JANUARY 2020 - New Members

Whether new to RLS 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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to WayneWayne

Post by Rustsmith »

Monday, January 18

Welcome to

WayneWayne, who has been diagnosed with RLS and Cramp Fasciculation Syndrome. For him, it's a sleep disorder with significant downside in multiple ways.

According to the latest DSM-V diagnostic criteria, RLS is considered a sleep disorder. That is a major switch since insomnia wasn't included as a part of RLS until 8 yrs ago. If there is any information that we can help with, just post a note and ask.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Sal

Post by Rustsmith »

Tuesday, January 19

Welcome to

Sal, who is exhausted because of minimal and disjointed sleep. Sal's whole life is effected. Sal is anxious because the codeine that used to work doesn’t anymore. Sal's doc is prescribing methedone. So Sal asks if this a good choice?

Methadone is the first choice opioid for many doctors, so many of us have been on it. It is a good choice for the treatment of RLS for many reasons, not the least of which is that it provides 24 hr coverage with just one pill. I can have some side effects (such as alerting) that are different from codeine, but these are manageable most of the time. If you have any questions or encounter any problems with methadone, please feel free to post a note so that we can help.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Ank

Post by Rustsmith »

Wednesday, January 20

Welcome to

Ank, who can’t sleep and is looking for ways and advice to help with that. Ank's ankles and lower leg are kicking. An iron injection after 2 or 3 months with low dose of gabapentin worked for a few months, but no longer.

Since the iron injection appears to have "worn off", have you been back to your doctor to get your ferritin levels checked? Iron injections don't last forever and from reports, the first one seems to wear off a bit faster. So, you may need another. If you post a note with more details, our members who have been through several cycles of iron supplements may be able to help you out.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Juststumped

Post by Rustsmith »

Thursday, January 21

Welcome to

Juststumped, who has been suffering for past few years. She would like to see how others are coping, sharing information etc. She has tried different meds and is currently taking Horizant. It helps on and off but lately less often.

Horizant and gabapentin do not work for everyone. Have you had your ferritin checked? There are other meds that can help. We would happy to explain more if you post a note and tell us what things other than Horizant that you have tried.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Karendee

Post by Rustsmith »

Saturday, January 23

Welcome to

Karendee, who is getting a horrible nights' sleep and is keeping her husband awake as well. She is exhausted and it recently happened while she was put out for a medical procedure and had to be held down. She is here for help and learning while she starts her medicine.

Nothing gets your doctor's attention like seeing your RLS 'in action" under conditions where (s)he can't blame it on you or your imagination. We would be happy to provide whatever information you need. Just post a note with the questions that you have and let us know about your new meds as well.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Jamie

Post by Rustsmith »

Sunday, January 24

Welcome to

Jamie, who has been dealing with RLS for 10+ years. Jamie is a physical therapist and has tried many treatments without success.

Your failure is similar to that of most of our members. The only things that we find that work consistently are medications and temporary relief from soaking in hot of cold water. If you have any questions, please feel free to post them in a note.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Sugar3plum

Post by Rustsmith »

Sunday, January 24

Welcome to

Sugar3plum, who has had RLS for years and has been taking pramipexole I mg 2 times a day. Normally it controls her RLS but lately it has gotten worse. She walked the floor all night Saturday night and has been taking extra vitamins because of Covid.

At 2mg/day of pramipexole, you are well above the maximum dose recommended for RLS and are quite possibly in augmentation since it hasn't been helping of late. You can take a look through our forum on Augmentation to learn more, but you probably need to get off of it very soon. Unfortunately, many, if not most, doctors are not familiar with augmentation since it is specific to RLS. If your doctor is one of these, then you probably need to find a doctor who is familiar with treating RLS and augmentation. This could require some research on your part and maybe even some travel. Pramipexole withdrawal is also difficult unless your doctor is willing to prescribe an opioid to cover the withdrawal symptoms, which include zero sleep for about a week and the worst RLS that you have ever experienced (including Saturday night). If you have any questions, please feel free to post a note with them. Most of us have been where you are right now and are happy to share our wisdom (in hindsight).
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to strinan1

Post by Rustsmith »

Monday, January 25

Welcome to

strinan1, who cannot sleep at night with out aid of medication and can only take every three days per doctor's order. Therefor strinan1 is up all night most nights and ugly during the day and is depressed and irritable and angry.

None of the RLS meds has the restriction that your doctor has placed on you. If you are comfortable with posting a note to tell us what the med that your doctor has prescribed, we can provide our comments and suggestions, which could include finding a new doctor.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Danielleneede

Post by Rustsmith »

Monday, January 25

Welcome to

Danielleneede, who only gets sleep 2 hours a night. She has had RLS for over 15 years and the last 5 have been the worst.

Since insomnia is a major part of RLS, it is something that we all experience. If you will post a note telling us about what you are doing to control your symptoms, we can probably suggest ways to improve that so that you can get more sleep.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Beebs165

Post by Rustsmith »

Tuesday, January 26

Welcome to

Beebs165, who has had RLS for at least 30 years. Due to medication augmentation she is now very much tied to her meds. This causes some anxiety in situations where she might not be able to get up and walk and she always has to have her meds with her. She is not as carefree as she used to be.

That is a situation that we can all relate to. If you have any questions, please feel free to post a note and we will try to answer them.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to LSM

Post by Rustsmith »

Tuesday, January 26

Welcome to

LSM, who has been passed around from neurologist to neurologist and still can’t find any answers.

We should be able to provide answers to most of your questions and we can provide suggestions on how to find a doctor who understands RLS. If you will post a note with your questions, that will get the discussion started.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Praj

Post by Rustsmith »

Wednesday, January 27

Welcome to

Praj, who can't sleep properly and it is affecting Praj's life and work. It is pushing Praj into depression.

Sleep issues are what forced most of us into seeking medical help. If you have any questions or would like some suggestions to improve control of your insomnia, just post a note.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Jskreitz

Post by Rustsmith »

Thursday, January 28

Welcome to

Jskreitz, who can't sleep, which affects her entire life.

We would love to be able to help you get more sleep and answer any questions that you have. All you need to do is post a note with whatever questions you have or a description of how you are currently managing your RLS.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Libertatorj

Post by Rustsmith »

Thursday, January 28

Welcome to

Liberatorj, who has been afflicted with RLS since Liberatorj's ninth year, but only truly started learning about the problem within the last ten years. Liberatorj's occupation required standing for ten to 12 hours per day with very little movement which possibly aggravated the condition come bedtime. Liberatorj is finding that doctors, even though they try, are not well-acquainted with the problem, so we must be our own advocates.

We have also found that doctor's are not familiar with RLS, but many do not try or will not admit their limitations. If you would like us to answer any questions you have or to suggest ways to improve the control of your RLS, just post a note and we will do our best to help you out.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to Shar

Post by Rustsmith »

Thursday, January 28

Welcome to

Shar, who suffers from RLS and meds don’t always help.

There are several reasons why meds don't always work. If you would like us to try to explain more, please post a note telling us what you are taking so that we can try to help you improve things.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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