SEPTEMBER 2021 - New Members

[Rustsmith]

Tuesday, September 7

Welcome to

Lee, whose family’s life seems to revolve around alarms set to take ropinerole and gabapentin. If Lee misses it, life is miserable.

Most of us can relate to our strict medication timetables. If you have any questions or would like some advice, just post a note.

[Rustsmith]

Tuesday, September 7

Welcome to

attuner, who has had RLS sporadically for an entire lifetime, but the last two years have been every night. It has affected attuner's sleep and consequently has had a negative impact on life. attuner has tried several treatments with little effect.

We can probably provide you with some suggestions that will help. All that you need to do is post a note telling us about some of the things that you have tried so that we will know where to start.

[Rustsmith]

Tuesday, September 7

Welcome to

BCStrings, who has had kidney issues all BCString's life and as a result has deal with RLS. For BCStrings, it is about quality of life. BCStrings feels tortured by RLS on a nightly basis to the point of feeling desperate and of fighting depression. It feels like there are no solutions. The medications have reached the point of augmentation and there are few other options.

There are a number of options for treating RLS after augmentation, but many doctors refuse to prescribe these meds. If you are willing to tell us what you are currently taking and whether you have received iron therapy, we should be able to suggest some things that would help.

[Rustsmith]

Tuesday, September 7

Welcome to

Vince, whose RLS is causing lack of sleep and anxiety. He is looking for some others with same issue, and how they deal with it.

You have found an entire community who are familiar with your situation. Feel free to post a note to ask any questions that you have.

[Polar Bear]

Wednesday 8th September 2021

Welcome today to:

Vickie bee - who was diagnosed 2 years ago during a sleep study. Takes Gabapentin which has helped at night. Occasionally has RLS during the day, about once a month.

I'm wondering if Gabapentin is the only medication you have tried and at what dosage. Please read as much as possible as education and knowledge is power. If you have any questions please do ask, either by starting your own thread or joining a relevant thread. We are here to do our best to help you.

[Rustsmith]

Wednesday, September 8

Welcome to

SteveSensei, who is a long time RLS sufferer with worsening symptoms.

If you have any questions or would like some advice for controlling your worsening symptoms, just post a note to let us know how we can help.

[Rustsmith]

Thursday, September 9

Welcome to

Glenn D, who is in his 60s and was diagnosed with RLS around 20 years ago (though he probably had it for much longer). He recently joined the RLS Foundation and looking forward to additional support.

We would be happy to provide whatever support that we can. Just post a note and tell us what we can do for you.

[Rustsmith]

Friday, September 10

Welcome to

karuna, whose RLS started out as a disturbing annoyance and has evolved into full-fledged torture, from the condition itself but also from the medications prescribed to treat it. karuna hasn’t found the right doctor and the side effects leave karuna dopey.

We may be able to offer some suggestions for meds that don't have the side effects and also on how to find the right doctor. If you will post a note telling us a bit more, that will give us an idea of where to start.

[Rustsmith]

Friday, September 10

Welcome to

ejennings50, who has had RLS all her life and it was an intermittent problem in the past, but has more recently become more intense and doesn't allow her to get a good nights sleep.

If you would like some suggestions that will help you get better sleep, just post a note to tell us what you are currently doing to manage your symptoms and we can take it from there.

[Rustsmith]

Monday, September 13

Welcome to

thehagsman, whose RLS progression is devastating. It is all around the lack of any quality sleep. Without the sleep, he feels all kinds of other issues have arisen, like weight loss, vision issues, mental health just to name a few.

If there is anything that we can do to help or any info that we can provide, just post a note and let us know.

[Rustsmith]

Tuesday, September 14

Welcome to

Chumphol, who wants to discuss, share and receive other opinions, experience and consultation for his mom's severe RLS complexity.

We would be happy to help you out with info about her RLS. All you need to do is post a note with any questions that you have.

[Rustsmith]

Wednesday, September 15

Welcome to

Jiggy2021, who has had severe trouble getting to sleep since 2017. She just pinpointed the problem in June 2021. Since taking roponirole, she can fall asleep and sleep 6 hours. And she knows about augmentation.

If you have any questions, feel free to post a note and we will try to answer them.

[Rustsmith]

Wednesday, September 15

Welcome to

Linnyoh, who is not able to sleep at night. her legs move every night from 8:00 pm on.

If you are willing to tell us a bit about what you are currently doing to manage your RLS, we should be able to provide some suggestions that will control your legs and let you get some sleep.

[Rustsmith]

Thursday, September 16

Welcome to

Leslie Harris, who would like to join to connect with others with RLS, find support, and give support. She has had RLS for several years and has only been on Pramipexole. Before that, she tried as many natural remedies as she could find. Last spring, she got off of an anti-depressant, and recently got off almost all sugar. These may have contributed to not having to have more than .25 mg of pramipexole for now. Over the years she was on prami, she had to go up every so often, so she worked to get that down by taking more a few nights then lowering it. She would like to find a local support group to meet in person. She is in Midlothian, Texas and would maybe co-lead a group.

I am sure that the Foundation would love to help you with a support group. You can call the office in Austin at 12-366-9109 and ask to speak to Clara.

[Polar Bear]

19 September 2021

Welcome today to:

Allkreatures - whose days are often lost, the meds are a mess and people do not believe he has this condition at all.

We want to try and help you. Please read as much as you can especially in the Just Jointed Forum and if you have any questions please ask and we will do our best to help. Have you been diagnosed by your doctor and are you taking any medications. If you give us some details it will give us a starting point.