Good for you...definitely don't give up. I hope you are able to get some sort of relief soon because physical therapy is so important...but if the pain isn't being well managed then there's not a whole lot you can do until it is. I'm so sorry. You're lucky (if lucky is the right word) that the medical is still open...I know here in IL it would be EXTREMELY rare for there to be a settlement with open medical because (as my attorney told me and I have read online) there really wouldn't be any benefit to the insurance company settling if the medical is not closed...they just want it over and done with without there being an open checkbook for future medical...especially in an RSD case. But as you know...open medical isn't all it's cracked up to be with the constant stalling and fighting...which is actually detrimental to someone with RSD. I'm so sorry...SO sorry...for what you are having to go through.

I constantly remind myself how lucky I am with my RSD. Yes...it spread to my entire upper body which really sucks...but at least we knew right away (or at least I knew right away and the doctors finally caught up to me) that it was RSD so I didn't have to go through the delays, immobilization, icing etc in the spread areas like I did with my ankle when I first got that. I just made myself keep moving my hands and arms despite the pain and so far have been able to keep the majority of the function (though flares and swelling sometimes leave me completely useless). As bad as things can seem to be...there is always someone out there dealing with worse (lots of someones really) and I just keep reminding myself that I really am lucky.

Seems like you have an amazing attitude despite all that you have to deal with. Just keep fighting to get the very best medical care you can. Take care and good luck.

Well, mine started immediately, partial diagnosis 2 months later, official diagnosis at the 6 month date, and that was before settlement and I basically had control over treatments. Is why I had mass physical therapies, medications being tried, nerve blocks, my sympathectomy... My worse days - I honestly have these and then wish I literally didn't have my right arm any more, JUST to stop the pain. My former therapists always asked me how I could endure and be so "bright, chipper" etc., at my visits, and I told them it wasn't easy but I had to or I would lose my mind from the incessant pain.

Sorry all I seem to be doing is venting, kind of nice to be able to for a while and hopefully "cleanse my system" of this need...

Venting is good and necessary...keeping it inside just leads to badness. You have to try to stay positive and keep yourself from tail spinning down into depression but at the same time it's important to let out all the bad thoughts and feelings because if you keep them inside they will build up and depression is exactly where you will find yourself.

My boyfriend laughs at me and says I'm just too stubborn to get depressed...lol...and it's partially true. But he knows how much it hurts...he and his family and my family...they can all see it in my eyes despite the brave face I put on. But doctors and people who don't know me very well often think the pain can't possible be that bad if I can still smile and laugh. Shows what they know...but I have tried to not let that upset me. If someone makes a stupid comment I just look them calmly in the face and explain the way things are and that usually quiets them down. People can think what they want to think and there's nothing I can do about it except try to educate them about RSD and what it is like. If they choose to stay ignorant then I just feel sorry for them...wouldn't ever want to be one of THOSE people...they should all be pitied because it is just a sad way to live.

True... I never understood the pain people go through daily like cancer people until this. I never even heard of RSD, CRPS or my Causalgia and Stage II until mid-2010, and then even today right now I am still learning more and more about it.

Like others have said, I would not wish this on anyone at all, and I am glad I get to endure it rather than so many others.Just difficult when I can't literally *talk* to anyone about it. People know I have it and endure great pain but choose to ignore it and me :)

I also try to smile and make my voice and face show as little of the pain I endure, which can be detrimental to me in the long run I read. I just don't like really asking for help or showing my pain as much as possible.

Glad there are others here though with success, remission, pain management, and great things to look forward to (like going back to work) that can give me some hope for something in my eventual future besides daily enduring :)

Finding NeuroTalk shortly after my diagnosis is one of the things that has helped me keep my spirits up throughout the past couple years. I've learned so many things from everyone on here, been given so much hope by the success of others, people have been there for me when I was having hard times, and just having the opportunity to vent and tell people about the things that were frustrating me really has helped me to refocus when I felt down and set myself up to fight the next battle. This past year especially has been quite the challenge for me but somehow I have made it through and I feel like if even one thing I post helps even one person out there then I am doing my part to help give back to the community where I have received so much support and help when I needed it most. I am so inspired by many of the people on here...I'm still fairly early in the life long journey that is RSD...but there are people on here who have had RSD for 10, 15, 30, 40+ years and somehow they have made it through. Hearing their stories gives me strength to keep fighting.

Well i got good news, little at least... I will be seen by a pain specialist next week (good!) but they have very little experience treating RSD or CRPS Type II patients, but that right now makes no never mind to me, as long as they are willing to HELP!

Yay! I will keep my fingers crossed that this works out for you. I hope that this new doctor is compassionate and is someone who will work with you to help you achieve your goals.

thanks, been calling a lot of doctors, and been consulting with my former QRC also for leads for 7 months now. Am hoping... Another day of little sleep, lots of pain (no spasms yet) so at this point am hoping because I have only 1 guaranteed way of pain free time, and I dislike getting drunk daily. :)

Also, here is a quote i found:

Patients may require immediate and adequate pain relief. In some cases it may take time to transpire from the time of the patients first visit to the time of adequate treatment. In all probability, the pain and degenerative cycle would progress. Since the abuse potential is minimal when narcotics are used for severe pain, practitioners should not withhold narcotic treatment, if the patient demonstrates pain relief with this medication. For a free video on the use of opioids to treat RSD / CRPS.

So why are doctors so unwilling to help?