Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Reply
 
Thread Tools Display Modes
Old 10-21-2013, 09:18 AM #1
StillCrazy StillCrazy is offline
Junior Member
 
Join Date: Mar 2013
Posts: 10
10 yr Member
StillCrazy StillCrazy is offline
Junior Member
 
Join Date: Mar 2013
Posts: 10
10 yr Member
Default The Doctors feature RSD

Today 10/21/2013 on The Doctor's (NBC) they will feature a lady with RSD. So glad this is a national show! I've called several family members that have never really understood what RSD is so they can watch!! Woot!
StillCrazy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
allentgamer (10-21-2013), AZ-Di (10-21-2013), birchlake (10-21-2013), Brambledog (10-21-2013), CRPSsongbird (10-21-2013), Djhasty (10-22-2013), ginnie (10-21-2013), Nanc (10-21-2013), RSD ME (10-23-2013), SnowWhyte (10-21-2013), Vrae (10-25-2013)
Old 10-21-2013, 09:35 AM #2
Nanc's Avatar
Nanc Nanc is offline
Member
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Nanc Nanc is offline
Member
Nanc's Avatar
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Default

Hey there! I was just getting ready to post this I just watched it online and am recording the episode coming on today. So happy to see them addressing this!!
Nanc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (10-21-2013), ginnie (10-21-2013)
Old 10-21-2013, 10:48 AM #3
birchlake birchlake is offline
Member
 
Join Date: Jan 2010
Posts: 363
15 yr Member
birchlake birchlake is offline
Member
 
Join Date: Jan 2010
Posts: 363
15 yr Member
Default

I just finished watching it. It was shared on Facebook by one of the CRPS websites.

It was a pretty good (but short) interview with Dr. Travis and also commentary from this patient's pain management doctor.

Good awareness of this terrible condition!

Last edited by birchlake; 10-21-2013 at 06:20 PM.
birchlake is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (10-21-2013), Nanc (10-21-2013), RSD ME (10-23-2013)
Old 10-21-2013, 12:29 PM #4
allentgamer's Avatar
allentgamer allentgamer is offline
Senior Member
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
15 yr Member
allentgamer allentgamer is offline
Senior Member
allentgamer's Avatar
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
15 yr Member
Default

It was cool that they talked about spreading, most doctors dont believe it spreads. It was a really good piece on RSD!
allentgamer is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AZ-Di (10-21-2013), RSD ME (10-23-2013)
Old 10-21-2013, 04:06 PM #5
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Default

Thank you!!

Anyone have the link?

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
Brambledog is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (10-21-2013), RSD ME (10-23-2013)
Old 10-21-2013, 04:19 PM #6
fbodgrl's Avatar
fbodgrl fbodgrl is offline
Member
 
Join Date: Dec 2012
Location: Eastpointe, MI
Posts: 259
10 yr Member
fbodgrl fbodgrl is offline
Member
fbodgrl's Avatar
 
Join Date: Dec 2012
Location: Eastpointe, MI
Posts: 259
10 yr Member
Default

While I was glad to see it covered...I was unimpressed.

It did show some good information, but it fell quite short IMO on explaining quite a bit as far as symptoms and different things that can be involved (pain brain, body temperature issues, etc). I think they would probably need a longer show instead of a snid bit to really get things explained.
__________________
Zookeeper
~Shelly~
fbodgrl is offline   Reply With QuoteReply With Quote
Old 10-21-2013, 04:54 PM #7
Nanc's Avatar
Nanc Nanc is offline
Member
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Nanc Nanc is offline
Member
Nanc's Avatar
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Default

Quote:
Originally Posted by Brambledog View Post
Thank you!!

Anyone have the link?

Bram.
Hey Bram!

Try this: http://www.thedoctorstv.com/main/content/RSD_Battle

There are several little videos there showing each portion of the story.

Nanc
Nanc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
anon6715 (10-24-2013), Brambledog (10-21-2013), RSD ME (10-23-2013), SnowWhyte (10-21-2013)
Old 10-22-2013, 04:29 AM #8
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Brambledog Brambledog is offline
Senior Member
 
Join Date: Jul 2012
Location: England
Posts: 1,122
10 yr Member
Default

Thanks so much for the link Nanc

I thought this was good in terms of them actually spending some time on it, and really talking to Kathy. Yes, they could have gone deeper into the range of symptoms we can experience, but then they might have lost the human element to the story, and lost the audience's interest. Sadly, you need to get people hooked in before you can bore them with the raft of CRPS symptoms! It is a lot to take in, and tbh I think ordinary people just struggle with too much medical info.

