RSD Outreach awareness

New to group RSD 11 years

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Re: New to group RSD 11 years

Post  byrd45 on Thu Dec 29, 2011 11:04 am

Hi Bill,
Thank you for posting your story. Seems like you have been through alot I can understand how that feels. Nightmares are horrible I get nasty ones after my ketamine infusions. The doctors really do forget that we are not just the patient but a person who wants to know what the heck is going on here. Been through quite a few docs on my end too. Been going through this stuff for a decade and it is frustrating more times than not. I was hurt at work I used to work for the PHILA. SCHOOL DISTRICT until a student with emotional probems lost it one day and rammed me into a stone wall. I developed RSD in my brachial nerves in my chest and it has been a mess since then.lidocaine treatments and now several years of ketamine treatments which are at least helping some but wear off but never give me back the ability to work which I would love to do. Instead it is days filled with doctors appointments and hopes for an uncertain future which I am sure you can understand. Anyway, I am sorry to hear all you have been through and I hope the doctors figure out your meds so you don't have nightmares like that. You don't need the added stress it is bad for us. Hang in there.Thinking of you and happy holidays,Robyn
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New to group RSD 11 years

Post  coastiebill on Wed Nov 30, 2011 7:29 pm

Hello every one

My name is Bill. I have had RSD since 2000. My RSD started after a open Tib/Fib fracture caused by me miss stepping while a work. Work was in the sub-basement in a nuclear power plant. Following surgery and 6 months of no weight bearing the pain changed to where I could hardly stand it. My leg turned several colors over the next year. My surgon who pinned and screwed my leg together was the first to say RSD. I then saw a so called pain doctor, who did more damage that good. I had nerve blocks, TENS, Spial cord stimuator, cut the nerves. Then he started me on Oxyconton, after a year of that I went to neuronton and something else. Had the SCS removed due to not being effective at all, the trial was OK. I the dumped the pain dr. or he dumped me, I don't remember. I went to my family Dr. a DO. He started on oral opits and that went to fentanyl patches and oral pain meds. It got to where I could not work at all, even in a sit down job. The company placed me on long term disability. They required me to apply for social security after 2 years on long term. I was approved on the first try. Now the company pro-rates my long term disability due to the ssid. Any way I had my pump installed two years ago, starting with morphine. (I was still on all of my patches and oral meds) After a year my new pump dr. quit the practice. She turned over her pumps to another pain dr now 75 miles away. The first thing he asked for was a drug test. That started the relationship well. the second week he strted asking me to change to prialt I so no for the first six months, I relized he had started lowering my pump meds with out telling me. he then started lowering my patches and oral meds. By this time about 4 months ago, he had me off all oral and patches. My pain was a constant 9 and he said " do you want to try Prialt now? I was hurting so bad I was willing to try any thing. I have been on Prialt for 2 months now and have no pain relief at all, I keep telling him but he said wait for the prialt to start working. I have had 3 adjustments now with no results. The side effects are starting, I have very vivid and terrible dreams that wake me 4 or 5 times a night, some times crying. My hads and feet are numb most of the day. I have to be very careful not to fall. I have fallen several time in the 2 weeks.
Enough writing, sorry about some of spelling
I wish every one a pain free day
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