NeuroTalk Support Groups - New here, but not to RSD

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - New here, but not to RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/82308-rsd.html)

Quote:

Originally Posted by CRPSbe (Post 485981)

Hi,

I'm from Europe where awareness on RSD/CRPS is fairly non-existent.

I have RSD/CRPS for almost 14 years. I developed it due to a car accident where my knees hit the dash (chondromalacia patellae). It spread to my legs fully as I wasn't diagnosed for almost 3 years. There's a long history behind this that I won't bore you with, but it was *hell*.

Last year, the RSD/CRPS spread to my arms/hands spontaneously. I have no clue why.

My treatment consists of Neurontin (2700 mg/day), Buprenorphine pain patches and sublingual Buprenorphine for breakthrough pain. I am also undergoing treatment for my hands/arms, which consists of Calcitonine injections. They are able to keep things stable (so far, fingers crossed). My hands do twitch and hurt, but I'm keeping hope alive, hoping it won't progress to a further stage.

I was on this board years ago, but couldn't find my username & password (back then it was Braintalk communities), so I reregistered. Most of you won't remember me, I guess.

I am happy to be here nonetheless!

Hugs to all of you.

Hello and Welcome to this site. I have full body head to toe RSDS it also effects my lungs and heart. I am stable and stive eack day to manage my health and not allow it to manage me. I have found that PT in the water is best. You are weightless in the water the pain is so much better when doing PT in the water. I found a therapist through my Pain Mgr. doctor I did the PT with him and now I go to the YMCA twice a week and water walk as well an athritis class that helps with the joints.
Good luck and welcome aboard.
SBowling:grouphug:

Hello across the sea:D
Wow I couldn't even handle 600mg a day of neurontin but a lot of people do. I am on 13 different meds and have a SCS and now have numerous different ailments. I have only been diagnosed for 3yrs in June however it has spread to my left leg when it was the right leg (fib/tib) that I broke in 3 places and had complications, in June 2006. I can't work but I havn't convinced SSD of that so I am constantly stressed which makes things worse. Nice to meet you and hope to hear from you again soon:)
tjbird

Nice to meet you too tjbird. I hear you about the SSD, it's hard when they have doctors there (at least where I live) who don't even know what RSD is. It's like reliving those (almost) 3 years again where I wasn't diagnosed because doctor after doctor that I saw wasn't knowledgeable about RSD. RSD is a rare disease, but it's no excuse for SSD doctors not to know about it.