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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I for one am glad to see that someone is having success with a treatment. I get excited to see someone getting better and hope for all of you that it will go into remission. Just as I keep some hope for myself, but yet knowing that even though I've had this for 10 months now, there isn't much that will help most likely.
My RSD/CRPS has spread rather quickly and all I can do is hope that it spreads no more for awhile. I'm a Worker's Comp case and I have no choice in so many things, including blocks. I know the risks of it and wish to he** that I didn't have to get it done. If I don't, chances are WC will cut me off of everything without a backward glance labeling me as uncooperative. I'm already being labeled as a faker by many. If only they had to live with this and feel the pain and watch helplessly as it spreads throughout their body.
It's not just the US though that has no clue how to treat it. It's everyone, everywhere!! They just keep trying different kinds of things on everyone they can and see if it helps. We all react to the treatments differently. We all have the same diagnosis, but not all the same symptoms, some are the same too. It's hit or miss and until someone does some serious studying of this, we will never have any answers or real treatments to help us. It'll continue to be a shot in the dark on a case by case basis. I have taken my anger at being treated so shabbily and turned it toward fighting to bring awareness to all the people that I can. I want RSD/CRPS to be a household name along with all the other diseases and conditions that are so well known.
For all those who know me a bit....I have had 2 visits with my Neuro now. Sharon, the, I FINALLY Have A Good Doctor Party on board the cruise was a bit premature.
:( I saw him on the 31st and WC has gotten to him too. I am no better off now than on Nov. 19th when I saw him, yet he says that I can work part time as a hostess now!! OMG....after saying in Nov. that I wasn't ready to work. Boy, wonder how I'm going to do this when I can't stand or walk or sit for very long. If I'm made to go in, I'll do my best, but I don't think I'll get very far at all. And I'm having an EMG done on the 12th too. I shall post how it went when it's all over, or my hubby will if I can't. The MRI I had on my lower back came out ok. No slipped disks or herniated or anything else serious, just some wear and tear. Wonder how much some is...hmmmm. :) I'm only 34!! Geez.....
Anyway, I'd love to continue to see you post on how your progress is going Sam and am really hoping for you that it goes into remission to never appear again. Just as I hope that for everyone who may have a chance to have it happen to them too.

Karen





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