Welcome to our new October members

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.
badnights
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Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to our new October members

Postby badnights » Sat Oct 01, 2016 10:25 am

Welcome to Hermes, who has fairly mild RLS/WED but wants ways to deal with it.

We have tips and tricks here - a lot of them are in the Forums called Physical Treatments, and Non-Prescription, Supplements, Diet. Another place to check is the Just Joined Forum ,in a topic at the top called A Good Place to Start.

You can browse around and you can post a note. For example you could start a thread (Topic) in the Physical Treatment forum, describe your situation=m and ask if others could share what works for them.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Welcome to wlomax001

Postby ViewsAskew » Sun Oct 02, 2016 6:51 pm

Welcome to wlomax001 who is looking for an alternative to pramipexole (Mirapex in the US). Please start a new topic/post and tell us what is happening and we can hopefully guide you in the right direction. It depends on the circumstances as what would be a good alternative.

If you happen to be augmenting - which is when a drug such as pramipexole actually makes the RLS stronger/worse - we have very different options than when the drug isn't working as well as you'd like or is causing side effects.
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
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Welcome to btidwell

Postby badnights » Tue Oct 04, 2016 5:20 am

our newest member has had severe repercussions from RLS/WED, including a grinding halt to a fine career and significant financial impacts.

btidwell, please post more of your story by way of an introduction to others, if you feel comfortable sharing it. You'll find - sadly - that you're not alone. But you should also find helpful information that might - just might - improve your life a bit.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
Moderator
Posts: 6810
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Welcome to Ricki, RAD 123, and cfox

Postby Polar Bear » Wed Oct 05, 2016 10:29 pm

Welcome to:

Ricki - who has had RSL for almost thirty years and appreciates the research and advocacy of the foundation! He is continually on the search for help and have, at least for now, a regimen that has helped him and which he would like to share.

We are all keen to learn what helps and look forward to hearing of your working regimen.


Also welcome to:
RAD 123 - who has been battling RLS for the last five years. It has slowly but surely gotten worse. The side effects from the medication or almost as bad as the affliction itself. RAD is very open-minded and have tried most everything.
Also:
cfox - who finds this conditon has made it very hard to read long books or even sometimes magazine articles, and cfox would like to hear other people's experiences with various remedies.

Take a look around and when you're ready just join onto a relevant thread, or start your own. Feel free to ask questions.
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

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to jay9241 and Silver82

Postby Rustsmith » Thu Oct 06, 2016 2:26 am

Wednesday, October 5

Welcome to

jay9241, who wants to learn more about RLS as a disease.

and to

Silver82, whose condition was mysterious, exhausting, and exasperating until she found out that it could be related to restless leg syndrome. It has caused her not only lost sleep but destabilized moods and other health effects. It has also already cost thousands of dollars.

Please take a look around and then post a note telling us a bit more about yourself and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Polar Bear
Moderator
Posts: 6810
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to dscorbin75, circio5315, MarkinCorning, Zephyr

Postby Polar Bear » Thu Oct 06, 2016 7:36 am

Welcome to:

dscorbin75 - who has had RLS as long as can be remembered. It has affected traveling, relaxing and sleep.

circio5315 - who wants the opportunity to share information about experiences with RLS and learn from others' experiences. RLS came on every day for circio5315 following retirement. No idea why. RLS won't allow a nap in the afternoon without the "feeling' coming on. circio5315 says - Life's just not fair.

MarkinCorning - whose life has been affected in unknown ways since the lack of a good night's sleep makes it hard to think straight.

Zephyr - who has augmented on all the medications, including tramadol and neupro. The medication now on, Zephyr cannot get easily or at all in any countries as Zephyr like to travel. Zephyr also has Sjogrens and considers the RLS worse, as in the way it affects life.

Useful information can be found in the Just Joined - Managing Your RLS. There is also a section on Augmentation. We look forward to hearing how you have all coped with your symptoms so far. All of us here understand the frustrations of lack of sleep and how RLS affects our life and that of those around us.
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

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to SAS50, gap1022, debidew

Postby Rustsmith » Thu Oct 06, 2016 5:51 pm

Welcome to

SAS50, whose world is RLS, whose family worries and is deeply concerned and wants to help. The family is on a timetable and when augmentation begins...they walk and stand with SAS50 until all hours of the night and day.

gap1022, whose RLS is caused many sleeping issues, has been painful, and is progressing.

debidew, who has suffered with RLS for years and would like to keep abreast of any new developments.

