Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

What symptoms have you experienced with reflex sympathetic dystrophy syndrome?

Comment from: Bek6336, 35-44 Female (Patient) Published: March 01

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) about 4 years ago. I worked in pain for 4 years at my job I loved for 24 years. I lost my job, friends, and my partner of 7 years. Not a lot of people know of this disease and they really don't believe that someone can be in pain all the time. I stopped telling people because they don't understand, even doctors are not educated in this disease which is discouraging. People and doctors need to know more about RSD, I have had doctors who don't believe; try working a physical job while on pain killers. Now I am trying for disability which I hope goes well.

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Comment from: Survivor65, 55-64 Female (Patient) Published: January 28

I had total knee replacement in September 2013. After 4 to 6 weeks of fairly normal recovery, pain began increasing to where I could not handle even clothing touching the knee. The surgeon treated me as a malingerer just wanting more hydrocodone. Finally I went to my internal medicine doctor who is great. He said it was reflex sympathetic dystrophy syndrome, gave me gabapentin and symptoms began to ease after a few weeks and were gone within 6 months. It appears I am extremely lucky to have a great internal medicine doctor and no long term effects. Suggest you listen to your body, not just one doctor, and seek other opinions.

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Comment from: Sue, 55-64 Female (Patient) Published: November 13

Ten years ago I fell and fractured one of those little bones in my wrist. The orthopedist went in to repair it because it was preventing me from gardening and playing the piano for any length of time. Five weeks into my recovery I started having insomnia and my hand swelled, turned purple, started burning and felt like it had glass in it. My doctor knew immediately what it was, reflex sympathetic dystrophy syndrome (RSD), and sent me to physical therapy and to a physiatrist to help. We tried many medications. Most did nothing, but through trial and error I am now able to get about 4 hours a day where I can do things that aren't too painful. I take, 20 mg Oxycontin CR a day, trazodone to sleep, and Effexor for depression. My pain specialist was a brain surgeon, he helped me to understand that to control your pain for quality of life is healthier for your brain and life than to suffer needlessly. You must find a doctor that will work with you.

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Comment from: painfulone, 45-54 Female (Patient) Published: October 21

I got hurt at work, lifting. Initially my wrist, hand, and forearm strain turned into a carpal tunnel injury which led to surgery. I have severe burning pain like the worst sunburn on the inside of the arm, swelling, discoloration, etc. I am unable to touch it. Ganglion blocks help my reflex sympathetic dystrophy syndrome (RSD) till they wear off, I am getting a spinal cord stimulator soon. I hope it helps me, I hate blocks! I can't stand any narcotics, I've got an allergy to them. So wish me luck please, it's moved up into my shoulder and jaw. Sometimes I can't open my mouth.

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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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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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