Restless Legs Syndrome (RLS) Discussion Board

1 December 2018

Welcome today to:

Chen03 - who is a teenage boy with RLS since i was young and hopes to be able to seek some help here for my RLS.

Welcome Chen03, we don't have many members as young as yourself and hope that with our years of experience we will be able to help.
Read as much as possible in the Just Joined Forum - Managing your RLS.
Also, if you start a thread telling us how you have been coping with your symptoms. Have you been officially diagnosed, do you take any medications.

Monday, December 3

Welcome to

Airegrrrl, who believes she has had sporadic RLS for about two years, but it has spiked in the last several months. She is looking for information, a doctor, and strategies. She is particularly interested in lifestyle changes that she can make to help keep control. This is all very new to her and she is sure that hearing the suggestions and thoughts of others in the same situation will be very helpful.

Take a look around and please post a note telling us a bit more about your symptoms so that we can offer specific suggestions to all of your questions.

Monday, December 3

Welcome to

COLORLS299, who after attending the symposium in September, realized how important it is to connect with fellow WED/RLS patients. The support, information and camaraderie is so important and helpful! WED/RLS is such a lonely and silent disease. COLORLS wants to become more involved in the community to be informed and feels like doing the best possible to deal with this disease.

Hope you got to meet some of the discussion board moderators in San Diego. We look forward to hearing from you. As a first post, you could start off by telling us a bit about your symptoms and what you are currently doing to manage them.

4 December 2018

Welcome today to:

Wigglykel - who is 56 and has had RLS since about 10. In the last 7-8 years, it’s moved to the arms on occasion! Wigglykel has taken everything from lorazepam to requip and am currently looking into CBD oils.

Please post and tell us how you have managed so far and what medications you are currently using. We are all understanding of your situation.

Tuesday, December 4

Welcome to

Restless, who has had 30 years of Restkess Legs. Restless has tried all kinds of treatment and needs more advice.

Please post a note telling us a bit about your symptoms and what you have tried so that we can offer you some suggestions.

Tuesday, December 4

Welcome to

Moathome, who says that RLS is a curse. Moathome is on a cocktail of meds which allows a couple hours of sleep.

Please post a note telling us about your symptoms as well as what your current cocktail of meds includes. Perhaps some of our experience would help improve your situation.

Tuesday, December 4

Welcome to

NeeCee48, whose sleep disturbance affects the ability to be involved in the work NeeCee enjoys in retirement years. NeeCee doesn't have a lot of time left and doesn't wish to spend years left looking for peaceful sleep or doctors who can help treat this disease in a state where most do not believe the disease exists. So, NeeCee wants a place where to discuss the disease and learn from others.

Please post a note telling us a bit about your RLS and what you are doing to manage it so that we can offer our suggestions and comments to help you enjoy life more.

Wednesday, December 5

Welcome to

amazingminds, who has had RLS since 2002. It started about a year after chemotherapy for breast cancer, although she is not sure that is related. She have been taking Mirapex for at least 12 of the last 16 years. That has started to become less effective as she is waking up a lot at night. She exercises daily and takes Pilates and works out with a trainer. It is really beginning to be a problem and effect her quality of life.

It sounds like there is a good chance that you are experiencing augmentation. To learn more about it, take a look at some of the posts in our Augmentation forum. And please post a note telling us about your dose of Mirapex so that we can offer you some more comments.

Wednesday, December 5

Welcome to

Tad4k, who has had RLS for years. Tad's sleep study showed an average of 100 leg movements an hour and that extreme sleep deprivation. Tad has continued to get symptoms earlier in the day and have needed more medication to help control.

You sound like you may be experiencing augmentation. Please take a look through our Augmentation forum and also please post a note telling us about your current medication so that we can offer you some specific comments and suggestions.

Wednesday, December 5

Welcome to

Diakur, who has had RLS for years and it is worsening. Pramipexole is no longer affective due to augmentation. Her symptoms are coming in the afternoon and severely disrupting her sleep.

Your description sounds a great deal like you are experiencing augmentation. Take a look at our forum on that topic and also please post a note telling us about your dose of pramipexole so that we can offer you some specific suggestions on how to proceed from here.

Saturday, December 8

Welcome to

sleeplessEileen, whose RLS is slowly killing her. She is consumed with fear of a future filled with torture that she believes will one day kill her. She is so sad to lose her life, her children, friends and family because of this illness. The saddest part to her is that no one will listen. Her previous doctor had her on hydrocodone and mirapex and she was great. She developed augmentation to the mirapex and at the same time, her doctor passed away. Her life has been a living hell for the past 2 months. Doctors refuse to continue the hydrocodone, she has tried gabapentin with no relief and horrible side effects. She feels so hopeless and ashamed to put her family through watching her like this every day. Her youngest son is an US Army soldier and she is humiliated for him to see his mother as such a weak failure.

Please post a note telling us where you live. There are doctors who will be willing to provide you with an opioid to treat your RLS, especially since you have been through augmentation. It may take a little bit of work to find one, but we can either suggest a specific doctor who is somewhat close to you or else a procedure for finding one to provide you with the medication that you need. There is hope because most of us have been where you are right now.

Monday, December 10

Welcome to

zeefy, who suffers from RLS and needs to talk about it and get ideas for how to lessen the sensations. zeefy can't sleep at night and that is creating misery.

Please post a note telling us about your current treatment and symptoms so that we can offer some suggestions for improving control of your RLS.

Monday, December 10

Welcome to

Beverdp, who has had RLS for years and it seems to be getting worse. It is very unpleasant every evening.

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

Tuesday, December 11

Welcome to

torch81, who works in the military and can't stand without moving. His wife has a hard time sleeping next to him when he kicks a lot so it has put a lot of stress in the home as well work.

There are medications that can help relieve some of the symptoms that you are experiencing. Take a look at some of the info in the files at the top of the just joined section. And please post a note telling us if you have tried any meds so far so that we can offer some things to suggest to your doctors.

Tuesday, December 11

Welcome to

Vincent, who dreads going to bed at night. What drug cocktail to try tonight to try to prevent the inevitable?

We all understand that dread. Please post a note telling us about the meds and the combination that you are using. Perhaps we can offer some suggestions for reducing that feeling of dread by improving the your chances of falling asleep fairly easily.