Writing is not my forte so I am very grateful that you have chosen to dedicate your talents to our cause. Thank you from the bottom of my heart.

I would love to read your articles and do what I can to help support you. Please share your links with us when you feel ready.

MsL

pete

well said it does get old having to explain this and never being able to get out what you are tryin to say. thanks for takin the time to write this out.. you get a gold star!!!!

carrie

No Carrie, No Dew.
(I love ya both)!
No to all of you unless you have a good idea, OR will follow through at least with a 'standard' , hey?

We're Not Born "Marketeers'."

I was educated as one, as for my own business's.
But, not quite sure how to "Market" RSD / CRPS< (see, I can't even settle into calling it one thing or the other!) I prefer, RSD. It's what I "came up" with.
CRPS, sounds and looks like "craps" to me, and, doesn't mean much more.

NEITHER, DO THE JOB!

I'll think of something, with my great doctor, (Knobler). Unless Ya'll do first!

I don't want no dam gold star! ((s0rr7y)....

But, what I DO Want, is this......

A UNIVERSAL WAY FOR THE PUBLIC (those stupid, wondering what's up, pokey eyes)...
They're WONDERFUL PEOPLE!!
THAT THEY CARE!!!

YET, WE
Don't know what the heck to tell them!
In one, symbiotic movement!

Why Not?

Are We going to Wait on the Medical Society? (Those BumbleFlucks who have let us down so often) Before?
No.
I say.

WE've got to come up with something Better, Ourselves!

I don't know what it is, I just know, that there's something better that can "IDentify this malady" to those who are innocent of it, and, explain it, in one fell swoop!
Yea?
Yes!

Universal Reflex Pain Syndrome (URPS) ,,,, Nope. (sounds like an apologetic burp).

RSD...... RSD, is, still Ok...

CRPS.... sound too much like craps.

Reflex Sympathetic Universal..Spreading Dystrophy. (RS/USD).,
Perhaps the closest?
I like this one. RS/USD. Sounds kind of patriotic. huh?


Maybe I'll drop a seed here....

Let's think shall we?

Because, I think these "Doctors" of ours, have enough work on their hands,
trying to figure it out,
Let alone "NAme it!"!!


Hey, WE've GOT IT!
WHY DON'T WE NAME IT?

of course......
it's gotta make sense in the medical society.....

Work with your docs folks...

I'll work with mine...

RSD is Old.... (I still like it)
CRPS Sounds like craps. (I don't like it).

What ever we all come up with, it'll be great with me, so long as we "thought it out"......


Love ya'll!

Pete
Asb

Thank you so much for your words. I will admit it made me feel very good. :-D

This is Karen's Article page where all the articles I have written so far are at. If anyone should choose to do so, you can subscribe to me. You will get an email every time I publish a new article. If you're unsure how to do it, pm me and I'll tell you how. Sometimes the system is glitchy so if you like what I've written, bookmark the page.

I really hope the above doesn't sound like I'm being pushy or promoting myself. LOL I intend it to be informational not promotional. :-)

Hugs,

Karen

Oh, Jeez....
I see I need to apologize to DEW, and Carrie!
(I'm sorry Ladies), and to anyone whooooo was tryin to help.

RSD doesn't meant alot nor does CRPS to those "who don't know".

It's not like "Cancer". That demands attention, and I don't want to "compete" with that.
RSd is not life threatening to that extent.

However it IS Completely Quality of life threatening! And, can do lots of harm.

These doctors (who don't have the disease) aren't the wisest.
My doctor has had RSD, so too has his wife. (along with 'C').
This couple "gets it".

Yet, they're too busy helping everyone, to come up with a new name...

I think I may start using "Rsd'd" (rusted) to my docs office staff, and others might use "Craps", yep, craps, for what they discuss on the phone with office staff. These office staff I find, are usually ready for a good joke.

The point still is,
We're Test Dumbies!
Not as "Dumb" as we were 20 or even 10 years ago.

My Doctor is GREAT!
But, he's had a heart attack, and is slowing down.
I trust him of course, with my life!
He trusts me, as well. And I appreciate that.
I cannot let him down!

He doesn't use me a a "test dumbie" as another famous Dr from Philly does.
My doctor is more conservative, and I'm a tough case, with the tbi, and tos, and sleep apnea.


We Each, need to carefully step back for a moment, (in the docs office) before we leave, (EVen if we must ask for a moment or two), to consider everything we've heard, been told, so we can think of, and ask, appropriate questions, (You can always ask a simple one... such as what side effects will I experience, and when Do I need call?), but for bigger things, ask questions!
They don't just automatically tell ya!

