APRIL 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
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Posts: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

APRIL 2019 - New Members

Postby Rustsmith » Mon Apr 01, 2019 1:06 pm

Monday, April 1

Welcome to

gschwager, who is unable to work at a job it is so bad and can only work a limited amount part time.

Please post a note telling us what you are doing to manage your RLS. Many with severe RLS are still able to work by getting the appropriate meds from their 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to davetubb

Postby Rustsmith » Mon Apr 01, 2019 1:08 pm

Monday, April 1

Welcome to

davetubb, who has had RLS since 2003 with zero help from mainstream medicine but has found 100% relief with Kratom.

Many of our members use kratom for their RLS. Please 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to LDunn

Postby Rustsmith » Mon Apr 01, 2019 3:54 pm

Monday, April 1

Welcome to

LDunn, who had to leave a job because RLS suddenly changed from a controlled bedtime nuisance to a 24/7 nightmare. She has suffered loss of independence, absence from family holidays and birthdays, and plans with friends. She and her husband can no longer make plans to travel or even have a date night without the sure knowledge that they may have to cancel due to uncontrollable RLS symptoms.

Please post a note telling us what you are doing to treat your RLS. We can almost certainly offer some suggestions that will improve your life.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to flipper

Postby Rustsmith » Mon Apr 01, 2019 7:16 pm

Monday, April 1

Welcome to

flipper, who has RLS and recently meds have been less than effective, So, flipper needs to seek opinions/help from others.

Please post a note telling us about your meds along with the dose of each so that we can offer you our comments and suggestions for improving things.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Arogers36

Postby Rustsmith » Mon Apr 01, 2019 7:20 pm

Monday, April 1

Welcome to

Arogers36, whose RLS is the worst at night. Arogers36 is looking for something to help until finding a doctor who can help. And even then will need help with which medications will help.

Please post a note telling us a bit more about your symptoms so that we can offer you some suggestions for surviving until your appointment and what to expect in the way of possible meds. If you mention it and still need help, we can also offer some suggestions for finding a doctor who understands how to properly treat 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: 5248
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: APRIL 2019 - New Members

Postby badnights » Tue Apr 02, 2019 1:20 am

@LDunn
A sudden worsening of WED/RLS is almost always related to something that changed in your life. Did you start taking a new medication, have an operation, donate blood, change your diet, start or stop some form of exercise?
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Alliekins55

Postby Rustsmith » Tue Apr 02, 2019 2:34 am

Monday, April 1

Welcome to

Alliekins55, who is suffering from RLS that is torture.

Please post a note telling us about what you are doing to manage your RLS so that we can offer suggestions to reduce to "torture" levels.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Leecien

Postby Rustsmith » Wed Apr 03, 2019 2:31 pm

Wednesday, April 3

Welcome to

Leecien, who worries every night about what lies ahead. Leecien gets up repeatedly as walking is the only thing that offers relief. Leecien is currently on ropinerole but is fearful of augmentation.

Please post a note telling us about your dose of ropinirole so that we can provide some specific guidance and comments about augmentation. Also, have you tried a very hot bath or shower during the night? It often provides enough relief to allow many of us to fall asleep before the next round hits.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Gab821

Postby Rustsmith » Wed Apr 03, 2019 2:57 pm

Wednesday, April 3

Welcome to

Gab821, who is 40 years old, has been suffering from RLS since a teenager, however, in the past two to three years the condition has worsen terribly and it affects Gab821's entire body (not just the legs). Episodes are very aggressive and have become intolerable. Gab821 is currently taking Ropinirole 4mg and Gabapentin 600mg, but these medications have now caused augmentation.

With 4mg of ropinrole and your recent symptoms, it is very likely that you are in full blown augmentation and need to get off of the ropinirole. This is something that you need to speak with your doctor about and hopefully your doctor is familiar with treating augmentation. If not, please post a note and we can give you some suggestions about how to find a doctor who can help you out at this stage in 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to dzroach

Postby Rustsmith » Thu Apr 04, 2019 2:29 pm

Thursday, April 4

Welcome to

dzroach, whose son has PLMD and so is looking for support groups to help him and our family with his diagnosis.

For a list of support groups, take a look at the RLS Foundation's website. They also have a lot of literature on pediatric RLS and PLMD. We also have a number of posts on that subject in our Special Populations forum. So, please post a note telling us what you have done so far and asking any questions that you have so that we can try to help you both 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Don di

Postby Rustsmith » Thu Apr 04, 2019 7:22 pm

Thursday, April 4

Welcome to

Don di, whose RLS is resulting in very little sleep and being exhausted all day.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have. We should be able to offer some suggestions to improve your situation so that you can get some much needed 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Sleep375

Postby Rustsmith » Sat Apr 06, 2019 1:54 pm

Saturday, April 6

Welcome to

Sleep375, who has RLS and wants to learn how others manage it.

Please post a note telling us about your RLS and what you are doing to manage it 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to tjones

Postby Rustsmith » Sat Apr 06, 2019 9:02 pm

Saturday, April 6

Welcome to

tjones, who has had RLS for about 50 years. It is the worst thing ever. Nights can be bad with no or little sleep. tjones has tried most of the drugs for RLS. was on Mirapex for several years 1mg 3 times a day. Have had augmentation lately. Talked to Dr two days ago and is trying to get off Mirapex and switching to gabapentin, half Mirapex and 1 gabapentin 300 right now.

That is a huge amount of Mirapex. The normal recommended max for RLS is 0.5mg/day. You have a difficult road ahead of you because getting off the last little bit of Mirapex will result in zero sleep for a couple of days and gabapentin isn't strong enough to cover the final stages of withdrawal. Take a look at the files in our Augmentation forum. Also, feel free to post a note asking any questions that you have, including whether it would be good to find a doctor who is more familiar with treating augmentation and RLS in general.
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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to annieluigi

Postby Rustsmith » Sun Apr 07, 2019 2:19 am

Saturday, April 6

Welcome to

annieluigi, whose RLS equals misery. She had no quality of life for years due to RLS. She is a senior and has dealt with RLS since she was in her 20's. From her mid 50's on it became a constant every night. She is old enough that she has tried it all. Started with quinine sulfate, sinemet, permax, mirapex, requip, dopamine, the patch etc. One night when she was so sleepy, she fell asleep while walking and ran into a doorway in the kitchen.

She is now under the care of one of the leading RLS experts and is receiving proper treatment. Her life has made a 180 degree turn. She sleeps now..... just like a normal person.

Finding the right doctor makes all the difference in the world. Please post a note telling us a bit about yourself and feel free to join 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: 4035
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to twitch

Postby Rustsmith » Mon Apr 08, 2019 12:53 pm

Monday, April 8

Welcome to

twitch, who has learned to get around the symptoms and can perhaps help others with RLS...

We welcome any suggestions of new ways to address the symptoms of RLS. Please post a note and tell us 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.


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