Important Links

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Important Links

Postby ViewsAskew » Tue Jan 20, 2009 12:09 am

This is a sticky topic that holds links to threads/topics of enduring importance, that people want to have easily available, that are viewed or referred to frequently. Instead of making each such thread/topic a sticky, we are placing links to them inside this one sticky. That way, we won't have so many stickies that you can't see the new posts.

This topic is locked and editable by moderators only because we want it to contain only links and not posts about links :). So if you would like to see something added here, please pm one of the moderators.

These should take you to posts that already exist. Some are updated frequently, some are not.
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 » Tue Jan 20, 2009 12:12 am

Click on any of these below. The research ones are updated periodically and may contain many pages of posts. To see the newest posts, go to the last page!

Clinical research and Trials

Published Research: General RLS Topics

RLS In the News
Last edited by ViewsAskew on Sat Mar 07, 2009 10:49 am, edited 3 times in total.
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 » Tue Jan 20, 2009 12:16 am

ADD and ADHD and RLS posts:

viewtopic.php?t=6420
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 » Tue Jan 20, 2009 12:18 am

Ferritin Posts

viewtopic.php?f=4&t=8058 and in particluar: viewtopic.php?f=4&t=8058#p62957

viewtopic.php?t=6283

viewtopic.php?t=6201

added 2013:
Three papers that deal with ferritin and augmentation
viewtopic.php?f=5&t=6532&p=61601#p61601

Key excerpts from papers that deal with ferritin and augmentation
viewtopic.php?f=2&t=8177&p=64241&#p64241

Buchfuhrer's 2012 paper, a good review of treatment, including comments on ferritin and augmentation:
viewtopic.php?f=5&t=4749&p=66971#p66971
Last edited by ViewsAskew on Tue Jan 20, 2009 12:21 am, edited 1 time in total.
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 » Tue Jan 20, 2009 12:19 am

Last edited by ViewsAskew on Tue Jan 20, 2009 12:28 am, edited 1 time in total.
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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Posts: 13845
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Postby ViewsAskew » Tue Jan 20, 2009 12:22 am

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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Location: Chicago

Postby ViewsAskew » Tue Jan 20, 2009 12:23 am

Foods that bother RLS

viewtopic.php?t=6176
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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Location: Chicago

Postby ViewsAskew » Tue Jan 20, 2009 12:24 am

Exercise and how it affects RLS

viewtopic.php?t=6162
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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Posts: 13845
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Postby ViewsAskew » Tue Jan 20, 2009 12:24 am

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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Posts: 13845
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Postby ViewsAskew » Tue Jan 20, 2009 12:30 am

Finding a Good Doctor

viewtopic.php?t=5887

Favorite Doctors(click on it to add yours)

Nationally renowned RLS/WED doctors(link added 2012)

Note to mods - I got through page 5 in this section.
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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Location: Chicago

Postby ViewsAskew » Sat Mar 07, 2009 11:00 am

The RLS Foundation website

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Brochures and bulletins from the RLS Foundation: (these are PDF documents and require Adobe Reader to open; most computers have it but if you don't, you can download it for free from http://www.adobe.com/products/reader.html ). Note some of these still refer to RLS, the old name. They will all be updated over time to refer to WED, the new name.

Brochure about WED/RLS called Restless Legs Syndrome: Causes, Diagnosis and Treatment

WED Medical Bulletin for Healthcare Providers (2014 version) Aimed at healthcare providers, written by physicians, this document is very useful for patients who want to understand the disease. It has an algorithm that helps doctors make appropriate treatment decisions

WED/RLS Mimics

A Quick Guide to Living with WED/RLS (formerly the RLS Fact Sheet)

Coping Methods for WED/RLS

Medications for WED/RLS

WED/RLS Triggers

Augmentation in RLS/WED

Understanding WED/RLS and Iron

Activity, Exercise & WED/RLS

Depression and WED/RLS

Depression and RLS/WED (Healthcare Provider Series) Special Considerations in Treating Depression when the patient has Restless Legs Syndrome (RLS)

Pain & WED/RLS

Children and WED/RLS

Children and RLS/WED (Healthcare Provider Series) Restless Legs Syndrome and Periodic Limb Movement Disorder in Children and Adolescents: A Guide for Healthcare Providers (for healthcare providers)

WED/RLS in Cognitively Impaired and Older Adults

Surgery and RLS/WED (Healthcare Provider Series) Special Considerations for the Surgical Team when the patient has Restless Legs Syndrome

End-Stage Renal Disease and WED/RLS

Pregnancy and RLS/WED (Healthcare Provider Series) Vital Considerations in Treating a Pregnant Woman who has Restless Legs Syndrome

RLS/WED Patient Sleep Diary

WED/RLS Patient Symptom Diary

Clinical Trials: What to Know Before You Go

Scientific Bulletin (an example of what goes to the doctors who join the RLS Foundation at the heathcare provider level)

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Other useful documents and websites:

Mayo Clinic algorithm for RLS/WED treatment

The website for the southern California support group of the RLS Foundation, maintained by Dr. M. Buchfuhrer, who will answer questions about your particular problems with RLS and provides an archive of previous questions and his answers.