I think it's VERY helpful to take a friend, INTO THE OFFICE!
If, for no other reason than this.
So that this friend, will go on and communicate with others, about the "treachery" of this Monster!, and just get some dialogue going!

OK,
Good nite,
Carry On!

Pete

Hi Pete,
I agree the RSDSA is a great organization. I went to the annual conference a few weeks ago, held here in Scottsdale AZ. It was all day,135 attended, the Founder, 3-4 Drs. & Scientist. It was videotaped to be offered thru the RSDSA later. The following day was for the Drs. therapists, etc. I picked up several pamphlets etc. I'm going to write and buy-ask for several to pass out, for instance a couple weeks ago I went in for a blood draw. The first office had just closed, but opened the door my girlfriend asked if they could just take me, as how difficult it was for me to get in. I asked the two nurses if had heard of RSD and named it outright. They said no. I gave them the spelling, but howmuch better to have the brochures with me to give to them. They didn't let us in, so we went to another lab before it closed. I asked for the senior nurse and a bufferfly needle and we discussed RSD. Both nurses had never heard of it. How great it would have been to give them both a brochure. So needless to say, I'm ordering at least 100. and going back. I will have them with me, dentist, all drs. etc.
My next door neighbor is a Medical Dr. till he got C a couple years ago.
He and his wife always ask me how I am. He now teaches medical students a couple days a week. He asked me if I would like to speak to the students about RSD and I said Yes. So I'm going to make an outline, hopefully intelligent, and speak to his fall class.
Last year there was an national educational meeting regarding RSD in Phoenix. I wasn't able to attend.
Education of RSD in the medical schools, laws passed to accept disability and assistance for treatment like HBOT added to the list of accepted treatment for the insurance companies. My Dr. Neurologist is building to new clinics with a HBOT in each of them. I gave him a marketing tool we use in our business to promote the HBOT.
My husband and I have owned our own business for 42 years, so we have a little experience in growth and various ways to make that happen.
This latest bump in the economy has affected our business, so I need to get some people we've hired organized and get out their and get some new coffee jobs. As we all know how expensive this disorder is, we need to replace the jobs we lost over the past few months. I pay my Dr. cash-$250 an hr. and the HBOT will be cash too, plus insurance doesn't cover the new treatment I'm going to start to help with the 'heat' body and hopefully get me sleeping a little better at night. It's hormone replacement therapy by bio-identical hormones thru a compounding pharmacy.
Anyway, my personal opinion is to add RSD to educational program for medical drs. while in school. way way way too many Drs. have never even heard of RSD.
Thanks Pete for the interest in getting the word out. I went undiagnosed for 4 years, misdiagnosed for 1 plus years, then flew across the country to a group of sports injury DRS. and wah=la 1 minute got a RSD diagnosis followed up by nuclear med test, next day started therapy, Doc ordered Tens unit and came back to Arizona and got a good neuro and ortho and got into therapy. Have full body also like yourself, plus trigeminal nerve disorder, and fibromyalgia..
It's no easy, but I am very grateful for the many years of good health and being able to do so much with my husband and daughter. She was 17 when I got this, so packed in a lot while she was growing up, tennis, horseback, water skiing, snow skiing, traveling, aerobics, swimming,and am so thankful for those years of health while she was growing up.
Thanks again for the boost in getting the word out, it surely will help others get diagnosed sooner. They said at the RSDSA 50,000 persons a year are getting RSD, more children and young people than before in US. Your friend, loretta

Pete -

Following up on Loretta’s suggestion, the guy to talk to is Jim Broatch, the executive director of the RSDSA. He's readily available, completely connected, and the theme of your thread is one of his primary missions. Here's the complete contact info for the RSDSA:

RSDSA
P.O. Box 502
Milford, CT 06460

Tel: 203.877.3790
Toll Free: 877.662.7737
Fax: 203.882.8362
E-mail: info@rsds.org

RSDSA Review
RSDSA Communications/Publications
1123 Broadway, Suite 613
New York, NY 10010

Editor: rsdsa.newsletter@rsds.org
Living with RSD: living.with.rsd@rsds.org
Patient Representative: patient.representative@rsds.org
Ashley Mahoney: ashley@rsds.org
Jeanne Lazo: jeannelazo@aol.com

The other group that might be worthwhile reaching out to is the American Board of Pain Medicine, the über pain doctor organization I mentioned in another thread http://neurotalk.psychcentral.com/thread87978.html. However, the only contact information on their website is:

To request more information about ABPM or to provide feedback about this web-site, please contact us: info@abpm.org

American Board of Pain Medicine

4700 W. Lake Avenue
Glenview, IL 60025
847/375-4726
fax 847/375-6477

http://www.abpm.org/

I can't even find the name of its executive director on the website, but that's not unusual for medical societies.

