Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

What symptoms have you experienced with reflex sympathetic dystrophy syndrome?

Comment from: 45-54 Male (Patient) Published: January 05

I was diagnosed with reflex sympathetic dystrophy syndrome in 2004 after I sliced my tendons in my hand. Sometimes wish I could chop it off, it would be easier. My fingers are locked and I cannot open my hand. I get swelling, pain, pins and needles, hot cold pins and needles, winter being the worst time. Now after 11 years they think they can open my hand with physiotherapy, when they not sure it will work, and I have more pain.

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Comment from: Survivor, 55-64 Female (Patient) Published: December 31

I have had reflex sympathetic dystrophy syndrome (RSD) for well over 12 years. Mine started with a total knee replacement. I felt like I was going crazy, I couldn't stand anything to touch my knee and the pain felt like my knee was constantly being broke (I try to describe the pain as when you break a bone, that's the pain I constantly have). I was finally referred to a wonder pain specialist. He assured me I wasn't crazy and he would help me. After several months of medication, blocks and everything else, he implanted a pain pump. The relief was like day and night. It doesn't take away all the pain, but I can live again. I take pain medication for the bleed-over pain but I can live with it. I didn't go into all the months before I went to the pain clinic because they were a blur. I was so overmedicated I really can't remember them other than they were horrible. I also had to quit work and go on disability because of this disease. I tell everyone that asks, if I hadn't gone to the pain clinic when I did I probably wouldn't be here today. All I can say is don't give up. There are doctors who do care and I know how frustrating it is to try and get doctors to listen to you. You just have to keep trying until you find the right doctor.

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Comment from: Ozzy, 55-64 Male (Patient) Published: July 31

I have been RSD (reflex sympathetic dystrophy syndrome) diagnosed for many years now; I did suffer in the early years with what was thought to be RSI (repetitive strain injury. After many years of being passed from pillar to post and visiting loads of specialists I was eventually told that RSD was the most likely cause of my severe pains that affect both upper limbs and occasionally my lower legs. I have varying degrees of burning, stinging, pulsing and what I call deep nerve type pains in the upper limbs. I have blotchy red/purple hands at times. Cold weather, touching cold items or just walking down the freezer isle of a supermarket causes greatly enhanced upper limb pains. At times I do not like being touched due to the tenderness of the limbs. I have tried many, many types of painkillers and currently use Fentanyl; it does help but breakthrough pain is a real problem. I no longer work as the daily episodes of pain and the action of just using my limbs exacerbates issues; at times pain is very bad but after years of fighting I have grown to just accept my condition and now outwardly show little evidence of what is actually going on.

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Comment from: barbara, 55-64 Female (Patient) Published: April 16

I initially suffered from reflex sympathetic dystrophy syndrome (RSD) in 1988 when I had a car accident. I had a broken sternum and left leg injuries. Shortly thereafter, I had extreme skin sensitivity along with excruciating elbow pain. My orthopedic surgeon tried everything; last ditch effort was to cast my left arm to isolate the left elbow. When the cast was being cut off 8 weeks later, my pain level was beyond words. At that moment, my orthopedic doctor said to his nurse, 'my goodness, she has RSD.' I saw a renowned doctor and within 2 years, as the doctor put it 'sometimes RSD just burns itself out,' I was clear of it. I am now in the grips of it again with my left arm. Hoping to find some relief.

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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: 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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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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