FEBRUARY 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Resa

Postby Rustsmith » Fri Feb 15, 2019 6:15 pm

Friday, February 15

Welcome to

Resa, who has faced limitations on what entertainment and events she can enjoy because of the disruption of RLS. She does not sleep well and is unable to tolerate long plane rides.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have so that we can hopefully provide you with some suggestions to improve your quality of 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jools

Postby Rustsmith » Fri Feb 15, 2019 6:45 pm

Friday, February 15

Welcome to

Jools, who had her 1st symptoms during her second pregnancy. She was on DAs for 15 years and suffered terrible augmentation and horrendous withdrawal. RLS still affects her every single day despite opioid meds. She is angry that it is not taken seriously by the medical professions and knows the economic impact of this disease is greater than that of all other neurological diseases combined (EARLS study 2018).

Since you are on an opioid, hopefully you have already participated in the Foundation's opioid advocacy project and have submitted your comments to the federal Health and Human Services Task Force that has been charged with updating the CDC opioid guidelines. If not, either post a note asking what to do or search our files for instructions.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Bh.phxmech

Postby Rustsmith » Fri Feb 15, 2019 9:11 pm

Friday, February 15

Welcome to

Bh.phxmech, who has had RLS since childhood. It effects sleep and is worsening with age. Legs went from constant movement and tingly sensation to just out right pain.

Please post a note telling us what you are doing to manage your RLS. We may be able to offer some suggestions to both reduce the pain and improve your 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Dirk

Postby Rustsmith » Sat Feb 16, 2019 3:45 am

Friday, February 15

Welcome to

Dirk, who as a child, around 10 years old, he would would go with his family to our community’s annual high school musical. This was torture and he always had to excuse himself and walk the dark empty hallways of the school while the show went on. Now in his mid 50s he has a name for what he was experiencing. He still enjoys musicals but has to plan extensively to insure that he can enjoy it.

Please post a note telling us what you are doing to manage, both everyday and for the musicals. We may be able to suggest how you can make it even easier to handle.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jrivory

Postby Rustsmith » Sat Feb 16, 2019 4:12 pm

Saturday, February 16

Welcome to

Jrivory, who has a family member who has suffered with RLS for decades.

Please feel free to post a note asking any questions that you have. We would love to be able to help your family 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to girlsxfive

Postby Rustsmith » Sat Feb 16, 2019 9:52 pm

Saturday, February 16

Welcome to

girlsxfive, who has insomnia and is drugged all the time, so quality of life is not good.

Please post a note telling us what you are taking and the dose. There is no reason to feel drugged all the time, so we should be able to suggest something that you can discuss with your doctor to improve your quality of 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.

Polar Bear
Moderator
Posts: 7619
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to FiveaLife

Postby Polar Bear » Sun Feb 17, 2019 7:47 pm

17th February 2019

Welcome today to:

FiveaLife - who says that sleep deprivation, day time drowsiness, agitation while in close contact with loved ones, and lack of attention and focus has wreaked havoc on professional life and personal life and affected those I love around me including my 3 children and my wife.

We all completely understand how you feel. Please post in the Just Joined Forum and tell us more, including how you have been treatment your rls symptoms. Hopefully we will have suggestions that will 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cjseely1026

Postby Rustsmith » Sun Feb 17, 2019 8:18 pm

Sunday, February 17

Welcome to

Cjseely1026, who has had RLS for over 50 years. She can’t enjoy movies or traveling and it causes her to lose sleep. It’s depressing.

Depressing is one word for it. Please post a note telling us what you are doing to manage so that we can offer a few 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to ginsnews

Postby Rustsmith » Sun Feb 17, 2019 10:15 pm

Sunday, February 17

Welcome to

ginsnews, who has had RLS for 37 years -since age 29. It was years before ginsnews even knew what it was as it was just a horrible inconvenience due to problems sitting through a movie, concert or airflight. Most nights ginsews was up kicking until purely exhausted. This made sleeping with ginsnews's partner nearly impossible. Now, at its worst it moves from legs into arms and neck and can last for hours.

Please post a note telling us what you are currently doing to manage your symptoms so that we can offer some suggestions for improving control of 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.

Polar Bear
Moderator
Posts: 7619
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to R.Connolly

Postby Polar Bear » Mon Feb 18, 2019 3:08 pm

Monday 18th February 2019

Welcome today to:

R.Connolly - who has had RLS for over 25 years and whose symptoms are escalating now.

Please post and tell us how you have been treating your rls symptoms, are you taking medications, tell us what they are, how they have worked for you. We all understand how difficult life is with rls and are here to try and 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Prakash

Postby Rustsmith » Tue Feb 19, 2019 9:23 pm

Tuesday, February 19

Welcome to

Prakash, who used to get a very uncomfortable feeling in both legs especially when sitting. Every so often Prakash would have to get up and walk around to get comfort. And at night would have to stretch to bring relief to fall asleep. Prakash is now on meds, but there are side effects.

Please post a note telling us about the meds you are taking and the dose. We may be able to suggest alternatives meds that you can 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to s3v3n11

Postby Rustsmith » Fri Feb 22, 2019 3:03 pm

Friday, February 22

Welcome to

s3v3n11, who has difficulty resting due to RLS. She takes medication but it doesn’t help very much anymore even after dosage increased. Medicine makes her nauseous.

Please post a note telling us about the medicine and dose that is no longer working. It sounds like you may be experiencing augmentation, a side effect that most doctors are not familiar with. If it is, we can offer some suggestions that should 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to sfisher

Postby Rustsmith » Fri Feb 22, 2019 5:07 pm

Friday, February 22

Welcome to

sfisher, whose daughter has RLS. It is a daily hindrance on her life during school. They are wanting more information and to hear other peoples' stories that have gone through the same thing.

Check out the posts in our Special Populations forum, which is where you will find info on pediatric RLS. Also, take a look at the documents available from the RLS Foundation http://www.rls.org on childhood RLS. The Foundation's Executive Director's daughter has RLS, so this is a topic of special importance to 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.

Rustsmith
Moderator
Posts: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Donredbucks

Postby Rustsmith » Fri Feb 22, 2019 8:28 pm

Friday, February 22

Welcome to

Donredbucks, who has severe RLS and is being treated with Gabapentine and Suboxone, with moderate success. He still has some RLS and some unpleasant side effects.

The general guidance is that your meds should control about 95% of your symptoms, so you might be doing well. Please post a note telling us about your doses and the side effects since that we may 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.

Rustsmith
Moderator
Posts: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Dug

Postby Rustsmith » Sat Feb 23, 2019 12:25 pm

Saturday, February 23

Welcome to

Dug, who has RLS, rather bad case too. Affects him all hours of the day and night. He is hoping to get others' opinions.

Please post a note telling us about your RLS and what you are doing to manage it. We would love to be able to offer you our opinions on what you can do to improve both control and quality of 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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