Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

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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Comment from: agatha, 55-64 Female (Patient) Published: March 31

In 2001 I was hit by a large door at the mall when I was on my way to work. I had a hand injury, went to the hospital, was treated and released. I went for physiotherapy, had surgery, and had several types of physiotherapy. I was always in pain, so finally in 2002 I was diagnosed with reflex sympathetic dystrophy (RSD). I went through 2 blocks, which was a nightmare, gave up on them, so since 2002 I have been taking medication. There are some days that I can deal with the pain, but other days the pain is unbearable. I would not wish this on anyone. I hope someday they will find a cure. This condition really takes a toll on your whole body.

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Comment from: grandma connie, 55-64 Female (Patient) Published: March 25

I fell and broke my femur in 2001. Within three hours of having the cast applied, I felt a burning so intense that I could barely stand. It started in my foot and ankle. I tried telling the doctor over the next six months but he wouldn't consider anything being wrong. Eventually I was sent to another doctor who knew immediately it was reflex sympathetic dystrophy syndrome (RSD). Over the last 13 years I have had several nerve blocks and have taken dozens of different medication cocktails to help the pain. The skin on my foot peels like a sunburn. I can't have any kind of light touch on my foot or heel, and the muscles in my leg are deteriorating now. I feel the same symptoms in the other leg since a knee replacement.

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Comment from: Vera, 45-54 Female (Patient) Published: March 19

On December 2012, I had an operation on my right hand for carpal tunnel, three weeks later my hand was swollen, purple and shiny and I had a variety of pains, sometimes it was throbbing, a burning sensation, acute constant pain and more. The surgeon told me I had developed reflex sympathetic dystrophy syndrome (RSD) and told me to start physiotherapy right away. I did this for a few months to no avail. I saw a pain specialist several times and he just kept increasing the pain medication. I became desperate, my depression got worse, I went to a chiropractor who offered neurological treatment, which did not help at all. After spending thousands of dollars the pain is still there. Over a year later I am still off work. I have limited use of my hand also I am sleep deprived. I am currently taking gabapentin, Apo-Naproxen and mylan bupropion as well as depression medication. On my last visit my doctor doubted me that I was in so much pain and even told me that RSD lasts one year at the most and told me that I am getting better. I wish more doctors took the time to get informed on this decease.

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Comment from: Carolina1964, 45-54 Female (Patient) Published: March 14

I had surgery for a partially torn tendon in my right hand January 18 2013. Two weeks after surgery my hand seemed to be excessively swollen. They removed the cast 3 weeks after surgery and my whole right arm was swollen from the bicep down. We immediately started therapy but after 2 months it wasn"t improving. I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) and since have had 4 nerve blocks, tons of therapy and take Lyrica every day. It has been over a year, I have some function in my hand and wrist but it will never return to normal. The pain is controlled for the most part. When asked I say, it's not 'will I hurt today', but what pain will I feel today. I have burning, stabbing and throbbing, wrist, hand, bicep and shoulder pain. I just know that I can survive it.

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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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