NEW MEMBERS - AUGUST 2016

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

NEW MEMBERS - AUGUST 2016

Postby Polar Bear » Mon Aug 01, 2016 5:05 am

Welcome today to

Nicolelyn - who has suffered from RLS for 2 years.

and to

thacka - who is a 52 year old male with a 15 year history of RLS and is looking to learn more about the disease and potential relief that might be available.

Have a look around the 'Managing your RLS' at the top of this page and feel free to start a thread telling us how you have been coping with your symptoms.
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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Tue Aug 02, 2016 4:32 pm

Tuesday, August 2

Welcome to

jasdeese, who has severe symptoms and recently have sustained serious injuries while walking late at night. Only by walking briskly is jasdeese able to relieve symptoms, but then can fall asleep while walking. jasdeese's current physician -- an RLS specialist -- does not understand the need to walk.

Take a look around and then please post a note telling us a bit more about yourself, how you manage your RLS other than walking and what questions that we can answer.
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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Wed Aug 03, 2016 10:25 am

Wednesday, August 3

welcome today to

Heyyy_REDDOG, who has suffered with WED/RLS for as long as he can remember. But around 10 years or so ago, he became keenly aware of the fact that his fidgeting was encroaching on sleep. And as a video producer, he hoping to raise awareness of WED/RLS and perhaps play a small part in improving the lives of fellow sufferers.

Take a look around and then please post a note introducing yourself, describing your current treatment 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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Thu Aug 04, 2016 5:06 pm

Thursday, August 4

Welcome to

tryinginva, who is a 54 yr old female who has suffered from diagnosed RLS for years but has significantly worsened in last 6 months. Her neurologist just increased her dose to 4mg three times a day. She has gained 30 pounds in 2 months, has severe nausea, and just completed a series of IV iron infusions.

Please take a look around and then post a note introducing yourself and asking any questions that you have. Also, please check your email address because you appear to have a typo.
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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Sun Aug 07, 2016 10:56 am

Sunday, August 7

Welcome today to

seira, who is tired much of the time and finds that RLS affects plans for the next day after a sleepless night.

and to

Mahearn, whose life revolves around taking the meds to try to control her RLS.

Take a look around and then feel free to post a note introducing yourself and asking any questions that you have.

as well as to

JMS1959, who hse severe RLS, among other sleep disorders, which is fairly well controlled with Mirapex. His 84 year old mother also has it (as did his grandmother) but she doesn't react well to Requip or Mirapex (hallucinations). Hoping to find others with her problem and see if there are alternatives that work.

Take a look through out Prescription Medications forum to get an idea of her options. These include the Neupro patch, the alpha-2-delta meds like gabapentin, Horizant and Lyrica and the opiates. And feel free to post a note introducing yourself (and your family) and asking any questions that remain.
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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Tue Aug 09, 2016 10:22 am

Tuesday August 9

Welcome to

mikeh359, who has had rls for over 30 years. Before the internet he thought he was the only person with this issue. He tried to describe it to various doctors to no avail. Now there is help and it is a crisis for many people.

Yes, "You are not alone", either with your RLS or, sadly, your experience with your doctors. Please feel free to post a note introducing yourself and asking any questions that you have.

and to

kmwelcome, who has struggled for years with RLS, now getting much worse (at 71); has tried Mirapex (GERD), Lyrica (doesn't work at all), Clonazapam (worked for a while, but Dr would not go beyond 10 mg, and eventually needed more than that). kmwelcome exercises (swim/line dancing/Tai Chi) a lot, doesn't know if that is making it worse, but for health reasons, hates to give up exercise. At end of rope.

Take a look around to see what you can find that might help, and please feel free to post a note introducing yourself and asking any questions that you have.

and to

DaveG, who I has been struggling with RLS for more than 5 years, not sleeping, anxious about long distance flying and sometimes feeling that it somehow is his fault and isn't a disease like most others. He is looking for support, encouragement, information and medical treatment insights. The only thing he has found that works sometimes is a creme with THC rubbed on his legs before sleeping at night.

