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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to GV Jan

Post by Rustsmith »

Monday, October 19

Welcome to

GV Jan, who has tried many different medications including over the counter and nothing helps and who has spent many sleepliess nights. It is difficult for her to sit down and she often stands up watching television. Recently after 48 or more hours of no sleep she developed severe back pain and went to the Hospital Emergency Ward only to be disregarded. They took an x ray of her back and sent her home doing nothing.

Unfortunately, many doctors still do not know about RLS and often are not willing to admit that they don't know what to do. There are always new medication choices to try, so if you are willing to post a note giving us a brief summary of the things that you have tried, we should be able to suggest something that may work for 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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Baggum

Post by Rustsmith »

Monday, October 19

Welcome to

Baggum, who has severe RLS and is desperate for some help.

We would be glad to help you out. If you would post a note telling us what you are doing to manage your RLS, that will give us an idea of where to start.
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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to RayB

Post by Rustsmith »

Tuesday, October 20

Welcome to

RayB, whose wife has RLS and her symptoms have negatively impacted his life through her lack of sleep causing depression and irritability. Never being able to plan things because of her mood and/or tiredness.

RayB, we can all understand that from being in her position. If you would be willing to tell us what she is doing to manage her RLS, we would be able to provide some suggestions for improvement.
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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to bhud

Post by Rustsmith »

Tuesday, October 20

Welcome to

bhud, whose RLS makes sleep difficult without medication but it is hard to determine the best medication for long term use. It is also hard to focus in the late afternoon as symptoms begin.

If your symptoms are starting in the afternoon and you are currently on a dopamine agonist, you may be starting to experience augmentation. If you would like to post a note telling us about your current (and past) meds, we may be able to offer you some suggestions on how to proceed from here.
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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Warrior

Post by Rustsmith »

Tuesday, October 20

Welcome to

Warrior, whose RLS rules her life. She feels compelled to engage in strenuous exercise every other day to keep it at bay. And at times, such as lately, she gets symptoms no matter how much she exercises or right after exercise. It is very frustrating. Gluten is a trigger.

Are you taking anything to manage your RLS or are you getting by with just exercise? Please post a note to let us know and to ask 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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to ramellor

Post by Rustsmith »

Wednesday, October 21

Welcome to

ramellor, who has been tormented by this horrible affliction for over 40 years. ramellor has taken all kinds of pharmaceuticals, some that caused augmentation, others that didn’t work at all, and a few that provided relief. Even on the current medication, ramellor is plagued with RLS symptoms at least 3 times a week and it includes the upper extremities. There are times ramellor would rather die then continue a life with RLS.

Most of us can relate to all of that. If you would willing to tell us about your current med, we may be able to offer some suggestions. Many of us use multiple meds to control our RLS, so perhaps that is what you need to do.
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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Alaska1024

Post by Rustsmith »

Wednesday, October 21

Welcome to

Alaska1024, who has been suffering with what Alaska thinks is RLS for 3 years and so just wants support answers and help.

We would be very happy to provide you with help and information about RLS. All that you need to do to get a conversation started 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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to fossil1985

Post by Rustsmith »

Wednesday, October 21

Welcome to

fossil1985, who has had RLS/WED for 15 years. It is impossible to follow a normal living 9-5 regimen. fossil now has augmentation after using Neupro for about 7 years and am at wits end.

If you are augmented, then you need to get off of all dopamine agonists. Take a look through our augmentation forum to get an idea of what is needed to do that and then feel free to post a note with any questions that you have. Most of us have been where you are and none of us envies your situation.
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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Kfryk1

Post by Rustsmith »

Friday, October 23

Welcome to

Kfryk1, who has had RLS for many years and is now experiencing augmentation. It affects kfryk1's sleep significantly.

Take a look through our forum on augmentation to get an idea of what lies ahead for you. If you have any questions, feel free to ask. We are here to help you through this.
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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to HateNighttime

Post by Rustsmith »

Friday, October 23

Welcome to

HateNighttime, who hasn't slept well in years. He literally dreads bed time. He typically lies awake feeling desperate between the hours of 10 and 2:30am. The lack of sleep is wearing him down and making him feel depressed.

First off, love your login ID. Your comments about sleep pretty much describe RLS-induced insomnia for most of us. If you would like some suggestions for improving your situation, just post a note telling us what you are currently using for your RLS so that we will know what sort of suggestions to give 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: 5138
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to oldtechygirl

Post by Rustsmith »

Sunday, October 25

Welcome to

oldtechygirl, who has had RLS for 30+ years and, at the age of 68, is having problems once again after many years of successful control with ropinerole. She is interested in sharing with and learning from others.

If you are having issues after being on ropinerole for years, there is a good chance that you are experiencing augmentation. If you take a look at the augmentation forum and have questions, post a note and we will 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.

badnights
Moderator
Posts: 5869
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: OCTOBER 2020 - New Members

Post by badnights »

OldTechyGirl has had RLS/WED for over 30 and is beginning to have problems after many years of successful control with ropinerole. She is interested in sharing with and learning from others.

Hi OldTechyGirl and welcome. You have come to a good place to learn! Feel free to start a Topic and describe your situation for the other members, or comment on an existing topic. Ropinirole will almost always cause augmentation - an unusual phenomenon in the medical world, in which the medication intended to help actually makes the WED/RLS worse. In augmentation, the medication still helps for a number of hours after it's taken, but over time, symptoms start earlier in the day, get more intense, spread to other body parts (arms, trunk), and/or start sooner after sitting or lying down.
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.

Polar Bear
Moderator
Posts: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to bambiks

Post by Polar Bear »

Tuesday 27th October 2020

Welcome today to

bambiks - who as a lifelong rls patient wants to share experiences and learn from other's. RLS increasingly rules daily life and now in my early fifties it gets worse. Against rls in legs and arms bambiks has been using all label and off-label rls medications alone and in combination since 2006.

You will find much information in the Just Joined Forum. As a lifelong sufferer you are likely to already be well versed in the different approaches to treatment. When you are comfortable, If you start a thread and tell us of your WED/RLS experiences, what has worked and what has not worked, we would love to try and help you and provide some fresh ideas for you going forward.
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: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to katlin

Post by Polar Bear »

Wednesday 28th October 2020

Welcome today to

katlin - who suffers with this awful condition day and night, katlin rarely sleeps and needs magnesium baths through the night also taking medications every 4 hours. Electric pain is unbearable.

We are glad that you have found us and we will do our best to help you. I'd suggest that you start a thread and tell us what medications you are taking, including also any you have tried and which didn't work for you. You are already trying no prescription methods which is good.
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: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to DicCarlson

Post by Polar Bear »

Thursday 29 October 2020

Welcome today to:

DicCarlson - who had severe RLS 2016, somewhat "cured" with iron supplements. But, severe Insomnia since then.

Severe insomnia is something we are all very familiar with and RLS insomnia appears to be a type all of its own where the usual sleeping pills don't have much effect. When you feel ready please join a relevant thread or start one of your own telling us what you have trying. We will do our best to help from our own experiences.
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

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