Yep, as the others have already said, none of us are "ok" with this constant pain. We just each learn how to deal with it and how to keep going. I am currently seeing a counselor, which helps greatly to talk to someone other than my husband, family or friends. My husband is incredibly supportive, helpful and empathetic (I am very lucky in that respect), but he can only help me to a point.

I have been suffering with this for 21 years now. I was 25 when first diagnosed and now it has spread quite a bit. The good thing now vs. 21 years ago is that there is more information out there about it and there is support.

I am struggling with this myself, more lately since new spreads. But I find comfort in the fact that I am not alone in this journey and there is support here and at home for me.

All the best,
Nanc

hi,yes the pain is hard to deal with as is life.In my case after just been diagnosed after 31months; i'm now going to change my life back around.I'd already stopped all my medication as it was not working but also it was just as bad for me mentally.I haven't worked since my accident,driven a car and pretty much been a prisoner in my own home.Friends seem to lose interest as you can't go out and do what you used to and it's not the same when you do being restricted to what you can do.I feel upset when I see you all suffering and it's us who only know what it's like.I think it's just as painful people not understanding what we're going through,"oh,you're not better yet,why don't you get your leg cut off"people joke but is that funny???
Well you're not alone and I think the people on this site generally care,I know I do.When you get down think it could be worse,you could not be here,the pain shows at least we're alive!
Bon-courage a tout,Anthony John the English in France

Fighting to find good information and put it out on this and other forums to help all of you but more importantly fighting to find the un/misdaigosed sufferers out there who have no one.
For the last 2 years I have been constantly amazed and disappointed by how many of my fellow sufferers are willing to help people who wander on to these forums but won't lift a finger to go that extra mile and help anybody outside the forum.

But how would I do that?
I am basically home most of the time. I do not drive that much and i live in a small town. When I do find someone who is suffering and/or unsure about the future and RSD I try to help as best as I can. If you could help me reach out to others I would be glad to offer support.

See my Worldwide Awareness Campaign post

Thanks, I'll check it out.

I was diagnosed a little over two years ago. For a long time, and even some bad days now, I find living with this hard to accept. I played sports for many years growing up, so I was used to the injurys that just got better or were fixed with a simple surgery. There was always an answer and a quick fix. Then, I got injured and there weren't any answers. There weren't any quick fixes for the pain. And it was the first time I heard the word "permanent" from a doctor. How do you accept that? How do you come to terms with something you may live with the rest of your life when you are only in your 20's? The rest of your life is a long time. It took over a year for me to accept this, and come to terms with it. And I still have days where I break down and say "Why me?". But, the next day I get up and say "I am NOT going to let this control me". It isn't easy. It is a struggle every single day. But, I find support through my friends, and my family, and all of the wonderful people here that struggle everyday as well. It doesn't mean you are weak because you have bad days or have a hard time with the pain and what that does to your life, it means you are human. We all find ways to accept things. We find ways to grieve and let go. The best thing I can recommend to you is find a support system. And know that it is OK to cry, or scream, or do whatever you need to do to let out the frustration. And then move on to the next day and tell yourself it will be better than yesterday.

I don't think any of us really gets over or past the greiving process, the worst for me is when my grandson comes round, he was 2 Monday. I have never picked him up or held him, I know I.ll never roll on the floor and play with him, teach him to swim or take him to disneyland, have special days out just me and him as I did with my Grandaughters.
Sometimes when his mom is playing on the floor with him or my wife is chasing him around I have to go to the back door for a smoke or I will breakdown in tears.