In the News

For everything and anything else not covered in the other WED/RLS sections.
becat
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In the News

Postby becat » Wed Mar 12, 2008 7:53 pm

This thread is being started so that we can post timely links ( some become outdated) and we'll clean up while it's going, so don't get freaked out about the clean up of outdated links, please.

You can help by checking the link for yourself if you posted it, use the edit button. Update the link, if a new one is added.

When posting a link about RLS in the News, be sure the writer or production site is included.
For articles or print: copy and paste the story in the form, as if, you were going to print off the article. Then go back to the article home page and copy the link.
If you wish to posting video: a link and the title and date of the video. Also, be sure to supply the writer's credits and the publication it came from.

Ann, I am sorry in advance, my head could not find the one you started for some great reason, fog and sleep are too heavy. :?
Lynne

***************************************************************

Desert Dispatch

What Ails You: Chronic pain can be source of sleep loss

http://www.desertdispatch.com/articles/ ... omnia.html


What Ails You: Chronic pain can be source of sleep loss
By JACKIE RANDA
March 3, 2008 - 1:56PM
One of the most common complaints I hear from my patients is that they cannot sleep well.

Pain causes insomnia — insomnia, in return, causes increased pain. While this vicious pattern cycles round and round, you become more depressed, more withdrawn, life seems more difficult to manage. Worst of all, going without sleep, makes it difficult for you to cope with your pain. A well-rested patient may report his pain to be worth three points on a ten point scale; the same patient, three days later and without sleep, will report the same pain to be nine or ten points.

Insomnia describes difficulty sleeping which may result from a variety of conditions. Pain is the top cause of insomnia. You think to yourself that you need more pain medication to get to sleep and then, to your dismay, you find that many pain medications make it very difficult to get to sleep. If you do manage to get to sleep, medications can cause you to have vivid and disturbing dreams which keep you restless. Pain then not only robs you of the sleep quantity, but the pain — or the medication you take for it — costs you sleep quality as well.

When I say that pain causes insomnia, I don’t mean that you are necessarily going completely without sleep. Pain makes it difficult to get to sleep and difficult to stay asleep. You may be so tired from dealing with your day that you fall asleep quickly when you lay down, but then you may wake often during the night. Many people complain that the pain wakes them whenever they move in their sleep. You might even be able to get back to sleep, but still, your sleep was disturbed. You may also find that after a few hours restless sleep that you are awake earlier than you want to be. All these symptoms — difficulty falling asleep, restlessness, waking early — are symptoms of insomnia.

Some of the common cures suggested for insomniacs don’t apply to you if pain is keeping you awake. We tell folks struggling with sleep to make a sort of personal ceremony out of the “off to bed” process. We suggest moving the TV out of the bedroom, do relaxation exercises, turn off the lights and any other noises. If you are in pain, this process of removing all distractions can be counterproductive.

Without the other distractions, all the brain has to focus on is pain. During the day, your activities distract you from the pain. Quieting the house and settling in to bed in the evening leaves you with nothing but pain to think about. The longer you lay there trying to go to sleep, the more you focus on the pain and the intensity of the pain seems to increase as the minutes the tick by.

To address problems with sleep problems associated with pain, both conditions must be addressed. Folks in pain often have more than one doctor. There is the doctor you see for the flu and regular checkups and then there’s the doctor managing whatever condition is causing your pain. The problem becomes even more complex when your pain results from a worker’s compensation injury. Often the doctor handling your injury will be reluctant to address your sleep issues. Your general practitioner, on the other hand, doesn’t want to prescribe medications for a problem he sees related to a condition being treated by another physician.

A sleep disorder caused by pain requires a multi-disciplinary approach. In other words, you not only need the advice of a physician who specializes in pain management, but you need access to psychologists who are trained in behavioral medicine. Unfortunately, you may have to insist that you be referred to a comprehensive pain management center where you can be helped. Pain management, in my opinion, has been relegated to the position of “last chance” medicine. Folks are not referred to these valuable centers until their doctors decide there’s nothing else that can be done. I think that pain management should be part of your care all along if you have a condition which will cause significant pain.

Behavioral medicine can be quite effective in helping not only to improve your quality of sleep, but can help you manage your pain more effectively without using the narcotics that rob you of your quality of life. The secret is consistency. You are going to have to really want to get better. Recovery will require scrupulous attention to your behavior for awhile, but a good pain clinic will be there all along to help you. Like with my own profession, they cannot do the work for you, but they will be there to show you the way and cheer you along.

