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: 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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Comment from: annie, 55-64 Female (Patient) Published: July 31

I have had reflex sympathetic dystrophy syndrome (RSD) for 12 years, it has slowly progressed especially on right side from foot to face. It causes eye pain and light flashes and increase of migraines.

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Comment from: bunkibil, 45-54 Female (Caregiver) Published: July 14

My twin passes out from the, because the pain is so unbearable, this reflex sympathetic dystrophy syndrome has been going on for almost 5 years. Pain pills aren't really working and she is always trying to get herself off the pain medications. I want to help her so bad and find her the right doctors!

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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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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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