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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi, and thank you so much for responding to my question. I am glad you found the board. I have had it for almost 12 yrs. now and I know how beat you probably feel. My doc. just pissed me off so bad the other day. I am just getting out of a wheelchair after one very long depressing year. Around Nov. my legs were swelling so bad from 2 spinal cord stimulators that took it out of my hand and arm and zapped it right to the legs.
In Dec. we went to Disney with my 4&8 yr old cherubs. I think it must've been the plane ride or just the right combo of things that made it so bad I was 3x my size. My stomach was so swollen in the am that I looked 7 mos. pregnant. As I would move around it would dissipate and spread, but it was like overnight. When I returned the doc. put me on Lasix for the swelling and knock, knock, knock, the massive edema is under control. My stomach though is a mess. It is looking like a duck, walking, and talking like one too. I hate when these docs. do not listen to the patient. As I am sure you have done, I have been put through tourture. They tried everything the could. I even had Ketamine infusions. This is a monster. I think well know I pissed my doc. off because after she took 1/2 my blood and gave me a gynelogical ultra-sound she said no I do not think it is the rsd. I think it is Irritable Bowel Syndrome. I am getting off as much meds as I can because they are not working. I am done with the guinea pig route and I think that twisted her- NOT my problem. I am vomitting and I cannot eat. This has been going on for a long time too. Luckily, from being in the chair and gaining from Methadone I have extra weight but it is coming off fast. Soon I am not going to have any excess to lose. I mean I wanted to get down to my normal weight but I knew once I lowered the Methadone from 60mg to 20 that it would shed off. Well things that were tight 2 weeks ago are floating on my body.
The problem is roe is that docs. either blame everything on RSD, like you said with your gallbladder, or they test you until they are convinced of it. I am writing all my docs. and hospitals in the area. They know me well and I am going to give them my contact info for anyone they see who has rsd and needs to talk or some advice. I am not a doc but the truth is that I am going to listen to people with this disease coupled with my own intuition and that is going to guide me. No more dealing with doctors egos.
I wish you the best and thank you again. Nikki :angel:

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