Dr. Billy Alexander, an internal medicine physician from West Monroe, Louisiana, took a strong message to the American College of Emergency Physicians annual meeting in late October: Complex Regional Pain Syndrome (CRPS) is real.
“Surprisingly, some physicians are somewhat skeptical about it,” Dr. Alexander was recently quoted as saying in The National Pain Report, “but I know it’s real.” Alexander’s daughter injured her hip when she was a 21 year old college basketball player and developed the condition, and he says the experience taught him much as both a doctor and a father. He has since developed a relationship with the CRPS community and speaks out in helping to educate physicians about the condition, also known as Reflex Sympathetic Dystrophy (RSD).
As a former emergency doctor himself, Dr. Alexander relayed two distinct messages to emergency room doctors at the ACEP annual meeting:
- Understand that CRPS is real
- Ketamine injections may be helpful in treating CRPS
Study Says Ketamine May Effectively Treat RSD/CRPS
A new study has suggested that ketamine may be a safe and effective way to relieve chronic pain in adolescents suffering from a variety of chronic pain conditions, including CRPS. The researchers conducting the study found that ketamine significantly reduced pain scores in 37 percent of the injections that were given (a reduction of 20 percent or greater was considered significant). Patients with CRPS/RSD experienced the greatest reduction in pain during the study, as compared with those suffering from other chronic pain syndromes.
CRPS/RSD is a disease of the sympathetic nervous system that ranks as the most painful form of chronic pain existing today, according to the McGill Pain Index. The condition often develops following some sort of trauma that damages the peripheral nervous system.
I want to thank you so much for believing in us. I developed RSD after a severe knee dislocation . I swelled from groin to toes. I knew that wasn't right. I normal only had localized swelling when I dislocated the other knee. A year after the dislocation, I dislocated again many times before but,'this time I knew it was time for surgery. I had ligament repair 1.5 cm hole busted out if the back of the condral of my femur. Things where never right after that dislocation. No one really listened I told them but I was ignored.2 years later my body started really being taken over by pain and I began seeing a rheumatologist. 2 years and pain still getting worse my rheumatologist knew he was missing some but what? I saw a neurologist and he knew right away. Now I have a pain management dr, a pain pump, wheeled walker with seat to rest, electric wheel chair and have gone full body. I am grateful the neurologist knew what was going on. I wanted to be fixed now but they can't. So at 39, I wait and pray for a cure. I obviously can't work nor be a nurse any more
I fell off my roof 5 years ago and crushed my left foot and ankle. I have had 4 surgeries in 5 years. I ended up with a severe infection and after that cleared they fused it by cutting out a bone below my knee replaced it with a titanium rod, 2 plates, 17 pins and screws. the pain was soooo severe, not even my oxycontin, or oxycodone worked. I was diagnosed by a surgeon and pain dr. with severe rsd. I worked in a hospital for 30 yrs. and have never heard of this. I used to be so active, now I am mostly confined to a recliner. they said the only other option would be amputation, or pain pump. I said no to both, due to fear. if anyone has more info. about a pain pump, please let me know. I had to quit drinking, due to health. I would use it to numb my foot. this pain is unbearable, so any suggestions would be helpful....suffering in ohio
Thank you for the recognition of such a horrific and debilitating condition. It's hunbling to know that you are now active in the CRPS community in helping spread the word an awareness especially in the medical field. I suffer CRPS as a result of a leg trauma caused by a speeding drunk driver who hit the car I was front seat passenger in . I have been fortunate enought to have received a 7 day in patient ketamine infusion treatment that clashed with my body and made me terribly sick. It was a very traumatic experience for me an my family and is something I wouldn't suggest- it was too harsh on my body. However I have head that in some people doing oral ketamine or shorter infusions ( couple of hours ) can be effective .
I don't think our bodies are designed to be able to handle a drug like ketamine for 7 days an nights straight 24/7 .
I have CRPS in my whole left leg with my knee frozen an stuck bent , I am on crutches and can't weight bare without them, 16months so far and counting :-( .
From Samantha lungu
Australia , F 28
Jill in Indiana
My lower leg was crushed in the Navy back in 1981. It was crushed from the back side, just below where the nerve/artery cluster branches out - the neurologists said that that's what saved my leg. The impact was so intense, it cracked the front of my leg bone. Back in '81, the nerve disease was called Causalgia; a term from the Civil War era. It has since been renamed (I don't know why) and now it is CRPS/RSD.
Three years after my crush injury, the Navy's treatment of my massive leg pain was a lumbar sympathectomy. Before that surgery, the temperature of my foot was 84 degrees F. My foot was always cold and blue; I was on crutches for 3 years. Then the Navy did the lumbar sympathectomy surgery through my abdomen; it was a surgery as primitive as Portsmouth Naval Hospital, built during the Civil War. I have had 3 other back surgeries since the 1980s - my leg pain is always explained away as a lumbar disk problem. What I would give if we could just cut the darn leg off and rid me of this pain.
The Navy also gave me 35 plus Epidural Steroid Injections to fix my leg pain. The steroids have destroyed my immune system, my lungs and endocrine system. I now have diabetes and lymphedema of the face because of the steroids - my eyes are almost swollen shut with lymph fluid that cannot drain. All of these "cures", "fixes" and treatments have been worse than the original crush injury to my leg.
I see a pain management doctor now; he cannot say the word for my worst diagnosis - Adhesive Arachnoiditis (AA). He cannot say that word because his treatments for pain are pain pills and Epidural Steroid Injections (ESI). Because of the AA, I can never have another ESI or any other procedures done on my back. There is no cure for Arachnoiditis and it is a progressive disease.
I cannot believe that there are doctors in this day and age who do not believe that CRPS is real. Maybe they shouldn't have changed the name from Causalgia... that's a disease that has been known since our Civil War.
I salute you, Mary Alice McLarty and Dr. Alexander, for spreading the word of this dreadful disease. If more doctors only knew...
Jill in Indiana
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