Originally Posted by SnowWhyte

As I try to start all my 'reply' posts with: thank you all for your helpful comments, and kind words, they provide me with more hope and encouragement than I could ever express.

Sandy,

I'd like to specifically thank you for letting me know about joining RSDSA. I've heard about them, and actually spent quite a bit of time on their website, but oddly enough, never thought to look into the "join RSDSA" portion of the site, I don't know what I was thinking! All of the points you make are what I need- I've been given much in-depth help as to finding a good doctor, but I've been really at a loss, and struggling painfully with trying to deal with explaining this "beast" to my friends and family...to the point where I haven't even told my sister yet- she has actually shunned me, for thinking this "news" I've been trying to talk to her about is just some "dramatic" episode...and it's breaking my heart not having her to talk to for support. because I know that if I try to tell her, it will only make it worse, b/c at this point, it won't sound like anything serious- to her, it will only reinforce her idea that I'm overreacting, or making a scene/being "dramatic", etc, etc... I've been searching so hard at no avail for SOMETHING that explains RSD/CRPS in a way that actually makes it sound the way it feels- sound the way it legitimately is. Even the (more current) name itself "complex regional 'pain' syndrome" has some undertones that spur judgement by some people- that it's like a headache that you're just too weak to deal with, or want to whine about, or looking for drugs for, etc (when it comes to pain, you name it, they have ways to judge you for it), but if you told someone you were dx with another incurable illness- cancer, for example, people would never dream of judging you ... idk if anyone else has experienced this...but it infuriates and deeply saddens me.

Anyway, I'm going to jump on RSDSA's site in the morning- thanks again for the tip!!!

~Colleen