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 03-16-2013, 05:01 PM #30
LIT LOVE LIT LOVE is offline
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LIT LOVE LIT LOVE is offline
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Join Date: Mar 2010
Posts: 2,304
15 yr Member
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Quote:
Originally Posted by tos8 View Post
Yeah I had 2 botched TOS surgeries. So my coctail of meds is what I need. I didnt start out on all of them at once and obvisly we tried other solutions for a long time. So when you have your ribs and neck muscles taken out of your neck and chest, let me know how you feel! Pete here below knows what TOS already feels like, but to then have RSD added into the mix. Well its a wicked combo that I wouldnt wish on anyone! We have aways been careful with my meds and this dr doesnt even usally prescribe the combo i have, but she knows what TOS is and then how bad off i was after the surgerys and then the RSD. So we have balanced my meds very carefully over the years to get to where i can atleast function. I think Pete below understands what im talking about. You can even go to the board below for the TOS paitents and i honestly cant go on it because it makes me sick when i see "im having surgery" because it ruins your life and they dont know it. I wish i would have done my research to see how bad the surgery was. But I didnt, i wanted to be a normal teen and get back to work asap because I was planning on being a PT. But a few days after surgery and you relise your worst off then you were befor well thats when you know youve just been screwed over. When your ribs clamp down like a vise grip so it makes it hard to breath, or your one arm isnt even much of a use anymore, or when it feels like a knife is going in and out of your chest over and over or when your neck hurts and its stuck tilted to the side because one to many muscles were taken out, or when your scapula hurts and again feels like a knife is just going up and down over and over because you have a palsy and it no longer holds on its own or when under your armpit hurts and its a deep boring pain, most likely because to much muscle was cut threw and nothing was repaird after. Oh and all this was just a trial, so more could have been done and I wouldnt have known it. Add the bilateral RSD to it and its just grand! And when every DR you see tells you im sorry to much damage has been done theres nothing more we can do, its great! So while most would just LOVE this combo because how wonderful it is, I DONT! I would much rather have my life back. I do my research now, im very careful and again we did not start all this at one time, its been very slow over the past 6yrs to get everything just right for my body and my needs. So thank you for trying to understand!
Your situation is extraordinary even for an RSD patient and is not comparable to the OP. All our situations are unique though, that's why a doc needs to carefully choose our meds. Your tolerance and need are different than mine. What you need to take to get through the morning, could kill me.

I've been on the same meds and dosages for years, but when I was still trying out new combos, I had docs that made conversion errors and simply made errors on the directions. I had a pharmacist that was very good, caught them, and refused to fill as directed. (Not the norm in my experience.) He refused to fill one customers meds as prescribed and instead of going back to his doc, the young man found another pharmacist. A few months later, one of the clerks read an article about him in our local paper, that he had died from those same meds.
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