JANUARY 2019 - 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cather3

Postby Rustsmith » Sat Jan 12, 2019 4:07 pm

Saturday, January 12

Welcome to

Cather3, who had recurring symptoms of RLS that are getting worse over time. She is trying gabapentin, advil and ambien, but they are not consistently effective. So she needs other ideas.

Unfortunately RLS does tend to get worse with age and gabapentin doesn't work for everyone. Take a look around to get an idea of your options and please post a note to give us an idea of what you are experiencing so that we can offer some specific suggestions for you to consider.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Lasvegased777

Postby Rustsmith » Sun Jan 13, 2019 4:28 am

Saturday, January 12

Welcome to

Lasvegased777, who has had RLS since he can remember. This condition has gone from an inconvenience to debilitating. He is here for knowledge on the subject and may have some insights as well.

Please post a note telling us about what you are currently doing to manage your RLS and asking any questions that you have. We may be able to help improve both your knowledge and current control of 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.

Rustsmith
Moderator
Posts: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Lapacer

Postby Rustsmith » Mon Jan 14, 2019 1:38 pm

Monday, January 14

Welcome to

Lapacer, whose RLS has affected all areas of life. Lapacer has severe RLS and after trying numerous meds the only thing that has helped is opiods. Now with the DEA's interference pain meds have been slashed to almost nothing. So Lapacer hasn't had a good night's sleep for almost a year since the meds were decreased.

Please post a note giving us an idea of where you live so that we can offer some suggestions for getting your meds back again.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to LynnA

Postby Rustsmith » Mon Jan 14, 2019 1:40 pm

Monday, January 14

Welcome to

LynnA, whose biggest problem is not being able to relax. She usually can't just relax or sleep at night with her husband. She also had problems sitting at her job. Just having the uncomfortable feeling is a big problem.

Please post a note telling us what you are currently taking to manage your RLS so that we can offer some suggestions to discuss with your doctor.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to slkatanick

Postby Rustsmith » Wed Jan 16, 2019 4:18 am

Tuesday, January 15

Welcome to

slkatanick, who has suffered with RLS for 12 years following a knee replacement and treated with Requip, gabapentin, a medication vacation and now oxycontin 10 mg and gabapentin. Since moving from Baltimore to Hollywood Fl, slkatanick has been unable to find a provider willing to prescribe the oxycontin. Very frustrating.

You are experiencing a problem shared my many of us with severe RLS. Please take a look at the Foundation's advocacy program and get involved so that we can try to reverse the pendulum of opioid attitudes and get back to someplace closer to normal.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Mary Souther

Postby Rustsmith » Wed Jan 16, 2019 4:45 pm

Wednesday, January 16

Welcome to

Mary Souther, who has battled restless legs (PLMS) for 40 years and would welcome any helpful information.

Please post a note telling us what you are currently doing to manage your RLS so that we can offer you some suggestions. And feel free 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to stevejg123

Postby Rustsmith » Thu Jan 17, 2019 6:39 pm

Thursday, January 17

Welcome to

stevejg123, who has had RLS 20 years and it keeps getting worse. He has been thru most meds and is now on Horizant and 4mg of Neupro. Both very expensive $600 plus/mo each and insurance won't cover them. Terrible to deal with, spend 2-3 hours most nights pacing the living room even with these meds. Wife leaves the bed most nights.

Most of us have been exactly where you are today. Is it possible that you have augmented on Neupro, or is the Horizant/Neupro combination simply not effective. Please post a note telling us a bit more and whether you think that your doctor would be willing to provide you with opioids for 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.

Rustsmith
Moderator
Posts: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Peasantann

Postby Rustsmith » Thu Jan 17, 2019 11:38 pm

Thursday, January 17

Welcome to

Peasantann, who has severe RLS and like so many is sleep deprived. There are many days she does not feel safe driving to visit her 94 year old mother who lives 45 minutes away. She also lives in Canada where they do not have the RLS specialists and resources found in the US. She went to the symposium last September. From this, she met with an RLS specialist a month later who recommended an iron infusion. But in Ontario, these are only given for anemia. She has tried every medication that is available to her and it seems that she has no options left.

The challenge (even for those of us in the US) is often finding a doctor who will work with you. Although it is difficult, it is possible to get opioids for RLS in Canada so long as you have a doctor who is willing to step up and defend the need. If you will post a note telling us about what you have tried, we may be able to offer some suggestions on how to proceed from where you are right now.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jessica Lamb

Postby Rustsmith » Fri Jan 18, 2019 4:28 pm

Friday, January 18

Welcome to

Jessica Lamb, whose medication worked fine and then it augments. So, life is not easy living with RLS.

No, life is not easy with RLS. Please post a note telling us what you are currently doing following augmentation. We should be able to offer you some suggestions on where to go 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to wilabozo

Postby Rustsmith » Sun Jan 20, 2019 2:58 pm

Sunday, January 20

Welcome to

wilabozo, who has had RLS for over 15 years.

Please post a note telling us what you are doing 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Trudy Whitlock

Postby Rustsmith » Mon Jan 21, 2019 12:18 am

Sunday, January 20

Welcome to

Trudy Whitlock, who has had RLS for about ten years. It affects her sleep, keeping her awake for hours every night.

Please post a note telling what you are doing to manage your RLS. We can offer some suggestions for improving both your RLS and thereby your sleep.
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: 7619
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: JANUARY 2019 - New Members

Postby Polar Bear » Thu Jan 24, 2019 4:44 pm

Thursday 24 January 2019

Welcome to:

amiboo - who has had RLS for his/her whole life and was used to the sleep disruption but upon getting older it's getting worse', medication helps a little but not much. Amiboo has heard cannabis oil might help. Has tried it with limited success and hopes to connect with others to compare notes.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to phill002

Postby Rustsmith » Fri Jan 25, 2019 7:04 pm

Friday, January 25

Welcome to

phill002, has suffered from RLS for 25 years and recently discovered the RLS Foundation, which has been a great help. phill002 wants to learn more about the experiences of others who have this condition.

Please post a note telling us what you are currently doing to manage your RLS and asking any questions that you have. We would love to be able to share with 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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Night Moves

Postby Rustsmith » Sat Jan 26, 2019 3:07 pm

Saturday, January 26

Welcome to

Night Moves, whose RLS rules both personal life and work life. Night Moves is tired, tired of sleepless nights, tired of RLS's control, tired of feeling angry, frustrated, hopeless, anxious....just damn tired.

We can all relate to all of that. Please post a note telling us about what you are doing to manage your RLS. We may be able to help with some suggestions for reducing how tired you feel.
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: 4175
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to AstrosFan

Postby Rustsmith » Sat Jan 26, 2019 3:11 pm

Saturday, January 26

Welcome to

AstrosFan, whose RLS began about 2 years ago (AstrosFan in the 60s). Though it initially responded, and responded well, to gabapentin, that mediation is no longer working, and sleep quality, along with quality of life has significantly deteriorated. Upping the gabapentin dose has not worked; this led to a search the Internet and finding the RLS Foundation. AstrosFan hopes to be able — with the information on the RLS site as well as in this Discussion Board — find and try some other treatment options.

Please post a note telling us about your gabapentin dose and asking any questions that you have so that we can offer you some specific suggestions to discuss with your doctor. (And a personal note from this moderator - Go Astros!)
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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