MAY 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
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Location: N. Ireland

MAY 2018 - NEW MEMBERS

Postby Polar Bear » Tue May 01, 2018 7:42 am

1 May 2018

Today we welcome -

Christyh - who finds that rls has robbed all quality of life. For almost 20 years Christyh has taken Requip so throws up nightly. It starts earlier now and has moved to the arms. It is difficult to get any doctor to prescribe a low dose opioid not due to abuse. It is maddening and is now affecting employment.

It sounds very much as though you may be suffering from augmentation which is when the symptoms worsen due to the DA medication i.e. your Requip. Take a look at the forum entitled Augmentation where you will see this is a very common issue. Doctors can be very reluctant to prescribe an opioid. Please make a post telling us how you have been coping and what medications you have tried. We are here to help and would hope to be able to give you some useful guidance.
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
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Posts: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Junelake

Postby Rustsmith » Wed May 02, 2018 1:56 am

Tuesday, May 2

Welcome to

Junelake, who has had RLS for 20 years and her Dr recommended the site.

Please post a note telling us about your RLS and what you are doing to manage it. Also, please ask any questions that you have. We would love to be able to 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.

Polar Bear
Moderator
Posts: 7162
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to - RestlessNew England

Postby Polar Bear » Wed May 02, 2018 11:48 am

2 May 2018

Welcome today to:

RestlessNew England - who has had RLS for over 10 years now and is now on 3 mg requip but getting symptoms in arms and symptoms ow occur during the day as well. RestlessNew England is seeking help.

Sounds very much like you are augmenting, this is when your DA medication such as Requip actually makes matters worse. Take a look at the threads about augmentation. It would be good if you would post about your history with RLS and your medication journey. We are here to do our best 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to dory

Postby Rustsmith » Thu May 03, 2018 9:16 pm

Thursday, May 3

Welcome to

dory, who has had bouts with RLS for years. She has anemia, and certain medications like sSSRI antidepressants aggravate the situation.

Please post a note telling us a bit about what you are currently doing to manage your RLS so that we can offer you some specific suggestions. Anemia, antidepressants and first generation antihistamines are all well documented as triggers for 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Ginnyperott

Postby Rustsmith » Fri May 04, 2018 12:39 pm

Friday, May 4

Welcome to

Ginnyperott, who has had RLS for many years. The medicine she takes makes her very sleepy and so she would to know of others’ effects, etc.

Please post a note telling us about your medicine and dose so that we can offer our comments and 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to judyandgene

Postby Rustsmith » Fri May 04, 2018 7:46 pm

Friday, May 4

Welcome to

judyandgene, who has had RLS for many years with apnea as well and so has not been able to sleep more than 4-5 hours per night.

Please post a note telling us what you are doing to manage your RLS and insomnia so that we can offer you 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to donnarivers

Postby Rustsmith » Fri May 04, 2018 9:47 pm

Friday, May 4

Welcome to

donnarivers, who has refractory RLS and at times it controls her life. She has a great doctor who understands refractory RLS but still battles the disorder daily. She has had to change diet, activity, social events, travel. Refractory RLS is exhausting!

Many of us also have refractory RLS, so we understand. Please feel free to post a note telling us what you are doing to manage it, or simply join into one 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to cah2

Postby Rustsmith » Sat May 05, 2018 1:15 pm

Saturday, May 5

Welcome to

cah2, who has RLS and cah2's mom had RLS and grandma had RLS. cah2 has been receiving treatment via a neurologist for the past 8 years and is looking to be better connected to the RLS community.

You have found a great connection to the RLS community with this discussion board. Please post a note telling us about how you currently manage 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mhp

Postby Rustsmith » Mon May 07, 2018 7:24 pm

Monday, May 7

Welcome to

mhp, who has had "restless legs"for years. It is difficult to sit still for performances, dinner, riding in a car or an airplane, to list just a few examples. The last few years it has gotten worse and may be due to the medicine mhp was taking to "help" it!

Please post a note telling us a bit about your medication, which could very well be the problem. We would love to be able to offer you 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to tjames 1

Postby Rustsmith » Tue May 08, 2018 1:06 pm

Tuesday, May 8

Welcome to

tjames1, whose husband suffers from debilitating RLS, they don't know where to turn, he has tried meds, but nothing seems to be working, he is now to a point where his lack of sleep is affecting his mental health and his job.

Please post a note telling us a bit about his symptoms and the meds that he has tried. With that info, we can provide you with 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to lynndavisjude22

Postby Rustsmith » Tue May 08, 2018 5:58 pm

Tuesday, May 8

Welcome to

lynndavisjude22, who doesn't know anyone else with RLS. She has suffered for years alone and would like to know she is not alone in this suffering and see what others are doing for relief. Her family doctor doesn't know else to do about her RLS as she is maxed out on medication.

You are definitely not alone in this. Please post a note telling us about you current (and past) medication so that we can suggest some things for you 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

Re: MAY 2018 - NEW MEMBERS

Postby Polar Bear » Wed May 09, 2018 8:05 am

9 May 2018

Welcome today to:

janislaraine - whose RLS has gone from moderate and intermittent to severe and nightly. janis is getting very little sleep quality of life has been greatly diminished.

Please post and tell us about yourself and your medication treatment. Sleep deprivation is something we all relate to.
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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Belsheart

Postby Rustsmith » Thu May 10, 2018 2:31 am

Wednesday, May 9

Welcome to

Belsheart, who is experiencing augmentation and needs support for weaning off miripex.

Please post a note telling us about your dose and the approach that your doctor has advised you to use to get off of mirapex. Many of us have been where you are, so we understand your situation and should be able to offer some advice.
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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to reinrika

Postby Rustsmith » Fri May 11, 2018 1:45 am

Thursday, May 10

Welcome to

reinrika, who has had RLS most of her life but it has been much worse recently. Currently taking ropinirole and it has helped a lot, hoping it will stay that way.

Please post a note telling us a bit about 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: 3179
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to RETNavyRN92

Postby Rustsmith » Sun May 13, 2018 1:20 am

Saturday, May 12

Welcome to

RETNavyRN92, who was diagnosed in 2010 and has several co-morbidities (Asthma, severe osteoporosis, Narcolepsy,fibromyalgia and arthritis). When she weaned off certain medications RLS symptoms dramatically increased with negative effects on all aspects of her life! She has upper extremity tremors and neuropathy and is recovering from shoulder surgery and scheduled for hip surgery. So her life is consumed by RLS and a few other diseases as time or pain and priority indicates.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have where we might be able to 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.


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