I would, accordingly, suggest that you pick up the phone and introduce yourself to Jim Broatch, who's a really good guy. He would in turn be able to give you advice as to how to approach the ABPM, whose interests could only be served in greater public awareness of CRPS, as in encouraging more medical students to pursue residencies in pain management.

And about CRPS, sorry, I think we're stuck with the name, that is until it is no longer a "syndrome" and there's general agreement in the scientific community on its etiology and maintenance. My guess is that's at least 6 -10 years down the road.

Mike

I think one of the reasons RSD/CRPS is so tricky and often hard for the medical community to understand, is because no one case is the same and no one treatment works for everyone.

RSD/CRPS effects everyone in different ways. I have RSD/CRPS in my Belly and my legs. My belly was as a result of surgery and was diagnosed within 6 months of the surgery. My legs, not so much. The RSD/CRPS in my legs is from broken bones and took 6 years to get a proper diagnosis. My RSD/CRPS also effects my immune system.

Ditto with the treatments.
For my stomache I CHOSE to be a test dummie of sorts and tried a relatively unknown and unconventional treatment that my neurologist suggested : Botox. It was so worth it. Botox changed my life and made my stomache pain go from an 8 to a 4, with occasional flares, as long as I keep having it done every 8 weeks. It isn't for everyone, but I was at a point were I was willing to try almost anything. At the time of diagnosis, I was a young military wife living in a foreign country with a deployed husband, no car, etc-- the "world was on my shoulders per say". So, Botox was worth a try.

As for my legs--- we're still working on those ! I have some sort of blocks scheduled for later this week. My pain levels start at a 4 each day and peak at about an 8 at night. Effects my sleep A LOT.

I am also on some of the more "traditional" treatments : Neurontin and Elavil. They help keep with the nerve pain, allodynia and "hot" feelings. My drs and I are constantly playing with the dosages of those-- too high of dose and I am a zombie with no memory, too low and my pain sky rockets.

As for doctors and medical professionals-- I've run the gammut of good to horrible. My wonderful neurologist overseas diagnosed me-- he was knoweledgeable and helpful. I moved back to the US and my pcp and first Neurologist was clueless and not compassionate. VERY, VERY frustrating. I was referred out to a Pain Management specialist. He was OK, but took no time with me and offered no explanations or reviewed my case. Big red flag. Very Frustrating. I got a new neurologist--- I am seeing a neurologist for my epilepsy, she knows about RSD/CRPS, but doesn't want to treat it-- she prefers to stick to treating my seizures. Switched to a new pain management dr--- he and his team seem to have a much better grasp on RSD/CRPS than my first PM dr. But, they are affiliated with a major medical center. I am still getting to know them, and their philosphy so it will take time, BUT, at least they are treating it.

Sometimes you have to pick and choose your battles. Treatment or complete understanding ? It can be a tough call, but I'd rather have treatment and some understanding vs nothing at all.

Just as drs have to be willing to step outside their comfort zone and be willing to learn, so do we as patients and be open to trying new things-- even if means being a test dummie from time to time.

L2L

THANK YOU ALL,
for your kind replies.

I agree, I don't think we'll change the name within the medical community. Heck, when did "Patients" ever have any big deal with their treatment, let alone naming the disorder... That's their game.

Just maybe an Acronym, for the "Movement of Awareness"?

I would think a great acronym would be
P.A.I.N.

Now, what the heck does it stand for?


or...

People Active In Neurologic Studies...

"PAINS"

that could involve not only us, but all supporters, medical folks, family.

As,
"I'm In PAINS"

with some catchphrase...(subject to change maybe)?

Good for a T-shirt, bumper sticker, etc.


Ideas?

YA'll are great!

pete

I woke up this morning, (and, the mornings seem to be getting later and later.)

And, well the Sun cam shinin' down....

That would be the end of the story, but,

I reach for my pain meds (take 20mg. methadone), and relax, turn on the tv.

Then, I coughed a couple, few times, Manly kind of coughs, I don't smoke, so I wasn't yakin'! Just coughed from the water I drank...

WOW!

From my Ears to my fingerTips and Back! Electric Shocks, Pain, Numbness!
All at once! I know, if you tell a doc you have "pain and numbness" at the same time, they look at you like satan!

But, yea, it just seemed to "echo" up and down me arms!
All I could do, was let them lay down. Until it calmed down.

This, is what TOS is all about, or part of it.
Ouch!

I love to wrap my arms around a well, nevermind, oh yea! A Big fat pillow!

Works for me!

Anyone else get this, with the rsd, too?

pete