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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   I qualified for the drug study!! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/248742-qualified-drug-study.html)

RSD ME 08-09-2017 12:54 PM

I'm praying this will help you find some pain relief Catra! Hugs.

Littlepaw 08-09-2017 06:40 PM

Hi Catra! So very excited for you. I will keep you in my thoughts and prayers that your treatment will be successful. :hug:

CRPSbe 08-10-2017 08:16 AM

I don't mean to burst the bubble, but for me the bisphosponates in such a late stage (diagnosed almost 3 years in to it), did 0 for me, yes it helped the osteoporosis part of the RSD get better and I no longer felt like walking in a swamp (with such frail legs). It got a little "firmer".

But maybe I was a lousy candidate - at least they tried and gave it their all, as I got 5 infusions over the course of a week, one right after the other - yeah, that bad!

Anyway, I wish you good luck with the treatment!!!

catra121 08-14-2017 10:56 PM

Quote:

Originally Posted by CRPSbe (Post 1248770)
I don't mean to burst the bubble, but for me the bisphosponates in such a late stage (diagnosed almost 3 years in to it), did 0 for me, yes it helped the osteoporosis part of the RSD get better and I no longer felt like walking in a swamp (with such frail legs). It got a little "firmer".

But maybe I was a lousy candidate - at least they tried and gave it their all, as I got 5 infusions over the course of a week, one right after the other - yeah, that bad!

Anyway, I wish you good luck with the treatment!!!

I don't expect miracles and I haven't had much luck with anything else...so it's worth a shot. That's the thing with CRPS...there's not treatment that works 100% with any of us. All we can do it try the stuff we feel comfortable with and hope for the best. For me...if the treatment doesn't make me worse (outside of maybe some flare ups from the IVs and sucH) then it's worth trying. Like...neurontin works well for you...and I got ZERO relief from that and a small amount of relief from Lyrica. This condition sure does a number on us and it really stinks that part of the reason it's not well understood is because we all react so differently to things. What works for one doesn't work for all...and it's discouraging. All that to say...there's no bubble to burst and I appreciate that you always share your experiences honestly. I learned pretty early on not to get my hopes up looking for a miracle cure all...but to still keep my hopes alive that maybe the NEXT thing will bring me some relief. :)

CRPSbe 08-16-2017 04:23 AM

Quote:

Originally Posted by catra121 (Post 1249017)
I don't expect miracles and I haven't had much luck with anything else...so it's worth a shot. That's the thing with CRPS...there's not treatment that works 100% with any of us. All we can do it try the stuff we feel comfortable with and hope for the best. For me...if the treatment doesn't make me worse (outside of maybe some flare ups from the IVs and sucH) then it's worth trying. Like...neurontin works well for you...and I got ZERO relief from that and a small amount of relief from Lyrica. This condition sure does a number on us and it really stinks that part of the reason it's not well understood is because we all react so differently to things. What works for one doesn't work for all...and it's discouraging. All that to say...there's no bubble to burst and I appreciate that you always share your experiences honestly. I learned pretty early on not to get my hopes up looking for a miracle cure all...but to still keep my hopes alive that maybe the NEXT thing will bring me some relief. :)

Very true!

I hope it all works out for you! :D

ShaggyChic_1201 09-20-2017 03:01 PM

Any relief yet?
 
Quote:

Originally Posted by catra121 (Post 1249017)
I don't expect miracles and I haven't had much luck with anything else...so it's worth a shot. That's the thing with CRPS...there's not treatment that works 100% with any of us. All we can do it try the stuff we feel comfortable with and hope for the best. For me...if the treatment doesn't make me worse (outside of maybe some flare ups from the IVs and sucH) then it's worth trying. Like...neurontin works well for you...and I got ZERO relief from that and a small amount of relief from Lyrica. This condition sure does a number on us and it really stinks that part of the reason it's not well understood is because we all react so differently to things. What works for one doesn't work for all...and it's discouraging. All that to say...there's no bubble to burst and I appreciate that you always share your experiences honestly. I learned pretty early on not to get my hopes up looking for a miracle cure all...but to still keep my hopes alive that maybe the NEXT thing will bring me some relief. :)

Hoping you've found some measure of relief :hug:


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