JUNE 2021 - New Members

[Rustsmith]

Tuesday, June 1

Welcome to

restlessinsewickley, who can't remember the last time she had a "good night's sleep. Today she lives in dread of when her next episode is going to monopolize her day and absolutely panic should she discover she left home without medication. She often find herself just sitting at her desk staring off into space, unable to focus on the task at hand, which more often than not eventually leads to just falling asleep at her desk.

We would be happy to help you find a way to get more sleep. If you are willing to tell us what you are currently taking (and the dose), we may be able to offer ways to have your doctor adjust your treatment so that you can get more sleep and thus do more at work.

[Rustsmith]

Wednesday, June 2

Welcome to

meyer405, whose RLS has been my number one issue for several years. It started with night symptoms that were controlled completely by walking. However, now meyer takes medication under the supervision of a neurologist after having difficulty with management by the family doctor.

We are happy that you found us but sorry that you needed to. If there are any questions that you have, just post a note and we will try to answer them for you.

[Rustsmith]

Thursday, June 3

Welcome to

mfh5, who has been diagnosed with sleep apnea around 3 months back, recently got to know about RLS and PLMS as well. It seems like he has these as well as per his sleep study report. He is trying to learn and treat himself.

There are quite a few ways to correctly treat RLS, but to be done properly, all of them require the support of a doctor. If you don't find what you are looking for in our files, feel free to post a note and ask us.

[Polar Bear]

Thursday 3rd June 2021

Welcome to:

Mwella-Rod74 - who has been dealing with RLS for over 10 years and would like to know any more information about this disease. IMwella-Rod74 knows there is no cure at this time but would like to see how other people are coping with RLS.

Mwella, you will find a great deal of information on this site especially starting with the Just Joined Forum. If you have any questions please join a thread or start your own thread. Ask anything you want. It will help us to help you if you tell us how you have been coping so far, if you take any medications, doses etc. Our aim is to help you.

[Rustsmith]

Thursday, June 3

Welcome to

DAB, who has been battling RLS for about 5 yrs and his sleep dysfunction is getting worse. He is often awake 2-4 hrs/night. He joined RLS Foundation to get up to speed on the work being done and studies underway to treat and/or manage symptoms.

We can help you with all of that. If you don't find what you are looking for, just post a note and ask.

[Rustsmith]

Friday, June 4

Welcome to

PattiSue59, whose RLS seems to dominate her day. She seems to always be thinking about when RLS is going to kick in, what her days activities will be in relation to RLS and when to take her next dose of ropinerole. The medicine has caused augmentation to the point that she experiences RLS 18-20 hours out of the day.

You need to get off of ropinerole ASAP. If your doctor isn't prepared to help you do that, then you need to find a different doctor. If you have any questions about what all this will involve, just post a note so that we can help you through this.

[Rustsmith]

Saturday, June 5

Welcome to

Kratzdavid2, who is a 64YO male. At 18, his doctor told him it was all in his head. He has never had a decent night sleep. It's 4 AM and here he is registering for the board. He has tried everything known with little sleep. He has lost his FAA medical because of Mirapex. Anything new out there. Ideas anybody. Looking for a discussion forum as the worms are crawling in his legs. People just don't understand.

There are a number of options other than Mirapex, but they won't help with your FAA physical. We would be happy to try to help. If you haven't found what you were looking for, post a note so that we can start a discussion with you.

[Rustsmith]

Monday, June 7

Welcome to

Shawn, who has had RLS forever and who has difficulties sleeping. Shawn wants to know other individual's insights.

We would be happy to answer your questions and provide whatever insights would help. All that you need to do is post a note to give us an idea of where to start.

[Rustsmith]

Tuesday, June 8

Welcome to

Bobbyadam, who has RLS and is looking for relief. He wonders if nicotine gum or patches help anyone else.

Nicotine would be a new idea if it helps you. RLS is a neurological disease and normally only responds to things like iron therapy, dopamine agonists, some anti-seizure meds and opioids. But if it helps you, then great. Although some may see this, you are more likely to get a response if you post a note asking your question so that others are more likely to see it.

[Rustsmith]

Thursday, June 10

Welcome to

Indirani, who has been struggling with RLS for nearly 5 years. She started with a low dose of Ropinirole before it caused augmentation. She was advised to switch to Pramipexole. She has been taking 0.5 mg of Pramipexole for about a year.

You are currently at the max dose of pramipexole, so the switch from ropinerole to pramipexole is just delaying when you are going to have to get off of dopamine agonists. Take a look through out forum on augmentation to see what that involves and the feel free to post a note with any questions that you have.

[Rustsmith]

Thursday, June 10

Welcome to

joeshertick, whose RLS keeps him from sleeping. His quality of life is terrible and he never knows when he is going to be under attack by this illness.

If you would like some suggestions for how to get better control of your RLS, all that you need to do is post a note to give us an idea of what you are currently doing to manage it and asking whatever questions that you have.

[Rustsmith]

Friday, June 11

Welcome to

Cashioneast, who can’t sleep because of RLS. He has been using marijuana, but now it’s not working.

Have you consulted a doctor about treating your RLS? Did the doctor do blood work to check your ferritin level? It could be that your iron stores (as measured by ferritin and not the same thing as being anemic) are low and that all you need it to increase your iron levels.

[Rustsmith]

Saturday, June 12

Welcome to

Villagesgolfer, who has a difficult time falling asleep and worries that it may progress into PD.

Although it is possible to have both RLS and PD, the experts have said that all of those cases were ones where the individual had PD and then developed RLS. They then said that they had never seen a case where someone with RLS later developed PD. So it appears that RLS in some ways protects us from getting PD.

[Rustsmith]

Saturday, June 12

Welcome to

dtmpadilla, who is unable to sleep and has to stand for the symptoms to stop but has passed out standing from being so tired only to wake and have the RLS return.

We can all relate to those symptoms. Are you doing anything to manage your RLS other than sleeping while standing? We should be able to offer some suggestions to discuss with your doctor, but we need an idea of where to start. So if you would like suggestions, just post a note to tell us how to help.

[Rustsmith]

Saturday, June 12

Welcome to

baiba2, who just started getting this terrible problem maybe because of quitting Abilify, which is a partial dopamine agonist. It is literally driving baiba2 crazy-It has led to drinking hard liquor, taking leftover hydrocodone and clonazepam, and trying to get the doctor's help in solving this problem.

FIrst off, please stop the alcohol in combination with hydrocodone and clonazepam. The combination can be fatal and the alcohol is just making the RLS and your sleep problem worse. If you need to talk, please post a note and we can suggest better ways to get your doctor's attention.