Hang in there.

Try to get to the nearest big city hospital's pain clinic - hopefully one that is associated with a good university - ASAP. Traveling can become really uncomfortable as RSD progresses, so try to do it now. And it might take some time to get in - some of these places have a long wait to see the better docs.

I believe that I suffered a lot of harm by staying in RI for as long as I did after my probable diagnosis of RSD. After my 2nd rotator cuff repair surgery, I was exhibiting signs of RSD and my ortho's PT team never picked it up (they told me ice was "my friend" - I used to sleep with it on my shoulder because I was on fire!!). Then the RI pain manangement doc I to which was referred never performed any blocks; rather, he injected my cervical spine and the back of my head with TP injections full of steroids. My RSD spread from my shoulder to all of the injected areas within a month or two of the injections. I just didn't know any better, and relied on the docs in this teeny, tiny state to help me. And I will always suffer because of it. It was 6 months after the date of my probable diagnosis, Christmas Eve, before I found a great team of docs in Boston and had my first nerve block.

The RSDSA.org website has a lot of great info - I am almost certain it provides a database where you can find pain management docs and/or anesthesiologists by state.

And not for nothing, but if WE can do your research, why can't our doctors and PT's? I thought for a long time that perhaps I would sue my RI docs for hurting me so badly and causing this to happen to me. But in reality, that is easier said than done!

@ Sandy,

Yes! I hear you! WHY can't they find this information? Why? I know they are busy but they agreed to take me on. IMO they need the education and need to KNOW HOW to treat me. I am going to do everything I can to TEACH THEM. For me it would be 8 hours of travel to the closest RSD specialist. I am sorry. I didn't ask for this, I can't help they never had to treat someone with RSD, but now they do. They took an oath when they became doctors, and damn it they are going to live up to it!

I managed to get into contact with an "RSD coach" an advocate that has called me herself and has helped me greatly! With her help I am going to get these doctors updated and on the right track. This RSD coach has been a wealth of information and has the latest treatments and latest news. Just when I thought I was really going to lose my mind, the Lord sent me her!!

I am not giving up. I have a meeting with my doctors on Wednesday and they will listen or I will get an attorney. That is all there is to it. I have a lot of years to live on this planet and I am not going to allow anyone to make this worse, screw it up, or do anything to get in the way of progression towards remission. They will get on this bus with me, they HAVE to, they agreed to treat it.

They can hardly turn me away, seeing how they have already made a few mistakes, some pretty serious. Like the surgery they put me through, and the cast I was made to wear for 8 weeks. I fractured my eye socket due to the cast I should of never been in. I fell on the crutches. Now my vision is screwed up.


OH they will get on board, and learn about RSD and do what they are suppose to do, TREAT ME! I am angry now. It's been 9 months of this and that, and suffering! Not any more. They gave me hope, they told me they could fix this, one said I would be in remission by spring, now he has to do everything he can to live up to what he said to me. I WILL hold him to that, and he will have to learn HOW to treat it and what to do with lil ol me. I have the same rights as anyone else in this town that could of been struck with it, or may be struck with it in the future. Rinky dink po dunk lil country town or not!!

*steps off soap box*

I'll take it to the media if I have to.

I know I may never go into remission, and I know this may be a very long road, I know what the reality is. I just want these Doctors that have agreed to treat me, TREAT me and do it with all the information I have, and be on top of it, and not do things that might make this worse. I should be able to expect at least that! ANYONE who has RSD should!! It is not a NEW thing to the medical field!! It is something EVERY doctor should know about and at the very least know how to recognize! EVERY Pain specialists Should all be up to date on it!

I am also snding a letter to every single doctor that misdignossed me, telling them what it is that I actually do have and sending a packet of information on RSD. Along with the information on what they did to me and how badly it effected my RSD and caused it to spread as well as progress. I will not sue them but I plan on CC my lawyer with each letter. I will take great joy in telling the one doctor that I was not a med seeker and will point out the classic symptoms of RSD and how they ignored me. I will leave my foot prints. Maybe , just maybe they will think the next time someone presents with RSD!!

Dear Stardust,

I wrote a lot of letters after I finally got to Boston and got the right treatment, too - it was good therapy, I think. I wrote to my surgeon (who performed 2 rotator cuff repairs), his physical therapists who never believed in my pain (they thought I was drug seeking), and the PM doctor who messed me up so badly.

I am glad you found an RSD advocate - how awesome! We all need someone who believes in us and our pain and can help us make the right decisions at the right time. You deserve it after what you have been through!! Good luck.

Please take care and feel free to vent on this forum as often as you like. That's what it (and we) are here for.

Please take care, XOXOX Sandy

When I first developed RSD symptoms in my right foot-it burned soooo bad and I was not diagnosed. I would come home from work and be crying from the burning pain. My husband would get my foot spa and put in ice water-thinking he was helping me-We didnt know better at the time- I screamed even in COOL water and got worse and worse. i can truely relate to the pain that this type of treatment caused you and I am begging you to not do ice therapy -IT MAKES IT WORSE!!!!

Stardustkid, It just broke my heart to read what happened to you in PT. I hope things went better for you. Youshould try making your first rule if it doesnt feel right to you dont do it. I have a couple bad PT stories. ANd thats what I finally did. I had to learn to say stop or No! Frankly I dont think most of them even have a clue what to do with us. They are shooting in the dark. We have to train them. I hope your feeling better. I cant imagine living with this monster going to PT with no pain meds. Your a tough cookie!

I feel so fortunate to be reading this post right now! I have only been to one PT session several months ago, but am scheduled to start aggressive PT again next week for RSD in both feet. I am also scheduled for my first nerve block. I am nervous and cautious about not only the procedure, but about the PT as well. I will be VERY candid with my therapist ahead of time, and make sure that they are FULLY AWARE that I am not willing to do the extreme heat/cold bs that has put you all in so much pain. I can understand warm/cool to a degree, as when my feet get so tight and swollen cool compresses or packs DO give me relief, and when I feel cold all of the time very hot baths feel wonderful. However, I can't fathom extreme cold temperatures being of any benefit to any of us. Thank you again for this wonderful thread. I am so glad to have found this site and all of you. I have been so lost on this damn internet looking for some sort of hope.

These physical therapists discussing it seem to think it can make things worse in some instances and better in other instances:
http://www.rehabedge.com/cgi-bin/ult...4;t=000052;p=1