Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

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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Comment from: Sue, 55-64 Male (Patient) Published: April 05

I had reflex sympathetic dystrophy syndrome (RSD) diagnosed in my wrist about 8 years ago. My hand swelled up and it seemed the finger nails on that hand grew faster than the other hand, and my arm also became hairier than the other side. The pain was like sciatica in my wrist. I went to 3 doctors before it was diagnosed and the hand specialist figured it out and said I need surgery immediately to clean it out. I am not quite sure what he did but the swelling subsided and pain went away and other than a slight restriction of movement and ring finger end joint doesn't bend, I'm fine now.

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Comment from: Jazzy, 65-74 Female (Patient) Published: March 02

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 2006/2007 after having knee surgery. The first doctor I went to did not tell me what the condition was he was treating me for. When I went back to him for the second time I then asked him exactly what I do have, and he became angry because he thought he had told me, he hadn't. I immediately changed doctors. I started going to a hospital where the doctor treating was an expert in this field and explained it to me. I was receiving blocks (needle into my back) and it helped a bit but eventually, there was nothing more he could do. What he did say was I was never to have another surgery unless whatever I had was life-threatening. Yes, RSD is a nasty disease and when you have a doctor who refuses to discuss it with you, it makes it even more frustrating. I also have fibromyalgia and between the two I am in constant pain.

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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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