Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Symptoms

What symptoms have you experienced with reflex sympathetic dystrophy syndrome?

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: 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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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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