[url=http:/www.rlsrebel.com]Jill Gunzel's website[/url] for non-pharmaceutical aids and for attitude

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Good books about RLS/WED:

  • A book for physicians who have to treat RLS that is also very informative for patients:
    Hening, Buchfuhrer and Lee, 2013. Clinical Management of Restless Legs Syndrome, second edition
    (aka the little blue book) http://www.pcibooks.com/books/view/46

  • A book for physicians or patients:
    Chokroverty, 2010. 100 Questions and Answers About Restless Legs Syndrome.

  • A book for patients that physicians could also learn from:
    Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome; Coping with Your Sleepless Nights.

  • A book for lay people about RLS. This is my favorite to give people when I want them to understand the impact RLS has on one's quality of life: Yoakum, 2006. Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic.

  • A collection of technical papers by medical researchers: Hening, Allen, Chokroverty and Earley, 2009. Restless Legs Syndrome. Not for the layman, so you might have to look up some terms, or read things a few times before they make sense. But it's a pretty cool compilation of recent research.

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If you would like to add something to the list, or if you find a broken link, please let us know!

edited by Ann 2012
Beth Apr 2014
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.

badnights
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Re: Important Links - Augmentation & Iron

Postby badnights » Mon Jun 11, 2012 3:21 am

Here are some research papers and book and website extracts that deal with augmentation, the link between ferritin (iron) and augmentation, and general diagnosis and treatment of WED/RLS:

The RLS Foundation's handouts on Augmentation
1. Go to the RLS Foundation website, click Patient at the top, click Publications at the left, and download "What is Augmentation?"
2. Become a member, log in, go to Members Only, click Member Publications at the left, and download "Augmentation: A quick Guide" and "Augmentation FAQ"
  • If you are not a member, go to http://www.rls.org/connect-with-others/become-a-member to find out about joining.
  • If you are broke and the small membership fee, which goes to support research as well as creation of these documents, is too much, you can email the Foundation about getting a scholarship (free) membership: info@willis-ekbom.org or (507) 287-6465. It's worth it, to access these and other Foundation publications.
Buchfuhrer's 2012 paper: an excellent review of WED/RLS treatment, new maximum recommended doses of dopamine agents, a cautionary note about impulse control disorder, and comments on ferritin and augmentation:
Citation: Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790

The International RLS Study Group's 2015 white paper on augmentation prevention and treatment:
Extract from Clinical Management of Restless Legs Syndrome, 2nd edition, by Lee, H.B., Buchfuhrer, M.J., Allen, R. and Hening, W.A., 2013 (Professional Communications Inc., USA). Treating Augmentation, p.181-183:
Clincial_Mgmt_Augmentation_Treatment.pdf
(464.2 KiB) Downloaded 228 times

From the Johns Hopkins Center for RLS website, a good description of the role of iron in RLS/WED; recommends raising ferritin to over 100 & trying iron infusions:
Johns Hopkins Center for Restless Legs Syndrome.pdf
(68.92 KiB) Downloaded 308 times

This research paper shows that low ferritin is associated with greater RLS/WED symptom severity and increased risk of augmentation (<200 KB):

This report from the International RLS Study Group recommends that serum ferritin be at least 75 ng/ml:
This research paper shows that augmentation is very common (>2000 KB):
Allen+ 2011 _Augmentation is COMMMON.pdf
(1.98 MiB) Downloaded 324 times

This research note emphasizes that the incidence of augmentation in people being treated with dopamine agents increases over time (<200 KB):

The 2009 paper by Frauscher and others is the one that confirmed the association between low ferritin and greater chance of augmentation on dopamine agonists. A recommendation to get your ferritin levels to over 100 ng/mL can be found in the Johns Hopkins link above.

Edited for readability -Beth Apr 2014
Edited to add Augmentation handout -Beth Jan 2015
Edited to add IRLSSG 2015 white paper & note about free Foundation augmentation brochure -Beth Oct 2015
Edited to update links & improve readability -Beth June 2016
Beth
WED/RLS AUGMENTATION
viewtopic.php?f=5&t=6532&p=61601#p61601
Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice.


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