NOVEMBER 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

NOVEMBER 2017 - NEW MEMBERS

Postby Rustsmith » Thu Nov 02, 2017 8:24 pm

Thursday, November 2

Welcome to

basketwoman, whose RLS has been chronic for herself and her daughters. The only thing that helps has been carisoprodol at night. Now with the war on opioids our rural country Dr, with no clue, will not prescribe carisoprodol. Even though she has been on the same dose for 20 yrs. It allows her to sleep at least 3 hrs.

Please post a note telling us a bit more about your RLS, what you are currently doing to manage your RLS and whether your doctor would be receptive to expert information on the treatment of RLS. Many of us have been in situations similar to your, so we can provide you with some suggestions to consider. Also, since your doctor is not willing to continue with carisoprodol, is he doing anything to help you get off of it or did he simply stop writing new prescriptions?
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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Momsgt

Postby Rustsmith » Fri Nov 03, 2017 5:17 pm

Friday, November 3

Welcome to

Momsgt, who cannot sit still when required to: meetings, on a plane, in a car, church, etc.

Those are all issues that we all share. I personally hate plane flights, yet my job required frequent international travel before I retired. Please post a note telling us what you are doing to manage 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to crackedvessel

Postby Rustsmith » Fri Nov 03, 2017 7:57 pm

Friday, November 3

Welcome to

crackedvessel, whose RLS affected virtually every aspect of life. From sleep to relationships to work to overall health, there's basically nothing that hasn't been touched in a negative way by RLS.

Please post a note telling us a bit about what you are doing to manage your RLS and asking any questions that you have. And feel free to jump into 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to mariapple

Postby Rustsmith » Fri Nov 03, 2017 8:01 pm

Friday, November 3

Welcome to

mariapple, whose RLS is fairly mild and sporadic, so low-dose hydrocodone works great. Her clinic is making her jump through all sorts of "chronic pain patient" hoops, including urine testing for illegal drugs. Wondering if anyone else has similar issues, especially with all the opiate addiction concerns.

Unfortunately, your experience is not unusual. All of us who are on opioid meds are having issues. Please post a note telling us a bit more, ask any questions that you have and feel free to join any of our 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cherylh9

Postby Rustsmith » Sat Nov 04, 2017 1:57 pm

Saturday, November 4

Welcome to

Cherylh9, who has trouble flying, sometimes has to sleep on the floor and feels trapped very easily if she can't move about freely.

Those are all issues we have all experienced. Please post a note telling us what you are doing to manage 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Parksly

Postby Rustsmith » Sat Nov 04, 2017 2:00 pm

Saturday, November 4

Welcome to

Parksly, who has heard that 10% of Americans have RLS, but Parksly doesn't know any one who has it to the same degree. Parksly has it every day and at it's worst it is all day long.

It is true that the estimate is between 10 and 17% have RLS, but only about 1% have the severe form. Please post a note telling us what you are doing to manage the symptoms and asking any questions that you have. Most of us on this discussion board join you in the severe 1%, so we can appreciate 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to juju

Postby Rustsmith » Sat Nov 04, 2017 3:04 pm

Saturday, November 4

Welcome to

juju, who suffers from insomnia, plus now RLS. It started out couple years ago, for a week or less and now it seems to occur almost every night. She has to get up and walk around, go back to bed. Sometimes it stops then, sometimes not. She did use Neurontin for about a month for anxiety and it also alleviated her RLS. However, she didn't like side effects, so she discontinued it and is trying to go natural. She is Just getting frustrated, and doesn't want to buy bunch of vitamins and waste her money if they aren't going to help.

Take a look through our forums on physical treatments and non-prescription meds to get an idea of what works and what doesn't. And please post a note telling us more about your RLS so that we can offer some 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Jacqueline

Postby Rustsmith » Sat Nov 04, 2017 3:56 pm

Saturday, November 4

Welcome to

Jacqueline, who can't sleep due to RLS, cannot go out at night, has to have a single bed, etc.

Please take a look around and then post a note telling us how you are currently managing 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Krislawyer

Postby Rustsmith » Sun Nov 05, 2017 2:39 am

Saturday, November 4

Welcome to

Krislawyer, who has had RLS for most of Krislawyer's life, has resisted taking medication for it and would like to explore non prescription remedies.

Take a look through our forums on Physical Treatments and Non-prescription meds to see if you can find some idea. And please feel free to post a note telling us a bit about your symptoms so that we can offer some more 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to pwicca

Postby Rustsmith » Mon Nov 06, 2017 1:28 pm

Monday, November 6

Welcome to

pwicca, whose RLS causes chronic sleep deprivation. He was treated with Tramadol 100 mg daily for many years but recent restrictions resulted in his having to discontinue the Tramadol and begin Requip. Requip did not help very much and initiated involvement of the upper extremities, caused drowsiness such that he reduced driving, and when he tried to taper off the Requip all of his symptoms increased.

Please read through the information in our Augmentation forum since it sounds like that is what you have experienced with Requip. And then please post a note with your experiences so that we can offer you some specific comments and 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to John C

Postby Rustsmith » Mon Nov 06, 2017 5:54 pm

Monday, November 6

Welcome to

John C, who wants to find out how to relieve symptoms.

Please post a note telling us about your symptoms and what you are currently doing to manage your RLS so that we can provide some 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Titolette

Postby Rustsmith » Tue Nov 07, 2017 1:22 am

Monday, November 6

Welcome to

Titolette, who was recently diagnosed with RLS. She is unable to have a good night sleep and has tried various homeopathic remedies but nothing helped. She is just beginning gabapentin at 300mg every evening.

Please post a note telling us a bit more about your symptoms and keep us up to date as to how you do on gabapentin. And feel free to ask any questions that you have about 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to rhowpatt

Postby Rustsmith » Wed Nov 08, 2017 2:36 am

Tuesday, November 7

Welcome to

rhowpatt, whose RLS has gotten to the point where everyday activities have been slowed down. She gets up and down all hours of the night and is at her wits end and is not sure what to do.

Please post a note telling us about your symptoms and whether you are doing anything to manage your RLS so that we can offer some suggestions. 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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Cgriffin

Postby Rustsmith » Wed Nov 08, 2017 8:47 pm

Wednesday, November 8

Welcome to

Cgriffin, who is looking for any non-medical or medical treatment that work.

Take a look around and then please post a note telling us about your RLS so that we can offer some specific suggestions for you and your mother.
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: 3016
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Welcome to Katie

Postby Rustsmith » Thu Nov 09, 2017 8:27 pm

Thursday, November 9

Welcome to

Katie, who has augmented on ropinirole. She is taking 36mg or better. She cant find a care giver to help.

You definitely need to find a doctor who understands RLS. The max recommended dose of ropinirole for RLS is 4 mg and for Parkinsons is 24mg. You are going to need help getting of of this medication. Please post a note telling us a bit more about your situation so that we can offer some advice.
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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