OCTOBER 2018 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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to GamerGirlAmy

Postby Rustsmith » Sat Oct 13, 2018 3:24 pm

Saturday, October 13

Welcome to

GamerGirlAmy, whose mom developed RLS when fighting MS. The MS went into remission, the RLS did not. It did vanish when she had to start taking codeine for another unrelated condition. But now that she doesn't take the pain relievers as often, the RLS started to crop back up.

She finds that the hot-water therapy pump Amy bought to fight her lymphodema, however, silences the RLS as well. Amy wanted to spread that information to people here since it's a tool most people don't know about.

Both opioid medications and soaking in hot water are techniques that many of us use to manage our RLS. But the pump sounds interesting, could you post information about the system that you bought for her.
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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Audreylovescolor

Postby Rustsmith » Tue Oct 16, 2018 2:58 am

Monday, October 15

Welcome to

Audreylovescolor, who wants to join because she can't take it anymore with the painful RLS. She is hoping someone can help...

Please post a note telling us a bit about the history of your RLS and what you are currently doing to manage it so that we can offer you 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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to BeckyS

Postby Rustsmith » Tue Oct 16, 2018 1:13 pm

Tuesday, October 16

Welcome to

BeckyS, who is an RLS Foundation member and was diagnosed with RLS in 1980.

Thank you for your Foundation membership. Please post a note telling us a bit about your RLS and what you are doing to manage it. We might be able to offer 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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to NotAlone

Postby Rustsmith » Tue Oct 16, 2018 10:49 pm

Tuesday, October 16

Welcome to

NotAlone, who wants to hear how others with RLS are coping. Her condition has become worse. She has never participated in a discussion board of any kind, but now she needs to not feel like she is alone with this illness. She needs the encouragement.

You are definitely not alone with RLS. Please post a note telling us a bit about your RLS and your current treatment so that we can tell you how some of us manage and so that we can offer not only encouragement, but maybe even some suggestions for improving 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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Ebrandt

Postby Rustsmith » Wed Oct 17, 2018 3:19 am

Tuesday, October 16

Welcome to

Ebrandt, whose RLS is getting severe. Her legs won't stop moving. It starts in the afternoon and continues till the late evening. She takes medication for it but sometimes it doesn't work. Today was very bad day and it doesn't help that she is also anemic. Tomorrow she is going to try taking more walks.

Please post a note telling about the medication that you are taking and whether your doctor has checked your ferritin levels. There is a chance that you are experiencing augmentation since your RLS starts in the afternoon. There are also new things that can be done to address your iron levels that could also help with 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.

badnights
Moderator
Posts: 4956
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to DianeB

Postby badnights » Wed Oct 17, 2018 4:39 am

Welcome today to DianeB who has had RLS/WED for 35 years without knowing it had a name for most of that time. Increasing severity is causing DianeB to consider taking meds.

DianeB, I'm glad you're educating yourself first. There are a number of things to try before trying meds (which I wish I had known to do). The level of ferritin in your blood should be measured, along with other iron indicators. If ferritin is less than 100, oral supplementation might reduce symptoms enough for you. Vitamin D is important. Magnesium can be important for some people. And dietary choices can modulate the disease, although there are only anecdotes to go by on. Leaky gut and SIBO have been linked to WED/RLS; these too are related to diet. Avoiding triggers is also extremely important - no Benadryl! or any other medications that can trigger symptoms; no evening or afternoon coffee; certain types of alcohol for some of us will trigger symptoms.

Please post a note telling us about yourself, and what you have tried so far and what you might try next.
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.

Rustsmith
Moderator
Posts: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Samsa

Postby Rustsmith » Wed Oct 17, 2018 5:14 pm

Wednesday, October 17

Welcome to

Samsa, who would like to connect with other people who experience RLS and find ways to manage it naturally.

