Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-15-2012, 08:12 PM #1
dolphins#1 dolphins#1 is offline
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Arrow rsd

God blees ALL you fellow suffers' I too have rsd. Been fighting it since 2004.

Everyone say's to accept it ,and I will be better off. I refuse to believe that I will have to live like this the rest of my life. Is it as horrible for you, like it is for me? I never seem to get any better. The pain never stops!!!!!

Even with my SCS and ALLLLLLLLLLL the drugs they give, I am still in sooooooo much pain.

Is it the same for you guys too?
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Old 05-16-2012, 12:02 AM #2
Imahotep Imahotep is offline
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It will get better when you learn your triggers and can avoid them. You need to learn not to think about the pain. It helps tremendously when you get on the right cocktail of medications. Hang in there because it will take time. Learn to do things with your time and try to be useful. There is life with RSD and you can find it.

Each case is different. With me pain doesn't seem to be as big a problem as the fear of the pain. It is knowing that there's probably no way out. I think everyone here understands pain and know how you're suffering. I can't type what IO can't see.

Accepting it was a big part of dealing with it for me and it took years. At first I minimized it and then I denied it. It's just a little easier to ignore the pain when you accept the condition. This doresn't mean to agree with it or accept that it can't go away. You need to fight it to have control.
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Old 05-16-2012, 12:06 AM #3
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I still plan to beat this disease though I know the odds are against me.

Right now I'm trying a new thing; avoiding triggers altogether. Of course I've been doing this all along but now rather than maximizing how much I do it's trying to be siure not to overdo it. This means more exercise, which is controllable, and less work. It means a lot more effort to eat right and stay comfortable. It means getting plenty of sleep.
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Old 05-16-2012, 07:34 AM #4
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Quote:
Originally Posted by dolphins#1 View Post
God blees ALL you fellow suffers' I too have rsd. Been fighting it since 2004.

Everyone say's to accept it ,and I will be better off. I refuse to believe that I will have to live like this the rest of my life. Is it as horrible for you, like it is for me? I never seem to get any better. The pain never stops!!!!!

Even with my SCS and ALLLLLLLLLLL the drugs they give, I am still in sooooooo much pain.

Is it the same for you guys too?
I know what you mean about the pain. Last year I spent most of the year at a constant pain level of 9-10 and experienced spread to my upper body. It was a horrible year for me. I had to experiment with a lot of different treatments and went through a lot of physical therapy just to get moving again and out of a wheelchair and to wear normal clothes and finally be in good enough condition to go back to work despite the pain.

I understand to a degree the concept of accepting that you have RSD and feeling better about it only I would make clear that I accept that I have it and that I have to live with it...but I never stop fighting for a better life and the hope is still alive that remission is possible. I recently started treating with tDCS and it has worked miracles. I can only hope that this will be my path towards remission...but at the very least it has been a path towards a much better life. I've only been doing it 2.5 months now but have seen more improvement in the pain than I have with any other treatment with the bonus that I am also sleeping better. Everyone is different...but for me this treatment has been a miracle.

So I guess what I am saying is that you are right that you need to keep fighting and hoping for a better life without pain...but in the mean time I think you do need to accept and deal with the present as well. What helped me push through the pain and regain the function prior to tDCS was my complete focus on my health and on getting back a life as close to normal as possible...I wanted to be a functioning person again. That focus really helped me push through pain that otherwise would have left me curled up in a ball in the corner. My boyfriend says I was stubborn (in a good way)...and kept fighting just because I was too stubborn to let RSD take me down. He's probably right of course...but if I had been stubborn with the wrong focus then it really wouldn't have done me any good. Stay focused on your health, both on what you need to do RIGHT NOW to make your life as good as possible and on the continued search for a better treatment/remission.

Take care. I'm glad you have found NeuroTalk. There are so many great people here and it really does help (me at least) to have people to talk to who really know and understand how much pain we deal with on a daily basis.
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