NeuroTalk Support Groups - The Doctors feature RSD

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - The Doctors feature RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/196022-doctors-feature-rsd.html)

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.

Quote:

Originally Posted by Nanc (Post 1023984)

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 chan

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:

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.

Quote:

Originally Posted by AZ-Di (Post 1024427)

Quote:

Originally Posted by RSD RENEE (Post 1024443)

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.