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 09-27-2013, 11:36 PM #2
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Angelina55 Angelina55 is offline
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Join Date: Feb 2013
Location: Post Falls, ID
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Angelina55 Angelina55 is offline
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Angelina55's Avatar
 
Join Date: Feb 2013
Location: Post Falls, ID
Posts: 175
10 yr Member
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The thing that I try to focus on (when I can) is to find things that I can now do that I enjoy, that make me happy and not focus on what I can no longer do. Keep trying new things. Every day tell yourself something positive about yourself. And most important is to find your most comfy things. The things that are your "don't leave house without" things. I always need to remind myself that this is like a rollercoaster ride... you will have good days and bad days. Just because you have some bad days it doesn't mean that those good days are not on their way. I wish you luck on your journey.
Angelina


Quote:
Originally Posted by luna.moon View Post
I've been out most of the day, and stuck on the bus and outside (where it was raining some of the time), where the normal movements of the bus were painful.
I had some appointments today, one with a therapist, who is starting to help me come to terms with this. I'm a new diagnos-ie, so I reckon it's probably going to take a while.
I did get my meds adjusted - actually just having my Neurontin increased. It was a little amusing that I was already on it, just on not a near high enough dosage. It was good to know that my doctor was familiar with the problem, and offered what help she could.

It's frustrating to me (as well as to a lot of you, I'm sure) about how the pain varies and there is no way to guess as to what it might be. I guess the worst for me today was when it felt like my left arm felt like it was being melted off the bone. I didn't much like the mental image when it came to me, but that's what it felt like. Not quite as bad right now, we'll see what happens between now and bed.

Questions:
1) Has anyone else found Neurontin to be helpful?
2) Is there any advice on coming to terms with this disorder (asking from fellows, not professionals)?
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