March 2025 - New Members

[Rustsmith]

Monday, March 17

Welcome to

Cynthia Rae, who is miserable on long overnight flights. RLS affects her when she is tired. We enjoy traveling, but these flights are keeping her at home.

If your RLS is most controlled and overnight flights are your main problem, you might want to talk to you doctor about getting a few pills of Carbidopa/Levodopa to use just before the flight. This med is not recommended for daily use to treat RLS (it is for Parkinsons), but can be of great help when used for special occasions like long flights and concerts. It works quickly, so you take it as the plane departs and then it provides relief for most of the flight so that you can get some sleep while in the air. But do not use it regularly because if taking frequently it is the fastest route to augmentation.

[Rustsmith]

Wednesday, March 19

Welcome to

Harman, who is taking ropinirole but his doctor says he should move to gabapentin. He has bad symptoms at night, the medication helps a lot. He has symptoms during the day that might be caused by something else, no one knows. During the day I can handle them with walking or just moving around, but at night they get bad enough that he can't work at his desk.

The symptoms during the day are very likely due to augmentation on the ropinerole. Your doctor is correct that you should be on gabapentin instead of ropinerole. Unfortunately, tapering off of ropinerole will be very difficult if you are augmented because during the switch of meds, you will experience the most severe RLS ever unless your doctor will prescribe a few days of an opioid to cover the ropinerole withdrawal phase. But the chances of that happening are pretty slim.

If you have any questions, feel free to post a message and we will do our best to answer your questions.

[Rustsmith]

Wednesday, March 19

Welcome to

Jubeee, who would like to connect with others who have RLS.

This is the place to make that connection. Just post a message and tell us about your RLS and whether you have any questions or comments for us.

[Rustsmith]

Wednesday, March 19

Welcome to

Very Sleepy, who have suffered with RLS for 35 years. Sleep deprivation has caused Sleepy to have a reduced quality of life. With more information, Sleepy hopes to improve that.

We would be happy to provide whatever information you need. All that you need to do is post a message and tell us how we can help, that could be advice about changing your treatment plan or even finding a doctor who better understands RLS.

[Rustsmith]

Wednesday, March 19

Welcome to

Gail lyon, who has RLS and needs support and information. She is up and walking every night. So far all medications don’t help.

We may be able to help, but need a bit more information. If you will post a message that gives us an idea of the treatments that you have tried (and your ferritin number too), we may be able to offer some suggestions.

[Rustsmith]

Wednesday, March 19

Welcome to

Dottie, who is augmenting on pramipexole and is trying to withdraw. But despite a low dose opioid, she is struggling.

Some people need a bit higher dose opioid during their dopamine agonist withdrawal period and of course, their doctor is also reluctant to provide more than the bare minimum, which might not even be enough once finished with DA withdrawal. If you are comfortable provide a few more specifics by posting a message, we might be able to suggest some changes to discuss with your doctor.

[Rustsmith]

Thursday, March 20

Welcome to

dms7513, who has RLS and can't get to sleep easily at night.

If you will post a message that tells us a bit about what you are doing to manage your RLS, we may be able to suggest some things to help you get to sleep more easily.

[Rustsmith]

Thursday, March 20

Welcome to

Siamese, who has suffered for so many years and things seem to be overwhelming at this time. Thank you for any and all support.

We all understand how RLS can be overwhelming. When you need support or sympathy, just post a message and let us know how we can help.

[Rustsmith]

Thursday, March 20

Welcome to

Spierenburg, whose sleep deprivation is interfering with every day life. She is only getting 1 in 4 nights sleep.

If you would be willing to post a message to tell us what you are doing to manage your RLS, we can probably make some suggestions that will get you more sleep.

[Rustsmith]

Friday, March 21

Welcome to

Jessefwolff, who has had a lifetime of RLS and it is the worst it has ever been. So, Jesse needs ideas and support!

We would be happy to provide support, all that you need to do is post a message to start a conversation. As for ideas, read through the document that the link in my signature points to.

[Rustsmith]

Sunday, March 23

Welcome to

Penny, whose nighttime is miserable due to RLS. She has had it for years but it is only getting worse.

Two things can work to make RLS get worse with time, age and augmentation. If dopamine agonist augmentation isn't your issue, then you need to work with your doctor to modify your treatment so that you regain control of your symptoms. Doctors often don't realize how bad things can get at night, so maybe keeping a log of when symptoms start and the hours of sleep that you are or are not getting will drive the point home at your next appointment. Often, a doctor thinks, oh, you just need to try to get more sleep or to learn to relax when we all know that that just doesn't work.

Also, feel free to post a message on the board with any questions that you have so that we can try to offer specific suggestions for you to try.

[Rustsmith]

Tuesday, March 25

Welcome to

AnnieKate, who has had RLS for many years. It has gotten worse lately. She can’t function on so little sleep.

There are ways to treat RLS that work, but since most doctors are not familiar with this, it can be hard to get treatment. If you would like some suggestions to help educate your doctor, just post a message that tells us about your past and current treatments so that we will know where to start.

[Rustsmith]

Tuesday, March 25

Welcome to

MAXWATKINS, whose husband has witnessed her legs jerking at night. Her sleep is very interrupted thru out the night. Some nights she feels the connection, other times she doesn't.

What are you doing to manage your RLS? Do you know your ferritin number to know whether an iron supplement might help? If you post a message to tell us more, we may be able to help you.

[Rustsmith]

Tuesday, March 25

Welcome to

yerin, who is an RLS patient living in South Korea. There is no active RLS community in South Korea. yerin sometimes feel a leg pain that is like dying, but not often. It's so scary that it comes sometimes. yerin also can't sleep properly.

Are you taking anything to help with the leg pain? Some people have painful RLS but many others do not. Many of us take meds to treat our RLS that also prevents pain, so maybe that has something to do with it even though the RLS dose is much less than what is used for pain.

If you would like to discuss your situation, just post a message to start getting some comments or suggestions.

[Rustsmith]

Wednesday, March 26

Welcome to

Debwilson640, who is seeking more information about RLS as she and her mother share this trait. She would love to join an RLS Support Group in her area, Oregon City, OR.

You can learn a great deal by reading the Mayo Clinic document that the link in my signature points to. As for RLS Support Groups, you can find a list in the Nightwalkers magazine if you are a Foundation member or by calling the Foundation office. I looked and it appears that the nearest support group is in Washington