Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

Comment from: Faith, 55-64 Female (Patient) Published: June 05

Seventeen years ago, after suffering with tendonitis, I had an ulnar nerve transposition. I awoke after surgery in extreme pain which continued for 4 months when my physiotherapist finally told my orthopedic surgeon. They thought I had reflex sympathetic dystrophy syndrome (RSD). My left arm was swollen, purple, and sensitive to touch and temperature, my finger nails ceased to grow, I had a long patch of black hair that ran on the underside of my arm and finally no longer had use of my hand or arm. I was prescribed drugs, nerve blocks, pain management and hypnosis. I finally have just learned to live with it. Some days are good, some days bad. But I am alive and remember there are many more people in this world worse off than myself.

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Comment from: Gator Girl, 45-54 Female (Patient) Published: June 04

In 2009 I was in a car accident and had to have brain surgery in 2011. From the car accident my hips began to burn and swell. At first the doctors just said that I was gaining weight. After the brain surgery I had to have my rotator cuff fixed and a tear in bicep. Within days my hand swelled and turned purple. I felt as if I had glass all in my hand and arm. The orthopedic doctor said it was from being in the sling and I more than likely had a pinched nerve. This went on for about 2 months. My occupational therapist said she thought it was complex regional pain syndrome (CRPS). I went to my neurologist on my own and asked him. He took one look at me and said he was sorry but yes, I had reflex sympathetic dystrophy syndrome (RSD). I had 6 blocks in my neck to see if it would help, but not one block took. I am better in my hand all except that my fingers are all contracted and that will never change; and now they have finally decided that it has spread to both of my hips. I am in constant pain in my hips, but life must go on. I am still able to work and I am grateful that I have a loving family that helps me on a daily basis.

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Comment from: Dawn1959, 45-54 Female (Patient) Published: May 30

I have reflex sympathetic dystrophy syndrome (RSD), 7 years now. I am now 54. The cause is still in question. I had arthroscopic surgery on my left knee and my pain increased. The doctor and I decided a total knee replacement would be the best course of action. During surgery my tibia was fractured and screwed together. I worked diligently at physiotherapy, my pain increased and my range of motion lessened. The doctor did a manipulation, I lost 5 degrees more motion. Once again the pain increased. By this time I could no longer stand to have my leg touched by fabric. I live in the Northeast, wear short skirts year round which is cold and embarrassing. A year and 3 doctors later I was diagnosed, I was told that it might not be too late to halt it. After I had 17 sympathetic nerve blocks, the small relief was outweighed by the risks. I now take a number of medicines to lessen the symptoms. I recently started a Butrans patch which keeps my pain at a tolerable level. I work but am losing ground fast.

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Comment from: Brianna, 25-34 Female (Patient) Published: May 21

I have had reflex sympathetic dystrophy syndrome (RSD) for 5 years now due to a car accident that broke both of my legs. I had a nerve cord stimulator surgically placed and have never felt better! I still have pain but am able to function and work. My pain level decreased by at least 60%! Ask your doctor about this and Lyrica.

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Comment from: Lisa, 45-54 Female (Patient) Published: May 21

I have had reflex sympathetic dystrophy syndrome (RSD) for 22 years now. It's been a rough road. It began in 1992. I had a bad car wreck and crushed my hip. After 2 surgeries, I healed quickly however, I started having stinging pains (1000 stinging ants/bees) in the foot of my broken hip. After suffering a great deal, mentally I was exhausted. There was no sleep for 6 months. I averaged 2 hours a day. Finally after 8 months, I found a podiatrist that prescribed me with Elavil. I slept 15 hour days for the next 6 months (catching up). It helped calm the nerves in my foot so I could finally sleep. She also told me to take lots of Tums for calcium. I haven"t taken anything for my RSD in about 17 years. I have bad days and good ones. I think overall my life has been altered due to this horrible disease.

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Comment from: Paige, 19-24 Female (Patient) Published: April 11

I was diagnosed with reflex sympathetic dystrophy (RSD) when I was 17. I had an injury to my back when I was 15 and was put on crutches. Doctors didn"t listen to me and thought I was faking the whole thing because all my tests came back negative and I saw countless specialists. My left leg ran hot and cold, I would get bad burning, stabbing pain in my leg all the time and it would go numb for no reason. It also turned purple, splotchy and shiny. My rheumatologist sent me to a pain management specialist who finally diagnosed me with RSD as well as a slight herniated disk and a pinched nerve which caused my RSD because it went untreated. After 2 years of physical therapy, 4 radio frequent lesions, and 2 nerve blockers, I"m 21 years old now and I still suffer with RSD. I can manage it so it doesn"t cause me too much pain all the time but I still have bad flare ups 3 times a year, which last 2 months at a time. I"m still in pain constantly but it"s only about a 4 whereas it used to be a 10. It took me 8 months to get off my crutches and I still have muscle atrophy from the nonuse. I"m glad I didn"t give up on going to doctors but I"m still upset because I was a kid and no-one listened to me until I found a pain specialist.

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Reflex Sympathetic Dystrophy Syndrome - Symptoms Question: What symptoms have you experienced with reflex sympathetic dystrophy syndrome?
Reflex Sympathetic Dystrophy Syndrome - Treatment Question: What kinds of treatment, including medication, have you tried for your RSD?

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