SEPTEMBER 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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

SEPTEMBER 2020 - New Members

Post by Rustsmith »

Wednesday, September 2

Welcome to

Susanq, who has suffered from RLS since childhood and wants to learn of different methods of treatment.

We would be happy to help you out with descriptions of the treatments that work as well as the details of those treatments. All you need to do is post a note with any questions that you have 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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Sandybeacb

Post by Rustsmith »

Wednesday, September 2

Welcome to

Sandybeacb, who is 70 years old and have had RLS since the early 20’s. Sandy is currently tapering off Mirapex which Sandy has been on for nearly 30 years due to augmentation. Sandy experiences restless legs every day and night.

Quitting pramipexole is one of the most difficult things that any of us will ever do. Take a look through our forum on Augmentation and then feel free to post a note asking 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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Toni

Post by Rustsmith »

Wednesday, September 2

Welcome to

Toni, who is almost 59 years old and has been suffering with this since she was about 14 years old. (She even get it in her elbows) For so many years doctors thought that she was out of her mind. Meanwhile, when she was having an “episode “ she felt as though she really was going “out of her mind “. This has interfered with her life, such as going to the opera, theatre, dinner, driving in a car, laying down trying to relax or trying to sleep. It has only been within maybe the last 18 or so years that she has been lucky enough to use medication (even though it’s not great). She is still looking for that “miracle” cure!!

We are all hoping for that that miracle cure occurs during our lifetimes. Feel free to post a note with any questions that you have or simply jump into any of our ongoing discussions.
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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to lmw789

Post by Rustsmith »

Thursday, September 3

Welcome to

lmw789, whose restless legs keep her up at night.

We would love to able to give you some suggestions to improve your sleep. All that you need to do is post a note with any questions that you have and a brief explanation of what you are doing for your RLS so that we can give you some customized 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.

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to ketandoshi

Post by badnights »

iPlease welcome ketandoshi , who has suffered with WED/RLS for 10 years, recently worsening. Now with only 2 hours of sleep a night, ketandoshi is desperately seeking advice from us fellow sufferers!

Ketandoshi, please start a topic and tell us more about your situation - are you taking any medications? What else might have happened around the time your WED/RLS got worse - any new medications or supplements, dietary changes, surgery, donated blood? Feel free to post comments and questions in other Topics, as well. I know you'll get lots of love and advice here!
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: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to MessyJessy

Post by Polar Bear »

8 September 2020

Welcome today to

MessyJessy - who has had restless legs for two years. Currently having a hard time finding a Dr. who will Rx the medication combo that works. Current Dr. has her just taking iron supplements and exercise. She doesn't absorb iron via pill and usually has to get infusions. In an insomnia state as well so I’m feel like I’m losing my mind.

Doesn't sound like your current Dr is very familiar with the treatment of WED/RLS especially as you previously had infusions.
If you start a thread and tell us of your previous and current treatment we'd be happy to see where we could try and help and advise. We all want to help and will understand how you are feeling.
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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to MessyJessy

Post by Rustsmith »

Monday, September 7

Welcome to

MessyJessy, who has had RLS for two years. She is currently having a hard time finding a Dr. who will Rx the medication combo that works. Her current Dr. has her just taking iron supplements and exercise she doesn’t absorb iron via pill and usually has to get infusions. She has been in an insomnia state as well so she feels like she is losing her mind.

Finding a doctor who "gets it" and is willing to provide proper and complete care for RLS can be difficult. Many of us travel to see a doctor at a Foundation Quality Care Clinic or one of their recommended physicians.
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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Linfields

Post by Rustsmith »

Monday, September 7

Welcome to

Linfields, who is experiencing RLS and needs help.

We would be happy to provide whatever help you need, just post a note with the issues that you are facing and 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.

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Welcome, Gansy

Post by ViewsAskew »

Gansy joins us today, Monday, Sept. 7th. Gansy has had RLS for at least 40 years and desperately wants information, suggestions, and support.

While none of us here ever wish this on another person, we are so glad we are here and can help you with all of that, Gansy. Please let us know how we can help. Start a new post whenever you're ready.
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.

Rustsmith
Moderator
Posts: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to kafu

Post by Rustsmith »

Tuesday, September 8

Welcome to

kafu, who takes ropinorole everyday and if a dose is missed, kafu's life is a nightmare for about two hours. kafu cannot relax or watch TV without having to get up, is constantly shattered and eats sugary foods for energy.

If you have any questions, please post a note asking whatever you wish.
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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to rls_yopd

Post by Rustsmith »

Wednesday, September 9

Welcome to

rls_yopd, whose RLS has ruined sleep quality and threatens rls_yopd's career in limiting how much time it is possible to sit at a computer and work.

We would love to be able to offer you some suggestions if you feel comfortable posting a note telling us what you are current doing to manage 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: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to MAdKat

Post by badnights »

MAdKat is dismayed that doctors in the UK, where millions of people are really suffering with RLS/WED, know nothing about it and don't seem to care or to take the trouble to to find out - and that even includes Neurology Consultants in major neurological hospitals. MAdKat says " Somehow we have to inform the world and you can teach me about this and how you are present with people in trouble because of RLS. Thank God you are here doing what you do."

MAdKat, it's not just the UK. Even in the US, and Canada (where I am), neurologists - even movement disorders neurologists - cannot be counted on to know much about WED/RLS. Many of them know roughly what it is, but they still think the first line of treatment is dopaminergic medications, and they know nothing about augmentation, which is a big and prevalent problem caused by dopaminergic medications in RLS/WED patients. (Basically, it makes the RLS/WED worse. ) The first line of treatment for most of us should be iron!

I agree! we need to inform the world, and each of us needs to learn as much as s/he is capable of learning about the disease. Knowledge is the only way to protect ourselves, in an environment where doctors need to be educated about our disease. Thankfully you have made your way here, where you will for sure learn a lot, and hopefully will also get ideas on how to pass that knowledge along - how to tell your family and friends, how to point your doctors to resources so they can learn, even how to make your politicians aware of the disease and the needs of patients like us, if you're into that sort of thing! (I'm not! Talking to politicians is beyond my abilities).

So, welcome to the board, our newest member. I hope you find all you need here, and can help us make the world a better place.
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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Chalmer45

Post by Rustsmith »

Friday, September 11

Welcome to

Chalmer45, whose partner has RLS and Chalmer wishes to learn more about what he is going through to be able to help as much as possible.

If you have any questions after taking a look around, please feel free to post a note with any questions that you have. We would love to be able to help both of 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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to homer001

Post by Rustsmith »

Saturday, September 12

Welcome to

homer001, whose RLS has impacted his life to the point that it cost him his marriage and job due to augmentation and complications arising from the drugs prescribed to treat it.

So sorry that things went that far with augmentation. It is bad enough to have to go through that without the other complications that you experienced. If you feel comfortable with telling us about your current situation and have any questions, please feel free to post a note for us.
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: 5148
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Cruise

Post by Rustsmith »

Saturday, September 12

Welcome to

Cruise, who is 66and have had RLS since childhood. It has progressively got worse during the last 15 years. Cruise have tried all recommended medical treatment plus watching diet and using oils at night. Nothing works. Cruise is getting no relief at the moment, having had very little sleep for so long now.

If you could post a note telling us a bit about the meds that you have tried, we may be able to give you some suggestions. Our experience has been that there is always some other med or combination that will 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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