NOVEMBER 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to AHutchings

Post by Rustsmith »

Saturday, November 14

Welcome to

AHutchings, who has suffered from RLS since she was a teenager--now 68 years old. She is now experiencing augmentation which has affected her sleep, causing depression.

It is very unfortunate that augmentation is something that almost all of us have experienced. You can get a lot of info about it from our Augmentation forum and if you need additional advice, feel free to post a note with 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Rob4056

Post by Rustsmith »

Saturday, November 14

Welcome to

ROb4056, whose RLS as a kid as called growing pains. Now that he is in his 60's it's gotten worse, keeping him from sleeping most nights. His doctor has prescribed medication, but he is seeing some side effects and is concerned about it making worse in the longer term. He looks forward to learning from others and sharing experiences.

We would love to be able to share our experiences with you. If you will post a note telling us what you are currently doing to manage your RLS and asking any questions that you have, we will have an idea 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.

Rustsmith
Moderator
Posts: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to lstadler

Post by Rustsmith »

Sunday, November 15

Welcome to

lstadler, who has had RLS for as long as lstadler can remember. It's hard to sit for long periods of time, so lstadler usually stays away from going to movies or travel. No meds have helped.

There are quite a few options for treating RLS, so we may be able to offer you some suggestions to try. If you are interested and willing to tell us what you have taken, we should 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to happyme14

Post by Rustsmith »

Monday, November 16

Welcome to

happyme14, who was diagnosed a couple of years ago and has a strong family history of RLS. She thought she was one of the lucky ones to have escaped it! When it hit, it hit hard. She was first put on ropinerole and seemed to immediately go into augmentation, her GP kept telling her that she just needed to up the dosage. She found a decent neurologist who is really trying to help and is finally off of the ropinerole and now using the Neupro patch with 75 mg tramadol. She now has her days back, but is dealing with 'sleep hangovers' from the tramadol. but this really is a small issue compared to the misery that she had been dealing with over the last few years! She would love to find a better solution and have a 'backup' plan since she feels that it may be a matter of time before augmenting on the Neupro patch.

Since you have already augmented on ropinerole, you can count on augmenting on the patch as well. However, you have already overcome the biggest hurdle for the next step by also getting tramadol. Convincing a doctor to prescribe an opioid is usually the most difficult step following augmentation. So, when you start having problems with the patch, you should be able to increase your tramadol dose to replace the patch or consider switching to a longer acting opioid, such as methadone or tramadol ER.
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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to nanmar

Post by Rustsmith »

Monday, November 16

Welcome to

nanmar, who after 12 years of having RLS and being on ropinirole, has experienced augmentation. She recently began 300mg of Horizant that she takes 2x/day. She understands from Karla that the usual dose is 600mg once a day with supper. She is seeing her neurologist tomorrow, who also has RLS, and will ask if she should take this. I also take 1-1.5mg. of Ropinirole in the evening.

As you heard, 600mg is a typical dose for Horizant and is normally taken at dinnertime. Horizant is also a longer acting modification of gabapentin and should be effective for most of the day. If you have any questions about Horizant or RLS in general, please feel free to post a note with any of 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Wiggle Woman

Post by Rustsmith »

Tuesday, November 17

Welcome to

Wiggle Woman, who has had severe RLS for 15+ yrs w/ Apnea and insomnia.

Insomnia is a part of RLS that most of us experience and is often the thing that forces us to seek medical help. If you have any questions, please feel free to post a note and we will 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to tvssnt468

Post by Rustsmith »

Tuesday, November 17

Welcome to

tvssnt468, who has had RLS for more than 50 years and wants to learn as much as possible. tvssnt468 has visited many doctors, tried medications, exercises, supplements, and had to semi-retire due to RLS interfering with work.

We will be happy to share our knowledge and point you in the direction of the easiest to understand documents. We can also share suggestions of new meds to try if your current one(s) is not working well enough. All that you need to do to get started is to post a note with 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to chetanku

Post by Rustsmith »

Wednesday, November 18

Welcome to

chetanku, who is RLS stricken. He has been on pramipexole for over 3 months. It works during the nights, but it comes during day now :(

You might be experiencing augmentation if your RLS is during the day now and wasn't before. Take a look through our forum on Augmentation and if you have any questions, feel free to post a note and we can share our augmentation experience with 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.

Rustsmith
Moderator
Posts: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Easer123

Post by Rustsmith »

Thursday, November 18

Welcome to

EAser123, who has had too many sleepless nights and too many exhausted days from RLS...

If there are any questions or suggestions that we can provide to help you out, all you need to do is post a note and let us know how we can 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.

Rustsmith
Moderator
Posts: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to lynnmc41

Post by Rustsmith »

Thursday, November 19

Welcome to

lynnmc41, whose RLS is causing trouble with sleeping. She also has to get up and move for relief. Legs also burn when she walks. She has also had 2 back surgeries in the last 4 months.

The experience of some of our members indicates that spinal issues can be a significant contributor to RLS and/or RLS-like sensations. If you would like comments or suggestions that are specific to your situation, please feel free to post a note and we will try to do 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Ags

Post by Rustsmith »

Friday, November 20

Welcome to

Ags, who has severe RLS that is uncontrolled and she is augmenting. She is therefore having extreme difficulty.

If you haven't already found the forum on Augmentation, then you need to read through those posts to get an idea of what you need to do to get out of your current situation. We would love to be able to help you through your transition. All you need to do is post a note with 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to GEMtouch

Post by Rustsmith »

Sunday, November 22

Welcome to

GEMtouch, who has had these aches and pains in her legs at night for about a year or two now. She suspects it was caused by cancer medication she was on (Tamoxifen). She has now stopped the medication and is hoping these aches will disappear.

Have you actually been diagnosed with RLS? In your case, the key may be if the aches and pains stop when you get up and walk around but return when you sit down or go back to bed. If you would like to discuss this, all you need to do is post a note with any questions that you have and so that we can respond.
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: 7957
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to Eking

Post by Polar Bear »

26 November 2020

Welcome today to:

Eking - who suffers from RLS and is interested in others experiences.

You will read many stories here of the difficulties rls sufferes can face and how we try to cope. We always try to help other sufferers and are glad that found us, but sorry that you needed us. Please ask any questions that you have, you can start your own thread or comment on a relevant thread.
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: 7957
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to Virtdan

Post by Polar Bear »

26 November 2020

Welcome today to:

Virtdan - who suffers from RLS and needs to understand how to get help and what has worked for others.

As you read through the posts you will see that what has worked for others does not work for everyone. Most of us have tried just about everything until we find what will help us.
When you are ready please ask questions, we want 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: 4965
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to RLS Cajun

Post by Rustsmith »

Saturday, November 28

Welcome to

RLS Cajun, who for as long as he can remember has battled RLS. His mom used to tell him he was growing taller & he believed her. When he was married, his wife would ask him to sleep on the couch as he would wake her up. He was depressed & felt like he was alone with this issue. Lack of sleep made him tired all day & no one understood what he was describing to them. He was so miserable that he started taking opiate pain meds which led to addiction.

You have found a place where you are not alone in your fight with RLS. We hope that you have found a treatment to manage your RLS that works for you now. Many of us take opioids to manage our RLS since it is the often the thing that works after years of treatment with other meds. If you have any questions or would like suggestions to improve the control of your RLS, just post a note with your questions or giving us an idea of what you are currently doing so that we can offer our 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.

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