Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

Comment from: Oziti, 55-64 Female (Patient) Published: September 19

I had both feet operated bilaterally for sizable neuroma removals twice in my 20s. I even fully recovered from a post-operation bone infection in right foot. Fast forward to my 30s and 40s. I had three more bilateral surgeries in each in a different inter space. I was told only that 2 earlier surgeries were not successful nerve cuttings. The last surgery was what has led to bilateral reflex sympathetic dystrophy syndrome (RSD). The post-operation pain got worse and worse. I was referred over to a pill counting pain management doctor who had no concern about a diagnosis or viable treatments. I spent years feeling and being judged as an opioid seeker. I had to retire at 44 and was found totally disabled. I continue to be grateful for Medicare and Social Security. Fourteen years later I still manage the pain levels, but now I have a 'team'. An absolute god sent pain management doctor who works with me monthly to try to maintain my value of daily life, my physical therapists and depression counselor. I have an implant SCS (spinal cord stimulator) and my 2nd intrathecal pump now running Prialt instead of opioids for the last 2 years. I still require breakthrough medicines. Don't ever give up. If not in my lifetime, but for our future generations, we must all remain positive in finding a cure.

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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: shy, 45-54 Female (Patient) Published: September 06

I hate having reflex sympathetic dystrophy syndrome, the pain kills me. It feels like I am on fire, my feet burn, my legs burn and it hurts so bad. Not a day goes by I don't hurt, the pain is so bad I used to think about killing myself.

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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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