MAY 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: 3816
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to graycedee

Postby Rustsmith » Fri May 10, 2019 11:25 am

Friday, May 10

Welcome to

graycedee, who has been diagnosed with severe RLS and is currently on tramadol/gabapentin after bad augmentation with mirapex. The RLS Foundation has been a wonderful support.

Glad to hear that you have already been in contact with the Foundation. Please post a note telling us how well you are currently doing.
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: 3816
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mcmags

Postby Rustsmith » Fri May 10, 2019 11:28 am

Friday, May 10

Welcome to

mcmags, who has not found a successful treatment yet and is exhausted and uncomfortable. mcmags believes that this is worse than pain.

Most of us would agree. If you will post a note telling us about the treatments that have not worked, we can probably offer some suggestions of new things to 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: 3816
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to cbreeden

Postby Rustsmith » Fri May 10, 2019 11:32 am

Friday, May 10

Welcome to

cbreeden, who is sleep deprived and sick of being dependent on medication, up to 7 mg of Requip daily.

That is a LOT of Requip and is a good indication of probably augmentation. If that is the case, then you need to get off of it and switch to something else. Your doctor may not be aware of augmentation since you are taking so much. If you will post a note we can tell you more, including how to find a doctor who knows how to treat augmentation.
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: 3816
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Juliearosati

Postby Rustsmith » Fri May 10, 2019 11:37 am

Friday, May 10

Welcome to

Juliearosati, who approximately 25 years ago began to develop mild RLS symptoms that occurred 2-4 times a month and gradually as the years went by the frequency and urgency escalated. Now the symptoms are so frequent and intense that it presents a major intrusion emotionally in her personal and work life.

Please post a note telling us what you are doing to manage your symptoms. There is help, but we need to have an idea of what you are currently doing to stay on top 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.

Rustsmith
Moderator
Posts: 3816
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to bnsfengineer

Postby Rustsmith » Fri May 10, 2019 11:40 am

Friday, May 10

Welcome to

bnsfengineer, who has not had refreshed sleep going on three years and cant find a solution after being placed on Requip, which causes excessive daytime sleepiness. bnsfengineer has had numerous sleep studys as well as Narcolepsy and was diagnosed with moderate to severe PLMS.

Please post a note telling us about the dose of Requip that you are taking any how long you have been taking it. We may be able to offer some suggestions, but need to know a bit more.
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: 7437
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to amhogan

Postby Polar Bear » Fri May 10, 2019 12:04 pm

10 May 2019

Welcome to

amhogan who has had RLS for about ten years and has recently been helped by drinking a magnesium supplement CALM.

Please do post and tell us what you have been taking for symptom relief, are you taking other medications as well as a magnesium supplement.
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: 7437
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to Juliearosati

Postby Polar Bear » Fri May 10, 2019 12:08 pm

10 May 2019

Welcome today to

Juliearosati who approximately 25 years ago began to develop mild rls symptoms that occurred 2-4 times a month and gradually as the years went by the frequency and urgency escalated. Now the symptoms are so frequent and intense that it presents a major intrusion emotionally in personal and work life.

We understand exactly what you are saying. Please post and give us some details of your medication regime (if any) and how you cope with your symptoms. We always hope to be able to suggest 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

ViewsAskew
Moderator
Posts: 15549
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, James7

Postby ViewsAskew » Fri May 10, 2019 8:13 pm

10 May 2019

James7 joins us with something that resonated with me! James7 noted that their career has stalled and quality of life has suffered. Oh, can I second that!

James7, poke around, ask questions, read old posts, introduce yourself in a new post - this is a resource that can be used in many ways.
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: 3816
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Grimley_george

Postby Rustsmith » Sat May 11, 2019 2:15 pm

Saturday, May 11

Welcome to

Grimley_george, who has not been officially diagnosed with RLS yet, but seems to have most of the reported symptoms, as well as a family connection. It has reduced his normal sleep time but not his usual energy. He has only had it with this intensity for a week.

Take a look at the IRLSSG diagnostic criteria (google it) since this is what a knowledgeable doctor will do for diagnosis. And please post a note asking all the questions that you have, especially about medications, so that we can help educate your. Many doctors have no idea about how to treat RLS, so your education is critical.
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: 7437
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

uglydarknite

Postby Polar Bear » Sun May 12, 2019 12:57 pm

12 May 2019

Welcome to:

uglydarknite - who says this condition has taken over his/her life. Has tried countless prescribed medications and over the counter supplements.

Please do read through the posts, you will relate to what people say and know that we understand how difficult this is. When you feel ready please post and tell us what you have taken and what might have worked. We would hope to be able to offer good advice.
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

ViewsAskew
Moderator
Posts: 15549
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, PennyPauline

Postby ViewsAskew » Wed May 15, 2019 7:48 pm

15 May 2019

Welcome to PennyPauline who has had RLS for a few years years and who recently had augmentation. The Foundation provided helpful information (YAY) and PennyPauline wants to continue to learn and advocate for their own health.

Many of us found our way here for similar reasons. Glad to have you as part of the community. You can use this as a resource in any way you are comfortable. Introduce yourself if you want.
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.

ViewsAskew
Moderator
Posts: 15549
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, chrismccartney

Postby ViewsAskew » Wed May 15, 2019 11:25 pm

15 May 2019

Today, we are joined by chrismccartney who has had RLS for 30+ years. The RLS is worsening and chrismccartney is struggling.

chrismccartney, you don't happen to be taking a dopamine agonist, such as pramipexole or ropinerole, do you? If so, find the posts on augmentation. Either way, you may want to start a new post and tell us more about your situation. Reading old posts can be very helpful, too.
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.

ViewsAskew
Moderator
Posts: 15549
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, nrnostrand

Postby ViewsAskew » Fri May 17, 2019 3:56 am

16 May 2019

We welcome nrnostrand, who is looking for information and help related to RLS. That is how I came, and I would guess many of us! And, you are in the right place. Some people jump right in and start participating, asking questions, and so on. Others read existing posts. Others do both. We are here if you need or want to talk. We hope you find something to help.
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.

ViewsAskew
Moderator
Posts: 15549
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, dsrouillard

Postby ViewsAskew » Fri May 17, 2019 4:14 am

16 May 2019

dsrouillard, our apologies! We did not receive the request as we usually do. We found it today and immediately have approved you.

dsrouillard has been diagnosed with RLS and wants to learn more about it. Please, read old posts or start a new post and tell us more about your situation. What is it you want to know? How can we help?
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.

ViewsAskew
Moderator
Posts: 15549
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome to Bill123

Postby ViewsAskew » Sat May 18, 2019 6:19 pm

18 May 2019

Today, we welcome Bill123 whose sleep is a bit disturbed - doesn't open business until noon these days - and even the dogs will not sleep with Bill123.

Yeah, when the dogs will not sleep with you, something has to change! Let us know if you have any questions or read existing posts, whichever works better for you.
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.


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