CRPS is a Neuromuscular Disease which affects your skin, muscles, joints, bones and internal organs. It usually begins in the arm or leg and can spread to the rest of your body. It typically follows an injury as minor as a sprain, a tick or dog bite, a break or immobilization after a surgery, a paper cut, a bruise, from giving blood, even after a heart attack or stroke, and the pain is not in proportion with the injury. On the McGill Pain Index it ranks a 42 which is the highest rated pain in existence including childbirth and cancer. Standard pain medications do not touch the burning nerve pain that feels like you have been doused with lighter fluid and set on fire. The injury is united with a disturbance of the nerves in the bone marrow, adrenal glands or spinal cord that supply the muscle fibers to the walls of your blood vessels. It involves both the sympathetic & the parasympathetic nerves.
The sympathetic nerves cause a pinching in the transportation of the blood supply throughout your body. The [parasympathetic vasodilators] are the nerves found in the middle and back parts of the brain and the lower spinal cord, that work against the sympathetic system. This is similar to the way your pupils should dilate, the regulation of your heart beat, or the dilation of the blood vessels. The tubes that carry the blood from one area to another, which regulate the amount of blood passing to a certain organ, are affected.
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When the damaged nerves are not able to control the blood flow properly, it changes the sensation and temperature to the affected area. This leads to other problems: you may notice changes in your skin color – like a pattern of different colors and shades, decreased range of motion in your affected limbs or the inability to move your joints; an extreme sensitivity to medications, noise, smells, sunlight, taste and touch (a light touch or breeze, changes in the weather or a wrong movement can cause intense pain that can feel like knives and burning fire inside the skin yet, your bones feel like they are on ice). Many compare CRPS to being on fire and ice at the same time! You may show signs of swelling, excessive sweating, and changes in your hair, nails and skin. I have had 3 in-grown toenails and suggest having your podiatrist add the acid to the nails when they are removed so that they do not grow back. This will save you a lot of future pain!
CRPS, also known as RSD or Reflex Sympathetic Dystrophy Syndrome and Causalgia, is a neurological progressive syndrome [a branch of medical science that deals with the nervous system and diseases that affect it] that has been around since the civil war, yet we still have no cure. Some veterans describe the pain as intense and hot – long after the wounds had healed.
Don’t be afraid to meet with a Psychiatrist to talk about your pain. The changes CRPS causes to your body can also affect your spirit. A good counselor will understand what you are going through and teach you coping skills that will help you get through each day. I meet with my counselor, Psychiatrist and Pain Specialist a couple of times each month. I even participated in designing a game program for one of my Doctor’s to use for his patients. Below are some of the treatments I have used & some I am still using to manage my pain and symptoms. AN EARLY DIAGNOSIS IMPORTANT!
X-Rays were used to determine the damage from my initial injury; Followed by 2 CAT SCANs to rule out pseudo-tumors and other underlying problems since I was post-concussive for almost 6 months after my initial injury; A sleep study to determine the reason I couldn’t stay awake during normal day-time hours; Medical clearance from the Neurologist so that my Orthopedic Dr. could proceed with an MRI for my shattered kneecap; Arthroscopic surgery to repair my loose bones and to – any cartilage, they could find, back to my kneecap.
Sympathetic Lumbar blocks to help block the nerves. I have received 3 Sympathetic Lumbar blocks but, for me, the freedom pain was shorter than the time it took to prepare the blocks.
Warm water therapy is a great way to exercise and the sooner you can get into the water, the quicker you can begin to feel how good it can be for you. You don’t even realize you are exercising! The more exercise you get, the better you will keep your body from atrophying [wasting away from insufficient use]. Always keep a buddy and a floatation device with you. EXERCISE IS VERY IMPORTANT.
I was accepted into Boston Children’s Hospital for the PPRC Clinic in Waltham, MA. After 4 days they had me out of my wheelchair, off of my cane and crutches! They took me off of all my medicines & taught me coping skills to deal with the pain. Many times, I slip but think I am doing pretty good considering I am not taking any medications. There are 3 other specialty hospitals in the nation but this was the only one that allowed me to go back to my hotel and stay with my mom in the evenings. Their program is 5 days a week, 8 hours a day and lasts 4-6 weeks, but is very kid-oriented with game-play exercises.
At home, I am doing my daily home exercise plan and continuing to go to physical therapy, talk therapy, occupational therapy and chiropractic therapy. The pain is still there but I work hard every day trying to manage it. I also have patella Femoral Syndrome, torn meniscus and cartilage in my knee. I’m not allowed to skip, jump, run or take stairs so my therapy is modified for me to keep my bones from bruising and yours may be different.
I love to know that others have me in their prayers and I will keep you in mine as well.
CRPSKidz is dedicated to helping kids with CRPS by a commitment to share my adventure with CRPS. I hope to make others more aware of the pain associated with this disease and to be a source for other kids.