Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

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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Comment from: rosa, 65-74 Female (Patient) Published: March 01

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) approximately 5 years ago. My diagnosis followed numerous visits to the general physician (GP), hospital, and pain clinic. Several years previous I had surgery to my right bunion. This is when my problems started. Although the pain from my bunion was removed, I suffered problems elsewhere. Symptoms included changes in the skin color of my feet and lower leg, and severe burning pain in my ankles, hips and lower back. I found it hard to function on normal day to day activities. What made my condition worse was the conflicting opinions of different doctors. I found it very hard to try and explain my condition as I had never suffered such pain before. On one occasion my leg was placed in plaster for 3 weeks as they said I'd shown that my left foot had damage to the ligaments and tendons. When the plaster cast was removed my pain became intolerable. Finally, I went to see a different GP who said that I may benefit from taking 60 mg of duloxetine in addition to the 300 mg of pregabalin that I'd been prescribed earlier. After many years I have finally found some relief, even though the side effects are not pleasant. I have gained weight and some days I am so tired and could sleep all day. But, this is much better than living my life in constant unbearable pain. What the future holds I don't know. I hope each day for a cure to this misunderstood disease.

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Comment from: Tayden, 45-54 Male (Patient) Published: February 16

I was diagnosed with reflex sympathetic dystrophy syndrome (RSD) in 2009, 2 years after blowing my ACL (anterior cruciate ligament). At the time I had no idea what the disease was. Now in 2016 it has been over 9 years with RSD, many doctors, everyone thinking they have the answer or the perfect treatment, the truth is there is no answer and there isn't a perfect treatment. RSD affects each patient differently with different treatment options needed for each. What may work for one usually does not work for another, it is why it is so hard to treat. Personally it took me close to 3 years and 25 to 30 different medications before I found what helped. RSD is nasty, there is no cure and very few doctors are willing to listen. Most RSD patients know more about the disease than their own doctor, research all you want, there is no answer. Once diagnosed quickly find what helps your pain the most and stay the course, get help for mental health also. Nobody can live with this disease without mental help, it will drive you crazy otherwise.

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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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