Take a look around and then please post a note telling us a bit more about yourself and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to Cladwell and KarlGruber

Postby Rustsmith » Fri Oct 07, 2016 7:56 pm

Friday, October 7

Welcome today to

Caldwell, who believes Ropinerole is no longer working Caldwell's physician is clueless about RLS, so information is needed. Caldwell was delighted to discover this website & hopes it will be helpful. Caldwell also lives in Canada where RLS is a virtual unknown.

Take a look around, especially the forum on augmentation. You may also want to take a look at the Foundation's website (http://www.rls.org) for their information on augmentation, including a white paper for your doctor.

and to

KarlGruber, who has had RLS for more than 25 years and has learned a few thing to share. And, if anyone finds a cure, KarlGruber wants to be the first to know!

We look forward to seeing your post. And as far as knowing about a "cure", you'll need to stand in line for that one. :lol:
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to ewalsh and shjajo

Postby badnights » Sat Oct 08, 2016 8:24 am

Welcome to ewalsh who was using Mirapex but found it has stopped working.

We sure do need better ways to treat this disease! When you say Mirapex doesn;t work as well, what is happening? Are your symptoms starting up earlier in the day? Are they so intense that your Mirapex dose doesn't cover them? There is a phenomenon called augmentation that happens with the dopamine medications like Mirapex/pramipexole. It's a worsening of the disease that's caused by the medication that is supposed to help it, The worsening usually goes away once the offending medication is stopped. There are some links in my signature about it.

welcome to shjajo, who takes Requip and has found msg to be a trigger, along with some preservatives.

Augmentation is always a concern for people on dopamine medications - have yout symptoms been getting worse since you started the Requip? There is much discussion about possible dietary triggers- you can contribute to discussions in the Non-Prescription forum.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to Ganymede

Postby Rustsmith » Sat Oct 08, 2016 2:52 pm

Saturday, October 8

Welcome to

Ganymede, whose RLS affects life in many ways with lots of sleepless nights. It's almost impossible to go to the cinema, theatre or restaurants. The same applies to car trips.

Your experience reflect that of all of the rest of us. Take a look around and then please post a note about yourself and with any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to Pscs

Postby Rustsmith » Sun Oct 09, 2016 12:24 am

Saturday, October 8

Welcome to

Pscs, who has RLS and is out of ideas and options and is therefore looking for Help!

Take a look around and then please post a note telling us about what you have tried and the problems that you face so that we can offer some suggestions. Our experience has been that there is always something else to try.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Polar Bear
Moderator
Posts: 6810
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Welcome to Bladieh

Postby Polar Bear » Sun Oct 09, 2016 10:48 pm

Sunday 9 October

Welcome today to:

Bladieh - who has suffered RLS for a long time. Bladieh is now 64 years old and has been taking Sifrol for many years, but has since last week Wednesday been taking less and less due to augmentation. Not getting any sleep at the moment and finds it hard to stay positive. To read about others experiment he same would be helpful.

Augmentation isn't much fun. We have a forum Topic of the Year - Augmentation which has lots of information. Please post when you are ready and ask any questions that come to mind.
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

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to our new October members

Postby Rustsmith » Mon Oct 10, 2016 2:32 am

Sunday, October 9

Welcome to

concretecrumble, who has had RLS for about a decade and is seeking support groups and information from other people who experience RLS

You have come to the right place. Take a look around and then please post a note telling us about yourself and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to Shar64

Postby Rustsmith » Mon Oct 10, 2016 5:21 pm

Monday, October 10

Welcome to

Shar64, who was recently diagnosed with RLS and the pain is so intense that she is reaching out to find out what others with this diagnosis are experiencing and what solutions might be working for them. She also wants to see if her symptoms are like others with RLS.

Please post a note telling us more about your diagnosis, your symptoms and the treatment plan that your doctor has provided so that we can offer you our comments and suggestions.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Welcome to seethedawn

Postby Rustsmith » Tue Oct 11, 2016 12:25 pm

Tuesday, October 11

Welcome to

seethedawn, who was writing at 3:50 AM and need to sleep by daylight.

Hope you were able to get some sleep before dawn. Please post a note telling us about your RLS and asking any questions that you have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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