Awww, Jerie, I know your pain! And neurological disorders.

I skip lots of visits too. Not worth whatever they are going to tell me. I skip being seen for broken bones and lacerations - I know there is no help for me. It's hard to suffer like that. When they ask me why I didn't come to them for a broken bone, I tell them casting it would have made me flare and walking on broken bones hurts less than RSD flares - they don't have anything to say then. I have never tried an ER for anything RSD related, I'm typically a "late to seek care" kind of person and my pain tolerance is crazy high so I wait it out if I can and avoid being seen at all. Just because my pain tolerance is high, doesn't mean I'm not in pain all the time though. It's tough to deal with it and I get the answer often, "maybe we'll know more in 10 years". I've been hearing that answer for almost 10 now and they don't know anything new from what I can tell. Care is still not very good, but at least most people have heard of it now!