In the News

For everything and anything else not covered in the other WED/RLS sections.
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HeatherB
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Postby HeatherB » Mon Nov 10, 2008 8:54 pm

I posted. I had to. Mad or not I immediately post to these people. They need to understand they are not as smart as they like to think they are and they need to go do some research before spouting off like they do.

ViewsAskew
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Postby ViewsAskew » Mon Nov 10, 2008 9:35 pm

You go, girl :wink:

By tomorrow I should be calm enough to respond with dignity...
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Aiken
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Postby Aiken » Mon Nov 10, 2008 11:00 pm

I submitted this. If he's not a total dick, I'd hope he'll reconsider.

RLS is real and was being diagnosed for hundreds of years before a pharmaceutical company understandably annoyed you with its admittedly-stupid commercials.

It’s a dopamine disorder that produces very unpleasant (or even painful) feelings in the legs and other parts of the body, which are temporarily relieved by voluntary movement. That’s why people who have it are considered restless: it’s difficult to hold still.

Look up Wittmaack-Ekbom Syndrome–it’s the original name for RLS, coined about 65 years ago. It’s just less obvious and seldom used. Most of us with RLS actually wish people didn’t use such an obvious, and frankly ridicule-inviting, name.

I’m sure there are a few fake or exaggerated maladies out there that the pharmaceuticals love to make money off of, but please don’t focus on RLS, because all you’ll do is do harm to a group of people who suffer a lot more than the idiotic name of our syndrome would imply.

I cannot insist, but I’d ask, please, consider editing your rant so it can’t do harm to people who have real problems.

Thanks.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

ViewsAskew
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Postby ViewsAskew » Tue Nov 11, 2008 4:13 am

Nice reply, Aiken. Kudos.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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HeatherB
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Postby HeatherB » Tue Nov 11, 2008 4:27 am

I can't say I was as nice as Aiken! I wasn't down right rude, but pretty close!

Polar Bear
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Postby Polar Bear » Tue Nov 11, 2008 5:03 am

Yeah, I responded also, as in 'How do you Know" "What lets you believe... .... fabricated". Please do not do us (rls sufferers) a disservice.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

becat
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Postby becat » Wed Dec 17, 2008 8:44 pm

I know this will look bad for me to post this myself............

BUT I can't help it. This article and the way the reporter did this was amazing.
Most of the people in this article are in the new Public Service Announcement that was made early this yr...hopefully coming soon to a TV near you.

Anyway, along with the PSA people (yes, I am one), we have one of my favorite RLS docs., Dr. David Rye, and also, 18 Ali Dzienkowski.
I loved the way they did this article and it's a hit out of the park for our community.

Yes, I know it looks bad that I am posting this, sorry, but this is just awesome.

http://well.blogs.nytimes.com/2008/12/1 ... -syndrome/

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ctravel12
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Postby ctravel12 » Wed Dec 17, 2008 10:51 pm

Lynne I just watched this video and I feel that it was done in good taste. I do not feel that it was offensive at all.

Hey we all have rls on this board so please look at. It is very interesting.
Charlene
Taking one day at a time

ViewsAskew
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Postby ViewsAskew » Thu Dec 18, 2008 1:07 am

Lynne, I can't imagine why it looks bad for you to post it. You should be honored and proud to have served the RLS community as you have.

Thank you. And thanks to the Foundation and anyone else involved for keeping this on the radar. Without all of you, we'd still be in the dark ages getting quinine.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Aiken
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Postby Aiken » Fri Dec 19, 2008 2:54 am

I think I'm a little confused. I didn't see a video in Lynne's link. Or maybe ctravel was referring to something else?

There's a link to the audio-only commentaries, though:

http://www.nytimes.com/interactive/2008 ... SSLEG.html

I think Lynne described RLS pretty well, or at least her description worked for mine. It was especially accurate when I think of the times that I haven't been able to control mine and I've lost too much sleep, cognitive function, and humor.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

ViewsAskew
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Postby ViewsAskew » Fri Dec 19, 2008 5:22 am

I think Lynne's link takes you to the initial article, but then when you read it you have to click on the Patient Voices link to get to the audio. Aiken's like takes you directly to the audio.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Postby ViewsAskew » Sun Dec 21, 2008 5:04 am

It's in the news again! Along with several other conditions that need positive press.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Neco
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Postby Neco » Sun Dec 21, 2008 6:37 am

Gee RLS & IBS.. I'm 2 for 0 !

ViewsAskew
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Postby ViewsAskew » Sun Dec 21, 2008 7:42 am

Lol. I figure a lot of us here are going to score multiple times. Fibro, IBS, RLS, Celiac, and anxiety disorders are common here.

In my DH's family, they have five or six of these "Yuppie" diseases among them...
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Aiken
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Postby Aiken » Sun Dec 21, 2008 8:50 am

Zach wrote:Gee RLS & IBS.. I'm 2 for 0 !

Didn't you also say once that you had GAD?

I've RLS and GAD, and neither helps a person sleep.

But... hooray for modern chemistry. :)
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.


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