There are a number of effective sleep medications which might help you get some rest in the mean time, but for a long term solution, behavioral medicine is best. The lessons you learn will last your entire lifetime without adverse affects.

ABOUT THE WRITER:
Jackie Randa is a physical therapist who owns Back on Track in Barstow. She can be contacted at jranda@aol.com.

becat
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Postby becat » Thu Apr 03, 2008 12:00 am

This is awesome, someone who might help our own cause.

Link to article and it's about insomnia!!!!!!!

http://www.latimes.com/news/opinion/com ... 6290.story

Lynne

becat
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Postby becat » Thu Jun 26, 2008 8:20 pm

Hi everyone.

Just found this and it may have been posted before, if so, sorry.

May 12, 2008

MedlinePlus website, Healthday article.

http://www.nlm.nih.gov/medlineplus/news ... 64513.html

Just in case the link fails!

Drugs for Restless Legs Syndrome Have Downsides
Analysis finds side effects, loss of effectiveness over time

Monday, May 12, 2008


MONDAY, May 12 (HealthDay News) -- The drugs that are widely used to treat restless legs syndrome do provide relief, but they are burdened by side effects and a gradual loss of effectiveness that causes many sufferers to stop taking them, a new analysis finds.

"One of the things that we found that we can't fully explain is that they have more robust effects early in therapy," said study co-author C. Michael White, an associate professor of pharmacy practice at the University of Connecticut School of Pharmacy. The report was published in the May/June issue of the Annals of Family Medicine.

White and his colleagues looked at 14 trials of four nonergot dopamine agonist (NEDA) drugs, one of which never reached the market. The other three, pramipexole (Mirapex), ropinirole (Requip) and rotigotine (Neupro) are the mainstays of treatment for a condition that affects 5 percent to 10 percent of American adults.

"This kind of meta-analysis hasn't been done before," White said. "There have been lots of studies to assess their effects, but they didn't look at things like rates of withdrawal and risks associated with using the therapy."

Restless legs syndrome is a neurological disorder in which the leading symptom is described by its name. Those symptoms usually occur at night, interfering with sleep. NEDA drugs quiet the legs by mimicking the activity of dopamine, a molecule that acts as a hormone and also a signal transmitter between cells. Such drugs are also used to treat Parkinson's disease.

One drug that looked good in the meta-analysis was sumanirole, whose development was stopped in 2004 by Pfizer Inc. on the grounds that it offered no apparent advantage over existing medications. The meta-analysis included just one short-term study of sumanirole.

Among the others, White said, "when you look at the benefits of pramipexole, it looks like it's providing more benefits." One explanation for that finding is that the trials of the drug were relatively short-term, before the side effects that lead many participants to drop out became more evident, he said.

Those side effects include nausea, dizziness, wheeziness, fatigue and transient headache, White said.

The dropout rate was greatest in trials of ropinerole, "which may be the drug that is causing the most profound side effects," he said.

On the positive side of the ledger, "it looks like they all had the same measure of efficacy" in relieving symptoms, at least over the short-term, White said.

"It would be tempting to go with pramipexole, at least for the short term," he said. "If you are concerned about safety, ropinerole had a higher rate of withdrawal."

Some head-to-head studies of the drugs are needed to determine which is the most effective and safest, and such studies should have a longer follow-up than past studies, the researchers said.

The American College of Neurology is now going over the data on controlled trials of the NEDA drugs and will publish guidelines on their use "by the end of the year," said Dr. William Endo, an associate professor of neurology at Baylor College of Medicine in Houston.

Endo, a member of the committee developing the guidelines, said the published studies show that these are definitely first-line treatments for restless legs syndrome. There is no doubt about it, he said. These are the only really major compounds that have gone through controlled trials. It is the quality of the studies, as much as the results, that supports them.

The dropout rate among people taking the drugs is about what could be expected of any drug therapy, Endo said.


HealthDay

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FidgetBoy
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Postby FidgetBoy » Thu Jun 26, 2008 8:41 pm

Becat- I'm glad you posted this-- I hadn't seen it yet. I was wondering when someone was going to start looking at not just the immediate success rate but how many patients successfully stay on these drugs. If the rate of resistance approaches what I've seen in parkinson's patients-- one should expect more studies showing that DAs are the not the panacea that everyone has made them out to be.
Josh

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Aiken
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Postby Aiken » Thu Jun 26, 2008 9:50 pm

becat wrote:"... on the grounds that it offered no apparent advantage over existing medications. ..."