This is just my opinion, and not intended to insult anyone but what did annoy me is the fact that throughout the whole show, the presenter only ever referred to it as RSD, never as CRPS. Kathy's pain management doc did, but it was only once. It's so important that the new name (not so new - quite a few years now!) is recognised and used more in the US. I know a lot of folk like the old name and don't see why it was changed, but there were sound reasons - they didn't just decide it for the hell of it. It is widely acknowledged that the confusion around the two names means that research often isn't picked up on and compared as much as it should be. We all need to embrace the term of CRPS and use it much more - it's the name used more and more in other countries, and the name that will be used internationally going forwards. We have to look to the future and try to find solutions for us, not keep clinging on to the past. The US is such a big player in global medicine, and are the main country still predominantly using the term RSD.

I don't mean to offend anyone, but I found this so frustrating. When I was searching for the link I couldn't find it anywhere when I used the term CRPS, only RSD, but so many countries define the condition as CRPS now... CRPS had so many names in the past, and the new name was debated, decided on and accepted by the medical profession, not by TV presenters or politicians.

I'm so glad to see it discussed as a whole body disease needing whole body treatment. What they were saying about food is so true, and I'm glad they mentioned that you do need a whole team looking after you who are in contact with each other. I think we all wish we had that! If only they would all sit down together once in a while and figure a way through for us - it would probably reduce our suffering much quicker.

Thanks again.

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
Brambledog is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
allentgamer (10-22-2013), anon6715 (10-22-2013), Djhasty (10-22-2013), RSD ME (10-23-2013)
Old 10-22-2013, 09:21 AM #9
Nanc's Avatar
Nanc Nanc is offline
Member
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Nanc Nanc is offline
Member
Nanc's Avatar
 
Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
Default

Quote:
Originally Posted by Brambledog View Post
Thanks so much for the link Nanc

I thought this was good in terms of them actually spending some time on it, and really talking to Kathy. Yes, they could have gone deeper into the range of symptoms we can experience, but then they might have lost the human element to the story, and lost the audience's interest. Sadly, you need to get people hooked in before you can bore them with the raft of CRPS symptoms! It is a lot to take in, and tbh I think ordinary people just struggle with too much medical info.

This is just my opinion, and not intended to insult anyone but what did annoy me is the fact that throughout the whole show, the presenter only ever referred to it as RSD, never as CRPS. Kathy's pain management doc did, but it was only once. It's so important that the new name (not so new - quite a few years now!) is recognised and used more in the US. I know a lot of folk like the old name and don't see why it was changed, but there were sound reasons - they didn't just decide it for the hell of it. It is widely acknowledged that the confusion around the two names means that research often isn't picked up on and compared as much as it should be. We all need to embrace the term of CRPS and use it much more - it's the name used more and more in other countries, and the name that will be used internationally going forwards. We have to look to the future and try to find solutions for us, not keep clinging on to the past. The US is such a big player in global medicine, and are the main country still predominantly using the term RSD.

I don't mean to offend anyone, but I found this so frustrating. When I was searching for the link I couldn't find it anywhere when I used the term CRPS, only RSD, but so many countries define the condition as CRPS now... CRPS had so many names in the past, and the new name was debated, decided on and accepted by the medical profession, not by TV presenters or politicians.

I'm so glad to see it discussed as a whole body disease needing whole body treatment. What they were saying about food is so true, and I'm glad they mentioned that you do need a whole team looking after you who are in contact with each other. I think we all wish we had that! If only they would all sit down together once in a while and figure a way through for us - it would probably reduce our suffering much quicker.

Thanks again.

Bram.
Hey Bram, glad the link worked for you. I was happy, for the most part, with the story. I thought that they spent more time on this one than they do on some other stories. Yeah, I wish they would've dove in a little deeper too.

It is funny that you talk about RSD vs. CRPS. I was showing the story to my husband last night and said to him that I was shocked that they used the term RSD so much. I am one of them that uses that term more than CRPS. It is because RSD is what I was diagnosed with over 22 years ago and it is also the term my doctors use too. Old habits I guess...

I noticed Kathy's dr and Dr Prager both used CRPS and Dr Stork used RSD. I do wish Dr Stork would have explained the names as it can be very confusing to those not familiar with the name changes.

And to have a whole team helping you?? How can you make that happen?? Finding a good PCP AND a good PM dr is near impossible!

Nanc
Nanc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
allentgamer (10-22-2013), Brambledog (10-22-2013), RSD ME (10-23-2013)
Old 10-23-2013, 09:41 PM #10
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
Default

Thanks so much for this information and link everyone. I just saw it and was so glad to see people on tv acknowledging this horrific disease. I once saw Paula Abdul on I think a Dr. Phil show a few months back. It was good too, but I don't know what the link is. I was glad that she shared her experience with RSD too. The more people know about it, the better chance that a cure will someday be found.
RSD ME is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
An overlooked feature... reverett123 Parkinson's Disease 2 12-01-2008 02:31 PM
ABC Nightline to feature ALS? BobbyB ALS News & Research 1 09-18-2007 01:43 PM
ABC Nightline to feature ALS BobbyB ALS News & Research 1 08-24-2007 07:01 AM
The Thank You Feature DocJohn Community & Forum Feedback 68 01-25-2007 02:10 PM


All times are GMT -5. The time now is 05:22 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.