09/04/2022
🟧🟧 What is CRPS? 🟧🟧 (Complex Regional Pain Syndrome)
Sorry for the long read...
I have a rare neurological disorder. Only 2,000,000 people around the world have it.
So what is it? RSD, reflex sympathetic dystrophy, was the name used for many years. The current name is CRPS, complex regional pain syndrome.
So what does that mean?? It means that from an injury, trauma, or surgery (ankle surgery in my case) a sympathetic nerve in my body was damaged.
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 activates when you are scared or stressed. 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 the blood to the heart, lungs, and brain so you can think fast, move fast, & get to safety. When the crisis is over the Sympathetic nervous system shuts off until it is needed again. Stress, worry, and negative emotions can turn on this nervous system as well. With RSD/CRPS the damaged Sympathetic nerve remains ON. It 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, gives it a red or blue or purple coloring, it can change the skin/nails/hair, it causes inflammation in the area that the body no longer knows how to respond to, it affects proper movement, and most importantly it causes pain.
🟧🟧 Let me talk pain. 🟧🟧
This condition is the most painful condition known to medicine. Yes, most painful. It is considered by medicine to be more painful then child birth and even cancer. It's nickname is...
🟧"THE SU***DE DISEASE". 🟧
The pain makes no sense to the body or to me. It causes pain to be greater then anyone would expect for my injury. The pain should have stopped when my ankle healed, but the damaged nerve tells my body that it is still 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 Sympathetic 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. And believe it or not the nerves can be turned on in the whole body and even affecting internal organs like the eyes, heart, breasts, lungs, stomach, uterus, bladder, and any organ in the body. Thankfully, so far my pain is localized to my foot and ankle. But besides hurting there is more. So pretend you hit your hand with a hammer, that hurts! But there is more. Besides the pain there are other sensations the damaged nerve can cause. Now take that same hand and put it in a snow bank for 30 minutes. What happens when you come in from the cold? Now there is stinging, numbness, tingling, cold, but also your hand will now feel like it is on fire, it can itch, and there can be swelling. Lucky for you when your hand warms up and with time the pain and the horrible sensations will go away. For me they do NOT. For me the pain and those sensations DO NOT EVER STOP!!!
There are days when I can cope with the pain and sensations. I can smile 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 being whiny, gripping, or looking for sympathy. I am not, it is just that the pain is so bad it makes functioning in life impossible.
Because of the changes in the body, many times even just...
🟧 touching my affected area can make my pain worse.
🟧 Wearing clothes or shoes can make it worse.
🟧 Air blowing across the affected area can cause pain.
🟧 For some, a hug or being touched can actually be painful.
🟧 Changes in the weather can make my pain worse.
🟧 Sitting, walking, and even laying down can be painful for me.
🟧 For me, nothing can touch my skin, like a blanket, sock or shoe without causing pain.
I am not crazy and I am not exaggerating, there is medical documentation by expert physicians detailing all this at length.
You may ask how do I get better? How long before I get better? Will I ever get better? Well that is a good and difficult question. There is no cure for what I have, NONE. Doctors hope I can get in remission and shut the nerve off.
So how do I get in remission? That is a good question!! No one has an answer for that yet. Most with this disorder never get in remission. Some don't even get a diagnosis for years due to doctors never even hearing of this disease before. This was the case for my surgeon. Luckily I was seeing another doctor who knew it was CRPS right away. Chances of remission are better if the disease is treated early. The difficulty is knowing and/or trying the right treatments.
Doctors try to treat it with lots of different medications. Well the medications they suggest I take have many horrible side effects and many of the medications aren’t even helpful. Then there are procedures I can try like infusions, injections of medications and nerve blocks that try to shut the nerve off. Some times they help, often they do not. My infusion did not provide any relief. 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 a few with this disorder and that will be my last option. There are holistic therapies that can be tried like acupuncture and Chinese medicine, but they are not covered by insurance and it is difficult to find knowledgeable practitioners. That is my main problem, finding the right treatment to shut the nerve off. This is not like diabetes or heart disease where I can go to any doctor or an 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 this is a life changing diagnosis. It impacts and affects EVERY part of my life. It is 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 even 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 me you may be wondering. A text or call to check on me, ask if I’m up for a visit, maybe drop a meal off, offer to go shopping with me, just be with me. Focusing on the pain and how I am feeling is not good for me. Distraction is good. Stress and negative emotions only turn on the Sympathetic nervous system more. So please don’t ask if I am better, if I am “cured” yet, or how much longer I will be “sick”. I can not answer those questions. All I ask is you be a supportive person in my life who understands I have a rare neurological disorder that impacts my life. I have hope one day there will be an answer and cure for this disorder & I have hope in my Lord.
This is what I deal with 24/7!!! 🧡
🧡 Thanks for reading & understanding. Your prayers are greatly appreciated! 🧡