The cynic in me hears that as, "We don't see the point in putting a similar drug on the market before our exclusive patent on the current on runs out. When that happens, we'll suddenly realize that this other one is actually superior and start marketing it."
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.

becat
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Postby becat » Tue Jul 15, 2008 1:00 am

Hi Everyone,

Sorry if this has been posted already, but in reading and then watching this video, I'm a bit torked off.

Not about what the real issue was that was being discussed, just how they used US (the RLSers) to compare.

This link will take you to the new RLS Foundation's Blog site.

Your looking for the comments about Jim CaRrey and in that paragraph is a link to watch what and how he said what he did about our community.

The time stamp for the statement is 4:19 in this 9:21 video.

My hearts went out to everyone that is dealing with Autism, I have one of my own. However, I wondered what really made these people laugh so long......?

If they only really understood!

Blog for RLS Foundation.

http://rlsf.blogspot.com/

Look for this paragraph.
Our most recent bit of bad press surrounds actor Jim Carrey. At a recent rally for autism, Jim Carrey attempted to hound the drug companies and decided to use RLS as his soap box. You can see the video here. The comment comes about 4:12 into the video. We are in no way commenting on the rally, but are upset that a popular actor like Jim Carrey would mock our cause while supporting his own. We are currently attempting to find a place where our members can voice their concerns with Jim Carrey's comment.

Hugs to all,
Lynne

PS TO WRITE TO JIM CARREY:

Mosaic Media Group
9200 West Sunset Boulevard
Suite 1000
Los Angeles, California 90069
USA

ViewsAskew
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Postby ViewsAskew » Wed Aug 27, 2008 6:44 pm

This is one to get mad about. OK, I get the underlying point, it's just that RLS is NOT shaky legs and the writer is completely wrong.

http://www.flickr.com/photos/lorenzodom/2800474306/

I am not a member and didn't want to join at the moment, but am hoping someone here is a member or has time at the moment to join and let this person know that RLS is so much more than jiggling your legs. Heck, I imagine a large percentage of us with RLS do not jiggle our legs - I know I don't nor does anyone in my family. Of course, I do use that method for controlling RLS when in a situation where I can't get up. But, that is what I'm consciously doing to avoid the inner turmoil of RLS.
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 » Thu Aug 28, 2008 1:47 pm

ViewsAskew wrote:but am hoping someone here is a member or has time at the moment to join and let this person know that RLS is so much more than jiggling your legs.

Done. I threw a ton of stuff at him off of the top of my head. I probably spoke out of my butt a few times, since I don't have personal experiences with all aspects of RLS, and I can't always remember the details of research and such, but I'm not concerned if I was inaccurate in a few places. I mainly just wanted to overwhelm the guy and make him think twice.
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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Aiken
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Postby Aiken » Thu Aug 28, 2008 1:55 pm

By the way, regarding Jim Carrey's ignorant rant, does the Foundation ever contact high profile people to correct them about the misinformation they're spreading? It seems to me that this could be considered a valuable thing. Fighting for recognition of the truth includes fighting misinformation.

I'm sure there's a foundation that would be all over it if someone claimed that blind people were only pretending, for instance.
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 » Thu Aug 28, 2008 5:15 pm

Yes, they do work very hard to rebut at the larger, more visible level; that's one more thing that they provide for us.
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 Sep 12, 2008 10:55 pm

For those who've decided that sleeping in one bed just isn't feasible:

http://www.cnn.com/2008/LIVING/personal ... index.html
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 » Mon Sep 15, 2008 4:28 am

Well, not really in the news...but if you have an email relationship with your doctor or you are going in for a visit, please give them this information:

http://www.prweb.com/releases/2008/9/prweb1294724.htm
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.

becat
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Postby becat » Wed Sep 24, 2008 9:34 pm

I finally found it! Yahoo........

http://www.abc4.com/mediacenter/local.a ... eoID=62446

This was done with Dr. B. and Corbin Bersen and his wife. No, I have no idea how to spell the actors name today. Sorry!

Wish the foundation could have had them, but at least the National Sleep Foundation got it.

Lynne

ViewsAskew
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Postby ViewsAskew » Tue Oct 14, 2008 6:32 pm

Not really in the news...but it's a blog I found about fibro. Looks pretty good
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 » Mon Nov 10, 2008 7:46 pm

A blogger ranting about how RLS can't possible exist...

I was too annoyed to respond when I saw it. I hope several of us hop over there and cite something that makes him quake in his boots for having been so mean... :twisted:
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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