MARCH 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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Gatita42676

Postby Rustsmith » Thu Mar 14, 2019 1:20 pm

Thursday, March 14

Welcome to

Gatita42686, who has had RLS since childhood, every year it gets worse (42 now). If Gatitia can't or fails to take meds for this aggravating condition, Gatita feels as if would rather die because it is means being constantly up, moving around, with no sleep, and the worst time is driving! It gets so excruciating that Gatita cries in agony, wanting to just get out and start walking!!!

We have all been there and understand, so you are not alone in this. Please post a note telling us about your meds. We may be able to offer some suggestions to gain better control, or at least for how to better remember to take your meds on time.
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: 7555
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to bon2beez

Postby Polar Bear » Fri Mar 15, 2019 12:30 pm

15th March 2019

Welcome today to:

bon2beez - who can't sleep and this affects day time life. bon2beez now dreads night time.

We understand very well how you feel and how night time can be a misery. Please post and tell us how your RLS is treated and how your symptoms are, we would like 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

Polar Bear
Moderator
Posts: 7555
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to Karyn

Postby Polar Bear » Fri Mar 15, 2019 12:55 pm

15th March 2019

Welcome today to

Karyn - who would like to educate herself further on Rls which she has had for many years and is now augmenting on current meds. Karyn would like some professional opinions on this please.

Karyn, This is a discussion board and we try to help. We are made up of Volunteer Moderators and many sufferers of RLS. We cannot provide professional opinions but if you make a post on the Just Joined Forum we will do our best to help using our experiences. Please post and tell us of your RLS history, and your treatment, medications and dosages.
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: 7555
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to Sixia

Postby Polar Bear » Fri Mar 15, 2019 12:59 pm

15 March 2019

Welcome to Sixia - who has suffered rls for as long as can be remember, Sixia is now 65 years old.

Welcome to the dicussion board, you will find a lot of very useful information. Please post and tell us about your RLS and your medication/dosages. We are all RLS suffers and will try 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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Kittyjane

Postby Rustsmith » Fri Mar 15, 2019 2:08 pm

Friday. March 15

Welcome to

Kittyjane, whose RLS has gotten worse with age at the age of 70, she seldom has a peaceful night. In addition, she has lupus, peripheral neuropathy and adult acquired spinal deformity. Hoping to gain more insight into this disease.

We can definitely provide you with that insight. Please post a note telling us what you are taking for your RLS so that we can offer you some suggestions on how to get a better night's 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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to lbpederson

Postby Rustsmith » Fri Mar 15, 2019 10:55 pm

Friday, March 15

Welcome to

lbpederson, whose 8 year old son was diagnosed with RLS and PLMD at the age of 6. They have struggled with different treatments and have had very little success, even after transferring him to the Mayo Clinic. The sleep deprivation and pain from the RLS has disrupted his development both academically and socially. Every day is a struggle. Desperate to find and connect with other families with young children who have RLS.

Please take a look through our Special Populations forum to get an idea of what other parents have done. You should also call the RLS Foundation office in Austin, TX. Not only do they have a number of documents specific to pediatric RLS, but the Executive Director's daughter (now grown) was diagnosed with RLS at about the same age. I am certain that Karla would want to talk with you about what can be done to help your son.
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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to philoff

Postby Rustsmith » Sat Mar 16, 2019 10:11 pm

Saturday, March 16

Welcome to

philoff, who has increasingly gotten worse over the past 25 years and is still hoping for answers that do not involve drugs.

Take a look at our forums on Physical Treatments and Non-prescription meds to get an idea of the limited number of things that work and of the much longer list of things that do not. And please post a note telling us a bit about your RLS so that we can offer other suggestions or comments.
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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jej345

Postby Rustsmith » Sun Mar 17, 2019 12:18 am

Saturday, March 16

Welcome to

jej345, whose RLS prevented a good night's sleep. That, in turn, exacerbated depression/anxiety issues during the daytime.

Please post a note telling us what you are doing to manage your RLS so that we can offer you some suggestions for improving your control and getting a good night's 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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to TRCSr39

Postby Rustsmith » Sun Mar 17, 2019 12:21 am

Saturday, March 16

Welcome to

TRCSr39, whose RLS is causing Sleep problems and restlessness while being seated for a length of time like watching TV or working on the computer.

Please post a note telling us about your RLS treatment(s) and asking any questions that you have 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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Werbers

Postby Rustsmith » Sun Mar 17, 2019 3:05 am

Saturday, March 16

Welcome to

Werbers, who is 68 years old and has had RLS in various degrees of severity for a long time. It has been particularly bad since about 1990. Werbers has take Tramadol 100mg daily and Oxycodone 10mg daily since about 1995 and took ropinorole for a couple of years and dealt with augmentation from that. Werbers is currently dealing with augmentation from tramadol. About week 4 now and is finally getting over it. Werbers much appreciates all of the resources the Foundation provides and looks forward to this board.

Please post a note telling us a bit about your Tramadol augmentation experience since it isn't something that occurs with great frequency. We would love to learn from you and look forward to being able to help you out as well.
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: 7555
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to Quercus

Postby Polar Bear » Sun Mar 17, 2019 10:39 am

17th March 2019

Welcome to:

Quercus -who has suffered from RLS on and off for over 25 years. For the last 6 years, it has been fairly well-controlled with Mirapex but now symptoms are breaking through at least twice a day. Sleep is difficult and it's sometimes very hard to keep a positive attitude.

Please do post and tell us about your rls and your medication treatment. We are here to understand and to try 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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Quercus

Postby Rustsmith » Sun Mar 17, 2019 1:56 pm

Sunday, March 17

Welcome to

Quercus, who has suffered from RLS on and off for over 25 years. For the last 6 years, it has been fairly well-controlled with Mirapex but now symptoms are breaking through at least twice a day. At night, sometimes Quercus can't sleep and the next day is horrible trying to function with a sleep-deprived brain. Furthermore, the sensations are so unpleasant and so hard to control that it's sometimes very hard to keep a positive attitude.

It sounds like you may be going through augmentation from the Mirapex. Take a look through our forum on Augmentation to get more info on the subject. And please post a note telling us about your dose so that we can offer you some suggestions for addressing the problem.
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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to colleen116

Postby Rustsmith » Mon Mar 18, 2019 12:32 am

Sunday, March 17

Welcome to

colleen116, who has had RLS for over 20 years and has been on meds for most of that time. She has been on all the typical meds, augmented and had impulse control issues on dopamine agonists and is now on low dose opioids. She loves the work the RLS Foundation does and is always looking for new things on the horizon to treat her RLS.

Since you are interested in new things, take a look at the Published Research thread in our General Topics forum. It is quite long, so you may want to skip to the end and work backwards. And feel free to jump into any of our ongoing discussions. We can always use a fresh point of view as well as someone else's experiences.
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: 4089
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to PaulBenn

Postby Rustsmith » Mon Mar 18, 2019 3:01 pm

Monday, March 18

Welcome to

PaulBenn, whose RLS is causing sleep disruption, limited social activities, and painful leg movements.

That pretty much describes what it does to all of us. If you post a note telling us about your meds, including the dose, we may be able to offer you 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.

ViewsAskew
Moderator
Posts: 15742
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

WELCOME TO WKG

Postby ViewsAskew » Mon Mar 18, 2019 9:27 pm

Monday, 18 of March -

Welcome to WKG, who cannot remember life without RLS. As with many of us, sleep and sleeping arrangements have been impacted.


We can all relate to that! If you want, poke around yourself, or introduce yourself by starting a new post. Either way, welcome.
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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