NOVEMBER 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

NOVEMBER 2019 - New Members

Postby Rustsmith » Fri Nov 01, 2019 5:02 pm

Friday, November 1

Welcome to

CLARK0605, who has been affected with RLS for the past 15 years, since her daughter was born. She had good luck with DA drugs (ropinerole and then pramipexole) until she started having major middle of the night insomnia about 3-4 years ago. Made the decision to gradually switch to pregabalin and had her last dose of pramipexole on Oct 12th. Having a pretty difficult time at the moment and hoping to get some help/support/ideas on way forward.

Pregablin isn't strong enough to cover the withdrawal from pramipexole, but you are over the worst of it and things will generally improve. Some of us are able to get along with just pregablin or gabapentin following DA augmentation while others of us require an opioid to treat our RLS.

Please feel free to post a note with any questions that you have or simply join one of our existing 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to JGrace

Postby Rustsmith » Fri Nov 01, 2019 5:49 pm

Friday, November 1

Welcome to

JGrace, whose RLS has affected her sleep so that she is tired in the day time. She also has problems getting used to Ropinirole.

Please tell us a bit about your issues with ropinirole so that we can have an idea of what to suggest to you. 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to RPO

Postby Rustsmith » Sat Nov 02, 2019 9:37 pm

Saturday, November 2

Welcome to

RPO, who has difficulty sleeping and has to get up and sit in a chair 1-2 times a night

Please post a note telling us what you are currently doing to treat your RLS so that we can offer you some suggestions to get a full night's 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.

Rustsmith
Moderator
Posts: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to sliderdkp

Postby Rustsmith » Sat Nov 02, 2019 9:39 pm

Saturday, November 2

Welcome to

sliderdkp, who says that RLS and the treatments are horrible.

Please post a note telling us about the treatments that you have tried and the issues that you had with each 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to RLS43

Postby Rustsmith » Sun Nov 03, 2019 6:50 pm

Sunday, November 3

Welcome to

RLS43, who has had RLS for over 20 years and is always interested in new & innovative treatments and also with breakthrough RLS treatments.

Please post a note telling us about your current treatment and asking any questions that you have. Also take a look at the Research discussion thread in the General Topics forum to get an idea of the latest research 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Homestarmy

Postby Rustsmith » Mon Nov 04, 2019 3:18 am

Sunday, November 3

Welcome to

Homestarmy, who has suffered with RLS for almost thirty years and, for the vast majority of that time, he dealt with it alone. He takes 600mg of gabapentin along with 2mg of mirapex and his symptoms aren't controlled; his nights are a hell of exhaustion and involuntary movement. He is augmented, and tried covering with a 3rd mg of Mirapex, but that failed as well. Two weeks ago he stumbled across a miracle device that completely alleviates his symptoms, and he wants to get the word out because, despite a couple of small positive research studies around 2007 - 2010, this seems to be completely unheard of. He is using a PCD (pneumatic compression device), and it is amazing. He wants to share that with anyone who will listen.

As you said, pnuematic compression is something that has been around for a while. It doesn't work for everyone, but it does help some. Glad that you are one of the ones who benefits from this device.
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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to ninoescofet

Postby Rustsmith » Mon Nov 04, 2019 2:44 pm

Monday, November 4

Welcome to

ninoscofet, who was recently diagnosed with RLS. Nino would like to hear about other people's experiences and would like to learn more about various medications and treatment options.

Please post a note telling us what you are currently doing to manage your RLS so that we can have an idea of where to start with explanations about the various treatment options open to 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to MKoz

Postby Rustsmith » Tue Nov 05, 2019 4:42 pm

Tuesday, November 5

Welcome to

MKoz, who was diagnosed with RLS over twenty years ago and has seen and experienced a lot in those years.

Please post a note telling us a bit about your RLS experiences over those 20 yrs.
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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to michebjerke

Postby Rustsmith » Fri Nov 08, 2019 2:46 pm

Friday, November 8

Welcome to

michebjerke, whose husband has severe RLS and she wants to help him with treatments and support.

Please post a note telling us about his treatments and asking any questions that you have so that we can provide some of the support that you are looking for.
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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Hoknott

Postby Rustsmith » Sat Nov 09, 2019 6:35 pm

Saturday, November 9

Welcome to

Hoknott, who was diagnosed with WED/RLS in 2004. After menopause etc she required medication. She has a doctor who specializes in sleep disorders & follows Dr Earley. Before treatment, she was suicidal from sleep exhaustion & coping with physical symptoms.

Please post a note telling us about your medication 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jillyand40

Postby Rustsmith » Tue Nov 12, 2019 2:41 pm

Tuesday, November 12

Welcome to

jillyand40, who says that it may seem to normal people that RLS is not a big deal...but it is. jilly has been trying to sleep for 5 hours tonight and is still awake with what jilly calls...jumpy legs. it is very aggravating and depressing.

Sleep deprivation is something that most of us have learned to live with. Please post a note telling us what you are doing to manage your RLS so that we can offer you 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Lbrick

Postby Rustsmith » Tue Nov 12, 2019 3:29 pm

Tuesday, November 12

Welcome to

Lbrick, who has had RLS for a good 40 years now and is getting desperate for help. Mute Dr’s don’t seem to know what to do so she feels she is on her own. She doesn’t sleep and is embarrassed to be in a relationship because they think she is crazy! This has taken over her life for years now and she is miserable!

Please post a note telling us what your doctor(s) have prescribed and what you are currently taking. We can offer you some suggestions, including how to find a doctor who understands and 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.

Rustsmith
Moderator
Posts: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to walkerwear

Postby Rustsmith » Tue Nov 12, 2019 5:03 pm

Tuesday, November 12

Welcome to

walkerwear, whose husband has severe RLS in all limbs and rarely sleeps. He has tried so many meds, but there's always augmentation in the end to reset his progress to zero.

Please post a note telling us which meds he has tried. There are very effective meds that do not lead to augmentation. We know because most of us have been there too.
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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Ata

Postby Rustsmith » Wed Nov 13, 2019 4:15 am

Tuesday, November 12

Welcome to

Ata, who has had RLS for about 4 years and it has been a total obstacle and disruption to life.

Please post a note telling us what you are doing to manage your symptoms so that we will know what sort of things to suggest to you to remove those obstacles and disruptions.
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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cookie

Postby Rustsmith » Thu Nov 14, 2019 12:54 am

Wednesday, November 13

Welcome to

Cookie, whose RLS runs in her family. Her father suffered terrifically 50 years ago. Without medication, she would never sleep and now has learned her teenage granddaughter is being to have bouts. She would like to learn more about treatments, new research, and possible non-pharmacological treatments.

Take a look around to get an idea of the variety of treatments that are available, and feel free to post a note with any questions or comments 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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