Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

What symptoms have you experienced with reflex sympathetic dystrophy syndrome?

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: KBM713, 45-54 Female (Caregiver) Published: May 30

My mother was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 1992 after falling down the stairs and breaking her foot. One of the main nerves died in her foot apparently, which caused the RSD. Or that is what we were told. I was only about 4 years old when this happened. It affected my mother tremendously. I did not have a normal childhood because my mother was always in so much pain. Back then they did not have as much resources as they do now, so the doctor's easy fix was to just give her lots of pain medicine. Once her body got used to that, she had to take more and more. Eventually she was so dependent on her pain medicine, she would go through withdrawals when she didn"t have any for more than a few hours. It sadly changed her as a person. She"s been gone now for 6 years and I miss her tremendously, but I know now she is not in pain anymore. She was only 54 when she passed away. Basically what I am trying to say is I am sorry for anyone who has to deal with this pain on a daily basis, I saw it growing up basically my whole life. I couldn"t even cuddle with my mom because her skin was on fire 24/7, and any movement of the bed hurt her, and put her in tears. (Even with her pain medicine.) I hope they find relief soon for this terrible disease.

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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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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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