APRIL 2017 - 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to maremetts

Postby Rustsmith » Wed Apr 12, 2017 2:31 am

Tuesday, April 11

Welcome to

maremetts, who due to RLS now has insomnia and hasn't been able to really rest in months.

Welcome to the club since insomnia is part of RLS for almost all of us. Take a look around and then 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to JennyB

Postby Rustsmith » Thu Apr 13, 2017 2:22 am

Wednesday, April 12

Welcome to

JennyB, who is a little freaked out because today for the first time she felt it while was standing up and thinks it's moving to her arms.

Take a look around and if you are currently taking a dopamine agonist like Mirapex or Requip, look through the Augmentation forum. And then please post a note telling us a bit about what you are doing to manage your RLS and asking any questions that we might be able to help with.
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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to dmadis

Postby Rustsmith » Sat Apr 15, 2017 3:44 am

Friday, April 14

Welcome to

dmadis, who is the spouse of an RLS victim. She doesn't know how to deal with his moods and attitude. He frequently says " if he had a gun, he would kill himself".

We can certainly try to help you understand since many of us can sympathize with his statement. Please post a note telling us a bit more so that we can try to explain and suggest things that you can do to 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.

Polar Bear
Moderator
Posts: 6657
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Welcome d0wn0wn

Postby Polar Bear » Mon Apr 17, 2017 11:12 am

Monday 17 April

Welcome today to

d0wnt0wn -whose onset started at the age of 19, and has progressively been getting worse....has had a multitude of tests done. D0wnt0wn feels there are no words for the severity of the pain or how it effects life and would like to connect with others that suffer from the same ailment... could use some moral support.

Members here will fully understand how you are feeling. When you feel ready please post and let us know how you have been coping and treating your symptoms. We are here to support you.
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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to cfkid

Postby Rustsmith » Mon Apr 17, 2017 12:09 pm

Monday, April 17

Welcome to

cfkid, who has had RLS for quite a while and is struggling with control at this point. He'd like to be able to discuss the issues and symptoms with others that understand my condition.

This is certainly the place to discuss symptoms and issues with managing RLS. Please post a note with any comments or 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Janine

Postby Rustsmith » Mon Apr 17, 2017 5:52 pm

Monday, April 17

Welcome to

Janine, who experienced RLS onset at age 9 and is now middle aged. She has not had a night off of it in 22 1/2 years.

We all know the feeling. Take a look around and then jump into a discussion or start a new one to introduce yourself or 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Gaely1

Postby Rustsmith » Tue Apr 18, 2017 12:47 am

Monday, April 17

Welcome to

Gaely1, who wants to keep current on strides made in RLS & hear what has worked for others since when uncontrolled, it is a nightmare. And the other nightmare is finding something that works is no longer available.

We all totally understand both of these nightmares. Please either jump into any of the current conversations or post a new 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to judij

Postby Rustsmith » Tue Apr 18, 2017 12:09 pm

Tuesday, April 18

Welcome to

judij, who has had a lifelong problem with RLS that has not been solved with various pain medications. I have tried a number of different herbal supplements without success.

Take a look around to get an idea of what others use, 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to JenniferC

Postby Rustsmith » Tue Apr 18, 2017 12:15 pm

Tuesday. April 18

Welcome to

JenniferC, who is joining the group with the hope that she can learn more about RLS. She have been living with Multiple Sclerosis for 23 years. But the RLS has really made her anxious and fearful.

Take a look around to get an idea of what we do. You will find that you are not the only one with co-morbid MS since RLS is often associated with MS. And please post a note telling us what you are doing to try to manage your RLS symptoms 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jvondolen

Postby Rustsmith » Tue Apr 18, 2017 3:49 pm

Tuesday, April 18

Welcome to

Jvondolen, who has had RLS for 30 years and requires medication every night in order to sleep. Jvondolen also has daytime symptoms beginning in mid to late afternoon, which vary in intensity and is currently taking low dose hydrocodone and clonazepam

Take a look around to get an idea of how others manage their RLS and then please 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.

Rustsmith
Moderator
Posts: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to jlcusmar

Postby Rustsmith » Tue Apr 18, 2017 7:41 pm

Tuesday, April 18

Welcome to

jlcusmar, whose RLS started in her 20s while pregnant. Taking iron supplements and avoiding fish oil supplements was helpful for a bit but her condition worsens with age (in her 50s now). She tried prescription medication but augmented. She now takes iron, calcium, magnesium, Vitamin D, Vitamin E, B complex, and choline/inositol, but has yet to find the magic, long lasting bullet for her RLS and insomnia issues.

We all know your situation all too well. Take a look around and then feel free to jump into a discussion or to post a new 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.

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Welcome to brekorin

Postby badnights » Thu Apr 20, 2017 9:59 am

Hi and welcome to our discussion board!
We're looking forward to hearing your story. Please make yourself at home and post replies or start new topics, as you choose. I'm glad you're a fighter and I'd love to hear how you're fighting it!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Rustsmith
Moderator
Posts: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Kyle

Postby Rustsmith » Thu Apr 20, 2017 11:11 pm

Thursday, April 20

Welcome to

Kyle, who has had RLS sense he was a kid and the symptoms continue to worsen. And now he is looking for a better way to manage his symptoms.

You will find quite a number of ways to manage your conditions in our discussions, depending upon the severity. Look around and feel free to post a note telling us about yourself, 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: 2404
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to timphillips

Postby Rustsmith » Fri Apr 21, 2017 7:58 pm

Friday, April 21

Welcome to

timphillips, who has had RLS since he was a teenager and is now 53. He has been taking pramipexole for approximately 12 years and has been 1.5 mg per day at least the past 5 years and now has augmentation. He is looking for help in the process of getting off the drug and finding a new solution.

Take a look through our forum on Augmentation and please post a note with some more specifics, such as how knowledgeable your doctor is with treating augmentation, whether he/she would be willing to accept guidance from you if not, whether he/she would be willing to consider prescribing an opioid to help you get off of the pramipexole and finally, whether there is an RLS Foundation Quality Care Clinic that is within a reasonable distance of 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.

badnights
Moderator
Posts: 4317
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

welcome Chrisblis

Postby badnights » Sun Apr 23, 2017 6:41 am

Hi Chrisblis and welcome to the board. Please post a little about yourself. You will find that medication for WED/RLS can be a double-edged sword - and that, sadly, most doctors don't know any more than the barest basics. You should have your ferritin level tested. Low ferritin is known to be a problem in WED/RLS and has been linked to bad outcomes (worsening of the condition) on dopamine agonist medication (pramipexole/Mirapex, ropinirole/Requip). To use those medications safely, your ferritin levels should be in the high range of what's considered normal for people without WED/RLS (i.e. over 100 ng/ml)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest