Useful websites

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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Rubyslipper
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Useful websites

Postby Rubyslipper » Sat May 29, 2004 2:38 pm

This a a new website I found where you can flag certain items of info you are interested in. When that item comes up in the news, an e-mail with the link comes to you. I have requested info on RLS and it is pretty neat. Of course, not all info really relates to me personally but it is a great way to find out the newest developments or ideas about it. Anyway, the website is http://www.google.com/alerts . I'm not smart enough to figure out how to make this address into a direct link to the site. Also thought maybe it would be a good idea to have a thread just for useful websites we have found.

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sardsy75
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Good RLS Sites

Postby sardsy75 » Sun May 30, 2004 1:20 pm

NOTE: KEEP READING DOWN THIS POST AS MORE LINKS HAVE SINCE BEEN ADDED

Below are some links to some excellent RLS sites, including medications & treatments:

General RLS Information

http://www.wemove.org/rls/
[non-working link removed]
http://www.rlshelp.org
http://www.sleepnet.com/disorder.htm
http://www.rls.org

RLS Treatment Information

[non-working link removed]
http://www.rlshelp.org/rlsrx.htm

Fighting RLS with everything else

http://members.cox.net/gunzel/rls.html

You might find it helpful to print out any information you think is important and put it together in a folder. If you're GP/Neurologist doesn't know much about RLS, they should be open to learning about it and helping you out.

I highly recommend the rlsrebel site. It has very practical information for "combat techniques"!
Last edited by sardsy75 on Sat Jul 23, 2005 9:36 am, edited 6 times in total.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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sardsy75
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For the Mulitude of Newbies

Postby sardsy75 » Sun Jul 25, 2004 4:20 am

NOTE: KEEP READING DOWN THIS POST AS MORE LINKS HAVE SINCE BEEN ADDED

With the influx of "newbies" coming through our "doors" in recent weeks, I thought it was about time to bring this "topic" back to the top of the forum list.

In addition to the links in my prior post I thought it might be helpful to add a few quick-links to various parts of the RLS Foundation Site:

1. Healthcare Provider Directory

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=471

To better serve its members, the RLS Foundation maintains a directory of healthcare providers who specialize in the treatment of RLS. The directory is organized in several formats. If you are trying to locate a new provider in your area, please use the alphabetical listing by state. If you already know the name of the healthcare provider you seek, you may look up the name in the printed directory.


2. Living with Restless Legs Syndrome

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=482

This is aimed at both patients & family members. It is a 16-page booklet describing RLS. Sections include:

Do you have RLS?
Primary & associated features
Cause & age of onset
Diagnosis
Treatment
Summary


3. RLS Foundation Inc. 2004 Medical Bulletin

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=482

This publication is intended for medical professionals. A copy is mailed to all members of the RLS Foundation and is mailed free of charge upon request to member's health care providers. Contents include:

Introduction
Features of RLS
Pathophysiology
Disease
Prevalence
Genetics
Diagnosis
Treatment
Summary
References
Research Grants


4. Special Considerations of the Surgical Team: When a patient has RLS

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=482

This brief publication is intended for medical professionals. Contents include:
Primary RLS Features
Substances that may be useful to treat RLS
Substances that should NOT be given to RLS patients


[non-working link removed]
Last edited by sardsy75 on Fri Nov 26, 2004 9:59 am, edited 4 times in total.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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jan3213
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Postby jan3213 » Sun Jul 25, 2004 12:26 pm

This is Jan

Just had to give you guys a heads up! This is an excellent idea!!

Jan

Sole
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Postby Sole » Sun Aug 22, 2004 3:22 am

Thank you for bumping this, Nadia. I hadn't seen it before.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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sardsy75
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More useful links

Postby sardsy75 » Tue Aug 24, 2004 1:57 am

NOTE: KEEP READING DOWN THIS POST AS MORE LINKS HAVE SINCE BEEN ADDED

Have been ferreting around both this site and the web looking for this and that and have found some more very useful guides:

1. RLS and Depression - Special Considerations in Treating Depression when the Patient has Restless Legs Syndrome

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=482

2. Pregnancy and RLS - Vital Considerations in Treating a Pregnant Patient who had Restless Legs Syndrome

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=482

3. Pregnancy and RLS (Source: The Sourthern California RLS Support Group Treatment Page)

http://www.rlshelp.org/rlsrx.htm#Pregnancy


4. Restless Legs Syndrome - The National Womens Health Information Centre; type in RLS at main search box to find many articles

http://www.4woman.gov


5. Restless Legs Syndrome - MDVU: MD Virtual University (Brought to you by WeMove)

http://www.mdvu.org/library/disease/rls/
Last edited by sardsy75 on Fri Nov 26, 2004 10:00 am, edited 1 time in total.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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sardsy75
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RLS Medical Alert Card

Postby sardsy75 » Tue Aug 24, 2004 7:40 am

NOTE: KEEP READING DOWN THIS POST AS MORE LINKS HAVE SINCE BEEN ADDED

Below is a link to an RLS Medical Alert Card which has been put together by the Southern California RLS Support Group.

