Restless Legs Syndrome (RLS) Discussion Board

Monday, February 17

Welcome to

Lionel Ludorf, who has been taking pramipexole and pregabalin for a few years, but is now having bad augmentation. So, Lionel needs advice on the next step.

If you are augmenting on pramipexole, you need to get off of that med as soon as possible. You can learn about augmentation either from our augmentation forum or by reading the document that the Mayo Clinic link in my signature points to. Or, you can post a message that gives us a bit more information so that we can try to help you out.

Monday, February 17

Welcome to

Tomaslm, who has had RLS for over 30 years. Tomaslm has tried several remedies and is currently on medication twice a day but would like to reduce or eliminate medication if possible.

Most of us would be thrilled to be able to get off of our meds but that just doesn't work for most of us. If you would like to know more, simply post a message that tells us a bit about what you are currently taking so that we can have an idea of where you currently stand.

Tuesday, February 18

Welcome to

bratbomb, whose RLS has taken over her life. She is constantly looking for things to try to relieve the pain. She would just like to feel like a normal person.

There are treatments that help relive most of the symptoms. Either read through the Mayo document that the link in my signature points to or post a message to tell us what you are doing and have tried so that we can try to help you out.

Tuesday, February 18

Welcome to

Jewel, whose RLS keeps her in fight fright freeze mode and prevents her from relaxing her body so that her parasympathetic nervous systems has a halfway decent chance to recover.

If you need suggestions on how to manage your symptoms so that you can relax, just post a message and give us an idea of what you are currently doing for treatment.

Tuesday, February 18

Welcome to

HYPATIA, who can't sleep. Living with RLS is chronic torture

We would be happy to suggest ways to be able to sleep and reduce the torture. All that you need to do is post a message that tells us a bit about what you have tried to do to manage your RLS.

Tuesday, February 18

Welcome to

RestlessLouie, whose RLS adversely affects his ability to relax in the evening, get to bed at night, fall asleep when he is exhausted and quality of sleep.

There are ways to manage all of those situations. If you don't find the answers you are looking for in our discussions, just post a message to tell us what you have tried to do so that we know what to suggest.

Thursday, February 20

Welcome to

Tym, who has RLS in the evening and sometimes in his arms, with a lower tolerance for forgotten or late medication. He is experiencing daytime drowsiness and it often interferes with watching TV at night. If he forgets to take his medication, he is usually in for a bad several hours when he has to walk back & forth downstairs until the symptoms abate. He has lived in fear of the pramipexole becoming less effective & has only recently become aware of the augmentation phenomenon.

If you have been taking pramipexole for an extended time, I hope that you are also aware that the FDA's max recommended dose for treating RLS is 0.5mg (many doctors are not). If you have any questions that we can answer, just post a message and we will do what we can.

Saturday, February 22

Welcome to

inga4world, who has RLS that causes bad sleep with waking up many times per night to change the positions.

Are your doing anything to manage your symptoms other than shifting at night? Has your doctor checked your ferritin level? There are things that can be done to help. If you will post a message and tell us a bit more, we can advise you of the best ways to proceed toward better sleep.

Saturday, February 22

Welcome to

Bonniejean25, who has had RLS for 25 years and has tried many meds, Dr's, and foods. She is always in search of an answer. She was diagnosed as severe due to how its affecting her day and night. Life is a struggle.

If it is affecting you during the day, you might be in augmentation, which is a clue to how your RLS should be treated. If you would like suggestions, then all you need to do is post a message that tells us a bit of your medication history. Or, you can read through the document that the link in my signature points at to learn the latest recommendations from the experts.

Sunday, February 23

Welcome to

Moe_Berg, who goes to bed exhausted and wakes up 3-4 times per night. He wakes up in the morning exhausted. His legs are dancing like there is no tomorrow. Certain foods help to calm them down, but he hasn't found any medications or nutraceuticals that work yet. Needless to say, he needs to take naps now during the day, which is a problem for work.

In addition to scanning through our files, here are a couple of documents that you should read to learn more
https://www.mayoclinicproceedings.org/a ... 0/fulltext
https://jcsm.aasm.org/doi/10.5664/jcsm.11390
https://www.mayoclinicproceedings.org/a ... X/fulltext

Sunday, February 23

Welcome to

Fedalet, who has been suffering with RLS since childhood and it is increasingly making life miserable. Fedalet has come to the point with nothing works and just has to bear the pain. It is also causing suicidal thoughts.

There are always additional treatments to try, especially when you become so desperate that suicide seems like the only way out. Take a look at the document that the link in my signature points to. It includes all the recommendations of the RLS experts. There is also a new device that is sort of like a TENS unit with the tradename TOMAC. You might want to look into it as well.

And you are always welcome to post a message and ask us for specific suggestions.

Monday, February 24

Welcome to

Mae@700, who suffers from RLS and doesn’t know how to manage or treat it

You can start by reading the document that the link in my signature points to. It is a recent update used to educate doctors on the various ways to manage RLS but is very understandable. You can also post a message on the board asking any questions that you have.

Tuesday, February 25

Welcome to

Kathleen, who is looking for help and resources for this very debilitating disease.

We would be happy to provide what you are looking for. All that you need to do is post a message telling us a bit about what you need.

Tuesday, February 25

Welcome to

Juniperjumpinglegs, who is struggling with RLS and PLMD physically, but so much more emotionally. It has started earlier and earlier in the day and she feels like she is losing her mind.

If it is getting more severe and starting earlier in the day AND if you are taking a dopamine agonist, you are probably augmenting. Read through some of the posts in our Augmentation forum and talk to your doctor about switching to a non-dopamine type treatment. And you can always feel free to post a message with any questions that you have.

Wednesday, February 26

Welcome to

Griffey, who dosn't travel long distances in a car, for fear that RLS would act up due to not being able to get up and walk around, or even kick legs around. Griffey wanders the house in the middle of the night instead of sleeping due to not being able to keep legs still in bed. Griffey is going through Ropinarole withdrawals right now, because for a while and it was fantastic, then Griffey had to take a higher milligrams for it to work, and finally it got to the point that Griffey's RLS was worse on the medicine than it was off. The last two weeks Griffey has had 2 to 3 hours of sleep a night because of going through withdrawals from the medicine.

Most of us have been through augmentation and dopamine withdrawal and yes, it is very difficult. If you have any questions or would simply like to vent your frustrations, just post a message and we will do everything that we can for you.