Take a look around to get an idea of information that we have. And then please post a note telling us about yourself, asking any questions and telling us a bit more about your THC cream.
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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Wed Aug 10, 2016 12:20 pm

Wednesday, August 10

Welcome to

lgrant, who first experienced the symptoms of RLS when just five years old. It is both chronic and progressive. Like many, lgrant just wishs for a reasonable night's sleep.

Take a look around and then please post a note introducing yourself 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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Fri Aug 12, 2016 1:42 am

Thursday, August 11

Welcome to

Petra Hoffman, who needs authentic information on RLS and wants to ask some question from the community.

Please feel free to post a note introducing yourself 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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Fri Aug 12, 2016 7:33 pm

Friday, August 12

Welcome to

gbucky, who has Parkinson's and RLS and so is apparently difficult to treat. Has started Horizant, but it is too soon to tell if this will really help.

Take a look around to get an idea of the variety of treatments available for RLS. And please post a note telling us a bit about yourself, your treatment and what we can do to help.

and to

Shortbets, who is a long time sufferer, dreads evenings, has tried different meds and is becoming discouraged since RLS is a progressive disease..

Take a look around to get an idea of the different approaches that our members use and you will get an idea of why we say that there is always something else to try. And please post a note telling us about yourself, your treatments 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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Sat Aug 13, 2016 11:24 am

Saturday, August 13

Welcome to

auntcarrie4, who is waking up nightly after going to sleep for 20 minutes or so and then is so fidgety that she can't go back to sleep. She is losing sleep and it is becoming more stressful.

Take a look around and then feel free to post a note telling us about yourself 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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Sun Aug 14, 2016 6:59 pm

Sunday, August 14

Welcome to

anns, who is suffering every night and cannot sleep due to leg sensations. RLS is affecting the quality of her life as she is tired all of the time and lacks patience due to lack of sleep.

These are all complaints that we all experience. Take a look through our files to get an idea of what you can do to help cope and feel free to post a note introducing yourself 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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Mon Aug 15, 2016 8:37 am

Monday August 15

Welcome to

dawest58, who has always had RLS as an adult. The only thing that has managed the RLS is Lyrica, but it causes gain weight. Therefore, dawest is hoping to find alternative treatments other than pharmaceuticals.

Take a look through our forums on Physical Treatments and Non-Prescription medications to get an idea of what has helped and what has not. An please post a note with any questions that your have.

and to

Alia Andrews, who has severe RLS 24/7. She becomes non-functional after 2 days without treatment and has been through about everything that can be found for treatment. Right now she is on ropinirole and methadone which does very well. The only problem is her neurologist has retired and she is now trying to find one who will continue to treat me. The clinic where he worked is currently honoring the pain contract but she doesn't know fir how long.

We all wish that your story was uncommon, but unfortunately it isn't. Please post a note telling us where you are located so that hopefully we can offer a few specific 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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Tue Aug 16, 2016 7:12 pm

Tuesday, August 16

Welcome to

lawnguy1, who thinks he is getting restless leg syndrome and therefore is seeking advice and information.

Take a look through the discussion in "A good place to start" at the top of this forum to get an idea of the issues associated with RLS and what can be done to treat it. Then, feel free to post a note asking any questions that you have.

and to

nonirestleas, who would like to share about what she has found to be helpful and would like to hear what others have to say. She would also like to learn more about RLS.

Take a look through our files on the various types of treatment and then please post a note introducing yourself 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.

Polar Bear
Moderator
Posts: 6702
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: NEW MEMBERS - AUGUST 2016

Postby Polar Bear » Wed Aug 17, 2016 8:41 am

Wednesday 17th August

Welcome today to

SleeplessinSD - whose husband suffers from RLS and who thinks this site might help them.

You are very welcome, please read the 'A Good Place to Start - Managing your RLS' at the top of this Just Joined section and feel free to start a thread telling us how your husband has been coping. We do try to help.
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: 2458
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: NEW MEMBERS - AUGUST 2016

Postby Rustsmith » Thu Aug 18, 2016 9:55 pm

Thursday, August 18

Welcome to

Mistyhazed, who is newly diagnosed and says she wishes she could cut both legs off. She was put on medication but had a reaction and was taken off of it. But she can't sleep and is considering taking it again.

Please take a look around and then feel free to post a note introducing yourself, telling us a bit more about your symptoms and treatment 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.


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