SEPTEMBER 2020 - New Members

[Rustsmith]

Sunday, September 13

Welcome to

dreamweaver#, who has presented with manageable RLS sporadically for over 20 years. What dreamweaver is experiencing now is debilitating. If not for working from home dreamweaver would be on disability as the many symptoms are 24/7. The only time of any relief is when dreamweaver is able to successfully fall asleep.

There is a good chance that what you are experiencing is augmentation. We would love to be able to help you out, but need a bit more info (such as what meds are have been taking and the dose). If you will post a note with that info and any questions that you have, we should be able to provide you with some suggestions on how to get your RLS back under control.

[Rustsmith]

Wednesday, September 16

Welcome to

Newtwig, who is constantly living on the edge of exhaustion. Night sleep is erratic. Newtwig was diagnosed with mod-severe RLS per sleep study.

If you have any questions, please feel free to post a note with them and we will do our best to answer them.

[Rustsmith]

Wednesday, September 16

Welcome to

dwell, whose RLS has affected falling asleep and going back to sleep, whether at bedtime, during the night, or in the AM. It has caused drowsy periods during the day but then dwell can't take a nap.

If you would be willing to post a note telling us what you are doing to manage your RLS, we should be able to provide you with some suggestions to help you get some more sleep.

[Rustsmith]

Thursday, September 17

Welcome to

Samtime, who finds it so wearing having painful RLS not only at night but also when trying to I sit down to read etc in the daytime.

If you would be willing to tell us what you are doing to manage your RLS, we may be able to offer you some suggestions for improving the control of your symptoms.

[Rustsmith]

Thursday, September 17

Welcome to

Huskerin66, whose RLS causes sleep deprivation, it keeps her boyfriend awake and is therefore causing frustration.

What are you currently doing to treat your RLS. We may be able to offer you some suggestions for improvement.

[Rustsmith]

Thursday, September 17

Welcome to

Rika, who has been told that she has RLS, and wish to join an amazing support group and discussion forum. She has type 2 diabetes and kidney disease, and also would share her knowledge and experiences with that.

You probably already know that your RLS is probably associated with your kidney disease. If you are willing to post a note providing us with more information about your RLS and kidney issues, we may be able to provide you with more info about maintaining control of your RLS symptoms.

[Polar Bear]

18th September 2020

Today we welcome

Ria - who is an RLS sufferer and has been for 20 years. Ria wants to learn from other sufferers what they are doing and what is helping them and share experiences.

You will find a great deal of information and I suggest you start with the Just Joined Forum. When you wish please join a relevant thread or start your own thread telling us about your RLS, your medications and what has worked/not worked for you. Feel free to ask any questions, we are here to try and help.

[Rustsmith]

Saturday, September 19

Welcome to

cap, who was diagnosed with RLS about 15 years ago and it has been an ongoing struggle to live a normal life, Cap is currently fighting the effects daily and recently became a member of the RLS Foundation and learned of this discussion board which cap hopes may be of some benefit.

cap, we look forward to hearing from you. If you have any questions, please ask.

[Rustsmith]

Saturday, September 19

Welcome to

mrsbillie2, who has been suffering with RLS for 40+ years and is always seeking new ways to deal with this disease.

Most of us are also seeking new ways to manage our RLS. You might want to take a look at the Research topic at the top of our General Topics forum to get an idea of the latest RLS research results.

[Rustsmith]

Saturday, September 19

Welcome to

Phrunk, who has had RLS syndrome for 17 years. More precisely it is PLMD and it is a severe form that has to be treated with opioids. He was just in a neurological clinic where he couldn't be helped. He is looking for solutions and is relatively desperate right now.

If you are willing to tell us a bit about the meds that you tried before landing on opioids (like most of us), then we may be able to offer you some suggestions. For example, most of us who have severe or very severe RLS use a combination of meds rather than the single med treatment approach used by many doctors.

[Rustsmith]

Saturday, September 29

Welcome to

niepowiem, whose RLS has been with him since childhood, his bad brother buddy so to speak who is wild and reckless but needs to be take care of. It affects life every day and night.

We would be happy to help you whip your bad brother into shape. If you post a note with any questions that you have, we can try to answer them.

[Rustsmith]

Saturday, September 29

Welcome to

Brick974, who is an 83 year old member of the Foundation. He experiences severe RLS daily episodes, (Sifrol/Lyrica) however, he is asking for information about the recognition and treatment that might be provided to jail inmates, who suffer from severe RLS. I'm just seeking a few leads to further his inquiry.

Diagnosis of RLS should be based upon the International RLS Study Group's diagnostic criteria, which you can find at http://irlssg.org/diagnostic-criteria. Unfortunately, most doctors (including neurologists) are not familiar with this and will hopefully listen when shown how it should be done. The IRLSSG also provides consensus guidelines on the treatment of RLS, which starts with iron supplements rather than medications. If you would like more info, just ask.

[badnights]

@Brick974
The best way to get information here is to start a Topic in one of the Forums - maybe in the General RLS forum if you want to discuss recognition and treatment.
Hope to hear from you!

[Rustsmith]

Sunday, September 20

Welcome to

jtopie, who has had RLS for many years with it getting progressively worse.

We would be happy to provide you with some suggestions to backtrack the progression a bit if you would be comfortable with telling us a bit about what you are currently doing to manage your RLS.

[Rustsmith]

Monday, September 21

Welcome to

Emmadigger, who has had RLS for 16 years and is looking to talk to others about medication transition issues.

We would be happy to chat with you about transitioning between meds. All that you need to do is post a note with the question(s) that you have or simply jump into an appropriate existing discussion thread.