Important Links

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

Post by ViewsAskew »

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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Post by ViewsAskew »

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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Post by ViewsAskew »

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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Post by ViewsAskew »

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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Post by ViewsAskew »

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: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

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: Los Angeles

Post by ViewsAskew »

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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Post by ViewsAskew »

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: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

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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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

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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Post by ViewsAskew »

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

Post by badnights »

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

Appropriate Use of Opioids in Treating RLS This first one is related to augmentation because the most effective treatments for the symptoms of augmentation and dopamine-agonist withdrawal are opioids. Here's a link to the fulll text or you can download it here:
The 2021 Updated Algorithm (The Management of Restless Legs Syndrome: An Updated Algorithm). A comprehensive and up-to-date summary of the diagnosis and treatment of WED/RLS, including augmenation. Gives iron its proper place as front-line treatment.
2021 _Updated Algorithm Management RLS.pdf
(176.49 KiB) Downloaded 252 times

2018 Consensus paper on treatment of refractory WED/RLS with opioids. Opioids are usually necessary to alleviate the extra-strong symptoms of withdrawal from a dopamine-type medication, and this paper explains to doctors why opioids are necessary and how to prescribe them.
Silber+ 2018 _Consensus Use of Opioids in RLS.pdf
(273.38 KiB) Downloaded 367 times

The 2018 International RLS Study Group consensus guidelines on IRON TREATMENT for WED/RLS; notes that iron infusions (IV iron treatments) are effective for moderate to severe disease in patients with ferritin up to 300 ng/ml, and oral iron in patients with ferritin up to 75 ng/ml
2018 IRRLS guidelines on iron in RLS-WED.pdf
(1.3 MiB) Downloaded 437 times

2016 editorial: Restless legs syndrome (Willis-Ekbom disease): An urgent need for better treatments
2016 WED need for new treatments -editorial.pdf
(126.47 KiB) Downloaded 341 times
- Advises against using dopamine agonists to treat augmentation in WED/RLS patients. From Sleep Medicine journal.

The RLS Foundation's brochures
1. Go to the RLS Foundation website, and hunt around. Some publications are available for non-members.
2. Become a member, log in, click Member Portal at the top, click Publications in the drop-down list, and and scroll through. Some of the brochures are on augmentation:
  • "A Quick Guide to Understanding and Managing Augmentation" is not very helpful - it has basic information that most doctors find online.
  • "Medication Withdrawal after Augmentation" and "Understanding RLS and Augmentation - Frequently Asked Questions" taken together are probably the best of the brochures.
  • "Augmentation: Diagnosis and Treatment" is also pretty good. Note, however, that even though it is technically true that augmentation "typically" takes months to develop, it can happen within days.
3. Scroll farther to Information for Healthcare Providers. The 2021 RLS Medical Bulletin is probably the best single resource to download if you only want to get one.

If you are not a member, go to http://www.rls.org/ and click Join or Renew - the red box at top right.
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@rls.org or (507) 287-6465. It's worth it, to access these and other Foundation publications.

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 409 times

This research paper shows that augmentation due to dopamine medications is very common:
Allen+ 2011 _Augmentation is COMMMON.pdf
(1.98 MiB) Downloaded 341 times

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


ARCHIVED
  • Extract from Clinical Management of Restless Legs Syndrome, 2nd edition, Treating Augmentation section, by Lee, H.B., Buchfuhrer, M.J., Allen, R. and Hening, W.A., 2013 (Professional Communications Inc., USA), p.181-183; treating augmentation and the use of potent opioids:
    extract_Clincial_Mgmt_Augmentation_Treatment.pdf
    (464.2 KiB) Downloaded 364 times
    This book also has the new recommended maximum daily doses of 0.25 mg for pramipexole on p.161-2 & p. 242, and 1.0 mg for ropinirole on p.164 & p. 242. This mulit-authored book would be a good choice to show your doctor.
  • Buchfuhrer's 2012 paper: an excellent review of WED/RLS treatment, including lower recommended maximum daily doses for dopamine agents (0.25 mg for pramipexole, 1.0 mg for ropinirole), a cautionary note about impulse control disorder, treatment of augmentation, benefits of opioids, use of IV iron, combination and rotation of medications, and a recommendation to keep ferritin over 75 ng/ml: Citation: Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790
  • A magazine-style summary of Buchfuhrer's views (see above), from a 2015 issue of in Sleep Review Magazine:
  • The International RLS Study Group's 2015 white paper on AUGMENTATION prevention and treatment, with recommendations to keep ferritin over 50 or 75 ng/ml and transferrin saturation above 20%, and use of opioids in severe cases:
  • This research paper shows that low ferritin is associated with greater RLS/WED symptom severity and increased risk of augmentation: This report was the first to confirm the association between low ferritin and greater chance of augmentation on dopamine agonists.
  • This report from the International RLS Study Group recommends that serum ferritin be at least 75 ng/ml:

Edited for readability -Beth Apr 2014
Edited to add Augmentation extract -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
Edited to add 2016 editorial & to accommodate new RLS.org website -Beth Mar 2017
Edited to add Sleep Review Magazine & extra info for other papers - Beth Sep 2017
Edited to add 2018 Iron Guidelines - Beth Oct 2018
Edited to re-attach all documents, which got lost in the server move - Beth Aug 2020
Edited to add the 2018 consensus paper on opioid treatment, so I wouldn't have to keep looking for it :) - Beth, Jan 2021
Edited to add the 2021 Updated Algorithm and moved some items to new Archived section - Beth, Oct 2021
Edited to change 2017 to 2021 version of the Foundation's RLS Medical Bulletin for Healthcare Providers -Beth, Dec 2021
Edited to add the Opioid paper - Beth, Nov 2022
Last edited by badnights on Tue Jan 05, 2021 4:51 am, edited 1 time in total.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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