JULY 2022 - New Members

[Rustsmith]

Friday, July 1

Welcome to

nschall1, who for years,off and on, dealt with RLS. Miserable nights,walking around,etc.,and having to teach Middle School kids in the morning.

We hope that you have resolved your RLS and have a way to successfully manage the symptoms now. Please feel free to post a note asking any questions, including a request for advice about medications if that is still an issue.

[Rustsmith]

Friday, July 1

Welcome to

Dbant4, who has RLS and would like to gather as much information regarding this as possible.

We would be happy to provide whatever information you need. You will find a huge amount of info in our form on General Topics, where the first post is a compilation of research publications. There is also the book "Clinical Management of Restless Legs Syndrome", 2nd Ed, by Lee, Buchfuhrer, Allen and Hening. which is available from Amazon for about $35US. And if you have specific question(s), just post a note and we will do what we can.

[Rustsmith]

Saturday, July 3

Welcome to

Inpain, who can't sleep, leg pains are severe. Too many unknowns about meds. Inpain feels like a research rat. Needs help with meds, can't keep trying dangerous drugs and their side reactions.

We would be happy to help you sort out the types of meds that work (and those that don't and/or make RLS worse). All you need to do is post a note that gives us an idea of what you have tried, so that we can know where to start.

[Polar Bear]

Tuesday 5th July 2022

Welcome today to:

jml1799 who has restless and needs help.

We are very glad that you have found us. Seeking help is the is the best step you can take. In order to help you we need some information. Please make a post in the Just Joined Forum, you can start your own thread or join an relevant thread. It's probably best to start your own thread. Do tell us about your history in managing your symptoms, what medications you have tried and if they did or did not help. Once you get a thread started we can ask relevant questions and between us will do our best to find suitable treatment and relief.

[Rustsmith]

Friday, July 8

Welcome to

onboard, who has had RLS for25+ years and is certain that what onboard is experiencing now is augmentation. Onboard is desperate to find a doctor and a treatment that will give at least a little relief.

We can definitely provide advice about steps to find a doctor that can treat augmentation, but it will require some legwork on your part an possibly some travel. Your best bet is to contact one of the Foundation Quality Care Centers, if one is within reasonable travel distance. (but be forewarned that wait times for new patient appointments can be long). If that doesn't work, your best bet at this point will be to post a note that gives us an idea of where you live so that we can provide a list of suggestions about how to search for a doctor who is knowledgeable in the treatment of augmented RLS patients.

[Rustsmith]

Friday, July 8

Welcome to

akmomma, who feels hopeless and is trying to understand RLS and what she can do so that she can live a normal life. She has worked with a neurologist to get her ferritin levels up, but I am still having symptoms. She lives in Fairbanks, AK so quality care is limited.

Unfortunately, about 35% of us do not benefit from increased ferritin levels. Since you have limited access to quality care, hopefully you have a "friendly" physician who is willing to learn and accept guidance that you provide. If so, try sharing a copy of this document (after you have read it yourself and marked a few important sections so that the doctor doesn't have to try to read it all during your appointment). https://www.mayoclinicproceedings.org/a ... 0/fulltext

There are other documents in the first entry of our General Interest forum, but that one is a great place to start and is also one of the most recent ones.

[Rustsmith]

Saturday, July 9

Welcome to

PTaylor643, who wants to know what other sufferers have found that helps!

If you look through our files, especially the forum on Prescription Medications, you will find quite a few helpful comments. I would also suggest taking a look at the document in the MayoClinic link in the message just above this. That is the latest info about treatments and was prepared by the leading RLS experts around the US.

[Rustsmith]

Sunday, July 10

Welcome to

Guddu2022, whose RLS Severity has increased over the last 3 months. Guddu is unable to sleep properly and has tried several exercises and home remedies that only work for some time.

