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!:D

Hey there! I was just getting ready to post this :D I just watched it online and am recording the episode coming on today. So happy to see them addressing this!!

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!

It was cool that they talked about spreading, most doctors dont believe it spreads. It was a really good piece on RSD!

Thank you!!

Anyone have the link?

Bram.

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.

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
:hug:

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.:rolleyes:

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
:hug:

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.

It's not the Dr Phil Show, but this is Paula Abdul talking about her feelings of dealing with her CRPS/RSD.

http://www.youtube.com/watch?v=NF-pB...e_gdata_player

Very brave young woman. But I can't help really wishing that she had felt able to reveal the condition before all the rumours about her being on drugs or just crazy, etc. because that always seems to slightly muddy the waters of any interview she does... I have immense admiration for her though - so many of us hide away to one extent or another, but she is on screen and up for all the criticism of a merciless press.

Bram.

Thanks Bram for finding that link. I admire her too. The only thing that made me confused with her is that I believe she said on the show that ice was her friend. I was told that ice is very bad for rsd. Well anyway, thanks again for the link and you comments. Take care.

I agree Bram, I wish they could stick with one name. When I use both CRPS/RSD it seems to confuse lay people. They get a look on their face as if
"do you have both or are your Dr.s not sure which one"? And then so many letters. I realize that CRPS should be the universal name and that RSD is old school. But in a way Complex regional pain syndrome makes it sound like there is pain in one region. Then I wonder if people just think "oh, your (arm/foot) hurts so take a tylenol or an aspirin and get on with it." I just wonder if including the word "dystrophy" helps with understanding. Any thoughts?

I tell people that I have rsd and that it's not muscular dystropy, but nerve dystrophy.
I read somewhere that if you say that, people may understand it better. I've tried and it did seem to help with some people.

RSD VsCRPS
 

Hi. Good subject. RSD was named in 1985 after Sydocks and Causalgia names.
The supposed reason for changing the name was due to some doctors did not see dystrophies. However, wait several years, and you will see dystrophy.
It is correctly named with dystrophy and the sympathetic nervous system. It is a neuro disease. CRPS turns it into a pain syndrome.
For those of us who went through the name change at that time it was a positive change. This is not.
We are just getting name recognition for RSD as a neuro disease, and now we loose ground.
How do you think people that have MS and parkinsons's would feel if after most of their life, the name gets changed to some pain syndrome ?

RSD is between MS and Muscular dystrophy. Yes, there is pain, and yes it is complex. However, it is more than a complex pain syndrome. So it is taking us back several steps, as well as now people need to say they have RSD/CRPS. Non of us are enjoying this name change and set back.

We as a group should be standing out ground, and writing whoever cares to keep the name the same. changing the name is not progress. We need hyperbaric chamber oxygen treatment. RSD is not a listed condition.
Were need name brand Klonopin to sedate the nervous system. Not covered.
MS and Parkinson's for example have treatments and medications specifically approved for those dis-eases. RSD none.
Pain doctors are trying seizure med's with horrible side effects. The best medications are gone or not available here in the USA.
Changing the name is mass distraction instead of progress.
No hurt feelings. We need to stand together as a group with 1 recognized name.

We started out using CRPS because that's what the doctor called it - he said it was the newer name. He pronounced it "crips" instead of just saying the letters. However, I tended to see more info on RSD, plus my sister said she hated hearing something that sounded like "crypts", plus frankly, "Complex Regional Pain Syndrome" has the same "feel" as Chronic Fatigue Syndrome - the first sounds like you just kind of hurt all over a bit, instead of the terrible, devastating pain that it really is, and the second sounds like you're just a bit run down, instead of the terrible devastating fatigue that it really is. I think RSD, when you say what the letters stand for, just sounds more impressive. It's hard enough to get people to understand even an inkling of what this is, so whatever help we can get, I use. We've switched to RSD.

I might start using the muscular dystrophy explanation - that might help, because people understand that MD is a terrible disease.