OCTOBER 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.
Polar Bear
Moderator
Posts: 7222
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

OCTOBER 2018 NEW MEMBERS

Postby Polar Bear » Mon Oct 01, 2018 9:41 am

1 October 2018

Welcome today to

lucyjane - who has have suffered with RLS all her life but has found it worsening with age. Causes less sleep and takes its toll. Her Grandmother suffered terribly with RLS too.

Welcome to our discussion board. Please do read the Just Joined Forum and if you make a post we will do all we can to help.
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to kilzok

Postby Rustsmith » Mon Oct 01, 2018 10:55 pm

Monday, October 1

Welcome to

kilzok, whose harms my sleep. Also, other strange symptoms have appeared.

Please post a note telling us about these other symptoms and what you are doing to manage them. Sounds intriguing.
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Christar

Postby Rustsmith » Mon Oct 01, 2018 11:46 pm

Monday, October 1

Welcome to

Christar, whose RLS results in daytime movies, early flights, lots of hot baths and prayers for a few good hours of sleep. RLS.org helps Christar not feel alone in the craziness! ❤️

Please post a note telling us about your symptoms and how you manage them (other than hot baths and prayers). We should be able to offer some suggestions to consider for further 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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to blake1960

Postby Rustsmith » Thu Oct 04, 2018 2:14 pm

Thursday, October 4

Welcome to

blake1960, who is going on ten years of RLS now. blake1960's father, 94, has been taking medication since age 65, but blake got started early (age 48). It has created a special bond between the two, as they understand how frustrating RLS can be, while the other siblings continue to be symptom-free. blake1960 is so very thankful for ropinirole and the relief that it can provide, but it is a daily issue, as the early evening hours are often spent standing or walking around the house, and blake's internal "alarm clock" is often the RLS waking blake up between 3:30 am - 5 AM every day. The loss quality sleep time can be debilitating some days.

Happy to hear that ropinirole is still working for you. Please post a note telling us about your dose 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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Loral1219

Postby Rustsmith » Thu Oct 04, 2018 3:24 pm

Thursday, October 4

Welcome to

Loral1219, whose RLS deprives Loral of sleep. Long car rides are tougher, can only fly early morning or not at all. Loral doesn't go to the movies and is
am walking around the house just to stay sane.

Please post a note telling us if you are taking any medication to help with your RLS and asking any questions that you have so that we can provide some suggestions for improving your situation.
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mlk17

Postby Rustsmith » Thu Oct 04, 2018 8:05 pm

Thursday, October 4

Welcome to

mlk17, who has been on ropinerole for 18 years with great relief, but she believes she is now dealing with augmentation. So, she is waiting for appt with a specialist.

Please post a note telling us about your current ropinerole dose and the symptoms that lead you to believe that you are augmenting. We can offer some comments that may help you decide if that is true.
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jdgeorge

Postby Rustsmith » Thu Oct 04, 2018 11:42 pm

Thursday, October 4

Welcome to

Jdgeorge, who has had RLS for 20 years. She just attended the conference in LaJolla and was inspired to connect with others.

Hope you had a chance to meet at least a couple of the moderators who were also at the conference. Please post a note telling us a bit about your RLS and what you are doing to manage it so that we can get an idea of the issues that you currently face.
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Mcuseo

Postby Rustsmith » Fri Oct 05, 2018 3:32 pm

Friday, October 5

Welcome to

Mcuseo, who has had RLS since childhood and is now in the 60s. Managed by meds but still have sleep issues.

Please post a note telling us a bit about your symptoms and what you are doing to manage them so that we might 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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to TxPat

Postby Rustsmith » Sun Oct 07, 2018 1:54 pm

Sunday, October 7

Welcome to

TxPat, who has several symptoms of RLS. The most troubling is the unrelenting torture that disrupts sleep which, in turn, disrupts Pat's life.

Please post a note telling us more about your symptoms and what you are doing to manage them. We can often make suggestions that will improve the control of your RLS and give you more sleep.
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mlc470

Postby Rustsmith » Sun Oct 07, 2018 4:30 pm

Sunday, October 7

Welcome to

mlc470, who has been diagnosed with RLS, though mlc's neurologist doesn't understand some of the symptoms. Would like to talk to people who have similar episodes. Feel a bit at a loss.

Please post a note telling us about these symptoms as well as how your neurologist is treating your RLS so that we can offer our comments and share your experiences with 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.

ViewsAskew
Moderator
Posts: 15302
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Welcome to s14james

Postby ViewsAskew » Tue Oct 09, 2018 1:52 am

8, Oct - Monday

Welcome to s14james, who has been struggling with RLS/WED all his life and is hoping to find more solutions.

So sorry to hear it's been so long, s14james. Poke around, read the "sticky" posts, ask questions. We'll help any way we can.
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.

Rustsmith
Moderator
Posts: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Meg1994

Postby Rustsmith » Tue Oct 09, 2018 12:37 pm

Tuesday, October 9

Welcome to

Meg1994, has had RLS since she was 10. She is 42 now and it is very severe. It is now in her arms as well as her legs. She hse been on every medication available and nothing helps. She has tried so many natural things and nothing helps. Morphine is the only thing that even touches it, now her doctor is telling her that they are taking her off morphine because it is not a cure, it just covers it up. She is so scared of not being able to have anything to help. Hers is an every night problem and sometimes during the day. She has been to so many doctors and none of them believe or understand how bad this is.

We totally understand and many of us have been in your position. Please post a note so that we can offer you some specific suggestions to help find some relief.
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Smdavid6412

Postby Rustsmith » Tue Oct 09, 2018 12:39 pm

Tuesday, October 9

Welcome to

Smdavid6412, whose RLS has progressed from a nuisance to a life altering problem. She was thrilled to find RLS.org to help find answers and relief.

Please post a note telling us what you are doing to manage your RLS and asking any questions 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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Sentimental01

Postby Rustsmith » Fri Oct 12, 2018 3:49 am

Thursday, October 11

Welcome to

Sentimental01, whose RLS has made it difficult to participate in some activities, especially in the evening. Of course, it has affected sleep. It has made it difficult to travel. The side effects of the medication makes it more difficult to concentrate and remember things. Sentimental would love to know how others are coping and what new treatments are being used to manage this disease.

Please post a note telling us about the treatments you have tried and your symptoms so that we can offer you offer you some comments. As for new treatments, take a look at the discussion of what was presented at the recent RLS Patient Conference http://bb.rls.org/viewtopic.php?f=5&t=10298
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: 3347
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Sherryl

Postby Rustsmith » Sat Oct 13, 2018 1:05 am

Friday, October 12

Welcome to

Sherryl, whose quality of life has been dramatically reduced with increasing symptoms of RLS. The medications she is trying make her so tired it has added to depression.

Please post a note telling us what you are taking (and the dose) so that we can offer you some suggestions for things to discuss with your doctor to improve 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.


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