Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

What symptoms have you experienced with reflex sympathetic dystrophy syndrome?

Comment from: sweetpea62308, 45-54 Female (Patient) Published: January 21

I was diagnosed with reflex sympathetic dystrophy syndrome in 2002 after an injury to my left shoulder. I finally found a wonderful doctor who has me on pain management. The weather plays a big part of how I am going to be for the day. I have severe twitching, and my arm turns blue, I cannot tolerate cold anything. I have to literally dress as warm as possible, even in the summer. I now am pretty sure it has spread to my lower limb, because now that turns purple and feels extremely cold. In 2006 the same doctor diagnosed me with multiple sclerosis, but refused to put me on medication for it. I have literally gone to 10 doctors for help, they don't even know what RSD is. I am so frustrated. My blood pressure is so high due to the pain, I also haven't seen anything on the symptoms to say that it could spread, but I am here to say it does. I also have fibromyalgia.

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Comment from: Niki1, 25-34 Female (Patient) Published: October 08

I have had reflex sympathetic dystrophy syndrome (RSD) since 2004 which started from foot surgery but the doctor didn't diagnose it and instead did more surgeries thinking it would help but the third was the beginning of the end. It spread full body and internally within 3 weeks and then within 3 months my feet, knees, hands were all curled and locked. I couldn't swallow due to my nerve to swallow had shut down so I needed feeding tubes. Then my bladder failed. It took them 5 months when it went full body before it was diagnosed. I saw 56 doctors in 3 states in 6 hospitals. All think I was crazy and suggested I just go into a mental ward, including family that thought the same. I was hospitalized in my home state before they AirEvac'd me to the Cleveland Clinic. Since, I have seen 212 doctors in 13 states and have tried every treatment. Ketamine was the one to help get me walking again. I still am hospitalized every few weeks due to flares. This monster just came in and ripped my life apart.

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Comment from: Kim, 35-44 Female (Patient) Published: August 05

I know what your going thought Mary I have the same problem but I have it in my left foot. I have had many things done over the last 14mths I don't see a light at the end of the tunnel I have had casts on Botox I lost count hydrotherapy physio now they are going to try Bio electric therapy. No amount of medication seems to hold the pain from patches to pills. I have also had nerve blocks which are good until it wears off. I also suffer from depression due to it I find it really hard to care for my family having to rely on hubby more.

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Comment from: Never Give Up, 55-64 Male (Patient) Published: August 01

I found regular visits to my chiropractor work better than any meds or conventional treatment. My RSD doesn't slow me down any more.

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Comment from: YogiLyn, 35-44 Female (Patient) Published: July 10

I have a question for everyone. My father was diagnosed when I was little with RSD. He has found no relief. I also have other family members on his side that have been diagnosed with this. My problem is as follows.... In 2001 I had surgery to remove disc at L5, then in Dec 2011 I had neck surgery at C5-6 to shave bulging disc around nerve. I reinjured my neck about 3 months after surgery. Actually it was more pulled and strained muscles (so they say). Now almost a year later I have extreme pain in my lowerback, right hip and leg. It feels cold, tingly and hurts like crazy. My neck and left arm and fingers also tingle and hurt. I have suggested to doctors about RSD due to family history, but they continually tell me "oh that's not what this is". Can anyone please suggest what I need to do next?

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Comment from: 45-54 (Patient) Published: July 08

I have Carpel Tunnel Syndrome and had surgery on both hands. I also was diagnosed with Fibromyalgia 7 yrs ago which is am in constant pain. Now yr 2013 my Dr informed me that I have RSD. Life is hard enough without all pain I already had and now this. If I wasnt already depressed enough to advise me of RSD. I tried everything toget rid of this pain. My next step is a pain clinic. I hope there is something that can be done & soon.

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Reflex Sympathetic Dystrophy Syndrome - Share Your Experience Question: Please share your experience 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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