Please post a note telling us a bit about your RLS, what you are doing to manage it and asking any questions that you have. That way we can offer suggestions, possibly including things that do not involve medications.
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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Sonjams

Postby Rustsmith » Wed Oct 17, 2018 8:43 pm

Wednesday, October 17

Welcome to

Sonjams, whose RLS has been under control for a number of years, but within the last few months she is noticing symptoms so much earlier in the day than before. What started out as first appearing after she went to bed, to then late afternoon, to now having symptoms as early as noon has her quite concerned.

These are classic symptoms of augmentation of a dopamine agonist. Take a look at our forum on augmentation to get an idea of whether you think this is your situation and if so, what your next might be. And please post a note telling us about your medication so that we can offer some specific 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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to winney

Postby Rustsmith » Fri Oct 19, 2018 1:37 pm

Friday, October 19

Welcome to

winney, who may have RLS. and has developed ways of managing it to a degree which winney would like to share

Please post a note telling about the symptoms that you believe may be RLS and what you are doing to manage 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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to tired2233

Postby Rustsmith » Sat Oct 20, 2018 7:43 pm

Saturday, October 20

Welcome to

tired2233, who fears getting near my at night for fear of injury. tired kicks, rolls, pushes things over, due to being in a semi-sleep or awake. tired's RLS does not calm until 4-5 am, which allows sleep a few hours and yet still have the RLS once up until having sat down for awhile. tired has tried all the medications, none do much good other than narcotics. tired does not like using narcotics for this.

Please post a note telling us which medications that you have tried along with the maximum doses so that we can get a better idea of your situation and can then provide some educated suggestions to discuss with your doctor. Many of us use low dose opioids because they are currently our only option, other than not having a life.
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: 7261
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

WELCOME TO: vr123

Postby Polar Bear » Tue Oct 23, 2018 11:54 am

23 October 2018

Today we welcome:

vr123 -- who can no longer fly because of RLS, cannot work in law enforcement, search and rescue or EMS because of it. cannot sit for long periods of time, so deskwork is out and has yet to find the triggers.

Please do look at the Just Joined Forum, A Good Place to Start where there is a great deal of information. When you feel ready please do post, tell us about your RLS, your medications, if any, what has worked or not worked for you. We hope we can help you 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

Rustsmith
Moderator
Posts: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cyndijane41

Postby Rustsmith » Tue Oct 23, 2018 1:29 pm

Tuesday, October 23

Welcome to

Cyndijane41, whose RLS has caused her to become anxious about her health. Right now her doctor is working with her to find the right dose of medication. She is forgetful and short-tempered.

Please post a note telling us a bit about your current medication and dose. Our insights and experience might allow us to make some suggestions that you could make to your doctor that would help speed you to a solution.
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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to burdn4

Postby Rustsmith » Wed Oct 24, 2018 3:41 am

Tuesday, October 23

Welcome to

burdn4, who needs help as symptoms have increased, medicine seems to no longer be working and so burdn4 feels desperate.

Please post a note telling us about your medication (including the dose) so that we can offer some suggestions. You might also want to take a look at the posts in our Augmentation file to get an idea of whether that is your issue.
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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Donna

Postby Rustsmith » Wed Oct 24, 2018 4:34 pm

Wednesday, October 24

Welcome to

Donna, whose RLS has affected her sleep big time. She used to have a solid 8 hours every night; now if she sleeps for 2 hours at one time, she feels lucky. It is a devastating disease and she craves help.

Please post a note telling us what you are currently doing to manage your RLS so that we will have an idea of what suggestions to make.
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: 3444
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mikey

Postby Rustsmith » Sat Oct 27, 2018 11:43 pm

Saturday, October 27

Welcome to

mikey, who came down with RLS a few months after an accident on the jobsite. He damaged L-1 thru 5. It turned his whole life upside. He has it as bad as it can get. He has to move his left leg almost exactly every 4 seconds. He has counted hundreds of times. He could not keep a day job after being with his company for 18 years. It affects him ONLY when in bed at night. But there is literally not one second of sleep. It goes away gradually at first light and never comes during the day, only at night.

It certainly sounds a lot like RLS. Take a look at the notes in the first post in this forum for New Members. And please post a note telling us if your doctor has given you anything to help manage, especially since it sounds like you need 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.


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