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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


My name is Dawn I am 33 years old have 2 children and have been dx with RSD since Aug. 2000, Although the injury occured May 18, 2000 my ortho. doctor did not have a clue. After 3 months of him trying this and testing that he finally sent me to a Pain Management doc. My ortho. doc did 3 MRI's, a bone scan, ultra sound of lower right leg to look for blood clot to explain severe swelling and blue/purple color of skin. He put me on crutches and no weight bearing for the first month, and PT that included heat and ice treatment. So by the time he sent me to another doctor he had made sure to do everything to me to spread this stupid stuff. And had no idea that everything he was doing to me was wrong. Oh yea and the cortizone shot he gave me in my right hip (greater trocantor area) added to the rapid spread. By the time he sent me to the pain doctor the disease was in both legs from my toes to the top of my pelvis. I have been on so many different meds for the last two years that I can't remember all of them. Right now I take oxycontin, percocet (for break thru pain about 4-6 a day) paxil, baclofen, elavil, gabatrill. I had 3 nerve blocks and was admitted to the hospital for 6 days with a spinal cath, inserted to paralize me from the waiste down. So that they could do intense PT to get rid of some of the severe swelling in both legs. My pain level is from 6 to 10 everyday. Since december my arms and hands have been swelling and have started with the electric shock type pain, and my lower back has gotton so bad that I can not sit up for to long or move around very much. Actually I have trouble sitting, standing, walking, and laying down. My vision is blurred and I have been getting bad headaches that seem to last for days. My days are filled with changing positions and catching a little sleep here and there. I don't sleep much due to the pain. Recently I have started having SEVERE leg cramps in my calfs, the kind that I wake up screaming out in pain.
At my first appt. with the pain doctor she walked in took one look at my legs and me and said she knew exactly what I had, "RSD". Part of me was so relieved to have someone who belived me and tried to understand my desperate need for help. Atleast I knew I wasn't crazy. That day seems to have been the first day of this awful nightmare I am living as a life.
Before this disease took over my life I too was very active. I am a single mother with 2 kids. I worked as a Paramedic/Fire Fighter full time during the day and was paid to standy duty several nights a week for the volunteer rescue squad. I also painted houses on my off days and evenings. I coached my kids soccer team and helped coach my daughters softball team. Not to mention I also had a social life from time to time. :) My injury happened on a fire scene. Since my injury I have lost my job, my certifications, can't help with my kids sports, can't play or ride bikes with my kids and have absolutly no strenght or desire to be involved with anyone.
I assume it is normal for all of us to have bad days and wish to die if that is the only way to stop the pain. By the grace of god maybe someday someone will find a cure for this condition we all know as our life of hell. To everyone that suffers from this horriable disease I will pray for all and continue to dream about the day that we can wake up and not feel like we have been banned to hell on earth.

My prayers are with you. The more people we educate about RSD the more chances that just one of them may find a way to help us all.

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