and lonely.

It can be exhausting trying to deal with the constant pain. What I do need is your love, support, and understanding. Don't get mad at me if I need to lay down, or miss a party or function, or it is just impossible for me to leave the house. I don't want these changes but I must live with them and how my life has changed.

So how can you help you may be wondering. A phone call to check on me, ask if I am up for a visit, maybe drop a meal off, offer to go shopping with me, or just be with me. Focusing on the pain and how I am feeling is not good for me. Stress and negative emotions only turn on the Sympathetic nervous system more. So please don't ask me if I am better, if I am "cured" yet, or how much longer will I be "sick". I can not answer those questions. All I ask is you be the supportive person in my life who understands I have a rare neurological disorder that impacts my life. I have hope that one day there will be an answer and cure for this disorder.

Written by Susan Hallock Smith, October 5, 2019.