Hi I'm new
 

Hi
My name is Shannon I am 40 years old and three years ago I got RSD it started in my Right arm and shoulder and back and now after having a scs implanted I have it in my left leg. The pain and burning is so bad I am in bed more then not I get up walk around the house many times then back to bed my options are now a pain pump or ketamine coma everything else they have tried has just made my rsd worse!! I try to keep my sense of humor its the only way to get through this and am so happy my mom who takes care of me everyday found this site for me:)

Hi Shannon and other members, Im new also.

Im Jo and turn 38 next week. I am a single mum to a lovely 8yo boy, Harry.

I have no lower right arm (since birth) and use a prothesis - this has never caused me any real problems more the odd challenge. In June, as a single mum, Harry & I emigrated to New Zealand, all was great until Dec 2007. I had an accident and splattered the brachial plexus nerve in my left 'good' shoulder and arm. The pain, over the days, became unberable - after many doctors visits and later specialist visits I was diagnosed with CRPS in my left arm and shoulder. Then in Dec 08 I kept getting pains like a hot poker shoot up my left foot and leg, and also I would get a pain behind my eye like no pain I have experienced before. My specialist told me my CRPS had spread, I was so gutted .

A few months later I felt that familiar burning, stabbing and hot poker pain come in my right side but at a slightly less intensity than on my left, and it hurt to use my prothesis. I saw my spec again and got refered to another spec that specialised in anaesthetics and he confirmed that the CRPS had spread throughout my whole body - I couldnt believe it.

I have been on so many pain meds. Most made me feel like a zombee and some, like the gabbapentin, put weight on that I didnt want which also didnt help with the pain especially on my leg joints and back. Now I am on Oxycontin 4x day plus antidepressants and meds to help me sleep as pain is not condusive to good sleep. My only possible option is the ketamine coma but it isnt recognised in this country and I dont have the funding to go abroad to do it and it scares me to be in a coma for days, but the CRPS and what I read about it scares me even more.

At the risk of whingeing, I then find if I do get any decent sleep then the morning is hell because my body is locked up. Harry comes and sits on my bed for a cuddle and I have to tell him to get off because it hurts like hell where he makes the matress squidge down where he sits on it, and if he cuddles me Im like 'be careful' and it then breaks my heart when he goes have you had your pills mummy? they wont work unless you take them - he shouldnt have to worry about things like that at 8.

My saviour are horses. I love horses. I love their smell and the softness of their touch. I used to get frustrated when Id see people brush them like a tickle, thinking horses like a good decent brush, now Im like one of those people that frustrated me, so now rather than hold a brush I just stroke the horse. I guess it is good therapy and I am learning to focusing my mind to try and bypass the pain but my it is not easy.

My horse Drago, was a huge part in my rehabilitation along with my good friend. It is great to ride as when my back locks up the gentle moving of the horse makes my back and body 'give in' as it is hard to fight half a ton of horse.

My aim is to ride in the London 2012 Paralympics, and possibly the World Equestrian Games (WEG) in Kentucky later this year. My own horse is sadly injured (looking permanent) and I have been riding my friends horse JD, he is such an awesome dude, he takes such good care of me as he knows when I feel wobbly and if I lose a stirrup he will stop until I regain my balance. I now have the ride on a mare called Ella who is like a female JD and we are training towards London and WEG if we can do it in time. It is a long shot and training is and will be extrememly challenging with many tears, too much pain to want to think about but I have to have a focus as I feel if I stop I will just shrivel up into non existence - I have also found that having spent an Easter sitting down lots I feel worse body wide - even though I enjoyed the time with my son and great friends :)

I am very happy to have found this site as I think that there will be others in a similar situation, and having read through some posts, it is an opportunity for empathy and support - to be able to give and help others having a tough time and receive it.

So hi to you Shannon and the other members on this site, and fellow CRPS sufferers - I look forward to being part of the community.

Thanks
Jo

Hello and WELCOME !
 

So GLAD you have found this wonderful forum!
You will find MANY caring wonderful folks here....
The RSD/CRPS forum is very active.....here is the direct link to click on:

http://neurotalk.psychcentral.com/fo...aysprune=&f=21


Shannon: I am SO very sorry the SCS didn't work out for you :(
This has been the case of several wonderul people there at the RSD.....
I encourage you to introduce yourself over there and share this experience.
Many will join on your thread with support and suggestions.....

And JO: Welcome to you as well, my friend! I see you also are not a stranger to this maddening condition!

Here's a :hug: from me..... and soon you'll be getting :grouphug:'s from lots more!

I'll see you at the RSD forum, I hang out there as well!

Truly Caring
Rae
:Heart:

This is for YOU JO
 

http://dl.glitter-graphics.net/pub/9...u1x337juy8.gif


I have horses too, so we share that same love.......if you look deep into their eyes, you can actually see their soul........:hug:

Your new Friend,
Rae

Welcome to NT Shannon & Jo,

Trying to raise a family while struggling with serious medical problems is something many of us here can relate to. When I see so-called, multi-tasking "Super Moms" on TV, I think, "Big deal. Throw in RSD, MS or Parkinsons and I'll be impressed."

My problems started with a serious car accident. I try to keep my spirits up, but the one thing that does make me weep is seeing how my daughter's life has changed. I can't romp with her, I can't pick her up and it hurts when she hugs me. It's just not fair for a little kid to have to deal with so much.

On the other hand, I think she has benefitted from watching me battle against my injuries. Every teacher and coach she encounters is amazed by her maturity and her absolute refusal to give up or become frustrated. Those are skills that will serve her well in the future - no matter what adversity life may throw her way.

Cheers

Thank you everyone
You make us feel so welcome
I shall go and check out the CRPS forum. Im still finding my way round the board so I appreciate the link :)
Cheers
Jo

Welcome Shannon & Jo
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Hello to you both

I know these struggles are not easy to endure. I hope a peace comes your way and fills your day.

Please do go on with your dreams. Life keeps coming at you. Without our dreams, we're dead already.

See you around the board.