RSD or Reflex Sympathetic Dystrophy also known as CRPS or Complex Regional Pain Syndrome is a rare insidious condition that affects millions of people worldwide but unlike other conditions is hardly known about.
The condition is rated on the McGill pain index as one of the MOST painful condition known. More painful than active labor, more painful than the amputation of a digit, more painful than most forms of cancer pain.
Its main characteristics are a constant burning pain in the affected area. RSD can affect one limb or multiple limbs or can even go full body. The condition usually starts in one of the extremities and can spread to other parts of the body. In addition to the constant burning pain, the affected region feels ice cold. Swelling normally accompanies this condition (but in later progressions of the disease the opposite can happen as bone loss occurs, as well as wasting if the affected individual avoids physical therapy due to the pain) as well as skin changes such as mottling color, thin skin due to the swelling, sweating or the opposite, incredibly dry skin.
Treatments normally include nerve blocks, spinal cord stimulators, ketamine infusions, multiple medications, physical therapy as well as an electrical stimulation treatment known as Calmare. Some or all of these are used to keep the pain tolerable but unless the condition is caught and treated very early, the condition only has a hope to enter remission, but never a cure.
I have this condition. I've had it for 8 years now. It started for me with tearing my achilles tendon while dancing. I had a surgery to replace my achilles which lead to a bone infection where the new tendon was attached to my heel. The infection was debrided and thats when I noticed the pain was abnormal. I had stitches removed and it felt like someone was literally tearing my heel off of my body. The swelling never stopped, and then the sensation of burning is best described as rubbing the skin with sandpaper until the skin is raw, then dousing that raw skin in gasoline,and then setting it on fire, all while freezing it in an ice cube. It has spread just from sleeping unusually that damaged a nerve in my left thigh. Because of the spread, I have rejected spinal cord stimulators out of fear of further spread due to another surgery. I have had ketamine infusions, 16 sympathetic nerve blocks, and a sympathectomy (a procedure which destroys the sympathetic nerve that controls my right foot). The nerve has returned, and ketamine infusions are not covered by most insurance and cost upwards of 15k. Nerve blocks are now ineffective other than 2 days. Medication and physical therapy keep the condition bearable and I achieve a new normal of being able to exist with the pain. I dont tell this story for sympathy. I have a wonderful life and I am coping well with this condition. This campaign is NOT for me. This campaign is for the greater good. To help others with this condition who may not be able to get nerve blocks, who might not be able to afford their medications, and above that, to help spread awareness of this condition. There is no ice bucket challenge for RSD. There are not large streams to benefit this condition. Awareness is rising, but its still not enough awareness. Many doctors dont even know of this condition so diagnosis and treatment is slow. I do this campaign and subsequent streams for awareness of this condition, and to help others understand this condition.
For more information on RSD/CRPS visit this website. http://www.rsdhope.org/what-is-crps1.html On this website it offers information on how to recognize this condition, how to help prevent it if possible, and new treatments that are being attempted every day! There is light at the end of this tunnel, and hopefully one day there will be a cure.