good morning Llynnyia
 

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:grouphug::hug:

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.

:Wave-Hello:

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.

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:(.

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:hug:

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!:grouphug:

New to this.
 

Hello all.

I think that I actually joined this forum about a year ago but I've neglected to actually keep up on it.

I was involved in a hit and run 4 years ago and I was the one that got hit. I was on a motorcycle. Tore the **** outta my right calf. Blood, muscle tissue, and fatty tissues were all over my bike. Somehow managed to get the bike off me and made it to the closest house to call for help.

I've had RSD in my right calf for about 4 years now. I'm somewhere in between stage 2 and 3 (I lose motor control sometimes but not all the time, mostly at the end of the day). I use a cane when I need to but I'll muster through it because every time I use that damn stick I feel like I've let it win. I don't let it control me. Not saying that I run a mile every morning but I work a lot and I try to keep my mind busy. I have a couple of really good friends that actually look out for me.

Just recently I just gave into getting the handicap tag. I didn't want it one bit, but my friends finally talked me into it. I hate the staring. It's like "Yeah I *******have one, I actually need it, so **** ***

As far as the "Treatments" I've only really done a few blocks and different medications, Which I have signed off on both of those because of the kind of work that I do. (I'm a master luthier, so in other words I build guitars from scratch. I work at two custom shops and I teach others how to build.) there's a lot of woodworking involved with a lot of sharp tools, which is why i signed off on the meds. I don't need to be operating a band saw that could take my hand or even a few fingers because I took cymbalta or lyrica. so yeah **** that ****. But I do smoke weed, not all the time. Kind of a end of day thing as well.

What am I doing here? Well....I've decided that I need to talk to others that have this curse. Hopefully make a few friends. I have some pretty awesome friends but they don't have this. And I can't expect them to understand. And to be completely honest. I'm tired of having to explain it over and over again....

I like that to think that I'm a pretty cool dude. Like I said before I work in two guitar custom shops and I play in a band (bass). For the most part I'm pretty easy going. I've been told I'm big teddy bear (I'm 6'6" and kinda fat, so yeah I'm a teddy bear lol!)

Well that's my story, I'm going actually make an effort to be involved in this forum. I wish you all a good day.

OUCHY I am sorry to hear about the hit and run, did they ever find the other vehicle?

Explaining again and again is the worst, I kinda blew up at my irl friends the last time I saw them about the you can do it bs they shove at me.

I am glad you can keep working at a job you obviously love. I wish you could have some pain relief in the mean time though, have you tried lidoderm patches they never supposed to hit the bloodstream so no cognitive effects.