AUGUST 2019 - 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.
Rustsmith
Moderator
Posts: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Dayana

Postby Rustsmith » Sun Aug 11, 2019 1:34 pm

Sunday, August 11

Welcome to

Dayana, whose RLS about four years ago as a minor and occasional disturbance to her sleep and became a permanent discomfort. Sometimes she cannot get to sleep, other times she has to wake up in the middle of the night even when she is very sleepy, and most recently she apparently suffered augmentation from taking Pramipexole and was not able to sleep for three whole days. After a bunch of medical exams and about eight doctors that saw her, a Neurologist finally diagnosted her with RLS. She had passed through all kinds of theories or no clue doctors, from a diagnosis of Fibromyalgia through "try to forget about the pain and maybe it will go away" (these were words of a Neurologist).

Welcome to the group. Many of us had similar experiences along our path to a diagnosis. It is VERY unfortunate that there are so few doctors who know anything about RLS, which forces us to be become the experts about this disease. So, if you have any questions, please post a note so that we can try 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Moonraker

Postby Rustsmith » Sun Aug 11, 2019 8:54 pm

Sunday, August 11

Welcome to

Moonraker, whose father has RLS and he is in early stages. It has kept him from getting deep sleep and he has to stand up at some work meetings. Exercise helps, he has a Cpap but needs more day-to-day strategies to get better sleep. Hoping to learn from this site.

We can definitely help with coping strategies. If you will post a note with any questions that you have, we will all be happy to contribute.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Kathymike2

Postby Rustsmith » Sun Aug 11, 2019 8:56 pm

Sunday, August 11

Welcome to

Kathymike2, who has RLS and is looking for strategies to help with this problem and with sleep.

Please post a note telling us what you are currently doing to manage your RLS so that we know where to start with our 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Pleasuredeal

Postby Rustsmith » Mon Aug 12, 2019 1:53 pm

Monday, August 12

Welcome to

Pleasuredeal, who had severe side effects from pramipexole, including Augmentation . Taking the medication made things a lot worst .

Please post a note telling us if you are now post-augmentation, what you are currently taking 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Helena pepper

Postby Rustsmith » Wed Aug 14, 2019 3:15 am

Tuesday, August 13

Welcome to

Helena pepper, who has been tortured with this condition for years and it is affecting her mental health ..

We all understand your situation. Please post a note telling us what you are doing to manage so that we can offer some suggestions to improve your sleep and regain your mental health.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to eileen

Postby Rustsmith » Wed Aug 14, 2019 4:34 pm

Wednesday, August 14

Welcome to

eileen, who is tired and cranky from lack of good sleep.

That is something that we can all relate to. Please post a note telling us what you are doing to manage your RLS so that we will be able to know what to suggest that you can 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jeanneb

Postby Rustsmith » Wed Aug 14, 2019 7:06 pm

Wednesday, August 14

Welcome to

jeanneb, who since going through augmentation 18 months ago, her RLS has caused a dramatic change in her life. Her RLS is severe, and she is not able to tolerate any of the other medications that have been prescribed for her.

If you will tell us about the meds that you have not been able to tolerate, perhaps we can suggest something that has a better chance of working.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Gersen

Postby Rustsmith » Wed Aug 14, 2019 11:18 pm

Wednesday, August 14

Welcome to

Gersen, who suffers from *very severe* RLS, which has progressed into involuntary violent leg spasms and jerking. It has become absolutely intolerable. Gersen needs to find out about any type of treatment that might help to alleviate this condition as it is having a terrible effect on life.

Please post a note telling us what you are currently doing to manage your RLS. Many of us also qualify as having very severe RLS and have been able to find help.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to emmakittykat

Postby Rustsmith » Thu Aug 15, 2019 1:40 pm

Thursday, August 15

Welcome to

emmakittycat, who has recently developed RLS and is looking for others with it to discuss ideas.

We would be happy to discuss ideas or answer any questions that you have. Please post a note or join 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mac

Postby Rustsmith » Thu Aug 15, 2019 3:28 pm

Thursday, August 15

Welcome to

mac, who is experiencing pain in legs and arms during both day and night. Sleep is affected, get up early and lots of tossing and turning. Experience fatigue during the day.

Please post a note telling us what you are doing to manage your symptoms so that we can know where to start with our suggestions to you.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to konaPel

Postby Rustsmith » Thu Aug 15, 2019 10:39 pm

Thursday, August 15

Welcome to

konaPel, whose RLS affects her sleep and with already having depression she finds the loss of sleep brings her down lower than if she didn’t have depression. She already has to deal with low energy from depression and it’s very hard to add more getting enough sleep on top of that.

Are you taking an anti-depressant that could be triggering the RLS. Please post a note telling us what you are doing for your RLS so that we can 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.

Rustsmith
Moderator
Posts: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to BrendaSmetak

Postby Rustsmith » Fri Aug 16, 2019 2:15 pm

Friday, August 16

Welcome to

BrendaSmetak, who has had RLS since she was in her 30's. She is now 52 and is joining to not feel like she is suffering through this alone. She does not have a support team.

You are definitely not alone in your struggle with RLS. Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions or simply moral support.
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: 7527
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome RLS4thewin

Postby Polar Bear » Sat Aug 17, 2019 5:00 pm

Saturday 17th August 2018

Welcome today to:

RLS4thewin - who I thinks he/she is one of the lucky ones because RLS is only horrible from about 7:00pm on. But, after 7:00 is unable to do anything but pace the house and hope for some sleep. Just started meds and hoping for help

Please post in the Just Joined Forum and tell us about your symptoms and your medications. We all understand how difficult this disease is and hope to help you.
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

Polar Bear
Moderator
Posts: 7527
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to adi2019

Postby Polar Bear » Sun Aug 18, 2019 11:22 am

Sunday 18th August 2019

Welcome today to:

adi2019 - who I have a very unusual situation. RLS was diagnosed only one year ago and that makes it tough because adi2019 has also Amyloidosis (a strange protein attacking his/her organs).
No sleep, and RLS pills stopped helping.

Please do post in the Just Joined Forum, tell us how you have coped to date so that we know where you are at.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to missy1462

Postby Rustsmith » Mon Aug 19, 2019 1:53 am

Sunday, August 18

Welcome to

missy1462, who has RLS and is searching for answers.

If you will post a note with any questions that you have, we could be happy to try to answer them.
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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