That is kind of you Loretta. I am glad that you think what I wrote in that post is also of some use to you. One of the bothersome things is the sheer amount of information about CRPS on the internet that is inaccurate or has no evidence to support it. It can be really difficult to tell the conjecture and baseless assumptions from the factual information that has an evidence base behind it or even just a credible hypothesis underlying it. When incorrect information is continually repeated it sometimes takes on a life and (false) air of authority of its own.

When people in desperate positions are faced with medical professionals who don't know much, and a condition that is genuinely so poorly understood by medical science, its so easy to start looking and not necessarily to realise that there is a lot of stuff out there that isn't correct. Sometimes, I think that when desperation and pain is present, it clouds judgement and its really easy to 'want' to believe things even if you kinda know deep down that they don't stack up - I am sure we've all been there at some point! That's why i think it's so important to try and read things like the various sets of treatment guidlines, case reports and published clinical trial reports. It gives you a good grounding and its a bit easier to spot or challenge the stuff that doesn't add up, is out of date or just plain wrong. It's shocking too that the knowledge of so many doctors is out of date or inaccurate and the only way to know that or to be able to challenge their opinions or advice is to have credible information.

Somehow, for me, i feel that the more I know and understand about the up to date medical science and treatments, the more control I feel I have. A condition like CRPS robs you of the control you previously had over your body, life, relationships, career etc. Anything you can do to re-inject a sense of control back into your life and minimise the feeling that you are in a kind of helpless free-fall is a huge benefit. It's also a condition where I think the more you can feel you are 'doing' do to help yourself, the better the chance you give yourself of coping better with your physical and emotional symptoms. It's incredibly hard to do all that, I am not under any illusions and it takes time, but even the tiny positives are worth their weight in gold when you have this diagnosis.

Hi Neurochic, thanks for your response. I also like to go to reputable sites for medical information. I've just recently researched again the sympathetic nervous system, parasympathetic nervous system, vegas nerve as I've been passing out several times. Since CRPS is a disregulation of the sympathetic nervous system and no regulation of blood pressure high or low, heart rate, fast or slow, even our digestive system is affected. I've yet to go to the sites you mentioned, but will tonight or tomorrow. I've had this 16 years now-full body. I had a surgery that resulted in frozen shoulder (RSD) Wasn't diagnosed for 5 years. I'm mobile, have one crippled hand. Have gone thru about 150 physical therapy sessions or rather torture therapy. But was worth it, got the use of my shoulder arm back.
Thank you again for your thoughts and insight. loretta