Restless Legs Syndrome (RLS) Discussion Board

Thursday, January 23

Welcome to

cstephens.mhc, whose RLS has gotten steadily worse over the years and until recently was afraid of getting old. cstephens envisioned age 90, frail and standing in the evening. Not a pretty vision!

Please post a note telling us what you do to manage your RLS and asking any questions that you have. We would love to be able to suggest ways to improve that vision.

Friday, January 24

Welcome to

roger, who has been suffering from RLS for the past 25 years. He used to wake up and beat on his knees just to make it stop until he went to the doctor and found out about RLS. Even now the medicines don't always work. He feels as though at times he wants to remove my legs so he can rest. So, he wants to know how other people are coping with this.

Please post a note telling us what meds you are taking and asking any questions that you have. We would love to be able to help you out.

Friday, January 24

Welcome to

jrexford35, who has struggled with RLS for years and is currently in a very bad pattern of RLS. jrexford has tried lots of different remedies, none of which work in the long term.

Please post a note telling us about these remedies. There are long term solutions that we can tell you about once we know more.

Saturday, January 25

Welcome to

Brendan, who is a 51 year old male in USA. He has been taking a DA (Ropinerole) for almost 20 years. From 47 to 51 years old, experiencing (severe) DA augmentation. In early 2020, he tried to get off DA completely (with no substitute) but his symptoms went absolutely crazy and it almost killed him (zero hours sleep). He started Horizant last night (with Ropinerole) but it makes me very dizzy and somewhat nauseous so he is thinking of stopping. He is pretty miserable these days.

Horizant isn't strong enough to cover the withdrawal from ropinerole. Your two choices are to go with zero sleep for about 5 days as you withdraw or for your doctor to provide you with at least a short term course of a low dose opioid to cover the ropinerole withdrawal followed by stopping the opioid (which is easy by comparison). Unfortunately, most doctors are not familiar with treating patients with DA augmentation, so you may need to find a doctor who understands the proper treatment of RLS.

Sunday, January 26

Welcome to

Debl1, whose RLS has affected her life in numerous ways; lack of sleep, embarrassing episodes in front of strangers (friends and family don't mind and try to help), taken her confidence which she needed to recover from two botched replacement operations. She is often foggy and tired.

Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions to improve your life.

Sunday, January 26

Welcome to

debk67, who has suffered with RLS for 30 years and medication that used to work is no longer working. She is hoping to learn from other's experiences and contribute from her own.

Please post a note and tell us about the medication that is no longer working. We can probably offer some suggestions that can fix that issue for you.

Monday, January 27

Welcome to

SandyP, who is struggling with worsening RLS. She is looking for resources and support so she can manage her symptoms.

Please post a note telling us about what you are currently doing to manage your symptoms so that we can offer some suggestions for improvement.

Monday, January 27

Welcome to

Garypic, who has been treated for RLS as far back as the late 80s and has tried most if not all the Meds in the pipeline with different degrees of improvement. His concern is the lack of knowledge that most doctors hold. It appears that they treat RLS as a one size fits all.

At least you have found doctors who know what RLS is and have a tidbit of info on how to treat it. Many know nothing at all other than what a pharmaceutical saleman has told them. If you will post a note, we can provide you with some suggestions on how to find a knowledgeable doctor, although it could require some work and travel on your part.

Tuesday, January 28

Welcome to

Carol Edwards, who has had RLS for at least 10 years now. It stops her from getting to sleep and often continues thru the night. She can't do movies or anywhere she has to sit still. So, she needs answers.

Carol, if you will post a note telling us what you do to manage your RLS, we may be able to provide some of those answers that you seek.

Wednesday, January 29

Welcome to

Crazy legs, who RLS causes loss of sleep low energy level during the day.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have. We would love to be able to help you out.

Thursday, January 30

Welcome to

hwinborne, who has lived with WED since age 19, more than 40 years. With age, other nagging ailments arise and it becomes more difficult to manage. So, hwinborne is looking for information and support.

Please post a note telling us what you are doing to manage your WED and asking any questions that you have. We would love to be able to provide whatever information it is that you seek.

Thursday, January 30

Welcome to

golub, who has been suffering from RLS since at least 1999 and was finally diagnosed in 2016. golub has found the RLS organization extremely helpful and encouraging, but still has a few questions.

Please post a note with your questions and if we cannot answer them, we can try to find the answers for you.