What RSD Is…
Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, is a debilitating, chronic pain disease that, if not properly treated, often leaves its sufferers confined to a wheelchair or bedridden.
The disease typically begins after an injury and, in fact, it was first discovered among wounded soldiers over a century ago during the Civil War. RSD is caused by an overactive nervous system and is estimated to afflict between 1.5 and 6 million people in the United States—exceeding those with breast cancer, HIV/AIDS and multiple sclerosis combined.
While RSD is most common among women, it does not discriminate on the basis of age, race or gender. It can happen to anyone at anytime.
There are several progressive stages to RSD and it can spread to any and all parts of the body. Initially, symptoms may include swelling and sweating, along with temperature and color changes in the affected extremity. Severe atrophy, disfiguring muscle contractions and osteoporosis may later occur.
Severe, burning pain is the most common symptom. Sufferers describe the pain as if “doused with gasoline and lit on fire.” Even simple sensations such as a gentle breeze or vibration can send one into spasms of unrelenting pain.
To date, the only chance for a cure is with immediate and aggressive treatment by RSD experts, which rarely occurs. Otherwise, as the disease progresses, the effectiveness of treatment sharply drops off.
Those with RSD often suffer devastating personal, financial and social hardships. If the disease is left untreated, the sufferer can expect a lifetime of pain and disability, abandonment by family and friends, financial ruin, social isolation and depression which very often leads to the ultimate pain killer—suicide.
All this makes life with RSD a supreme challenge.
RSDSA and John Hopkins University:
2005 Survey of People with RSD
Dr. Jerome Groopman:
The New Yorker: “When Pain Remains” (.pdf)
Massachusetts General Hospital:
“Study finds nerve damage in previously mysterious
chronic pain syndrome”
From For Grace’s Women In Pain Petition…
“I am a 23 year-old female and I have had RSD (full body now) for almost nine years, not diagnosed for the first four. I was told it was all in my head and that I was drug and attention seeking. At 15 years of age, I was belittled and made to feel like I was insane and imagining. It needs to stop. The treatment I received broke my self-confidence and my self-worth. It has to stop!”
“RSD/CRPS has stolen my life. Please help us all!”
“I am a physician with shoulder RSD complicating surgeries. The condition was overlooked by my colleague orthopods and I have had it now for five years. Nothing seems to help. I sympathize a lot with all of you folks because this is a terrible disorder that destroys lives. But there is hope, and interesting research is ongoing. We physicians need to be educated about this entity since early diagnosis is the key to a favorable outcome. Best of health to all of you.”
“I have RSD in all four limbs plus my low back and neck. Any help that could be offered to us would be greatly appreciated! I thank you in advance for waging war with us against this fire-breathing dragon of pain.”
“I was diagnosed with RSD two years ago. Now I can’t even write a letter or color a picture with my kids without pain taking over my right arm and hand. It is a very depressing disease—but what is more depressing is fighting alone.”
“I’m familiar with the condescending, disrespectful attitude of doctors toward women with RSD. I’ve had the condition since 1995 and attitudes haven’t improved. DIALOGUE is often just a one-way street. This petition is a great idea. I fully agree with you! In support from Belgium.”
“I’ve had RSD/CRPS in my foot (but now spreading fast) since 1987- (15 years). Only been diagnosed for three years! I’ve been put down, berated and dismissed as a hypochondriac by at least 13 doctors. It’s time our tears are believed.”
“I am a woman dying from a disease that was ‘all in my head.’”
— Debra V.