Block and acupuncture points in ears
 

Find out who the best RSD versed anesthologist is around you.
Ask him/her to teach you to do a Sphenoid sinus block with 4% liquid lidocaine, and a long 1sided cutip.
You go down the sinus cavity and the cutip rests on the Vegas nerve. You let it rest there for about 10 minutes. It interrupts the sympathetic firing.

So if you get a bad blood draw or whatever, you can start treating it immediately morning and evening.

The acupuncture study was is Europe. However the Acupuncturist College in Gainsville Florida knows about this. I have been unable to find any written information about it. Maybe someone has good research capabilities.

My doc said the regional means that it doesn't stay in one nerve region. Mine started with a tarsal tunnel problem, but the pain etc is not limited to the area that the tarsal nerve injury would normally hurt. And they took sympathetic out of the name because the role of the sympathetic system versus brain etc is uncertain.

Yeah, it seems like both names have problems, doesn't it?!

I'm ticked off, and anxious! I've had this bad fellow for almost 30 years. Now, My neuro has retired, and I'm out here with my finger well, you know where. So I gotta find a new doc, in a couple weeks, the PM docs here in Philly, seem to want to shoot ya up. I was comfy, with my methadone, cymbalta, diazepam, and some other things. NOW WHAT? I'm so nerved out! And afraid! I was comfy! sort of. well, turn a new page....
So, here I go.

Anyone else here go to an anesthesiologist? I've had nerve blocks under Dr Schwartxman before, but, all they did was make me numb, didn't do anything for the pain! And, he agreed! He just touched me and I jumped! So, what do I expect now? Are these people gonna give me my methadone? (Wonderful medication, no Buzz), and, I'm diabetic now! My family doc, ( a board certified internist, is absolutely AFRAID of me!) yea! So, if any of you have any advice, or clues, let me know? I'd preciate it! Thanks!

Pete
ASB

To whom do we send our concerns about this? I have no clue. This is for the U.S. I really have no clue for the U.K. or Canada.
A government agency, the A.M.A., The surgeon general?
We all need help here! This Name-code thing affects so many aspects of our lives, work, future medical care, social security, awareness by family & friends etc.
I even have a ribbon on my car from RSDHope.org that says "CRPS/RSD help put out the flame". If I wasn't aware I would probably think it just looks to complicated to be memorable.

Ugh !

It's been 9 years for me, and I'm still waiting for that sympathy to come (from anyone but fellow forum members) !

:grouphug:

I'm with KathyUK on this one, when I saw the thread title, I thought the poster was saying the name was being changed from CRPS to something new. The change was made a fair few years ago, but I completely understand that if you've been living with this thing for 10 or 15 years under one name, it must be frustrating to have had it changed.

Personally CRPS makes a lot more sense to me as a name for this than RSD.
.....

CHRONIC
Crumbs yes it is. Chronic means constant or long-term.

REGIONAL
The point here is that it starts in one area. If it spreads, it moves to another area. It doesn't start in your whole body (as far as we know), although some poor folk end up with it everywhere. For most of us, it will be in one or more areas of our body, not all over.

PAIN
Yes. A lot. The most pain possible on the McGill pain scale. Nuff said.

SYNDROME
Wikipedia says: "...a syndrome is the association of several clinically recognizable features, signs (observed by someone other than the patient), symptoms (reported by the patient), phenomena or characteristics that often occur together..." That seems a pretty fair assessment of CRPS - it can vary a lot from person to person.

Ok. Now for the old name. And I'm honestly NOT trying to be flippant with any of this.

REFLEX
Well that's weird - I thought reflexes were what you had tested by a doc tapping below your knee, elbow, ankle etc. What's that got to do with it?

SYMPATHETIC
Well very few doctors or nurses are sympathetic, even IF they understand what this thing is. Society as a whole knows nothing of it, so they definitely aren't. Family and friends struggle with this one as well.
Medically, it is now recognised that although the sympathetic nerves are involved, they are not responsible for the condition - there's a lot involved, the brain, CNS, sympathetic nerves, genetics even. Concentrating on the sympathetic bit is misleading.

DYSTROPHY
I had to look this one up. Wikipedia says dystrophy is the degeneration of tissue. Which is one possible part of the condition, but there's a lot more involved - the pain being the main thing, along with many other symptoms. Some people have the pain and weakness with very little obvious tissue damage, so highlighting it in the name again gives a bias to visual diagnosis, which is massively unhelpful as the picture is much more complicated.
........

I've only had this for 2 years (only :rolleyes:) but although I understand people not liking the name change, I don't think it's helpful NOT to accept and embrace the new one. In my experience the name RSD now seems to be mostly used now by the community who have suffered for years with not just the condition, but the ignorance of the medical and general population. They've bravely fought to try and raise awareness, and of course resented the name change.

But personally I don't think it's helpful to criticise the name of CRPS. We would all agree that the PAIN is the worst and main thing. Everything else that comes with it is inconvenient and distressing, but the pain is what cripples, depresses and immobilises us.

Just my point of view on this. Hope I haven't offended anyone - I respect every single person fighting this thing, whether it's been for five minutes or five decades...

Bram :grouphug: