I'm SO sorry to hear that you are in so much pain right now, MomInPain! I really wish I could do or say something to help you but I know that I can't unfortunately!

Please know that I am here for you though and that I DO understand what you are going through!!! I am in a pain flare right now also so I understand and feel your pain. I have actually had to take my Ketamine 4 days in a row now which isn't like me at all as I really hate taking it and don't like the side-effects but it is the only med that offers me at least some relief - and even then it isn't enough. My RSD didn't spread as quickly as yours (it spread from my foot to knee within a matter of days I would say and about 3 and a half months later, it spread to my right arm and now possibly my left) but I have been getting a lot of additional symptoms lately. If you ever need to PM me, please feel free to do so - I am here for you anytime you need to talk!!

I know it is hard but please try and move the affected limbs as much as possible as that is probably the best thing you could do right now to dry and improve circulation etc. I have such a hard time doing PT and spend hours crying afterwards but I KNOW it is really important that I try and move my RSD limbs as much as possible so that hopefully, it doesn't make things any worse. My PT's always say that I am in pain whether I am sat doing nothing or doing something so I may as well try and do something and it took me a while to realise that but I think I am finally getting the hang of it now - even though it is still extremely painful!!!!!! I have some exercises that I was given by my PT's on the Intense PT Program so if you would like me to send them to you, please let me know as I am happy to do so!!!

I certainly understand what you are saying about the ER Doctor not knowing about RSD and unfortunately, many others do also!!! NON of the ER doctors round here know what RSD is and it is extremely frustrating having to keep repeating things to them. When I am going to the ER now, I always take a Booklet/leaflet about RSD and make sure they read it and I also try and make my PM Doctor come and see me if at all possible. I am usually lucky as my PM Doctor can usually see me within a day or so but if the pain is really bad, I have no choice whatsoever but to go to the ER.

I am thinking about you and please know that you are not alone as I DO understand what you are going through. If you ever want to talk to someone, please know that I am here for you. Please keep us updated when you can and i'm sending many pain-free hugs real soon - try not to worry too much, I KNOW it is really hard but it's important that you try not to stress as that is only going to worsen your symptoms!