Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Treatment

What kinds of treatment, including medication, have you tried for your RSD?

Comment from: Tripadoodle, 55-64 Female (Patient) Published: July 12

I acquired RSD (reflex sympathetic dystrophy) in 2003, after I broke a bone in my left foot and the cast was too tight. It subsequently spread to my right foot after I wore a tight bandage on it. I know now not to wear anything tight on any part of my body. The first stage was very bad and I mainly used the left foot as a very painful, stiff, swollen, red prop, as it wouldn't bend. I was given amitriptyline which calmed the nerves and killed the excruciating pain but it returned periodically, though not so bad. I was very fortunate to see an osteopath who manipulated the foot and ankle and I am now able to walk normally. My feet don't like changes in temperature or wearing heels higher than one inch. I sit with my feet up just about all the time and, when I have to have them down, I use a footrest to keep my toes in the air. I feel so sad for those who are left with the first stage problems as they are indescribable. I thought my life was over but I get by quite well now and know what I can and cannot do. I have been prescribed gabapentin to use if the RSD flares up.

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Comment from: peterbilt01, 65-74 Male (Patient) Published: March 08

I am truck driver, 71 year old. I crushed leg and foot in 1984. I had pain pump infusions shots as you all have and it did not work. RSD (reflex sympathetic dystrophy) is bad stuff. Finally the doctor gave me prescription for Dolobid, its generic is diflunisal and it has really helped. I hope it will help someone. Good luck.

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Comment from: Sherry, 65-74 Female (Patient) Published: September 15

I have had RSD (reflex sympathetic dystrophy) for four years, the result of multiple surgeries. The pain was indescribable so I went to a pain clinic. I've had a neurostimulator implanted and it's helped immensely. I realize that physically things will never be the same, however my quality of life with this stimulator has been so much better.

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Comment from: steve c, 65-74 (Patient) Published: July 08

I got RSD/CRPS (reflex sympathetic dystrophy/complex regional pain syndrome) in my right foot and toes following ankle surgery. I was not diagnosed for 4 months. I have been to several doctors who knew little about this problem. For treatment I tried 6 nerve blocks with no help. I tried physical therapy, maybe helped a little. Finally I found a doctor who has treated me 12 days in a row with Calmare therapy and I am doing well so far. It is a non-invasive electric stimulus treatment that is helping me and others.

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Comment from: joyce, 45-54 Female (Patient) Published: December 12

I fell 7 years ago and had little pain but while walking my dog one night, he pulled my arm and that night my arm had pain I'd never experienced and I went to the hospital the next day. The doctor said it was reflex sympathetic dystrophy (RSD). Now I go to a pain clinic, and I have my blocks done in my neck, for both of my arms, once every 6 months, but now my doctor says that it is dangerous so we have to explore my options, whatever they might be. I'll get back to you in a week. But I'm always in pain no matter the pills the neck injections or therapy, sorry I don't feel much hope!

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Comment from: Lanie, 45-54 Female (Patient) Published: January 19

I fell down stairs November 2, 2011. I've been in constant pain 9 surgeries later. I am told I'll never walk again. I've been in a wheel chair, thought myself to walk, and ended up ripping both Achilles' tendons. I have a spinal cord stimulator. I still need medications for my reflex sympathetic dystrophy. I asked the doctor to remove my foot! Living with this is almost suicidal! Seriously. And there's no end in sight.

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Comment from: Terri, 45-54 Female (Patient) Published: February 14

I broke my ankle and luckily was diagnosed with RSD approximately 1 month later. We treated it aggressively; 3 lumbar sympathetic nerve blocks, intensive physical therapy, and hydrocodone for the pain. Initially all I could do was wiggle my big toe. Another big help was swimming. I started out just simply learning how to walk again in waist deep water. Then I would swim 1 lap, then 2 more, and so on each day. I"m convinced this was a huge help. I started to walk without crutches after 6 months and was in physical therapy for almost 1 year. It took about 2 years to get back to normal. Still the affected leg is a bit weaker 5 years later, but I"m in total remission. Key is early diagnosis and a take no prisoners attitude. Trust your gut, the 1st orthopedist kept insisting it was just a badly broken leg. I knew it was something else - the pain was almost unbearable. I sought 2nd opinion within 1 month and he nailed the diagnosis in 5 minutes. Be persistent and keep on swimming.

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