Unfortunately, RLS severity often increases with age and proper treatment requires the cooperation of a physician, who can do such things as check iron (especially ferritin) levels and prescribe an "entry level" medication like gabapentin. If you have any questions, feel free to post a message and we will do what we can for you.

[Polar Bear]

Monday 11th July 2022

Welcome today to:

Mama.swift who finds RLS is trying to control her nights. She tends to dread afternoons, evenings and nights. Sleep is so poor.

Mama, we would like you to give us some information as to how you are coping with your rls symptoms. Indeed it is usually a sleep issue that drives folk to seek help. Have you seen your doctor and are you taking any medication, either from your doctor or over the counter and has anything worked, or not worked. Please make a post giving us some details about medications/dosages and anything else that worked (or not) for you. We can take it from there. You can start your own thread or alternatively join an existing thread that is relevant.

[Rustsmith]

Wednesday, July 13

Welcome to

Leep, for whom getting to sleep is difficult. At times, Leep wants to take a nap, but then gets RLS in the middle of the day. When that happens, it affects Leep for the rest of the day. Having your legs thrash around is tiring. For a reason unknown to Leep, when having an RLS for an extended period, Leep feels the need to eat, Leep is not really hungry, but just has a need to eat. With prescription and over-the-counter drugs, Leep eventually gets to sleep.

We may be able to offer some suggestions that will help with your ability to fall, and stay, asleep. All that you need to do is to post a note that gives us an idea of the prescription and OTC meds so that we know where to start with our suggestions.

[Polar Bear]

Friday 15th July 2022

Welcom today to:

AL-Sevcik who has extreme difficulty sleeping at night.

To be able to help you we need to know more about how you have been treating your rls and what, if anything, has been successful or unsuccessful regarding the control of your symptoms. Please do make a post and if you provide us with the information we will do our best to help you.

[Rustsmith]

Monday, July 18

Welcome to

eborgoyn, who is unable to sit in a theater, a car, an airplane, or often lay in bed with getting RLS. She recently found that iron supplements help her symptoms. She also had her iron levels tested but was not found to be deficient. She has taken Ropinerole for a few years on an "as needed basis" only. She would appreciate talking with and sharing information with others who suffer with similar symptoms.

First off, did your doctor check your ferritin level when they tested your iron? If so, do you know the number? "Normal" for others is anything over 20, but we need to be over 100. If iron supplements are helping, that suggests that you are still low. As for taking ropinerole on an "as needed" basis, one of the important things about RLS meds is that you need to take them BEFORE symptoms start. This means that most of us take them daily.

As for any information that you would like to share or any questions that you have, just post a note to start a discussion. We would love to hear more from you.

[Rustsmith]

Tuesday, July 19

Welcome to

bell34748, whose RLS has changed life in a way no one should have to go through. Bell is scared to even travel very far in fear of losing meds and not getting any sleep at all.

If you are using one of the major chain pharmacies and so long as you are not taking an opioid, you can usually get an emergency few pills if you lose them while traveling. If you have any questions about your treatment or about RLS in general, feel free to post a note so that we can provide our comments or answers.

[Polar Bear]

21 July 2022

Welcome to

Dudds whose RLS is causing sleepless nights and Mirapex is causing impulse control issues. Horrible symptoms are destroying Dodds' life.

Please do post on the Just Joined Forum giving us details of your medications(including previous) and we will be glad to try to help. It sound like you will need to come off the Mirapex when changed is known for causing impulse control issues.

[Rustsmith]

Friday, July 22

Welcome to

Bjohannes66, who has had RLS since 2016 and it’s gone from bedtime to during the day. It’s getting really bad and hard to get through day since It happens multiple times in day.

Are you taking a medication that could be making your RLS worse (pramipexole, ropinerole, an anti-depressant, an anti-histamine)? If so, we can provide some suggestions that will help regain control of your RLS. If not, we can also offer comments about the proper steps that you and your doctor should take to treat your RLS. To get started, just post a note telling us a bit more.