OCTOBER 2019 - New Members

[Rustsmith]

Tuesday, October 22

Welcome to

Worrier, who needs lots of hand holding and information. She is just starting out here -- 68 yrs old, female, and retired. She is having sleep problems too.

Sleep problems are part of RLS, which is classified as a sleep disorder even though the name indicates a movement disorder. If you will post a note telling us a bit about how you are currently treating your RLS, we can then have an idea of what to suggest. Feel free to ask any questions as well.

[Rustsmith]

Tuesday, October 22

Welcome to

cadfaelrose, who has suffered from RLS for several years, and it can be sheer torment. Sleeping or trying to relax in the evenings, sometimes afternoons, is impossible.

Please post a note telling us what you do to manage your RLS and asking any questions that you have so that we can offer you our comments.

[Rustsmith]

Wednesday, October 23

Welcome to

artist1, who is on her feet during the day for her occupation. Sometimes her legs feel like toothaches. It has been very disconcerting.

Please post a note telling us a bit more about your symptoms and what you are doing to manage your RLS.

[Rustsmith]

Wednesday, October 23

Welcome to

Elletech, who is disabled by genetic RLS.

Please post a note telling us what you are doing to manage your RLS symptoms. We may be able to suggest some ways to reduce your level of disability.

[Rustsmith]

Saturday, October 23

Welcome to

Brian, who went for a sleep study a few years ago to see why he was so tired all the time. He was diagnosed with RLS andI was prescribed Ropinerole, and his RLS has only gotten worse and more frequent. He can't stand to ride in a vehicle for very long, can't be comfortable sitting or laying down. It affects his mood, friendships, everything. No one seems to understand. He decided to seek help and found this website in his attempts to do so.

Please post a note telling us the Ropinerole dose you are taking and how long you have been taking it. You sound a lot like you may be experiencing augmentation, which means that you will need to switch to another med and that can be difficult without a knowledgeable doctor.

[Rustsmith]

Monday, October 28

Welcome to

seamless, who has had to eliminate alcohol and caffeine use. He has had to remember to take his medication at inconvenient times. He has suffered from severe RLS and if he is on his feet for longer than usual has been unable to sleep.

Please post a note to tell us about your meds. We may be able to suggest some changes that could help.

[Rustsmith]

Tuesday, October 29

Welcome to

dchis77, who wants to get more input on what's working for people.

Please post a note telling us what you are using and asking any questions that you have.

[Rustsmith]

Tuesday, October 29

Welcome to

Metshelli, whose husband has RLS with SEVERE augmentation 24/7. He has been taking Requip for at least 18 years. They Never find doctors that REALLY know what to do with him. Taking opioids now... and still high doses of Requip through out the day. He is exhausted, has Suicidal thoughts - feels hopeless.

Many of us have been where he is now. Please post a note telling us what he is taking and the doses involved. It might also help to know where you are located so that maybe we can point you to a doctor who knows how to properly treat RLS. But the good thing is that he is on opioids. Normally that is a major hurdle to simply get a doctor to prescribe them.

[Rustsmith]

Tuesday, October 29

Welcome to

jeanettetruchsess, who wants to share her experiences with RLS, hear about others' experiences and not feel alone.

Please post a note telling us about your RLS experiences and asking any questions that you have. We would love to be able to share.

[badnights]

Your husband can get much better - unbelievably so - by stopping Requip. Have you read up on augmentation? He needs to understand as well - the Requip long ago stopped doing any good and has only made the problem worse since then. It should have been stopped by a knowledgeable doctor, but there aren't many who understand augmentation - it doesn't really happen with any other disease and the medication that's supposed to help it.

The Requip is causing most of his problems. When he stops it, the problems will improve. They will improve so much he will wish he stopped it years ago. BUT they will get worse first. He has to go thru that worsening, which happens when he stops the Requip. It may seem unbearable, but it is the ONLY way to get to the other side, where his symptoms will be so much better. The Requip has to be stopped, or itwill continue to make his symptoms worse, which will force him to use increasing amounts of opioids, which will have their own unhappy side effects.

I am not sure why a doctor let him take opioids without getting him to stop the Requip. Opioids excel at stopping symptoms, even the extra-bad symptoms that happen when you stop Requip. But he's been taking both - please start a Topic and tell us more. Did he ever increase his Requip dose since he started an opioid? What kind and dose of opioid? He should not need both. There is a wonderful world waiting for him, where he can have a good chunk of his life back, he can live again, but there is only one way to get there and that's by stopping the Requip.

It can be stopped with the help of the right opioid prescription, and if he can get IV iron too, that might help a lot too.

[Rustsmith]

Wednesday, October 30

Welcome to

jojocope, whose RLS impacts lack of sleep and quality of life...never knows when it will start, so pleasures like going to the movies or out to a restaurant are not always fun. Plane rides are torture.

Please post a note telling us what you are taking for your RLS, there are ways to improve your control so that you don't lose the joys of life.

[Rustsmith]

Wednesday, October 30

Welcome to

janiedigh, who has just been diagnosed with RLS. She has chronic migraines, which make her need to lie down in the daytime. She used to just collapse and fall asleep, but now she can hardly ever drift off which makes the migraine worse. She takes lots of insomnia meds at bedtime which makes it so she doesn't know if she is having trouble, but in the daytime, there's nothing she can do.

Please post a note telling us about the insomnia meds that you are taking and what you are doing to manage the RLS. We can probably offer some suggestions that you help you out.

[Rustsmith]

Thursday, October 31

Welcome to

Suehj, who has had RLS since she was a teen, possibly even when she was younger. Her father had it and all 3 of her sisters as well and now her daughter and granddaughter have it. It has gotten much worse over the years. She is currently taking Ropinerole and her dosage has increased from .5 mg to 7.5 mg/ day. She worries that eventually it won’t work anymore, as she does have some nights when it doesn’t work. She has tried other meds with no success.

The recommended max dose for ropinerole is 4mg and since it does not always help, it is a good bet that you are experiencing augmentation. Augmentation is a side effect that most doctors are not familiar with and do not know how to treat. If you will post a note, we can offer you some specific suggestions on how to proceed, either to find a doctor who understands RLS or to educate your current doctor.