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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   A Definition Question- re meaning of "Full Body RSD" and "Internal RSD" ?? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/97325-definition-question-re-meaning-body-rsd-internal-rsd.html)

Vknusta 04-27-2013 01:28 PM

My life with RSD aka CRPS
 
Hi Kate,
Yesterday was my one year mark of having this crazy disease in both of my hands. So far that I know of bc doctors really don't know I don't think. Well it has gone to both arms and shoulders. I also need to ask a question, so have any of you had burning throughout your whole body from head to toe burning? Well that's what I face everyday and now I'm having circulation probs and my feet are now starting to hurt and turn slightly red. I am so confused! I hurt everywhere, it started as Carpal Tunnel Syndrome in both hands so I had both of them fixed together. Well then came the RSD. My husband of 14 yrs got it 9 months before me from a bike accident then surgery. So he has it in his foot. So we both have it and life is soooo hard. Driving hurts the dryer, cooking bc of heat. I hate this monster and we need a cure. Good luck to everyone. Gentle hugs. If anyone needs to talk find me on twit RSDVanessa or vknusta. I need answers! Oh ya or FB Vanessa Knusta

Kevscar 04-27-2013 11:32 PM

As far as I understand it full body means all 4 limbs, torso, neck head eyes mouth and internal organs. At least in the UK anyway but they then change the name to try to hide the figures

mollymoo123 04-28-2013 10:47 AM

OMG!!!!!!! There needs to be a set of guidelines for this. But a really good question. Ive wondered about what is full body as well. Also the thought of internal is something i just cant bare to think about at this stage. I think that scares me more than anything.:confused: I really hope its no as painful for you all as i imagine it to be. :grouphug:

Im pretty sure i now have RSD in my entire left side from the shoulder down, although my back is only mildly effected, my arm/hand and leg are the worst. It started in my hand. I do have symptoms in my right hand and foot that are getting worse. This is all new for me and im only just starting to get to see the right doctors.
I was also panicing that it was moving into my face. Last week i was feeling numbness (over medicated still from last flare up...oops but atleast i wasnt feeling pain) in my left cheek. I also noticed that i wasnt tasting my food on that side. Im currently getting alot of cold numbness anyway, so ill be watching that space.

Im also going to check out a few of your blogs. I have also considered starting one for myself... and my sanity. lolo


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