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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


HI :wave:
Today I take the 3 1/2 hr. journey(1-way) to see my specialists To get some answers. And now that I have some of them I'm not sure that I was ready for them. :(
I'll give you the general run down:
The Lumps in my legs verify what doctors had suspected after spinal injection(s) not working. (Idon't have all the technical terms but I'll explain as I understand it) I guess there is RSD w/SIP & RSDw/SMP, I have the one that not only affects the sympathetic nervous system it has crossed over to effect other types of nerves and I forget the other term they used.

This is also why they feel that Bells Palsy has developed in my left side of my face, I guess when the nerve "malfunctions" start to cross-over & also effect other types of nerves (which I found out today is permanent damage) that the list of symptoms for RSD become even more broader(if thats possible, HAhA!!)
Today was also the day that the doctors didn't just hint any more, but out right told me. "We will do everything possible and find every treatment possible, but you really need to understand that walking again like in the past may never be." "You will probably always need some form of assistance and at times you will need forms of ambulation like wheel chair etc."
I think I've always known this. But I am NOT giving up hope and I am not going to quit just yet. I haven't walked since 9/14/07, but i believe through faith that I will walk again somehow.
I also had first visit with pain psychologist (after I answered 500+ questionaire and filled out umpteen forms), I liked the visit it was very insightful. I was very surprised by what he could tell by my answers and we set up a tentative program. He also wants us to talk about adjusting to life as it may permanently become. This will be hard because I do not like to talk to others about myself, so openly.
Have any of you talked to a councelor or psychologist for pain or anything? :confused:

Thank you for being hear and listening. I am on overload been going since 3am. :dizzy:
To be truthful, for some reason I feel safe on this board and I really needed to share with someone. :angel: You guys keep me going & I sure hope I can help with you too.
Thanks
Alyson
Hi Alyson, I'm sorry to hear about this new condition that you're suffering from. I had never heard of Bells Palsy until you mentioned it, I sorry that you have to deal with this condition along with having to deal with RSD too. I know how hard it is to deal with the lost of your limbs due to RSD because I have lost permenant use of my left arm and most of the use of my right arm. It is a hard pill to swallow when they tell that's there much they can do for you but help you with the pain. It took me along time to come to terms with loss of my arm and that there would be no way to repair the damage done. I was so full of anger especially since it took so long for someone to take me serious that there was something seriously wrong with my arm. Also I like to say just keep the faith that one day you will be able to walk again because it can happen. I know I've beat the odds of alot of things doctors told me I couldn't do before. For instance, when I was hospitalized with puemonia a few years ago and was in the hospital for about 3 weeks and had a hard time walking when I finally got better. They told me I would need someone from Home Health to come everyday once I got out of the hospital to help my get around. By the time they released me, I was walking by myself without any assistance. I had to push through the pain and the weakness in my legs and knees but I did it and it was worth it. Slowly but surely my legs and knees got better. For me it always been mind over matter because you're going to hurt no matter if you sit around or if you get up and try to walk. Sometimes you just have to take it one day at a time and one step at a time and just believe and remember either way it's going to hurt. Sometimes you have to do little exercises with your legs to help build up the muscles so you can walk. The other thing that you mentioned them putting in you is called a Spinal Cord Stimulator, I've never had one but there are others on the board who have. Just post you a thread asking those who have one any question you have or you can find some old threads about the SCS. There is plenty of info in some of the older threads about them or you can just start a new one. I hope this help you and maybe help you to be able to walk again.





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