FEBRUARY 2020 New Members

[Rustsmith]

Saturday, February 1

Welcome to

jjdaly4127, who needs to be able to trade info on helping alleviate the pain of RLS.

Please post a note with some of the info that you would like to trade and we can begin that process.

[Rustsmith]

Saturday, February 1

Welcome to

gracelands618, who wants to learn more about meditations. Graceland's doctor doesn’t seem to know much.

Unfortunately, ignorance of RLS is something that is common among doctors. Take a look at our forum on Physical Treatments and you may find something on meditation. If you past a note with any questions, our members will do what we can to answer them.

[Rustsmith]

Saturday, February 1

Welcome to

Edyb, who has had RLS for several years. It affects her hands and arms too. She takes Requip which only works moderately. She is lucky to get 4 hours of sleep.

Please post a note telling us what dose of Requip you are taking so that we can offer you some suggestions to improve your chances of getting more than 4 hrs sleep each night.

[Rustsmith]

Sunday, February 2

Welcome to

Thia M, who has suffered with RLS for 20 + years and is no 64. She is plagued by severe symptoms in her legs and my arms. She gets short unrestful sleep. She has been prescribed a plethora of medications, but nothing truly helps. The give her brain fog or interact negatively with other minimal prescribed meds. She does Tai Chi, Yoga, walks, exercises regularly, follows a strict diet; no salt, no sugar except in her 1/2 cup of morning coffee. Her neurologist is confused how many symptoms are actually RLS versus neuropathy. Both are genetic in her family. She is desperate for more insight since it becoming worse. She even bought a bed that vibrates...that seems to confuse her brain and works the best, but not the panacea.

Please post a note telling us a bit more about the meds that you tired and asking any questions that you have. And take a look through some of the research in our General Topics forum to get an idea of other things that are available. We would love to help you out with some suggestions, but need to have an idea of where to start.

[Rustsmith]

Monday, February 3

Welcome to

miki, whose RLS has caused her to restrict her evening activities, including movies, dining out and extended travel. She is looking for coping strategies.

We can provide you with loads of coping strategies. Take a look at our forums on Physical Treatments and Non-Prescription meds to get some ideas. And please post a note telling us what you are currently doing so that we can try to suggest others.

[Rustsmith]

Monday, February 3

Welcome to

pattywon, who inherited RLS from her father who has been battling it since he was in college. Her first memory of RLS related insomnia occurred when she was ~10 years old sleeping at a relative's. She is now 31 and the condition has intensified as she has aged.

Among things she has tried are Requip, Mirapex, Klonopin, Bromocriptine, brewer's' yeast, herbal topicals (lavender, etc), iron supplements and more. These medications had little to no effect in reducing her insomnia and some yielded undesirable side effects. She is now taking low dose opiates, which have proven effective.

Welcome to the board. Please post a note asking any questions that you have or simply jump into any of our existing discussions. We would love to hear more from you.

[Rustsmith]

Monday, February 3

Welcome to

RLSlou, whose RLS destroying her life. Doctors don’t believe how severe this is for her & just prescribe meds that don’t work. The only thing that even touches her symptoms & gives her any relief is methadone but there’s such a stigma attached to it because of the opioid crisis, hundreds of deaths every day, it’s almost impossible to get. She has never had a substance abuse problem, only takes it as prescribed, 1@10pm & another @2am but it seems to be getting progressively worse. She doesn’t know what she is going to do when she runs out. She will be seeing a new doctor Feb. 25 & is terrified if he won’t prescribe the only medication that gives relief. She would love to be in a study or clinical trial because she is ready to give up.

Please post a note telling us where you live so that we can possibly offer some suggestions about how to find a doctor who understands how to treat RLS and is willing to prescribe methadone since it is the one med that seems to work for just about everyone.

[Rustsmith]

Tuesday, Feburary 4

Welcome to

mack, who would like to swap RLS experiences with people who know about this illness. It isn't doing much good keeping to himself.

Please post a note with one of your experiences or asking any questions that you have.

[Rustsmith]

Tuesday, February 4

Welcome to

engyte0, whose RLS has been keeping engyte0 up at night.

Please post a note telling us what you are doing to manage your RLS so that we can offer suggestions on how to get more rest.

[ViewsAskew]

Welcome, Glenn_nw. Like many of us, this nasty condition keeps them from falling to sleep.

Let us know more if you like. Poke around, read posts - whatever helps. We're glad to have you.

[Rustsmith]

Wednesday, February 5

Welcome to

Kanew, who has been suffering from RLS for 23 years and it runs in the family.

Please post a note telling us what you do to manage your RLS and asking any questions that you have.

[Rustsmith]

Wednesday, February 5

Welcome to

scottbov, who has a severe case of RLS. It often extends to arms, wrists and hands. No sleep without medication. He takes 0.75 gm of mirapex at night to sleep. He is grateful that this works for him.

That is a higher dose of Mirapex than is recommended for use with RLS, but if it is working for now then don't mess with it. However, take a look through our info on Augmentation so that when the time comes that 0.75mg is no longer working, you will know how to advise your physician to proceed. Getting off of a high dose of Mirapex can be very difficult, so you do not want to go any higher than you already are.

[Rustsmith]

Wednesday, February 5

Welcome to

BillW, who has RLS and is interested in learning more. His RLS has forced him to retire early.

Please post a note telling us what you are doing to manage your RLS and asking any questions that you have. We would love to help you learn as much as you can about RLS.

[Polar Bear]

Thursday 6 February 2020

Welcome today to

tagalongbuddy - who has severe restless syndrome after a knee replacement ----they did a nerve block with replacement. I believe the nerve block caused this.
A chronic case that effects in multiple ways. The medicine helps to PREVENT the reaction most of the time. I never sleep more than 4 hours. I feel best early in the day and then worsen late in day. I have to be very consistent with the meds and take about the same time OR I pay for it later.

We all understand how you feel. Please make a post, start a thread under Just Joined, tell us about your medication and what has and has not worked.

[Rustsmith]

Saturday, February 8

Welcome to

Stdorn, whose RLS destroyed his life after losing his job of 18years and is now homeless.

Please post a note telling us about what you are doing to manage your RLS and asking any questions that you have so that we can offer some suggestions about how to put your life back together.