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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 03-31-2014, 08:06 AM #1
Llynnyia Llynnyia is offline
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Llynnyia Llynnyia is offline
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Originally Posted by ginnie View Post
Welcome to Neuro Talk. You will find many people here who have RSD. This awful condition happens all to often with severe injury. You have been through so very much. You remain brave. I am glad you have someone in your life who cares. That does make anything we have to deal with better.

Ask your doctor about Ketamine infusions. Sometimes this is used for RSD and has gotten some favorable reports about it from those who have tried it. It was first used on our Military for severe injury. This started the research going. Others on this site may be able to help you too.

You found the right place to go for support and friendship. I too came here not under the best of circumstances, and just never left. Many good people helped me through my own ordeal. Be good to yourself, and find reason each day for some joy in it. ginnie
Thank you , Right now I feel so lost I had fought so long for a diagnosis it feels weird to know why. I feel as if I should be saying what now or like the diagnosis would bring a possible cure, then I find out rsd has no cure but sometimes mysteriously goes away.
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ginnie (04-02-2014)
Old 03-31-2014, 08:41 AM #2
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Welcome. I'm sorry you have this monster RSD. This is a great group to be a part of.
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Old 03-31-2014, 09:11 AM #3
Llynnyia Llynnyia is offline
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Join Date: Mar 2014
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Llynnyia Llynnyia is offline
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Join Date: Mar 2014
Location: California
Posts: 77
10 yr Member
Default
Quote:
Originally Posted by ginnie View Post
Welcome to Neuro Talk. You will find many people here who have RSD. This awful condition happens all to often with severe injury. You have been through so very much. You remain brave. I am glad you have someone in your life who cares. That does make anything we have to deal with better.

Ask your doctor about Ketamine infusions. Sometimes this is used for RSD and has gotten some favorable reports about it from those who have tried it. It was first used on our Military for severe injury. This started the research going. Others on this site may be able to help you too.

You found the right place to go for support and friendship. I too came here not under the best of circumstances, and just never left. Many good people helped me through my own ordeal. Be good to yourself, and find reason each day for some joy in it. ginnie
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Originally Posted by fbodgrl View Post


Welcome. I'm sorry you have this monster RSD. This is a great group to be a part of.
Thank you. It really does feel like a monster some days like today/ last night no sleep because pain lv and no reason for this flare up.
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Old 04-01-2014, 11:12 PM #4
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Hi Llynnyia,
So sorry to hear about your ordeal & all you went thru but glad you found us here. I myself went through many doctors & 4years of no answers until I moved back to fla from WI & went to the RSD Foundation in Tampa, in all it's been just under 10 years for me & I only a year ago found a doctor that I am happy with, who listens & knows about RSD which is important. I hope things continue to look up for you & you have a pain free or managable day
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GENERALIZED RSD/CRPS stage II/III (entire body
.
) since 2004
HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift>
ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY
.
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ginnie (04-02-2014)
Old 04-02-2014, 04:09 AM #5
Llynnyia Llynnyia is offline
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Llynnyia Llynnyia is offline
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Hi Llynnyia,
So sorry to hear about your ordeal & all you went thru but glad you found us here. I myself went through many doctors & 4years of no answers until I moved back to fla from WI & went to the RSD Foundation in Tampa, in all it's been just under 10 years for me & I only a year ago found a doctor that I am happy with, who listens & knows about RSD which is important. I hope things continue to look up for you & you have a pain free or managable day
I feel like a bit of a whinner when i compare myself to some of you, your conditions have spread so far and it is so crippling. I feel bad for talking about my one leg, hip and lower back, when some of the members here have it in thier entire body.
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Old 04-02-2014, 08:47 AM #6
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Default Hi Llynnyia
Hi Llynnyia, all pain is awful. Never feel bad with expressing yours. This is what the site is for. We come together with many different hurts. We find some emotional healing and friends to talk to. The RSD place in Tampa has a good reputation. Maybe you could visit Tampa, and see if there is some additional help for you. ginnie
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Old 04-03-2014, 12:47 AM #7
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Oh hun dont feel bad for telling us & sharing about your pain, we all hurt & your hurt is just as bad as mine or someone else's hurt so please dont feel bad we are here for support as we understand completly what your going thru. I hope you & everyone is having a beautiful day!
__________________
~HEIDI~
GENERALIZED RSD/CRPS stage II/III (entire body
.
) since 2004
HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift>
ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY
.
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"Thanks for this!" says:
ginnie (04-03-2014)
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