Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 06-16-2013, 03:35 PM #17
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Angelina55 Angelina55 is offline
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Angelina55 Angelina55 is offline
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Join Date: Feb 2013
Location: Post Falls, ID
Posts: 175
10 yr Member
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Quote:
Originally Posted by finz View Post
I'm sorry for all of the physical and emotional pain you are dealing with now, Angelina.

As disappointed as you might be wit the failed SCS trial, I suspect that you may have dodged a bullet on that one. I've just read too many horror stories here about SCS's (or, worse yet, initial glowing reports that turn into horror stories a year or two later) to feel that they are a good long term solution for us.

It's disappointing when anyone doesn't "get" our pain issues. When the person is a close friend or family member, someone who we thought "got" it or someone who we (thought we could) rely on, the emotional toll is so much worse. As traumatic as it can be, I'd rather know NOW, when I'm only on my sickbed, then be disappointed by someone when I'm on my deathbed, when there is no time left for me to find someone who can support me.

Is your medical team working on finding some other options for helping you get a handle on the pain ?
No, as far as I have been told I have been left to myself. I don't know what to do anymore. Plus my doctor just cut my pain meds down which has put me stuck in bed and crying/screaming pain for 4 days. Arggg I am going to have to talk to him and get him to put me back on what I was taking because at least then I had a fighting chance at a somewhat life. But right now I can't do anything. And then yesterday my right leg was in so much pain that I couldn't stand it and it was purple with bruises up and down it, so I am scared that it has spread to my right leg! I am trying to not freak out or stress out about it because I know that will make it worse, but I am scared!!!
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