Reflex Sympathetic Dystrophy (RSD)

[livingwith]

i’m wondering if anyone has considered, or actually decided to have their foot below he knee] removed due to rsd. i was hit by a car while riding my bike, have had 4 operations on said ankle, was diagnosed w/rsd, had therapy, drugs, nerve blocks, and it’ll soon be 2 years and the pain is unbearable. my mobility is very limited, and i no longer can run, bike, swim, as everything irritates it. i cannot sleep. i want it off!
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[Teresa J]

Hi

Well, my suggestion is not to lop off that limb. Seems research says that you will only then have the same pain, but worse as it will be phantom pain. Yikes.

Two and a half years ago I was diagnosed with RSD in both my feet. I was nearly driven out of my mind for over a year. I owe Mayo Clinic in Rochester MN a great deal. After a whole hearted effort including PT, Psyc, Meds, and a three-week outpatient in the Pain Rehab Center I now can bear the pain (to an extent) and have regained much of my mobility.

The docs at Mayo Clinic seem very understanding and have a treatment plan that saved my life. If you can, try to go there for eval and treatment.

Sharing in your pain,
Teresa J

[ladysaltfire]

I have been there many times. I finally have medications that are helping, plus I have a neurostimulator implanted in my back. I currently take Celebrex 200mg, Desipramine 150 mg(this medicine has greatly reduced the amount of pain meds I was taking), Morphine 30 mg and Flexeril 10 mg. I am thankfull my pain management doctor was willing to keep trying until he found something with minimal side effects that actually helped. I wish you the best of luck.

Carol

[Pete + Rose]

I'm sorry you're going through so much pain, I don't know what meds you're on but there are some strong ones out there that could give you some relief!. My name is Jeff and I have had RSD for a little over a year. Mine also started out in my right ankle, then moved up the leg all the way up to the groin. Next it traveled to the left foot and ankle and did the same thing, except my left knee seems to be affected alot by the RSD. It also travels above the knee about 4 inches.

I have it in my back as well all the way up to the middle of the shoulder blades. Sometimes when I wake up the pain travels around my back to my breast bone!.

This happiness all started because I had 3 back surgeries in 2007. 7/26/07, 7/28/07, and 12/15/07. It's a long story, but after all the rehab both physical and aqua, the pain still persisted in my right leg, which was fine before all 3 surgeries. My RSD was diagnosed in early March of 2007, and as a result my life has never been the same. I take many medications, but the ones that help are Cymbalta, Lyrica, Morphine, Valium, and Opana. These medications don't take all the pain away, they just help me get out of bed and survive, one day at a time.

[katiekat]

I can totally empathize with you. I hear myself saying that I wish I could have my legs cut off several times a week! I got hit by a car, too. I was walking my dog through a crosswalk just over a year ago when it happened and since then my life and the lives of my family members have been turned upside down! The dog made it through without a scratch, incidentally. However, among the other injuries I suffered, I was recently diagnosed with RSD in both knees.

I don't know if any doctor would actually agree to amputate your leg, but, boy howdy, do I know how you feel!!! Like some of the other people who have responded to your post, perhaps if you get the right type of treatment/med combo something will finally do the trick. Do you do acupuncture? Aquatherapy? I do both of those and they do tend to provide some relief and I've shown improvement, albeit very minimal. Are you getting psychological therapy? That has helped me a lot, too.