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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

It's hard when family won't listen, but getting them to read about what rsd and trying to get them to understand as much as they can helps. A doctor can help get through sometimes where you can't. If any of your docs is willing bring someone to at least one appointment with you and have the doc explain a bit.

1. I knew my rsd spread because of several things. 1) The pain. There is no other pain like it and no reason for that body part to be hurting. When the pain did not stop and wasn't lessened by over-the-counter meds, I knew. It was quickly followed by color/temp change as well so no question. I don't burn all the time, but when I had burning flare up somewhere then I also knew it spread.

RSD spreads most of the time, there's no way to know how quickly it may or may not spread since our bodies work different. I was pretty much full body at 11 months and was completely full body by the end of year 3. In my non medical condition it sounds to me as if it's creeping into your back which isn't unusual considering it's in your arm/shoulder already. The right knee...*shrugs* All you can do is document when it burns, if there is pain, what the weather is like, what you were doing. It's a good idea to do that for your rsd part everyday. A pain diary gives you a clear picture of what makes your pain flare and can help the doc see clearly what is going on with you day to day.

2. RSD can cause numbness. I would bring this up with your doc to be investigated. It's all to easy to blame it all on RSD and it could be something completely different. Itching with rsd is common.

3. I've gotten sores from the get go. Yours sounds like an rsd related thing. Our whole body is affected by rsd and that includes our immune system which will delay healing. Have you showed it to your doc? There are creams and stuff that may help it.

RSD causes skin to get very dry and look shiny. My legs and arms and well my whole body from head to toe is flaking off skin everywhere! lol I only have minor swelling issues. You don't have to have an arm or leg blow up like a balloon. My one leg did at first but quit after I learned to walk again.

A "specialist" is any doc who is VERY knowledgeable about RSD. Knows what it can and can't do to us and doesn't look at you like you've lost a few rocks when you tell him/her things that are going on and that you're feeling. It just happens that most of the time that person is usually a pain doc/anesthesiologist.

Hope this all helps and DO NOT be sorry about asking questions, ever! You need/want to know and that's the way to do it. :D It's why we are here.

I'm going to bump something I wrote up for you. It's called "You Have RSD Now What". I'll warn you now, it's humor only!!! It is not intended to be a serious guide but read it once a day for a laugh. Laughter helps. :-)



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