Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

What symptoms have you experienced with reflex sympathetic dystrophy syndrome?

Comment from: LoriCBP1, 35-44 Female (Patient) Published: June 16

I was just diagnosed with reflex sympathetic dystrophy syndrome/complex regional pain syndrome (RSD/CRPS) in May 2014. I also have fibromyalgia, arthritis and bipolar disorder with severe anxiety. I am in tremendous amounts of pain. The physiotherapy doesn't seem to be helping. There is a constant tingle in my left hand, contraction, spasms, and hot and cold issues. It turns really red sometimes and sometimes blue. It throbs a lot. I've lost a lot of function in my hand and can no longer dress myself. Most all tasks are now difficult.

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Comment from: Lizzy, 55-64 Female (Patient) Published: May 14

I had carpal tunnel surgery, and next day I had severe burning and throbbing. Pain like I have never had. When I walked in the office they did not recognize me for the wretched look on my face. I was throwing myself against the wall with burning pain. It is reflex sympathetic dystrophy syndrome (RSD) the doctor said, and to get to a pain management doctor immediately. I had several blocks and lots of medications and a tremendous amount of hand therapy. Roughly six months of my life was spent dealing with this pain. The pain is gone now but I can feel electricity in fingers when they rub together. I was told to have as little surgery as possible, by a famous sports doctor.

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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: rhonda, 55-64 Female (Patient) Published: January 21

I have reflex sympathetic dystrophy syndrome (RSD) and I would wake up with tingling in my hand and wonder what was happening. It got worse every day where I couldn't take the pain any more so I went to the doctor and they sent me to pain management. They put me on Norco-amitriptyline-clonidine but nothing takes the pain away to where you can have a normal life. Pain rules my life; I try not to think about it but your body gets so tired of living this way you don't have a way out. Most days I want someone to just cut my hand off. And it travels to other parts too. I've found out it is starting in my foot, all because I fell and hurt my arm. So yes it is a nightmare living with this but they say don't give up hope of them finding a cure so that's what I do, but it isn't easy. So people out there, I know what you are going through.

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Comment from: Puglady2cute, 65-74 Female (Patient) Published: August 05

I have had reflex sympathetic dystrophy syndrome for over 10 years and no improvements. Believe me I have tried all treatments including acupuncture, and I am a bleeder (not a pretty picture). Also I have Raynaud's disease to add to this. I am now taking hydrocodone 3 times a day and gabapentin 3 time a day. My newest problem is I have tendinitis of the Achilles tendon (same foot). So the pain was constant and had to take extra hydrocodone now, that I am running short. The doctor said I've got to wait till next appointment. I just wish they could understand this is not a makeup pain. Between severe arthritis and this I am in pain non-stop.

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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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