MARCH 2018 - NEW 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: 4907
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

MARCH 2018 - NEW MEMBERS

Postby badnights » Fri Mar 02, 2018 6:01 am

Welcome to sleejennings, who has suffered for years and now watches a 20-yr old daughter augmenting from Mirapex.

Tell us a little about yourself, how you have found relief, and the issues you and your daughter are facing. There is a lot of information tucked away on this site; browse around, ask questions and share your own advice.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to SDA

Postby Rustsmith » Sat Mar 03, 2018 12:00 am

Friday, March 2

Welcome to

SDA, who is a director of Sleep Disorders Australia. She would like to hear from people with RLS so that she can better help and support RLS sufferers in Australia. On a more personal level, her mother and aunt have RLS. They do not use the internet so she helps them by finding info that may be helpful and relevant to them.

Welcome to the discussion board. Please feel free to post any questions that you have or simply jump into any of our ongoing discussions.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Emmeline5108

Postby Rustsmith » Sat Mar 03, 2018 5:13 pm

Saturday, March 3

Welcome to

Emmeline 5108, who would love to hear how other people are dealing with their RLS. Hers happens at night. She is on Mirapex and it depends on the night if she sleeps or not. She is not sure why this happens and why her RLS is worse some nights other than others. Help!!

Please post a note telling about your symptoms and dose of Mirapex that you are taking and how long you have been on it. We might be able to offer some 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.

Polar Bear
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Posts: 7220
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to Nehart

Postby Polar Bear » Mon Mar 05, 2018 9:28 am

Monday 5 March 2018

Welcome to Nehart - who is starting to feel crazy, sporadic nights when can just sleep without RLS keeping awake for hours. has tried different meds, supplements..nothing helps.

Please go to Just Joined, you can start a thread or join a suitable thread, and tell us what you have tried so far, what hasn't worked and what has 'sort of' worked. Tell us how long you have had RLS. We would like to be able to help and offer some suggestions.
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

badnights
Moderator
Posts: 4907
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to redwings28

Postby badnights » Mon Mar 05, 2018 9:01 pm

Welcome to redwings28, who has WED/RLS and would like to know how other people deal with it.

redwings, you can browse around, start a topic to tell us a bit about yourself, or post on existing topics. Hopefully you will feel at home. There is a Topic in this forum (Just Joined) called A Good Place to Start, and that would be a good place to browse through especially if you're just learning about the disease.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to westkari

Postby Rustsmith » Tue Mar 06, 2018 1:27 pm

Tuesday, March 6

Welcome to

westkari, who suffers from RLS and takes medication for it but it is not working well and is therefore looking for alternatives to treatment.

Please post a note telling us about the medication that you are currently taking (with the dose), so that we can offer you some suggestions about alternatives.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to BarryO

Postby Rustsmith » Wed Mar 07, 2018 7:46 pm

Wednesday, March 7

Welcome to

BarryO, whose RLS causes sleep deprivation, which in turn lead to many negative quality of life and health consequences. Rx's have not worked for his, so he is still suffering. So, he is trying to become educated to better lead his own future.

Please post a note telling us a bit about your symptoms and what treatments that you have tried. Our experience has been that there is always something else to try, often with better results.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to 33Coursey

Postby Rustsmith » Thu Mar 08, 2018 3:07 pm

Thursday, March 8

Welcome to

33Coursey, who is a newbie to this disease and looking for support.

Please post a note telling us a bit about your RLS and what you are doing to manage it. We would love to be able to help you out.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Dzina

Postby Rustsmith » Fri Mar 09, 2018 1:18 am

Thursday, March 8

Welcome to

Dzina, whose RLS has impacted sleep as well as comfort level when reading/watching TV in the evening. It has been pretty successfully treated by PCP but had to change PCP's and now the new one is very reluctant to continue with that treatment, so now Dzina is pursuing finding out more about the condition.

After you have a chance to look around, please post a note telling us about your RLS and the what you were doing to manage it. That way we can offer suggestions for you to discuss with your new PCP.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to wishfull

Postby Rustsmith » Sun Mar 11, 2018 1:44 pm

Sunday, March 11

Welcome to

wishfull, who is 78 years and has been suffering for many years with RLS, seeing doctors, had a sleeping test in clinic and used tramozol and now Sifrol for two years. Good results until some months ago. sometimes wishfull takes 1 1/2 sifrol and has a good night. Most of the time 1 tablet is not enough and the nights are horrible. wishful's weight has climbed due to eating at night. It is very reasonable during the day but can be hungry two hours after taking sifrol.

The eating side of your question sounds like an impulse control issue that can be caused by the Sifrol, which is a fairly common side effect. As for the required increase in dose, that sound like it could be the beginning of augmentation. You can read about Augmentation in our forum on that topic. Both of these issues may be reasons to switch from Sifrol to something else. So you should bring these issues up with your doctor as soon as possible.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to gregboehmer

Postby Rustsmith » Sun Mar 11, 2018 2:24 pm

Sunday, March 11

Welcome to

gregboehmer, who in addition to RLS, has other medical conditions that are eroding his quality of life. The sleep deprivations caused by the RLS is devastating.

Please post a note telling us a bit about your situation and what you are doing to manage your RLS. We would love to be able to help, if possible.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Wandering3

Postby Rustsmith » Thu Mar 15, 2018 3:01 am

Wednesday, March 14

Welcome to

Wandering3, who has had RLS for 30 years. It is getting worse and harder to find meds or other ways to control it. Wandering is often too tired to enjoy family or to have a meaningful lifestyle, sees fewer people, travels very little and have given up a favorite volunteer job.

Please post a note telling us about what you have been trying in the way of meds. Experience shows that there is almost always another option 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.

Rustsmith
Moderator
Posts: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to agarcia

Postby Rustsmith » Fri Mar 16, 2018 11:12 pm

Friday, March 16

Welcome to

agarcia, who was diagnosed with RLS over a decade ago and it impacted him in several ways. In sports, He had physical lows and highs over the season, with muscular injuries occurring in "bad" times. At school & university, it made it hard to focus, staying awake in classes and even impacted his memory. At work was not too different. As a father, keeping regular routines and exercising has become harder, making it worse.

Please post a note telling us a bit about your RLS symptoms and what you are doing to manage them. And feel free to ask 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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Ibesbaby27

Postby Rustsmith » Mon Mar 19, 2018 5:58 pm

Monday, March 19

Welcome to

Ibesbaby27, whose RLS HAS TAKEN OVER LIFE. Ibesbaby has been getting some relief from Fentynl patches for 10 years and is now losing them because the opiod crisis. Ibesbaby is scared because of fear to continue working without the patches and I would go anywhere to try anything.

Although you may be get the patches, if you go to one of the Foundation Quality Care Centers, you should be able to get access to an opioid to treat your RLS. The experts at these centers understand the need for opioids to treat severe RLS. To find the Center that is most convenient to you, go to www.RLS.org and click on the Treatment pulldown. Also, please post a note telling us about your symptoms, we may be able to offer you some other suggestions to consider trying. There is no cure for RLS, but there are ways to manage.
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: 3330
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Bwb

Postby Rustsmith » Wed Mar 21, 2018 1:42 am

Tuesday, March 20

Welcome to

Bwb, who has had RLS for over 20 years and is seeking support.

Please post a note telling us about your symptoms, what you have done to manage them and asking any questions that you have. We would love to be able to not only provide you with some support but also maybe even some suggestions for improvement.
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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