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 01-27-2017, 08:18 PM #13
Hotfoot53 Hotfoot53 is offline
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Join Date: Jan 2017
Location: Florida
Posts: 47
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Hotfoot53 Hotfoot53 is offline
Junior Member
 
Join Date: Jan 2017
Location: Florida
Posts: 47
8 yr Member
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Quote:
Originally Posted by Shay08 View Post
Yes, gathering this information ahead of time is a really wise thing to do. I do get concerned that eventually I may need a different approach and I have been pleased with my latest doctor's knowledge regarding different meds and approaches. I do appreciate this site because people share what is working for them. Your input and input from people like Littlepaw who shared the latest info on clinical trials is so important. The more we know now the better we will be prepared to make new decisions if the need occurs.

Thanks for your and all of the members' input on this site.

Shay
Shay-
I agree having alternatives researched ahead of time or just familiarizing myself with options does make me feel more in control and more prepared for whatever changes. I was talking with someone I trust about RSD being without a cure and they named off diabetes, blood pressure, heart disease etc which also have no cure. It helped me gain some perspective after a difficult week.

Little paw mentioning research studies was great because I printed studies out for the foot doctors staff this summer, but never considered it for myself! 😊

For anyone reading this thread:
I did want to add about the gralise that the part I had the biggest problem with was that because it is time release I wouldn't know when I could get relief, couldn't plan when I'd be safe to drive or modify the dose if I was in less pain and didn't want as much in my system. So it felt like a roller coaster ride. Also, the change from 2700mg gaba to 300mg gralise (going up to I think 900 by the fourth day and staying at that for 4 days) left me really under medicated and the side effects from the rapid decrease were uncomfortable. I'd recommend a slower reduction of gaba if on a high dose and I did speed up the gralise faster than the starter pack which was very helpful.

And that's all from me now, thanks for reading a long post.
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"Thanks for this!" says:
ger715 (01-28-2017), Littlepaw (01-28-2017), RSD ME (01-29-2017), Shay08 (01-29-2017)
 

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