APRIL 2021 - 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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Gumboots

Post by Rustsmith »

Monday, April 12

Welcome to

Gumboots, whose RLS effects his daily life and is now so intense it is even in his legs, arms, shoulders, back and neck.

Are you currently taking a dopamine agonist (pramipexole, ropinerole or rotigatine)? If you are, then your symptoms point toward augmentation. If not, then you and your doctor definitely need to adjust your treatment plan. If you are willing to post a note with more info, we should be able to tell you more.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to WarriorC

Post by Rustsmith »

Wednesday, April 14

Welcome to

WarriorC, who has debilitating RLS and would love to connect via Zoom with Warrior's tribe!

The discussion board system is not set up to be able to find people via Zoom. However, if someone would like to exchange info with you via our PM system, that would work.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Mary 6820

Post by Rustsmith »

Sunday, April 18

Welcome to

Mary 6820, who saw a doctor for the first time about the crawly feeling behind my knees she was 19; she is now 75 years old and has the worst symptoms since she started on meds in her 40's. She was stable on Mirapex for 10 + years but it stopped working 3 months ago. She tried Requip which doubled the symptoms. She is now am on Sinemet with Gabapentin. She is curious if seeing a specialist is helpful. She is basically homebound.

It sounds very much like you experienced augmentation on Mirapex and switching to other dopamine meds (Requip and Sinemet) is only going to continue the misery and stands to make things worse. Seeing a specialist who is familiar with treating augmentation would definitely be beneficial if you have reasonable access to one. If you have any questions, feel free to post a message on the board and we will try to answer it/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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to RAA

Post by Rustsmith »

Monday, April 19

Welcome to

RAA, who has had RLS all her life. She is currently being treated at Mayo, in Rochester MN. She wants to be able to keep up with the latest RLS news, as she does not live close to Mayo. It will be good to hear what challenges others experience.

Welcome to the group. You can find a lot of research material in the topic at the top of the General Topics forum.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to WideBody

Post by Rustsmith »

Tuesday, April 20

Welcome to

WideBody, who RLS IS life. WideBody has to deal with it every time WideBody tries to rest. Every time. WideBody wants it to end and wants to find non-pharmacological solutions.

There are not many non-pharmacological ways to treat RLS. You can find a description of some that work and many that do not in our Physical Treatments and Non-Prescription meds sections.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Elaine

Post by Rustsmith »

Tuesday, April 20

Welcome to

Elaine, who has just been diagnosed and wants to learn more about RLS.

We are sorry that you need us but glad that you found us. We would be happy to help answer any questions that you have. All that you need to do is to post a note with your questions and we will do our best to provide the answers.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to atotic

Post by Rustsmith »

Wednesday, April 21

Welcome to

atotic, whose wife has RLS. They are always looking for ways to make it better.

It is nice to see that you are supportive of her. If you have any questions, just post them 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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Nancyg

Post by Rustsmith »

Thursday, April 22

Welcome to

Nancyg, who has had RLS since she was a small child. She is now 70 and over the years it has worsened. It is now a constant problem.

It is unfortunate that RLS gets worse with age. If there are any questions or advice that you would like us to help with, all you need to do is post a note.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to rondebbs

Post by Rustsmith »

Thursday, April 22

Welcome to

rondebbs, who is unable to sleep and feels miserable.

That pretty much sums up RLS for most of us. If you have any questions, just post a note or feel free to join in any of our 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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Alex.w

Post by Rustsmith »

Friday, April 23

Welcome to

Alex.w, who has suffered from RLS for about 20 years. He gets about 2-3 hours of sleep a night which leaves him tired, irritable and struggling to concentrate. He has tried drugs and natural therapies. Nothing helps. It's awful.

Our experience is that there is always something else to try. Often it takes some persuading to get doctors to prescribe some of the medications that are most likely to work, but these can also have undesirable side effects so that it can take a bit of experimentation to find the right one. If you will post a note to give us an idea of what you have tried, we can 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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Mumzyk

Post by Rustsmith »

Friday, April 22

Welcome to

Mumzyk, whose RLS has taken control of life! Mumzyk is trying to get a handle on it.

We all know that feeling of losing control of your life. Please feel free to post a note telling us what we can do to 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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Juli70

Post by Rustsmith »

Saturday, April 24

Welcome to

Juli70, who has had RLS since childhood and nothing seems to helping at the moment. She is going crazy!

Our experience is that there is always something else to try. If you will post a note telling us what you have tried, we should be able to suggest something else that might work.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to halcarol

Post by Rustsmith »

Saturday, April 24

Welcome to

halcarol, whose RLS has caused insomnia and accompanying fatigue during the day. Sometimes medications have failed resulting in a miserable night with pacing for hours. At those times halcarol cannot read or watch TV because of constant need to move. It has required Norco, which doctors are loath to prescribe.

It is truly unfortunate that doctors are afraid to prescribe the one class of meds that helps so many of us. If you have any questions, 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.

Polar Bear
Moderator
Posts: 8048
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome to: Elaine01

Post by Polar Bear »

Saturday 24th April 2021

Welcome to:

Elaine01 who has been diagnosed and needs advice.

Please post and tell us how your RLS symptoms are affecting you, how you are coping with your management. Are you taking any prescribed medication or any over the counter medication. Are you managing without medication of any sort. We would like to help you but we need more information.
There is also a great deal of information on the Just Joined Forum.
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: 5264
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to cjswift

Post by Rustsmith »

Saturday, April 24

Welcome to

cjswift, who has had RLS for 20+ years. It is worsening and cj is currently on ropinirole and is looking to switch medications and doing research on which med to switch to. cj is sleepy all the time, has frequent UTI's and leg swelling and pain. CJ's doctor says that this could be a side effect of Ropinirole. The doctors cj has spoken with know little about RLS, so cj is looking to self educate to make the right decision on how to proceed.
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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