Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Treatment

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

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: 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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Comment from: Jackie dear, 45-54 Female (Patient) Published: December 10

I am living with RSD (reflex sympathetic dystrophy). I am disabled and cannot sleep, and am very depressed. So I joined a center which helps with my pain and mental state. I have found it hurts to exercise but I hurt more the days I don't.

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Comment from: eye, 45-54 Female (Patient) Published: July 30

I am 48. I have had reflex sympathetic dystrophy (RSD) for 22 years. I have a great doctor. I take my medicines and nerve blocks to help as well as a spinal cord implant. They all are very helpful. Everyday it's a different pain. Some days are fine, while others are rough to deal with. Always talk to your doctors and tell them how you feel. Never give up hope.

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Comment from: 55-64 Female (Patient) Published: June 17

With RSD I experience painful stabbing, burning, almost like an electrical shock on the left side of my tongue, and numbness on left side of lip. When pain is extreme, it is hard to eat or swallow. I have been to two neurologists and an ENT. They have tried Cymbalta, and an anti-seizure drug, no help. Both drugs had side effects and did not stop the pain. It started after going to the dentist.

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