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 07-16-2011, 04:42 PM #1
hannah1234 hannah1234 is offline
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Join Date: Jul 2009
Location: Los Angeles, California
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hannah1234 hannah1234 is offline
Member
 
Join Date: Jul 2009
Location: Los Angeles, California
Posts: 280
15 yr Member
Default feeling defeated... any advice?

I have no idea even where to begin. I have been so good lately... I have been with my doctor for over 2 years and have had no problems. The last two appoinments... not so much... This last appointment he is telling me that I am not handling the pain and am making myself worse and I need to change my way of thinking. Let me just say.... I do EXTRAORDINARLY well for an rsd patient for one ketamine infusion every 3 months. I still can drive, I still am very active for having rsd... I take spin classes when I am feeling good... I push myself to get up and get out of the house even when I feel like I am going to die. I feel like everything has just turned upsidedown. He wants me to take this month program that is 50,000 dollars which is out of the question... I live a life that I can handle my pain, but the whole saying, i dont think the ketamine is helping you. I would like him to feel what I feel like. its so frustrating. its not like he isnt a good doctor. him and shwartzman are friends, and is great, and I have never had a problem. But i feel like maybe i tell him too much, and maybe i am expecting too much out of when he says i dont want you to have pain I have that goal in mind?? When maybe it is not even realistic? Because he said you can have pain just not suffering pain.... I literally feel sick to my stomach, i dont want to get out of bed, but I am and am going to go do errands in a little bit.
All of my friends that took his program hadnt accepted the rsd, were in denial, wanted to kill themselves, have no family support, could not walk... that sort of thing. I am wayway past all of tht. And I know I wont benefit from it. Its like I know my body better than that. I just feel scared forthe futrure and how I am going to have to go back to the pain I used to live in before I had ketamine.... its a scary as hell though.

Is it too much of a goal to think that I wont have pain and that I strive for that and kind of expect that out of my doctor when he tells me I wont have pain? I just need something of some sort of how to handle this situation...
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