I find it most interesting how Schwartzman et al now describe CRPS.

"CRPS is now generally regarded as a systemic condition that involves both central and peripheral components of the neuraxis and the interactions between the immune and nervous systems”

Additionally for those who have to combat the less informed doctors, this paper discusses "Patterns of Pain Spread"

I would like to suggest to the moderators that this tread be considered for a sticky note for everyone new and old.

MsL

That is a good idea.... anyone here can add this thread link to the Useful links and websites in the sticky above.
We do that on PN all the time.

How is that done Mrs. D?

I've searched all the tools and can't locate a button that will allow me to make this thread a sticky note.

Thanks.

MsL

Making endless stickies can clog up a forum.

Instead, just highlight the link to this thread, and past it in the existing sticky Useful Websites...you can put in a bit of explanation as you think is necessary, or you can quote part of the paper etc.

You in essence make a new post to that existing thread.

This is the link to that existing sticky:
http://neurotalk.psychcentral.com/thread247.html

Dear Ms. L -

I had missed that redefinition. Thank you.

But as a general point, the "less informed doctors" are not whom one might think. In 2006 I was totally blown off by the neuro-immunoly group in the Mayo Clinic's Department of Neurology, in my hometown of Rochester MN. None of them would see me when I was going through the Clinic on largely other issues, because they didn't reccognize CRPS as a neuro-immune condition, by which they basically meant MS. A similar result at Johns Hopkins, but with a twist: they didn't rule it out at the laboratory level, but were without means to put it into clinical practice, which I guess was fair.

On the issue of Mirror and Graded Motor Imagery Therapy - as in, where is it (?) - I got an answer from my long time neurologist today, who also does a lot of work with stroke victims. The issues are cost control and economies of scale. Basically, in almost all the studies done to date, much of the work was done by the high priced help. In order for this to work in practice, there would have to be enough work in one place to justify the training of therapists. And where the same routines could work with both stroke and CRPS patients, a tertiary medical center or "the largest hospital" in a major metropolitan area in the U.S. might be able to pull it off, as soon as the insurance companies realize that this is going to save them money in the long run. That in turn may take larger studies with more funding that's been available so far, and it's not as though this is going to be carried by the mirror and glass industry.

Who knows? Maybe we'll get lucky and get in once it's approved for the much larger group of stroke patients, on whose behalf government grants are much more likely.

Mike

True enough Mike, there are few resources dedicated to research into RSD/CRPS, it's just not a sexy disease that attracts the big bucks and star talent. This is not meant to degrade the efforts and talents of those very dedicated individuals who do study RSD/CRPS.

That being said, recently I sat in front of a doctor considered to be a world renowned expert in the field of chronic pain (at least here in Vancouver) who flat our told me that RSD does not spread. I should send a copy of this article by Schwartzman to him for his reference.

Sadly we are faced with having to live with a progressive painful condition that just doesn't have the complete understanding of modern medicine at this point in time.

Schwartzman's redefinition has caught me a bit off guard, perhaps I've been the ostrich with my head in the sand denying the inevitable but I feel a little depressed by this definition. I realize now that there is little hope to stop it in it's tracks before it takes over the rest of my body.

The good new is that many of the great minds that do dedicate their careers to this condition do continue to carry the ball forward and meet internationally to share their findings. Perhaps we will see some kind of breakthrough in our lifetime.

MsL

Hi there. And I beg to offer a different perspective. Unless I'm misreading it, the article stands for the proposition that after the 1 year mark, we may get gradually worse, but most people don't have dramatically negative changes, and may even have partial positive responses to therapies, as I did with Zometa:

. . . the majority demonstrated only moderate increases [in symptoms] with disease duration.

Chin up, please

Mike

MsL...

Do you want me to put this thread up there for you in the Useful websites sticky? I'll take care of that if you wish.

That way this thread can be found more easily and referenced.
I agree with you that it would be good idea.

Thanks Mike...I completely missed that and I guess I needed a nudge. I've been under a considerable amount of stress lately as I'm trying to sell our house and I had to put my cat down last week as he became very ill suddenly. It's all taking it's toll on me and my RSD seems to be intensifying along the entire left side of my body. I can't take most of the drugs so I'm left with few options. Thank god I can take some oxycodone as needed. I know I need to do something to lessen my stress but it's hard right now.

Thanks for the group hug!

Mrs D, Thanks for your offer to help with the link, I will do it, I was just a little stunned yesterday as I didn't realize what you were suggesting.

Warm regards to all

MsL

I thought you could word it better than I could! That is the only reason I suggested you do it. I don't have RSD and the history you all do. So I think one of you could do it better than I.

You know, write a little intro before putting this link in there