United Brachial Plexus Network, Inc.

Hey Everyone Just thought I'd see if anyone had any info on docs or treatments for RSD my neice got it at 16 now 24 and its so bad she is condsidering having her legs and one arm cut off, Mare

Hi Mare,

What is RSD? I have no clue how treatment have change from the 1960s. I hit IME at 14. Basely doctors told me to have a nice with the ERBS and I did! If you tell me what it is maybe I can say something??

Tom

Reflex sympathetic dystrophy (RSD), also called complex regional pain syndrome (CRPS), is a chronic, painful, and progressive neurological condition that affects the skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain. And in some cases, no precipitating event can be identified.

RSD/CRPS is characterized by various degrees of burning pain, excessive sweating, swelling, and sensitivity to touch. Pain may begin in one area or limb and then spread to other limbs. In some cases, symptoms of RSD/CRPS diminish for a period of time and then reappear with a new injury.

Types
Two types of RSD/CRPS have been defined:

Type 1—without nerve injury
Type 2 (formerly called causalgia)—with nerve injury
Both types of RSD/CRPS share the same signs and symptoms.


It has nothing to do with Erb's, (though could, but I know Mare is not referring to that). I has a patient with it and she too was at her wits end.

It can be very hard to treat. Where does she go now for a specialist? Neurologist, pain doctor, physical rehab doctor (or all of the above)?
http://www.rsds.org/index2.html
They seem to have the most up-to-date info.

Marieke 33, LOBPI

Thanks for information , I am learning to.....

Tom

Thanks Marieke you explained it better then I ever could. It started when she banged her elbow on the corner of a desk in school. Over the yrs it has gone from her arm to both her legs they are swollen and purple and she can't even wear clothes the pain is so bad she has lost all function of her right arm and is now wheel chair bound. she has been to sooo many hospitals and docs even had brain surgery in germany to try to shut the nerves off she is now in the hospital in Philly being treat for pain the doc say nothing more to do she wants her arm and legs cut off. One neuro told her to go to mexico there is a neuro there that will put her in a drug induced comma using herrione and morphine and this is supose to deaden the nerves but I'm afraid it will kill her. I came to you cause you helped me so much in the past I figured maybe you had some info that my neice didn't Thyanks for the site going there now. Your the best wish you worked in NJ we need nurses like you. Mare

I hope she finds some relief soon. It can't be easy to be at that point.

Marieke