Dear Janet -

I too am glad that you have finally found us. You are tenderly embraced into our community. And has been said, we're all here to help.

And as to your question on the difference between RSD and CRPS, while for most people, they are the same thing, you might want to check out "What is CRPS?" http://www.rsds.org/2/what_is_rsd_crps/index.html

hope4thebest just mentioned the RSDSA website, which is where I got the page I just mentioned. It's homepage is at http://www.rsds.org/index2.html and there's much on there to look at. Better yet, drop an email to their patient representative at patient.representative@rsds.org Explain your situation and where you live. Within hours an email will go out to thousands of people across the country, asking if they know of good pain doctors in your area. I would also specify insurance you've got and the problems you have had with it. No guarantees, but they might have some ideas for you as well. (The guy who runs the show is an MSW and very creative.)

Given the brittleness of your bones, I'm surprised that no one has raised the possibility of infusions of drugs in the pamidromate class with you, specifically something called Zometa, where not only is it of considerable assistance with RSD in many people, but it was developed specifically to prevent the loss of bone tissue in patients with mutiple myeloma (bone cancer). The point of suggesting it to you is that while your insurance probably wouldn't cover it for RSD/CRPS, it would be much more likely to pick it up in light of your severe bone loss. Here's an article on the use of pamidromates for CRPS in general, again from the RSDSA website: "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Med. 2004; 5: 276-280, free full text at http://www.rsds.org/2/library/articl...e_Robinson.pdf For more of the pros and cons (perhaps Pamidromate vs. Zometa) you can look at the very recent posts nos. 33 & 35 on another thread in this forum at http://neurotalk.psychcentral.com/sh...d.php?p=571350

Know that you are in all of our hearts.

Mike