JUNE 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.
Rustsmith
Moderator
Posts: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Alladin Sane

Postby Rustsmith » Tue Jun 19, 2018 12:15 pm

Tuesday, June 19

Welcome to

Alladin Sane, who is a long time sufferer of RLS who is wanting to know more.

Please post a note telling us about your symptoms, what you are currently doing to manage and asking any questions that you have so that we can add to what you know about RLS.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Billj

Postby Rustsmith » Tue Jun 19, 2018 6:26 pm

Tuesday, June 19

Welcome to

Billj, who suffers from RLS every evening and hasn’t slept more than 5 hours a night for the last three months.

Please post a note telling us what you are currently doing to treat your RLS so that we can offer some suggestions to discuss with your doctor.
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: 7162
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to MBB1921

Postby Polar Bear » Tue Jun 19, 2018 7:21 pm

Tuesday 19th June 2018

Welcome to:

MBB1921 - who has signed up for my 97-year-old mother as mother's RLS is now extremely debilitating. Mother used to be able to overcome her RLS by walking or lying down, plus traditional meds for RLS. Now she is having it for hours with no relief and it is keeping her up for hours at night.

Thankyou for signing up on behalf of your mother and we will try to help. It will help us if you let us know what medications your mother is taking at present and if possible, what she has already tried. It sounds like it might possibly be Augmentation and you can read about this in the Augmentation Forum. Please start a thread in the Just Joined Forum and tell us what is happening so that we can help.
Thank you for joining on behalf of your mother, some people don't understand RLS and your mother will appreciate your support.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Loonlady

Postby Rustsmith » Wed Jun 20, 2018 8:11 pm

Wednesday, June 20

Welcome to

Loonlady, who has had Rls for several years & it is getting much worse & harder to manage, so she needs correct & current drug management.

Please post a note telling us about your current medications so that we can offer you some specific suggestions to discuss with your doctor.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to David Markle

Postby Rustsmith » Thu Jun 21, 2018 1:05 pm

Thursday, June 21

Welcome to

David Markle, whose RLS was treated successfully for 10 years with Mirapex. Then came augmentation with severe symptoms leading to severe sleep deprivation.

Please post a note telling us what you are currently doing to treat 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.

Rustsmith
Moderator
Posts: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Janet Sinsel

Postby Rustsmith » Thu Jun 21, 2018 11:55 pm

Thursday, June 21

Welcome to

Janet Sinsel, who has had RLS for 42 years and treatment with Vicodin has been the most successful. Both Requip and Mirapex have made her ill. Her doctor is having to stop prescribing opiates, and she doesn't think he is very knowledgeable about RLS. So, she wants information about alternate treatments so that she can discuss them during her next appointment.

Please post a note summarizing your past treatments and asking any questions that you have so that we can provide you with the information that you need for that next appointment.
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: 7162
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to MarkOttenberg

Postby Polar Bear » Fri Jun 22, 2018 10:25 pm

22 June 2018

Welcome today to

MarkOttenberg - whose RLS is worsening and current sleep doctor is clueless how to deal with the condition. For health reasons It seems impossible to ingest sufficient iron and a series of 4 iron infusions, while momentarilly effective, did not hold and kicked the red blood cell production even higher.
MO spends around 12 hours a day trying to get sufficient rest and this is keeping MO from being holding a job, and otherwise being fully functional.

You have come to the right place. Please make a post telling us how you have managed in the past and about your current treatment. It is an awful condition to be trying to manage and we do try to help and discuss alternative options.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Bridgercan

Postby Rustsmith » Sat Jun 23, 2018 8:23 pm

Saturday, June 23

Welcome to

Bridgercan, for whom because of its severity, RLS has become an unchosen full-time vocation with large parts of the day and night spent managing symptoms. Bridgercan's symptoms in the last two months went from well-managed on pramixepole to completely unmanaged, resulting in severe symptoms and severe lack of sleep. It has had an enormously negative impact on life, affecting work, enjoyment of life, and Bridgercan's marriage, and that is the one thing that saddens the most is the strain it puts on both spouse and relationship.

Please take a look at our forum on Augmentation since you sound like an excellent candidate. And please post a note telling us about the dose of pramipexole that you are (or have been) taking so that we can offer some suggestions to discuss with your doctor.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to nancobb22

Postby Rustsmith » Sat Jun 23, 2018 8:26 pm

Saturday, June 23

Welcome to

nancobb22, who has lived and coped with RLS from the time she was in her early 20's to her present age of 80. She is constantly striving to improve and understand this condition that worsens with age. Fortunately some medications and life style ideas have come with the passing of time, but there is always new information and hope.

Please post a note to give us an idea of what you are currently doing to manage your symptoms. 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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jcsherwin

Postby Rustsmith » Sat Jun 23, 2018 10:53 pm

Saturday, June 23

Welcome to

jcsherwin, who after going through 2 episodes of 4 nights of sleeplessness and wondering if she would lose her mind decided to look at the internet. She found RLS.org and through them a contact for a support group. Through the support group contact, the RLS website and this discussion board she hopes to learn a lot more about this disease and how to get some relief from it.

We are glad that you found us. Please post a note telling us about your symptoms and whether you are currently doing anything to manage them. We would love to be able to offer some suggestions for improving your situation and to answer 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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Institches

Postby Rustsmith » Wed Jun 27, 2018 12:23 pm

Wednesday, June 27

Welcome to

Institches, who has had RLS since her 20’s in pregnancy. Now she is in her 50’s & after many sleepless nights & has been on pramipexole for quite a few years. The RLS is getting worse again & it’s time to come off the pramipexole. Any help is welcome.

Take a look through our forum on augmentation to find out about your options for getting off of pramipexole. And please post a note telling us about your current symptoms and pramipexole dose so that we can offer you some specific comments.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to PS HANSEN

Postby Rustsmith » Wed Jun 27, 2018 7:05 pm

Wednesday, June 27

Welcome to

PS HANSEN, who has severe insomnia, is up walking at night often 5-6 hours and is therefore exhausted

Please post a note telling us what you are doing to manage your RLS (other than walking at night). We may be able to offer 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.

Rustsmith
Moderator
Posts: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to walkerbyrd

Postby Rustsmith » Wed Jun 27, 2018 9:10 pm

Wednesday, June 27

Welcome to

walkerbyrd, who needs help/suggestions from other RLS sufferers in how they cope with RLS. walker now has to carefully select daily activities to attend and be part of and it has lessened walker's quality of life.

Please post a note telling us what your current RLS management (especially meds) looks like so that we can offer you some suggestions to improve the quality of your life.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Sequoiah66

Postby Rustsmith » Wed Jun 27, 2018 10:06 pm

Wednesday, June 27

Welcome to

Sequoiah66, who has unusual RLS. Sequoiah has low Iron, but high red blood cell count. The latter is possibly due to larger than usual erithropoetin coming from kidney mass (Polycystic Kidney Disease PLUS transplanted kidney). Adding iron causes more RBC. Which is already TOO HIGH and makes for a fun catch 22.

For some of us, increasing ferritin doesn't help with our RLS, so it doesn't always improve things. Please post a note telling us what you are currently taking to manage your RLS, we may be able to offer some suggestions to improve the situation with your RLS.
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: 3178
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to murb1

Postby Rustsmith » Thu Jun 28, 2018 12:30 pm

Thursday, June 28

Welcome to

murb1, whose RLS is such that he can’t sleep with his wife and has to sleep in another room.

Please post a note telling us what you are currently doing to manage your RLS. Many of us have been in your situation and there are things that can be done so that you can sleep together.
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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