I have bodywide rsd and have like most people with this tried many things to get better. I lost a healthy tooth when rsd was inmy mouth so I know how painful it is for you. I cant seem to help the pain and my back is now crippled with my attempts to stop the pain. I took seretonin and in one night my legs and arms went from vague to Stage 3. I have had this for 17 years but its got very aggressive in the last 3 months.My BP is now 200/135 so why am I still here ? Can anyone help the British Doctors are not up woth this!

Thank you again for more postings! By the way, I mentioned before that I started on neurontin 9 days ago for the pain in my mouth and the pain that I've been having in my shoulder blades, neck and head has decreased significantly ... so maybe that pain IS related to my RSD? In my first posting I said I didn't think it was ... but now I do think so. The pain in my lower back hasn't changed since I started on the neurontin but I know that I have arthritis in the back so it probably wouldn't help that? I'll be in touch ... this is the only support group that has interacted with me on my postings ... since I'm retired ... I don't get on the computer every day but will still check in often.

Regarding having RSD in the eyes ... wow, if it took me almost 7 years to get to the bottom of my dental/gum pain ... I definitely can imagine what you must have gone through to get someone to listen to you! And if you've had RSD for 17 years, I can also imagine what you've gone through.

Just wanted to jump in and welcome you to NT and to tell you that I am very sorry for what you have gone through and are going through. I hope that you are able to find some relief soon. RSD can be anywhere in the body and it is sad that so many doctors are so misinformed about it. I need a lot of dental work and I can honestly say that I am scared to have it done because I cannot imagine having this pain in my mouth. It spread from just my ankle to my whole upper body...everything between my waist and neck including arms and hands and I do NOT want it anywhere else thank you very much. So any kind of procedure scares me...even dental ones. But I have to bite the bullet soon and just get it all taken care of.

Anyway...good for you for continuing to fight for the care you need. It's so sad that it has taken this long to find anyone who will take your issues seriously...especially if you have been diagnosed with RSD before. But so many docs are just uninformed when it comes to RSD...even some of the ones who say they have treated many patients with it.

This is a great forum and if you ever have any questions or even if you just need to vent, please feel free to post. I have learned so many things from the other members that have helped me to get better, to cope with the pain, and to learn how to function and do everyday things with my limits that I have because of the RSD. I don't know what I would do without this place. Welcome.