RSD, or CRPS, is a rare debilitating disease, about which very little is known.
For that reason, I, Christine, a 13 year sufferer of RSD and published researcher, continue to search for new cures with other researchers, including Dr. Kenton Crowley, Pharm.D. I have created this web page with a goal to find common occurrences in RSD sufferers that could lead to a better understanding of this disease.
Please take a few minutes to answer the questions and give me input as to what, and why you think you might have RSD.
Also, as this is scientific research we also need a control group, so if you don't have RSD please fill out the questionnaire anyway. Thank you so much for your participation.
Thank you so much for your help!
-Chris
What is it?
If you don't have it, chances are you've never heard of it. RSD is not a rare disease, but it is an orphan disease. In the U.S. alone, several million people may suffer from RSD. It has been documented under many names since the Civil War. RSD is a nerve disease that's defining characteristic is pain. Sometimes burning, sometimes throbbing, sometimes aching, sometimes as if you're being cut open, sometimes a mere breeze can cause agony, or a sheet, or a pet rubbing against the afflicted area. Beyond that there are various symptoms and patients may experience some or all, the single constant being the intolerable pain.
To me it’s been described both as “worse than cancer” and “like having a raw nerve on a tooth exposed to ice—all the time.” Most of us would agree that those are accurate descriptions.
Pain
- Hyperesthesia: threshold of pain is increased, but despite that the pain is more severe than it should be and continues after the stimulus is gone.
- Allodynia: pain from a stimulus that does not usually evoke pain.
Tropic Changes
- Skin may be warmer or cooler to the touch than the unaffected area
- Discoloration of the skin may occur
- Skin may become shiny and tight looking
- Nails may become coarse and ridged
- From lack of use atrophy may occur
Other Symptoms
- Motor Changes, difficulty in moving afflicted area
- Spasms, or involuntary contraction of muscles from mild to severe
- Edema, or swelling
As a result of all these things it is not uncommon for a person with RSD to be sleep deprived and depressed.
