Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

Comment from: S MURPHY, 45-54 Female (Patient) Published: August 26

I hate having this reflex sympathetic dystrophy syndrome. The pain kills me, it feels like I am on fire. My feet burn, my legs burn and hurt so bad. Not a day goes by that I don't hurt. The pain is so bad I used to think about killing myself, then I would think who would take care of my kids better than me, and the answer is no one. So here I am trying to beat the pain, maybe one day I will.

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Comment from: pston, 55-64 Male (Patient) Published: August 03

When I try working, repetitive motion causes my neck, shoulders, back, and chest muscles to feel extreme heat; like someone opened the door of an oven. Then a crushing, burning pain hits. It has dropped me in parking lots, in my yard, going to the mailbox, and it has put me in the hospital. All this happened after my left shoulder was operated on. It causes my blood pressure (BP) to go very high. Doctors suspect reflex sympathetic dystrophy syndrome RSD but refuse to diagnose. They try to treat the high BP but I keep telling them when muscle attack happens BP goes up because of the pain. I have a massage chair I sit on at home and BP goes down to 130 over 64 as long as I stay still. I need solutions.

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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: bellablue, 55-64 Female (Patient) Published: August 22

Someone asked how long reflex sympathetic dystrophy syndrome (RSD) has been known about. The answer is, during the civil war doctors noticed that men wounded in battle whether they lost a limb or just had severe wounds, would have severe and sometimes uncontrollable pain, even though their wounds were healed. Because of this observation doctors started studying patients with this sort of pain and RSD was discovered.

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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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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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