Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

Comment from: roberta13, 65-74 Female (Patient) Published: July 22

I have had reflex sympathetic dystrophy syndrome (RSD) since a botched surgery in 1990. There is no reason to live with the pain, a good pain clinic will get it under control. I also have a dorsal column stimulator in my spine; doctors accidently cut 2 major nerves in my right groin area.

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Comment from: dorilech, 55-64 Female (Patient) Published: June 15

I acquired reflex sympathetic dystrophy syndrome (RSD) from carpal tunnel surgery. The pain was unbelievable when they took out the stitches. I had nerve pain in my hands for months. I currently have tingling/burning pain in my hands which is under control with Neurontin. My right side now mirrors the left (torn rotator cuff, painful elbow, carpal tunnel). I get shots in my back for osteoarthritis, I have had 3 shots in my neck for ganglion nerve blocks, my eyes are bad and my hearing is going in my right ear. I am frustrated with the doctors because they won't listen. I look okay on the outside so they assume that I am okay on the inside. I don't wish RSD on my worst enemy.

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Comment from: Margaret, 45-54 Female (Patient) Published: May 17

I have had reflex sympathetic dystrophy syndrome (RSD) since 1998 onwards. I tried just about every treatment out there. I am on low dose Norco as a higher dose may not work during what I call just-kill-me pain. I had back surgery and have RSD in both legs. My suggestion is to find a doctor who actually listens to you. I am still active and try to deal with the pain. As hard as it is for us with RSD it is also hard on our loved ones.

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Comment from: beejay, 65-74 Female (Patient) Published: May 12

I developed reflex sympathetic dystrophy syndrome (RSD) in my right foot after having what was supposed to be a minor surgery to remove a section of bone in my little toe where a corn had developed. That was in 1991 and I am still in pain to this day (2016). It took doctors three years and numerous treatments and medications before my condition was diagnosed. I have the tingling, burning pain in the foot on a constant basis. In 2012 I needed and had a knee replacement. I developed RSD in the knee too. I take pain medicines daily; use a power wheelchair, a walker, knee brace and cane to be mobile. I have gained weight as I cannot move as I once did. I have moments of depression, but have pretty much accepted this is something I just have to live with. If another doctor even mentions the word surgery to me, I panic. I will not go under the knife again unless it's a matter of life or death! People who do not suffer with chronic pain don't understand and think I'm sometimes making excuses for not doing things or for not wanting to do things. Truth is, I just hurt so I do less to feel better. I had to retire at age 44 because I could no longer do a job I loved. My wishes and sympathy go out to anyone who has to deal with this ailment.

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Comment from: c manganelli, 19-24 Female (Patient) Published: May 05

I have reflex sympathetic dystrophy syndrome (RSD). After surgery it appeared. I found a chiropractor who had a machine called Calmar. I went for treatment and received relief. I now can get into remission with the machine. I also find myself lucky that my dad does pain management and has purchased the machine to help others too! I call it my miracle machine.

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Comment from: odette, Female (Patient) Published: April 25

I have suffered from reflex sympathetic dystrophy syndrome (RSD) for over 17 years now due to an accident I had at work. I live on morphine on a daily just for the pain alone. I have had pumps to try and help me and then at the pain clinic I was informed I need a pump in my stomach for this. I feel like my world is falling apart with this thing that I have ended up with for the rest of my life. All because I knocked my arm on a door locker my hand goes blue and my fingers are bending in over like a claw. I would not wish this pain 27/7 on any one. I suffer awful pain day and night, which gives you massive chronic depression as well.

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Reflex Sympathetic Dystrophy Syndrome - Symptoms Question: What symptoms have you experienced 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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