Restless Legs Syndrome (RLS) Discussion Board

Thursday, January 2

Welcome to

cnsdahl, who is ooking for up to date info on RLS

You can find the most recent recommendations at this site: https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Or feel free to post a message and we will try to answer your question.

Thursday, January 2

Welcome to

AudreyBH, whose RLS has made a huge impact on her life. She is taking daily opioids because nothing else worked. She augmented badly from Requip. She is always tired.

Most of the users of this site are taking opioids because they augmented on requip or mirapex. If you have any questions, we would be happy to help.

Thursday, January 2

Welcome to

Sherry56, whose RLS has been a horrible condition in her life for over 20 years. It keeps her awake at night sometimes the whole night. When it’s bad nothing helps. It’s miserable.

If you would like suggestions on how to improve the quality of your control over RLS, just post a message and give us an idea of what you are currently doing to manage it so that we will know where to start.

Thursday, January 2

Welcome to

cmbilly, whose 10 year old son has severe RLS and she isare looking to connect with other families

Although we do not have many families that have children with RLS, there are a few. Your best bet would probably be to post a message in the forum on Special Populations and ask there.

And if you have any questions about managing RLS and the accepted treatments, just post a message in the appropriate forum and we can try to help or at least point you in the direction of someone who can.

Sunday, January 5

Welcome to

whrbug, who has had RLS for over 30 years and used 0.125 pramapexiole nearly the entire time, only recently needing more. whrbug is a patient at the Mayo Clinic, now suffering from augmentation and struggling from RLS nightly, as well as having difficulties with alternative meds.

We may be able to provide a bit of guidance about alternative treatments if you would be willing to tell us a bit more about the alternative meds that have been causing difficulties. There are loads of alternatives, each with their own side effects. Also, many doctors don't like to prescribe some of the alternatives that are most effective because they are opioids.

If you would like our comments, just post a message on the board.

Sunday, January 5

Welcome to

SABKAT, who wants to learn about RLS and the best way to deal with it.

Take a look at the document that the link in my signature points to for most of that information. You are also welcome to post a message with any questions that you have.

Sunday, January 5

Welcome to

TSmith, who is experiencing symptoms of RLS and sleep loss.

I am glad that you found us but sorry that you had to. If you have any questions about RLS or its treatment, just post a message and we will do what we can to help.

Sunday, January 5

Welcome to

SleeplessinDarwin, who has had RLS for over 25 years and it affects everything she does, it's always in the back of her mind. While most people look forward to going to bed, she dreads it. She can't sleep with anyone because she is worried she will keep them awake.

Everyone on this discussion board knows exactly how you feel. If you have any questions or would like some suggestions on how to improve control of your symptoms, just post a message and we will share our experience with you.

Tuesday, January 7

Welcome to

Labs8811, has had RLS since a child and now at 68 years old it is interfering with daily activities and sleep.

If you have any questions and/or need guidance just post a message so we can try to help.

Wednesday, January 8

Welcome to

Palmer Eldritch, who wants to join in order to understand his RLS treatment better.

We would be happy to answer any questions that you have. Just post a message and let us know what we can do to help.

Wednesday, January 8

Welcome to

Need to Sleep21, whose RLS is causing lack of sleep due to being unable to keep legs quiet

There are ways to treat your RLS so that your legs will calm down to allow sleep. If you would like guidance on how to accomplish this, just post a message that gives us an idea of what you are doing at present so that we will know where to start with our comments.

Thursday, January 9

Welcome to

Peter, who is unable to get good sleep during the night, which makes him sleep during the morning

Insomnia and poor sleep at night are a common issues with RLS. If you would like suggestions on how to better control your RLS (and improve your sleep), just post a message and give us an idea of what you are doing now so that we will know what to suggest.

Friday, January 10

Welcome to

RLS InfoSeeker, whose RLS has become progressively more severe over a period of 20 years or so. He is now in refractory RLS due to reaching augmentation of standard dopaminergic agents and alpha-2-delta ligands. He is searching urgently for solutions, as his RLS has made it almost impossible to function in all the ways that count.

Once you have "failed" iron therapy, the DAs and the alpha-2-delta meds, the only ones that are left are the opioids. The problem is that most doctors are not willing to prescribe them even though they almost always work and usually remain effective for the rest of your life. To learn that latest recommendations, read the Mayo document that the link in my signature points to or this latest publication by the American Academy of Sleep Medicine https://jcsm.aasm.org/doi/10.5664/jcsm.11390
You might also want to tread this publication on using opioids to treat RLS: https://www.mayoclinicproceedings.org/a ... X/fulltext
Or, if all else fails, you can always post a note on the board with a question or comment.

Sunday, January 12

Welcome to

AlBrsh, who has RLS, which has affected personal life and sleep. So AlBrsh wants to get more knowledge on this syndrome from experienced and professionals.

We would be happy to provide whatever information you are looking for. All that you need to do is post a message and ask your questions.

Sunday, January 12

Welcome to

ScubaSue, who is completely unable to sleep. The only thing that overrides her RLS is half of an Oxycodone that is left over from knee replacement surgery, and her supply will run out within a month.

You can find out about all the available treatments for RLS by reading the document that the link in my signature points to. If your doctor isn't familiar with treating RLS, take a copy to your appointment to share. I should also probably read this document and share it to: https://jcsm.aasm.org/doi/10.5664/jcsm.11390