This card has valuable information including a list of drugs to be avoided (including antihistamines) for RLS patients and there is space to add your drugs and other medical problems.

http://www.rlshelp.org/RLS%20Medical%20 ... 9-4-02.doc

If you are unable to access the document through this link go to http://www.rlshelp.org scroll down through the Table of Contents and click on Item #16 "Download a free pintable copy of our new RLS Medical Alert Card"

You might want to print a copy out and keep it with you at all times. It will particularly come in handy next time you're at the pharmacy seeking help for a cold/flu or if you are ever in need of a paramedic's assistance.
Last edited by sardsy75 on Fri Nov 26, 2004 10:00 am, edited 2 times in total.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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sardsy75
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Algorithm For RLS

Postby sardsy75 » Sun Oct 03, 2004 8:51 am

LINK TO ALGORITHM FOR MANAGEMENT OF RLS

http://www.mayoclinicproceedings.com/co ... l.pdf+html
Last edited by sardsy75 on Fri Nov 26, 2004 9:58 am, edited 3 times in total.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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sardsy75
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Algorithm For RLS - Part Two

Postby sardsy75 » Sun Oct 03, 2004 8:53 am

SUMMARY OF ALGORITHM FOR MANAGEMENT OF RLS

jumpyowl wrote:Posted: Fri Jul 23, 2004 4:13 am Post subject: I do not want to steal your show

Heron, but I thought I summarize that Mayo article and post it here for convenience. I really like that work and I added a little.

An Algorithm for the Management of RLS

By M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004


INTRODUCTION:

Characteristic symptoms: Limb discomfort and urge to move legs which occurs at rest. Symptoms are relieved by movement and are worst in the evening and night.

Associated afflictions: RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). (BTW the reverse is not true).

Severity: ranges from annoying and infrequent to distressing and daily.

Secondary adverse events: Often RLS is a cause of onset or maintenance insomnia.

Prevalence: 5-15% of population.

Pathophysiology: RLS is familial (50%), or idiopathic or related to acquired conditions (iron deficiency/renal failure).

Regulatory status: FDA has not yet approved any medication for the treatment of RLS, so all the drugs discussed here are off label.


Classification of RLS based on severity:

The article distinguishes between three types of RLS:

Intermittent RLS

RLS that is troublesome enough to require treatment but does not necessitate require daily therapy

Daily RLS

RLS that is frequent and troublesome to necessitate daily therapy

Refractory RLS

Daily RLS that is treated with a dopamine agonist with one or more of the following outcomes:

o Inadequate initial response despite adequate doses

o Response that has become inadequate with time despite increasing doses

o Intolerable adverse effect

o Augmentation that is not controllable with additional earlier doses of the drug



TREATMENTS:


INTERMITTENT RLS

Nonpharmacological therapy

• Determine ferritin level and administer iron replacement

• Mental alerting acitivties to reduce boredom

• Abstinence from caffeine, nicotine, and alcohol

• Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if they can be discontinued.



DAILY RLS

Nonpharmacological therapy

It is the same as for intermittent RLS

Medications

• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)

• Gabapentin/Neurontin (anticonvulsive)

• Low potency opioids (propoxyphene/codein, or opioid agonists,
such as tramadol/Ultram



REFRACTORY RLS

Medications

• Change to gabapentin/Neurontine from dopamine agonist

• Change to a different agonist

• Add a second agent such as gabapentin, benzodiazepine, or an opioid

• Change to high potency opioid or tramadol




ALTERNATIVE, INVESTIGATIVE, OR POTENTIAL FUTURE THERAPIES

The management of RLS continues to evolve as new drugs become available and older ones are prescribed less frequently.

Carbamazepine/Tegretol (an anticonvulsive) and clonidine/Catapres (antihypertensive medications) have been successful in clinical trials but are not commonly used in clinical practice..

Among potential new dopamine antagonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.

Magnesium (ions) has been reported to be effective. In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years.



DIRECT LINK: http://www.mayoclinicproceedings.com/co ... l.pdf+html
Last edited by sardsy75 on Mon Apr 03, 2006 3:59 pm, edited 2 times in total.
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia
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Postby sardsy75 » Thu Aug 18, 2005 1:35 pm

'nuther bump

and while i'm at it ... i'm thinking that it's a pure coincidence that your nic is "trevb" and that you're from england ... and that i know a trev b who lives in england ...
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

trevb
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Postby trevb » Mon Aug 22, 2005 8:33 am

yes pure coincidence im afraid....i know noboby in america. i think there are lots of trev b's in england.
trev :wink:

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sardsy75
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Postby sardsy75 » Mon Aug 22, 2005 11:18 am

i know noboby in america.


interesting ... i don't live anywhere near america :P

if you look under my nic to the left there ... u'll see that i'm from the rather upside-down land of oz :wink:
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Guest

Postby Guest » Mon Aug 22, 2005 3:28 pm

hmmm.. oh yes!
dont know anyone in australia either im afraid!!! like to live there though!!
trev

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sardsy75
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Postby sardsy75 » Wed Aug 31, 2005 2:19 pm

Awwww ... u took all the fun out of "bumpin n nudgin" when u made this a sticky!!!

Just kidding! Good to see it finally at the top for keeps!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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jrowley
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Re: Useful websites

Postby jrowley » Thu Sep 01, 2005 7:12 pm

Rubyslipper wrote:This a a new website I found where you can flag certain items of info you are interested in. When that item comes up in the news, an e-mail with the link comes to you. I have requested info on RLS and it is pretty neat. Of course, not all info really relates to me personally but it is a great way to find out the newest developments or ideas about it. Anyway, the website is www.google.com/newalert. I'm not smart enough to figure out how to make this address into a direct link to the site. Also thought maybe it would be a good idea to have a thread just for useful websites we have found.


Rubyslipper, I just wanted to let people know the right web link to the alerts is www.google.com/alerts hopefully this will put everyone in the right track.


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