JUNE 2020 - New Members

[Rustsmith]

Monday, June 1

Welcome to

kathyjunk, whose RLS has ruined her sleep and long drives, airplane rides etc. for years. She is currently on the Neupro patch which along with ropinerol has allowed her to sleep again at nights.

Please feel free to post a note asking any questions that you have. We would love to be able to help you out.

[ViewsAskew]

A busy first of June -

dkenney has had RLS for over 20 years and wants to improve their sleep quality.

There aren't many new treatments, dkenney, but we do have the most up-to-date info and often discuss new research and how the physicians (and patients) are using existing ones to make the best of it. If you are comfortable, hop in and post a new topic with questions. Lots of posts to read, also.

[Rustsmith]

Monday, June 1

Welcome to

Ducahn, who has had severe RLS for 12 years. Cucahn's life revolves around surviving the 4 pm to 5 am hours without screaming so loudly it disturbs the neighbors. Ducahn is 70 and takes oxycodone, but it is getting worse and worse.

Almost all of us can relate, especially about disturbing the neighbors. Please feel free to post a note with any questions that you have or feel free to jump into one of our ongoing discussions.

[Rustsmith]

Monday, June 1

Welcome to

licklider, who needs to take medications and stretch to sleep.

Virtually everyone here is taking meds for their RLS and for most of us, the primary reason is to be able to get any sleep. If you are comfortable with sharing, please post a note telling us about your meds and asking any questions that you have. We may be able to offer some suggestions to make things better.

[Rustsmith]

Monday, June 1

Welcome to

mskenny, who RLS is causing trouble getting to sleep every night. mskenny hopes to learn more about the issues.

We would love to answer any questions that you have about RLS. If you post a note asking about whatever issues you want, we will try to point you in the right direction.

[Rustsmith]

Monday, June 1

Welcome to

Deen8305, who has suffered for over 20 yrs, has been through augmentation and drug failure. She currently have fair management with a low dose prescription and natural supplements, but a peaceful evening is rare. People deal with worse, but it is chronic and no fun.

Please feel free to post a note with any questions that you have or simply jump into any of our ongoing discussions.

[Rustsmith]

Monday, June 1

Welcome to

jennifer.b.anderson, who has been diagnosed with RLS and would like to gather information and share with others.

This is the right place for information about RLS and sharing with others with it. Feel free to post a note asking any questions that you have for simply jump into any of our ongoing discussions.

[ViewsAskew]

Another new member, first of June, 2020

mackmann is taking ropinerole and still is up a lot, so is looking for information and support.

Great info here, mackmann. Please, start a new topic and tell us more. Believe it or not, the ropinerole could be making things worse - it's called augmentation. Hope we can help.

[ViewsAskew]

1 June, 2020

And, we welcome NevadaCityBob, who's had RLS for over 40 years and as with many of us, it affects their ability to sleep at night.

Lots of information here, as well as many wonderful and supportive people. When ready/if you like, please start a new topic and tell us more.

[Rustsmith]

Monday, June 1

Welcome to

mackmann, who is up many nights because of RLS and needs 1.00 mg. of Ropinerol and multiple stretching and massaging of her legs to have any chance of sleeping. She is looking for information and support.

We will be more than happy to provide whatever information and support that you need. We can get started if you will just post a note with whatever questions that you have.

[Rustsmith]

Monday, June 1

Welcome to

pwags3869, whose RLS has made it almost impossible to sit and relax and sleep is disturbed nightly. pwags is always tired and suffers from brain mush.

We can all relate to the "brain mush" If you are comfortable with sharing and will post a note telling us about your meds, we may be able to offer some suggestions to get more sleep and to be able to think clearly the next day.

[Rustsmith]

Monday, June 1

Welcome to

murphy10, who suffers from RLS 24/7. She cannot sit/be still for more than an hour without medication. She awakens every night to take medication because of her symptoms, and has not slept through the night in years. She tells herself there are worse things, but sometimes she feels that if she had to remove part of her brain to live the rest of her life symptom-free, she just might consider it.

We all understand that sentiment. If you are willing to post a note telling us about your meds, we might be able to suggest some modifications that would improve your control.

[Rustsmith]

Tuesday, June 2

Welcome to

CRD, whose RLS changed his sleeping schedule, diet, and even brought on a period of depression some time ago!

We would love to have you post a note telling us about what you are doing to manage your RLS or you could even jump into some of our ongoing discussions, such as some of the ones on diet.

[Rustsmith]

Tuesday, June 2

Welcome to

pgwarren, who I has had RLS for 14 years. For most of that time, pgwarren spent a lot of time, and a lot of twitchy nights, trying to find treatments that work. Only medications have worked well enough to allow sleep. pgwarren got prescribed pramipexole at far too high dosages (found out too late), tried all the other DAs and augmented on all. pgwarren finally discovered methadone, which has worked very well (with some gabapentin, too). Now, pgwarren's RLS is under very good control, with few side effects.

That your RLS is under very good control is wonderful news and the combination that you found is one that many of us with severe RLS rely upon. We would love to hear from you, so please join in one of our discussions or start a new topic with whatever questions that you have.

[Rustsmith]

Tuesday, June 2

Welcome to

Pastor Dean, whose RLS has made him miserable, so much so, that his dear wife now sleeps in a different bed. He dreads riding in the car because when the sun hits his leg then the desire, the need to move is enough to drive a person insane. He is maxed out on Ropinerol and a month ago was put on the 2mg Neupro patch and finally the stuff seems to be gone. He just needs to get to the neurologist to up the dose. He has no RLS symptoms right now and is relieved, but even starting with the Ropinerol he now has the very unfortunate side effect of spending money on things that he doesn't need nor would normally want.

Pastor Dean, please see your doctor immediately. The side effect of spending money comes from any dopamine agonist and is cause for immediately changing to another med. Since you maxed out on ropinirole, you are also likely experiencing augmentation, which is another reason to completely get off of dopamine agonists.