04/04/2023
Léelo, nos ayudas, te informas , quizás nos entendes , entendes el dolor que vivimos todos los días... y ayudanos a difundir, necesitamos más visibilidad, necesitamos investigaciones, necesitamos una mejor calidad de vida.... y desde ya gracias por tomarte unos minutos de tu tiempo.
🧡🧡EXPLAINING RSD/CRPS
I have a rare neurological disorder. Only some 2,000,000 people around the world have it. (Although who knows how many more are left undiagnosed too?) So what is it? RSD, reflex sympathetic dystrophy, was the name used for years. The current name is CRPS, complex regional pain syndrome. So what does that mean?? It means that usually from an injury, trauma, or surgery 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 than natural child birth or even having a digit amputated without anaesthesia. The pain makes no sense to the body or me. It causes pain to be greater than anyone would expect for my injury. The pain should have stopped but the damaged nerve tells the body it is in pain. Then there is another problem. Nerves are connected in a line called a nerve pathway. Between each nerve is a gateway. 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. But besides hurting there is more. So let us pretend you hit your hand with a hammer, that hurts! But wait, there is more. Besides the pain there are other sensations the damaged nerve can cause. Now take that 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, 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 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 and time 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, bitching, or looking for sympathy. I am not, it is just that the pain is so bad it makes functioning in life nearly impossible. Because of the changes in the body many times even just touching my affected area can make my pain worse. Wearing clothes can make it worse, sensitivities to textures, fabrics can drive up my pain levels.
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. I am not exaggerating, there is medical documentation by expert physicians detailing all this at length. This is just some of it.
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. 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 into remission? That is a good question!! No one has an answer for that yet. Most with this disorder never get in remission. Doctors try to treat it with medications. Well the medications they suggest I take have many horrible side effects and many of the medications aren’t helpful. Then there are procedures I can try like injections of medications and nerve blocks that try to shut the nerve off. Some times they help, often they do not. They can try implanting 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. 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 or how to try and treat this to shut the nerve off.
This is a life changing diagnosis. It impacts and affects EVERY part of my life. It can be frightening and lonely. It can be exhausting trying to deal with the constant pain. 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.
I hope you find this helpful, for more information please go to RSDSA website & see how you can support. 🧡🧡
