Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

What symptoms have you experienced with reflex sympathetic dystrophy syndrome?

Comment from: in constantpain, 45-54 Female (Patient) Published: April 16

I am always in pain, diagnosed with causalgia in 2011. However no doctor would listen until 2015. Now I am stuck with a huge mess 2 surgeries later. It is ruining my life.

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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: norma, 65-74 Female (Patient) Published: July 31

I have had reflex sympathetic dystrophy syndrome since 2001 and self-diagnosed. For a year no one would say why I had excruciating pain which started in my lower left leg and soon spread to both legs and feet. I was depressed and was prescribed every painkiller which did not work until my doctor prescribed a painkiller which did, but unfortunately was taken off the market. I've had acupuncture, reflexology, epidural, none of which worked. I am now pain free in my legs mostly but can still see nerves firing off in the muscle. However, I am now suffering from severe pain in my groin and back on the right side. As I am taking morphine, gabapentin and amitriptyline, I thought my pain would be under control. My love and sympathy to all sufferers.

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Comment from: neves777, 55-64 Male (Patient) Published: July 01

I had an injury causing reflex sympathetic dystrophy and I had a tarsal tunnel surgery to my left foot. The pain is worse than ever. That was in 2012 a 2000 pound metal plate jammed me in my leg, I had no breaks of the bone or anything but my vessels/veins/muscles/tendons/etc. were injured tremendously. I cannot feel my toes on up to my knee and have numbness up through my leg into my hip and into my back. My left side is pretty much paralyzed. If I'm in my wheelchair for too long it's very hard to get up; I get up and stand for a minute and start to walk on one foot from my crutches. The pain is unbearable at times. The extreme of hot and cold is off the charts. I hope this helped someone on this page.

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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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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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