OCTOBER 2020 - New Members

Whether new to RLS 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Bourvier

Post by Rustsmith »

Friday, October 9

Welcome to

Bouvier, who has a severe case of RLS. Bouiver augmented on pramipexole in May of 2020, had a horrible reaction getting off of it and started ropinorole in August. Bourvier is currently at 5 mg per night along with gabapentin 1200 mg.

The current recommendations for ropinerole are that 4mg/day is the max for RLS, so there is a good chance that you are augmenting on it as well. If so, then you probably need to get off of any type of dopamine agonist. Most of us who are in your position have had to move to the opioids to manage our RLS. If you have any questions, just post a note and we will be happy to try to answer 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Jeanette

Post by Rustsmith »

Friday, October 9

Welcome to

Jeanette, who has had RLS since before it had a name. A lot of people told her that she was crazy when she would describe the symptoms. She has had great difficulty sitting and relaxing because the symptoms are so awful.

It sounds like you are not on any medications to manage your symptoms. If that is the case and you would be comfortable telling us a bit more, we would be happy to suggest the options that you can discuss with your PCP to gain 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.

Rustsmith
Moderator
Posts: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to bbbdco

Post by Rustsmith »

Sunday, October 11

Welcome to

bbbdco, who has had RLS for over 25 years, and it has made life absolutely miserable, almost to the point of suicidal thoughts. bbbdco is currently being treated by a RLS neurologist, but is struggling with DAWS and wants to learn more.

We can probably provide you with some information about DAWS. If you will post a note with whatever questions you have, we will do our best to answer 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Blanch

Post by Rustsmith »

Sunday, October 11

Welcome to

Blanch, who has RLS and PLMD and hasn’t had restful sleep in years.

Most of us can relate to sleep issues. If you are willing to tell us a bit about what you are currently doing to manage your symptoms, we may be able to offer some suggestions for improving 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to TuckerCAL

Post by Rustsmith »

Monday, October 12

Welcome to

TuckerCAL, who has suffered for years. Tucker has been a member of an RLS group on Facebook, and this group was suggested to discuss what to do when dopamine drugs no longer work. Tucker recently started seeing Dr. Buchfuhrer, and wants to research what he recommends.

First off, you have one of the best doctors in the US with Dr B. He is an amazing resource. As for a discussion of what follows the use of DAs, we would be happy to share our experiences in that area. If you will post a note with whatever questions that you have, we will share what we can.
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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to LotteM

Post by Rustsmith »

Wednesday, October 14

Welcome to

LotteM, who has had RLS on and off since her 20s. It runs in the paternal family. Her RLS has gone haywire since her mid-50s. She lost her job because of daily severe RLS.

We would love to provide you with some advice to improve the control of your symptoms. If you will post a note telling us about what you are currently doing, we should be able to 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to KathleesSF

Post by Rustsmith »

Wednesday, October 14

Welcome to

KathleenSF, whose mother suffers from RLS and doesn't know anyone else who does. She is hoping to learn how she can help her, find a community for her, and contribute if she can to this community.

We would be glad to help both of you with your mother's RLS and to have her participate in our discussions. All you need to do to get started is to post a note with whatever questions that the two of 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to alanwhyte

Post by Rustsmith »

Wednesday, October 14

Welcome to

alanwhyte, whose RLS runs in his family and that makes him concerned that his own children will also suffer in the future.

There have been something around 20 different genes identified with RLS and it does often run in families, so you are right to be concerned. If you have any questions that you would like to ask, just post a note and we will do our best to answer 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to simsdad

Post by Rustsmith »

Wednesday, October 14

Welcome to

simsdad, who has had RLS for about 10 years. He is taking Ropineral and other meds to control it. Usually the movements and pain begin in the early afternoon. It exhausts him and prevents him from being fully active. He is 74 yo.

Symptoms that occur in the early afternoon may be a sign of ropinerole augmentation. Don't be surprised if you doctor is not familiar with this side effect of ropinerole because it is one that is specific to RLS. You can learn more by looking in our forum on augmentation. If you have it, then it is imperative that you get off of any kind of dopamine agonist (pramipexole and the Neupro patch are the others). If you have any questions, feel free to post a note and we will do what we can to answer 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Tim Morris

Post by Rustsmith »

Thursday, October 15

Welcome to

Tim Morris, who needs to learn more about RLS and how it interferes with sleep and /or COPD.

We would love to answer any questions that you have. All that you need to do is to post with them so that we can know how to 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to pwaterbury

Post by Rustsmith »

Thursday, October 15

Welcome to

pwaterbury, whose RLS is causing pain and irritability.

Not all of us experience pain with our RLS, but many do. If you would like for us to provide some suggestions for gaining more control over your RLS, all you need to do is post a note telling us what you are currently doing to manage it.
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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to AutomationAir

Post by Rustsmith »

Friday, October 16

Welcome to

AutomationAir, who has struggled with sleep her whole life, along with depression and anxiety. She just wants to feel rested.

We would be happy to provide some suggestions to get better control of your RLS so that rest, anxiety and depression are all improved. If you would like some suggestions, just post a note telling us what you are currently doing for your RLS so that we know where to start the discussion.
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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to noronwe

Post by Rustsmith »

Saturday, October 17

Welcome to

noronwe, who is a male 81 years of age. Have had RLS since childhood. Not diagnosed until late 90's after he retired from work. Typically gets worse with age profile. Now goes all day unless he works activity both mentally and physically.

If you have any questions, please feel free to post a note with them so that we can try to 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: 4895
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to bmalewitz

Post by Rustsmith »

Saturday, October 17

Welcome to

bmalewitz, who is looking for better support and discussion of RLS than is currently available on social media sites.

We would be happy to help you out. All that you need to do is post a note telling us a bit about what you are currently doing to manage your RLS so that we know what we can suggest to 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.

badnights
Moderator
Posts: 5757
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to Lana Lang

Post by badnights »

Today we welcome Lana Lang, who has suffered from WED/RLS for a few years. In the last year, symptoms have become very frequent. The lack of sleep has affected Lana Lang physically, mentally, and emotionally.

Lana Lang, we know what it's like when you have to go on living your life as if everything is normal, when the people around you have no idea how sleep-deprived you are, nor how it has affected your well-being. I think as a group we have something to offer anyone in this situation, so please start a Topic and tell us about yourself and ask questions. Or if you;' d like, post a reply in an existing Topic.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Locked