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

Welcome to Andie733

Postby Rustsmith » Thu Dec 13, 2018 5:08 am

Wednesday, December 12

Welcome to

Andie733, who has been suffering with RLS for about 8 years. It's having a major impact on all aspects of her life. She wants to be part of a community of people who understand living with RLS.

Unfortunately we all understand about living with RLS. Please post a note telling us about your symptoms, your current medications 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 bslemmer

Postby Rustsmith » Thu Dec 13, 2018 4:51 pm

Thursday, December 13

Welcome to

bslemmer, who has had restless legs for years and as it is getting worse with age. Hoping to find some way to get sleep.

Please post a note telling us what you are doing to manage your RLS so that we can offer you some specific suggestions to improve 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.

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

Welcome to Angeleyes2230

Postby Rustsmith » Sat Dec 15, 2018 3:21 am

Friday, December 14

Welcome to

Angeleyes2230, who has been suffering for 3 years. Her RLS is progressively getting worse. She is on MIRAPEX but it is not helping.

It sounds a lot like you may be experiencing augmentation, which is a side effect of Mirapex that many doctors are not familiar with. Please take a look at our forum on Augmentation and post a note telling us about your current dose and symptoms so that we can offer you some comments about how to proceed 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to stockton2malone2

Postby Rustsmith » Sat Dec 15, 2018 3:23 am

Friday, December 14

Welcome to

stockton2malone2, who has had RLS for 10 years. Initially it was very tolerable, but over time it has gotten worse and worse. Dopamine agonists allowed stockton to function for several years until unfortunately they didn't and has since tried a lot of other meds without much success.

Please post a note telling us about the meds that you have tried. There are probably options that you have not tried that have a good chance of working, both in the near and long term.
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 jams321

Postby Rustsmith » Sat Dec 15, 2018 3:45 pm

Saturday, December 15

Welcome to

jams321, whose best friend has been struggling for years. He is at the extreme end of the spectrum. Drugs are horrible and he hasn't had supportive DRs so jams want to learn everything possible.

What a great thing to do for your friend. As you have probably guessed, finding a good doctor is everything since most are not familiar with treating anything beyond mild RLS. Please post a note telling us where you live so that we will have a better idea of how to suggest how he can find a good 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 rfitz1818

Postby Rustsmith » Sun Dec 16, 2018 6:12 pm

Sunday, December 16

Welcome to

rfitz1818, who needs more information about this condition. RLS has destroyed his life because he doesn't sleep much anymore.

Take a look around and then please post a note telling us what you are doing to manage your RLS so that we can offer 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to marc22rod

Postby Rustsmith » Tue Dec 18, 2018 8:34 pm

Tuesday, December 18

Welcome to

marc22rod, who suffers from PLMD and he and his wife have been sleeping in separate beds for almost a year. He tried ropinerole but suffered from augmentation and dizziness upon standing so his doctor DC'd the medication.

Please post a note telling us about the dose of ropinirole that you were taking and whether your doctor did any blood work. There are other options for treating PLMD, so we should be able to offer you some suggestions once we know a bit 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to plbstudio2009

Postby Rustsmith » Wed Dec 19, 2018 3:30 pm

Wednesday, December 19

Welcome to plbstudio2009, who I is joining because of RLS sleepless nights, pain, withdrawal from some activities, worry about my difficulties with it, augmentation, a Doctor who doesn't understand augmentation treatments, and isolation from others coping with this disorder.

You are no longer isolated from others with RLS because we are here to discuss any issues that you need. Please post a note telling us about your current RLS treatment(s) so that we can get the ball rolling.
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 Restless Nana

Postby Rustsmith » Sat Dec 22, 2018 4:01 pm

Saturday, December 22

Welcome to

Restless Nana, who has suffered for years, No one believes RLS could be as bad as it is. She just wants to sleep in her bed and not run holes in the sheets.

Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions for improving the control of your symptoms.
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 restlessknight

Postby Rustsmith » Sat Dec 22, 2018 4:06 pm

Saturday, December 22

Welcome to

restlessknight, who was diagnosed with mod-severe RLS 14 years ago. He was an airline pilot with 3 children and wife. The FAA revoked his license due to the diagnosis. His neurologist is a specialist in sleep disorders and his treatment has been managed as well as could be expected. Even so, he sleeps on average only a few restless hours a day. Most weeks he goes through a day or two with no sleep. Occasionally he goes up to 60+ hours with no sleep. Reality becomes blurred and depression is constant. He lives a life alone after his kids and wife are asleep. When they are awake, he struggles to maintain his composure when dealing with the smallest of daily problems. His condition has worsened over time and now he is going to need switch to Methadone for treatment.

We wish you will with the switch in treatment. Many of us have been helped with a change to methadone, so we really hope that you see a tremendous change in your life with this switch.
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 CAS49

Postby Rustsmith » Sat Dec 22, 2018 4:08 pm

Saturday, December 22

Welcome to

CAS49, who cannot sleep more than 2-3 hours if that. It has progressed to whole body RLS due to augmentation. CAS is worn out. Legs get weak which affects mobility.

Please post a note telling us what you are currently taking for your RLS. We may be able to offer some suggestions to give your doctor that will help 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Marlin

Postby Rustsmith » Sat Dec 22, 2018 6:30 pm

Saturday, December 22

Welcome to

Marlin, whose RLS leads to sleep deprivation, which leads to depression, which leads a diabetic loss of control over blood sugars. Over all, Marlin's leads a wrecked life.

Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions to improve your sleep and thereby 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to repair1867

Postby Rustsmith » Mon Dec 24, 2018 3:11 pm

Monday, December 24

Welcome to

repair1867, who has only experienced the symptoms at night for the past 3 or 4 years, and about 3 months ago had to have surgery to replace a defective heart valve. Now about 8 weeks after surgery repair's RLS started getting progressively worse. now it starts as early as 10 am sometimes and is extremely bad, sometimes with arms and shoulders jerking and hurting. Mirepex no longer has any effect on the pain or jerking, even after increasing from .25 mg to 1 mg.

You are probably experiencing augmentation, a side effect of extended use of Mirapex that many doctors are not familiar with. Please take a look at our forum on Augmentation and post a note so that we can offer you some suggestions about how to regain 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: 4194
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Antiqanon

Postby Rustsmith » Mon Dec 24, 2018 5:42 pm

Monday, December 24

Welcome to

Antiqanon, who is 76 and has been dealing with RSL for years. She was on Mirapex for a long time and just experienced augmentation, then changed to Requip and is still having a lot of trouble.

Please post a note telling us about your troubles so that we can offer some suggestions for improvement. Many doctors are not familiar with treating augmentation, so frequently we need to provide our physicians with guidance in this area.
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 sewinglady

Postby Rustsmith » Fri Dec 28, 2018 3:06 pm

Friday, December 28

Welcome to

sewinglady, whose RLS causes her to be unable to sleep, leaves her with fatigue and a great deal of after soreness and aching.

Please post a note telling us a bit about what you are doing to manage your RLS 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.


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