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

SEPTEMBER 2018 - NEW MEMBERS

Postby Polar Bear » Sun Sep 02, 2018 8:49 am

Welcme today to

art4ea - who says family have used several different non prescription methods (pressure/strapping) to help with RLS symptoms.

Please do join a thread or start a thread and tell our members about the non prescription ways of coping. Many members use such methods to help with symptoms and are always interested to hear of the experiences of other sufferers.
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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to sventory

Postby Rustsmith » Tue Sep 04, 2018 5:32 pm

Tuesday, September 4

Welcome to

sventory, who has RLS, sleep is terrible and also has sleep apnea.

The combination of RLS and sleep apnea is not unusual. Please post a note telling us what you are doing to manage with both.
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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to pfisher

Postby Rustsmith » Tue Sep 04, 2018 11:48 pm

Tuesday, September 4

Welcome to

pfisher, whose RLS restricts activities because of not being able to sit for long periods of time. So pfisher has to keep busy with activities to keep moving.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have. We would love to be able 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.

Rustsmith
Moderator
Posts: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Tkeno51

Postby Rustsmith » Wed Sep 05, 2018 1:17 pm

Wednesday, September 5

Welcome to

Tkeno51, who is failing nursing school because she can't concentrate. It's almost painful- this desperate need to move. She is under the care of a psychiatrist, but she can't eat, and has slept a total of 4 hours in 3 days. She thinks her family wants to institutionalize her. She just needs someone to talk to that gets it.

We understand and look forward to hearing from you. Please let us know what your doctor is doing to help. We may be able to offer some suggestions to try to improve 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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to SallyWheatley

Postby Rustsmith » Wed Sep 05, 2018 5:49 pm

Wednesday, September 5

Welcome to

SallyWheatley, who has suffered with RLS for many years since her 20's and she is now 64. The last several years she has been on Requip and is now up to the highest dosage. Her symptoms have gotten much worse due to augmentation.

Her doctor knows very little about RLS and does not seem open to researching it. She is searching for a doctor in Louisville, KY that has a good understand of RLS and that can help me. I is particularly interested in Iron treatment.

Please post a note asking if anyone knows of a doctor near Louisville and please feel free to ask about iron infusions since a number of our members have had them. We would love to be able to provide you with some suggestions on how to move on from here and get out of the throws of augmentation.
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
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Posts: 15302
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Welcome to SallyWheatley

Postby ViewsAskew » Thu Sep 06, 2018 4:39 am

Rustsmith wrote:Wednesday, September 5

Welcome to

SallyWheatley, who has suffered with RLS for many years since her 20's and she is now 64. The last several years she has been on Requip and is now up to the highest dosage. Her symptoms have gotten much worse due to augmentation.

Her doctor knows very little about RLS and does not seem open to researching it. She is searching for a doctor in Louisville, KY that has a good understand of RLS and that can help her. She is particularly interested in Iron treatment.

Please post a note asking if anyone knows of a doctor near Louisville and please feel free to ask about iron infusions since a number of our members have had them. We would love to be able to provide you with some suggestions on how to move on from here and get out of the throws of augmentation.
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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to dekas1003

Postby Rustsmith » Thu Sep 06, 2018 2:31 pm

Thursday, September 6

Welcome to

dekas1003, who was recently diagnosed with RLS and wants to get educated.

Sorry you had to find us, but you have come to the right place to get educated. Look around and please 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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Vandyfan

Postby Rustsmith » Thu Sep 06, 2018 7:37 pm

Thursday, September 6

Welcome to

Vandyfan, who has suffered with RLS almost his entire life. He was in his sixties before receiving the correct diagnosis and being prescribed the correct medication. Sleep deprivation was his normal mode of operation. And now that he has medication to combat RLS the government wants to deny his right to take it. Pharmacists lecture him about addiction and the need for taking opioids. He tries to explain but they are not informed on the cause of RLS.

Your story is something that many of us are experiencing. For the pharmacists, try handing them a copy of this paper from the Mayo Clinic https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext. As for the government, get involved. Take a look at the Foundation's Advocacy program and join in https://www.rls.org/get-involved/advocacy. Finally , join the RLS opioid Registry so that we can get enough hard evidence to be able to provide the rule makers with something to counter the current anti-opioid hysteria https://www.massgeneral.org/rls-registry/
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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to WBurch

Postby Rustsmith » Fri Sep 07, 2018 1:54 pm

Friday, September 7

Welcome to

WBurch, whose RLS causes poor sleep and his use of drugs results in varying, inconsistent degrees of benefit.

Please post a note telling us about the medications that you have been taking so that we can 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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Mamohau

Postby Rustsmith » Fri Sep 07, 2018 3:17 pm

Friday, September 7

Welcome to

Mamohau, who doesn't often go out in the evenings because of having to stand up & walk around. Mamohau is also affected during the day sometimes and also only has it in the right leg now after some holistic treatments in mid 1990s.

Please post a note telling us if you are taking any medication to manage your RLS and 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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Mugsy

Postby Rustsmith » Fri Sep 07, 2018 7:07 pm

Friday, September 7

Welcome to

Mugsy, whose RLS affects practically every aspect of his life, health, relationship and causes depression to the point that he is on medication for that as well as RLS.

Those are all issues that most of us share. Please post a note telling us about your medications and asking any questions that you have so that we can 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.

Rustsmith
Moderator
Posts: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Lysonic

Postby Rustsmith » Fri Sep 07, 2018 9:19 pm

Friday, September 7

Welcome to

Lysonic, who has had severe RLS for 30 years and has tried everything, but nothing seems to work.

Please post a note telling us about what you have tried and why it didn't work. With all the things that our members have used, we find that there is almost always something new to try.
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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to sbunter

Postby Rustsmith » Mon Sep 10, 2018 1:33 am

Sunday, September 9

Welcome to

sbunter, who has had RLS since a child, it was worse in pregnancy, and severe since menopause. She is on pramipexole, but would like to discuss how to get off it, if at all possible.

Please post a note telling us what dose of pramipexole that you are on so that we can tell you about your options, both to get off and for replacing it.
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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to RLS Ouch

Postby Rustsmith » Mon Sep 10, 2018 1:35 am

Sunday, September 9

Welcome to

RLS Ouch, who hopes to turn a negative into a positive by adopting a lifestyle that will help reduce his RLS symptoms. He would also like to help others where he can.

Please post a note telling us about your lifestyle ideas and 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: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to soozehere

Postby Rustsmith » Mon Sep 10, 2018 9:46 pm

Monday, September 10

Welcome to

soozehere, who has suffered from RLS almost her whole life. It's the past 4 years that have been horrible for her becaust it is pretty much 24/7. She is am now taking Oxycontin and does get some relief.

Take a look around and please post a note telling us a bit about yourself and 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.


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