JULY 2021 - New Members

[Rustsmith]

Sunday, July 11

Welcome to

barry2, who is unable to fall asleep at night. It's causing a lot of sleep deprivation and anxiety.

Usually the first complaint that forces us to seek help are the issues with sleep and the emotional toll that sleep deprivation causes. If you have any questions that we can answer, just post a note and we will do our best to help.

[Rustsmith]

Monday, July 12

Welcome to

jlbucha, who has had it since childhood and is now a senior citizen. As jlbucha gets older, it gets worse. Recently jlbucha has experienced legs flying or kicking on their own.

If you would like some suggestions on how you might be able to improve the control of your RLS, post a note and give us an idea of what you are currently doing so that we will know where to start.

[Rustsmith]

Tuesday, July 13

Welcome to

Desperado, whose RLS is ruining her life. She can't sleep, has had RLS for over 20 years and has tried all the medications. None of them work any more. She needs some fresh ideas as her doctors don't know what to do any more.

We can definitely provide you with new ideas. All that you need to do is post a note that gives us an idea of what meds you have tried. We can start our recommendations once we know that.

[Rustsmith]

Tuesday, July 13

Welcome to

juliejay46, who has suffered from RLS for most of her life. She remembers being 16 and waking at a friends house and having to get up and "walk around" because she was moving around. All of her friends hating having to sleep with her when staying over cause she notoriously "kicked" at them all night. After the age of 35 it increasingly worsened to the point she could not longer manage the RLS without medication. That is when she began that journey. It unfortunately took many trials and error's to find a regimen that worked for her with side effects she could manage. She has primary RLS, and it is significantly high in her fathers side of the family, with her father being one of the "worst cases" most doctors have ever seen. She fears she is following in his footsteps and that is very scary for she is well aware of what her future looks like with this illness.

We would be happy to try to help you out with advice to try to tame the RLS beast. All that you need to do is post a note that gives us an idea of the meds that you have tried so that we will have an idea of what to suggest and what you have already ruled out.

[Rustsmith]

Thursday, July 15

Welcome to

Jodih, whose RLS has made living very difficult.

If there is anything we can do that might help or if you have questions, just post a note.

[Rustsmith]

Friday, July 16

Welcome to

YJ1, who suffers from severe RLS.

If there is anything that we can do to help by providing suggestions for improved management or answers to questions, feel free to ask.

[Rustsmith]

Saturday, July 17

Welcome to

bijoux923, whose RLS is killing her marriage. She and her husband cannot sleep in the same room. She is pretty sure she also has PLMS (where she just twitches all night long). Requip (1.0 mg) kinda helps but not really.

First off, most of those of us with RLS also have PLMS. Second, if you search this site for split king beds, you will find a compromise that many of us have adopted that allows us to share a bed with our spouse without having our movements bother their sleep.

Finally, since 1mg Requip isn't helping, did your doctor do blood work to determine your ferritin level? Treating low ferritin (not the same as anemia) with iron supplements or an iron IV helps many of us. Also, you should have tried to use either gabapentin or Lyrica before being prescribed Requip. The recommended process for treating RLS changed about 10 yrs ago and Requip and its cousins were moved to near last place in the order of trying new meds, but many doctors don't know this and still follow the decades old recommendations.

If you have questions or would like more detailed comments, just post a note and let us know what we can do to help.

[Rustsmith]

Saturday, July 17

Welcome to

Djecak, who need to learn more about RLS and to see if there is help as he is at the end! He has not been sleeping since March 2020 and pain is present 24/7! He is loosing everything in his life. His job is next in line due to no sleep and anxiety and depression!

We can probably offer you some suggestions for improving your life via improved control of your RLS. All that you need to do is post a note telling us what you are currently doing to manage your symptoms so that we will know where to start.

[Rustsmith]

Sunday, July 18

Welcome to

MLS, who has had RLS since the early 40s and it has gotten progressively worse with age. MLS is now 63 and has tried just about every home remedy and nothing has worked. (MLS even slept with bricks on the feet !) MLS finally went to a neurologist 2 years ago and is on roprinorole, which, as is typical, has had to be increased to continue working and now wears off by early morning.

It sounds like you feel that you are going through augmentation (your ropinerole requires higher and higher doses to keep helping). If there are any questions that you have about the process of getting off or ropinerole, just post a note and we can provide you with advice about what we had to do and the process that is least difficult.

[Rustsmith]

Sunday, July 19

Welcome to

kozygirl, who wants more information about successes and failures. She is on meds, but is at her wits end.

We would be happy to share whatever information that we have. If you have questions about your meds, just post a note with whatever questions that you have and we will be happy to try to answer them.

[Rustsmith]

Monday, July 19

Welcome to

Roxana, who is searching for a diagnosis for this strange condition affecting her legs, her fatigue and mood. She discovered RLS and wishes to find out more.

The diagnosis of RLS is done through a series of questions asked by your doctor. To see the questions, take a look at http://irlssg.org/diagnostic-criteria. If you have any questions, please feel free to ask.

[Rustsmith]

Tuesday, July 20

Welcome to

DonHall, who has suffered from RLS for about 20 years. It progressed from his legs to his shoulders about 10 years ago. He uses 2.0 mg of Mirapex every evening. The Mirapex is now not holding and by about 5am he is flaring again.

You are experiencing augmentation from the Mirapex. The FDA approved max dose for treating RLS is 0.5mg, one quarter of what you are taking. You need to find a neurologist who understands treating RLS to help you get off of the Mirapex. This is not a med that you can just stop taking, especially from the dose that you are currently on. The experience of getting off is going to be difficult, but can be done. Most of those of us here have been through the process of switching, so it can be done. If you have any questions after looking through our forum on Augmentation, please post them so that we can help support you through this journey.

[Rustsmith]

Friday, July 23

Welcome to

Anovicz, who has been suffering with RLS for as long as Anovicz can remember, probably since birth. 50 years later…. Anovicz is looking for a cure.

Sorry, but no cures - Yet. But there are treatments that last and that don't end up in augmentation. If you have any questions, just ask.

[Rustsmith]

Sunday, July 25

Welcome to

RIck421, who has had RLS since he was a young kid. He is now 56. It was only just a few years ago he learned about RLS. He never knew what was wrong for years. He has it so bad now that it’s even in his arms and chest so he barely get a couple hours of sleep most nights. So it’s getting tough to maintain.

Are you currently taking a dopamine agonist (Requip, Mirapex or Neupro)? Symptoms moving into the arms can be a sign of augmentation if you have been taking any of these meds for a while. But it can also happen as a natural progression of severe RLS if you are not currently on any of these meds. If you have any questions, especially about augmentation, just post a note and we will do our best to help you out.

[Rustsmith]

Monday, July 26

Welcome to

bks429, who wants to hear how others deal with RLS: physically and mentally.

Hopefully you have already found much of the information that you are looking for. If there are specific things that you would like to find out about, just ask.