Posted by Bernice on 1/29/2008, 3:32 am, in reply to "Re: RSD SUFFERER IN SOUTH AFRICA"
198.54.202.195
Hi
You may not tremember i have tried posting to you but i never had any response
I am so sorry to hear your having such a bad time Holly i went through what youre going through and what worries me is that youre having steriod injections, i found they just made things worse for me,i couldnt cope with the electronic physio as well i remember sitting there and tears running down my face, what i found helped me a lot was the occupational therapy and water therapy.I then started on NSAIDS which helped some but nothing would take the burning away, i dubbed my hand THE HAND FROM HELL,today after 5 years i have learned to go through the motions i still have my bad days but i am at least coping,in 2006 i had a stimulator but i developed an infection and it ha to be removed and good for me because at that stage i couldnt even walk anymore,i then went onto Neurontin and i became like a crazy person i lost my memory i couldnt put two sentences together, so i took myself of it and went back to Celebrex and Tramacet,i have also tried Lyrica recently but it felt like i was back onto Neurontin while i was on it,but i try and cope with the other meds
Well talk more when i have a post from you
I would like to talk to you so we can try and help others
When i was diagnosed i had no idea what was happening to me, i only found this info on the internet and one day out desperation i wrote to the the RSDHOPEwebsite and they help me get in contact with a young girl who has RSD in her legs, at that stage i felt like the only person in SOUTH AFRICA with this disease and through them another south african contacted me,we me and support each other and we have now met about 3 other ladies in our country thats also diagnosed so we want to try start a support group,because we know ther must be many others out there who are also suffering
But well talk again soon
Gentle hugs
Bernice
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