Who and where are we in the forum?

[daylilyfan]

I was looking in the Forum Reorganization above... and they are going to make some changes in the titles of forums, and making some major forums with subcatagories etc.

First the title of our forum is
Reflex Sympathetic Dystrophy
with this small type below...
Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)

What do you all think about having them change it by putting the name Complex Regional Pain Syndrome first, and then RSD below? The name RSD is being used more often now, especially since the newer research is showing that the disease may have much more to do with the Central nervous system than the Sympathetic system.

Also....

Look under Forum Feedback/Reorganizing the forum list/page 2... post by Mike Weins
He wants to put our forum as a subforum under the main forum of Arthritis...
"These will be the forums under arthritis....
Chronic Myofascial Pain
Ehlers Danlos Syndrome
Fibromyalgia
Lupus
Lyme Disease
Marfan Syndrome
Mixed and Undifferentiated Connective Tissue Disease
Myositis
Reflex Sympathetic Dystrophy
Sjogren's Syndrome "

This change bothers me more - I don't think it is a good one. I've never seen RSD listed as being a form of Arthritis. Some people see Rheumatologists, but most see neurologists or pain management doctors.

Just wondering what you all think about this.

Jules

Edited for clarity... was having a topomax moment... :-)

[GalenaFaolan]

IMO I don't think it matters much about whether it's listed as RSD and the rest under it or CRPS and RSD under it. I know the CRPS has been around for a bit as the "new" name for it but I think that most people are still going to say RSD anyway. A rose by any other name.... :D

I seriously don't think they should be putting of those under the title of Arthritis!! No one will be able to find those boards cause no one will ever think to look there! Maybe the one or ones that is doing this really doesn't realize that all these conditions need to be under another category or even have it's own category or list it under Pain. All those conditions have nothing whatsoever to do with arthritis!! I hope they realize this before they go making changes like that.

Karen

[Snoodle]

I am new to this site but have been reading it for months and have been signed up as a member for almost a year. After having RSD for over 6 years I totally agree that placing RSD under the heading of Arthritis is just another way this disease is being misrepresented and the confusion and lack of understanding will flourish. It is hard enough to have Doctors understand and accept what you are saying (as well as friends and family)but to have a site knowingly place one disease under a category that is not specifically related to the disease process is extremely damaging . As my time (and many others) on a site is limited due to the incapacitating nature of RSD, I believe it is imparative that the basic understanding of the disease is displayed properly by listing each condition and disease as a forum in itself.

I hope that the postings by members will encourage a positive change in the plans outlined above.

[daylilyfan]

Perhaps I should make a post on the forum suggesting the moderator come here and see what we have said.

Thanks!

[Cutiepie]

It doesn't matter to me whether or not they use CRPS or RSD as long as people searching for information via a forum can find us. Since both names are used interchangeably, it might be nice to have both listed on their forum list with both links bringing people to the same place. I hope this makes sense!

Either way, I think it is very inappropriate to put us under the arthritis umbrella. That is very misleading.

Thanks for bringing this up.

Take care,
Julie

[Sandel]

I agree that both RSD and CRPS should be on the heading for this forum and I feel that placing those diagnosises under the heading of arthritis is not apropriet.

I found this site in 2005 when I tentativly placed "RSD" and "foot" in a search engines after hearing those three initials used by a caseworker.

For the layman looking for answers I would hate to see the searching be more complicated for anyone new into this diagnosis.

Big soft gentle hugs everyone,
Sandra

[rainbow422@aol.com]

These are interchangeable and depending on how long your doctor recogonized this as a diagnoses depends on which term they would use. I believe that they should be used interchangably in the search criteria. Also, I do not think that artritis should be part of the topic because in my opinion it is something totally different.

Just my 2 cents

Rain :D