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 08-09-2017, 12:54 PM #11
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I'm praying this will help you find some pain relief Catra! Hugs.
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Old 08-09-2017, 06:40 PM #12
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Hi Catra! So very excited for you. I will keep you in my thoughts and prayers that your treatment will be successful.
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Old 08-10-2017, 08:16 AM #13
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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!!!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-14-2017, 10:56 PM #14
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Quote:
Originally Posted by CRPSbe View Post
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.
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Old 08-16-2017, 04:23 AM #15
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Quote:
Originally Posted by catra121 View Post
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!
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 09-20-2017, 03:01 PM #16
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Quote:
Originally Posted by catra121 View Post
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
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