Adalaide,
So very sorry to hear about your long years of suffering & wish you did
not need to find us here. But WELCOME! This forum is just wonderful
for help, peer advice, support, venting & UNDERSTANDING!

I was pretty lucky to get dx'd. in about 5 wks. but my RSD/CRPS started out
visually dramatic. I haven't had a remission but I do get relief from nerve
blocks, meds etc.

To start off, read all you can but please try not to dwell on worst case scenarios. I don't know what part of the world/country you're in but there's
a great website RSDHope.org. There's so much good info. there.
A good pain management Dr. & physical therapist can provide many options to help so don't give up hope just because it's been 5 yrs.
Again I don't know where you're located but many of us have been lucky to
find P.M. Dr.'s knowledgable about RSD/CRPS.
Also there's a video I like on youtube (it's very long) by Dr. Pradeep Chopra.
He is giving a seminar about RSD and it's worth it even if you can only watch small segments at a time.
Try to hang in there and we're here for you!

HI Adalaide,
WELOCOME to our group, as Az-Di said the people on here are just wonderful & Amazing people who are all more than willing to help weather its with info or support we all know what its like since we all have this demon. I myself have Generalized RSD (full body) June will be 10yrs for me I know all to well of the frustrations & bulls*** from doctors saying it's all in your head NO ITS NOT & your NOT crazy They ARE for not listening to you! I myself went 4yrs before I was finally diagnosed @ the RSD Foundation in Tampa Fla. At least now you have answers even tho it's not the greatest answer its at least a start. We all know exactly what your going thru since we have all been there & deal with it every day as well. I agree w/Az-Di also about doing research, learn as much as you can about it & feel free to ask questions on here everyone is really amazing honestly weather it's helping eachother out with info or just listening when one of us is haivng a bad day/week so you have @ least that as a positive I am sorry you have this demon (rsd) but if there is anything I can do, questions I can answer etc plz let me know take care & again welcome to our wonderful group!

Hi Adalaide, ditto to everything said by AzDi and Heidi. My surgeon didn't even explan what was happening to me. I had to figure it out for myself. My physical therapists are the reason I am able to walk today. Move the affected extremity as much as you can. Get into a pool too. I wish you wellness ~Lottie

Thanks. (I'm a Heidi too! It's such a great name. ) It's really helpful to know that I'm not alone. I have a super amazing husband, but my network of friends has dwindled to near nothing because of my inability to go out and do things like I used to.

I'm in Utah, so I'm not off in some no man's land. To the best of my knowledge I've been referred to a good doctor, but I don't have a high opinion of doctors. After it taking more than 30 years for a celiac diagnosis and now this, I never expect more than functional stupidity from doctors. It helps keep me from being disappointed and once in a great while I get to be pleasantly surprised.