Patient Comments: Reflex Sympathetic Dystrophy Syndrome - Share Your Experience

Please share your experience with reflex sympathetic dystrophy syndrome.

Comment from: jo genesta, 45-54 Female (Patient) Published: December 08

I have reflex sympathetic dystrophy syndrome (RSD) and I have had it for 17 years now. It started with a knee surgery. I have had 37 surgeries in my life so the RSD attacked my whole body, both arms, both legs, and lower back. About five months ago both of my hands swelled up and are beet red and I have a lot of burning. I have tried every medication the doctors gave me but nothing really helped. I have had a spinal stimulator put in until a car hit me from behind and knocked my leads out of place. I've had a morphine pump in me for a month, nothing seems to help and to top things off I now have fibromyalgia.

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Comment from: judy mathis, 65-74 Female (Patient) Published: November 13

Reflex sympathetic dystrophy syndrome (RSD) came on to me in 1995 after surgery to remove a Morton's neuroma. I live in a small town, and after many, many trips to every specialist, they could diagnose RSD. After many treatments and consults they decided there was nothing they could do but medicate me and send me on my merry way. I still have neurologists stating they are still not sure I have RSD. It has been a roller coaster. I lost my home, my husband, and my job due to this disease. I hate it. I want to be off the drugs but without the drugs I shudder to think what I would do to control this pain. It is a 24/7 disease. It never leaves you and is always in the limelight. As you can tell I am bitter over this. I keep thinking they can do hand implants but can't repair my foot from this pain. Thank you for listening, it helps to vent sometimes.

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Comment from: Better, 65-74 Female (Patient) Published: October 27

I got reflex sympathetic dystrophy syndrome (RSDS) after back surgery. I had a ruptured disc with pieces of disc in the nerves for 1 1/2 years. I was seeing a pain doctor, but was told there was nothing wrong but that I was just fat. I asked my primary doctor to order MRI. I then went to a neurosurgeon and had a fusion. Soon after, my toes started to 'fire up'; they would at random times turn fire red, swell, prick and burn. The only thing that helped was to put an ice pack on. I could not touch my toes even with a sheet because it hurt so badly. I went to many doctors but no one knew what to do so it just kept getting worse, 'growing' up my legs almost to my knees. A doctor started doing sympathetic nerve blocks at the site of surgery. I have had one procedure per month for 5 months and it is gone from my legs but still in my feet, though not as severe.

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Comment from: Female (Caregiver) Published: April 23

A year ago my daughter got diagnosed with complex regional pain syndrome (CRPS). It started in her right foot and has since also moved to her left foot, knee and thigh, mid and upper back. I am interested to see all the different treatments. My daughter has to be homebound because she cannot be touched, she hurts so badly. It breaks my heart to see her in so much pain. The family doctor refuses to give her pain medication because she is eleven years old. The pain is driving her crazy that she had to be put on Prozac. Her doctor tells her she has to learn to deal with it. This awful condition is hard to deal with and watch someone go through it. I am broken hearted because I cannot take her pain away.

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Comment from: joannb., Female (Patient) Published: April 22

I am a reflex sympathetic dystrophy syndrome (RSDS) patient who is currently in remission. This remission has lasted currently 10 years. I had a fantastic doctor who really understood the syndrome as well as a neurologist who spotted it quickly and sent me for a block for diagnosis, which was positive. I live day by day hoping I never retrigger this syndrome. I still worry about any injuries thinking it is going to retrigger it. Mine started with a sprain to the wrist and I ended up within 2 years, with RSDS in my entire body. Lots of blocks were done. Find a good doctor who really knows and understands what you are going through. I can honestly say that I had the best doctors and a great support system.

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Comment from: worriedmom, 19-24 Female (Caregiver) Published: November 11

My daughter (aged 23) was diagnosed with reflex sympathetic dystrophy syndrome (RSD) after a fall on her knee. The pain is excruciating and she is using a crutch and we start seeing a physical therapist this week. In the meantime, I am reading posts saying get a good doctor who understands the seriousness of RSD. I hate to see her suffer so much!

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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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