Restless Legs Syndrome (RLS) Discussion Board

1st December 2020

Welcome today to:

SallyAnn - who has had RLS on and off for 50 years. Now it is mostly on. It adversely affects her life and well-being because she can not commit to any morning activities in case of a sleepless night. It becomes a vicious cycle of fear of sleep because of fear of RLS setting in.

SallyAnn I could have written your registration comment above, not committing to morning activities, etc etc. Everyone will understand how you are feeling. You will find a good deal of very relevant information here and please post to ask any questions. You can join a thread or start your own thread letting us know how you have been treating your symptoms.

Tuesday, December 1

Welcome to

slorabs, whose mother, both of her sisters and she all have RLS and she has had it as long as she can remember - at least 45 years. While it affects her life, it is severely affecting her 92-year-old mother's quality of life and sleep. She is looking for support for her mother, as well as for herself in the future because she takes after her mother in many ways.

We would be happy to provide whatever support that you need for your mother or yourself. All that you need to do is post a note and tell us what you need from us.

Tuesday, December 1

Welcome to

Verbraken9086!, who has had RLS most of Verbraken's lifetime of 67 yrs. It wasn’t been much of a problem to deal with until age 60. Verbraken was getting about 2 hours of sleep at a time on a good night. Sitting in a chair or driving are a triggers.

If you have any questions that we can help you with or would like suggestions on improving upon you current treatment plan, just post a note with your question(s) and we will do our best to help you out.

Tuesday, December 1

Welcome to

CranberryHill123, who has had severe RLS for many years and has been on opioids for years. RLS makes her life miserable.

A large portion of the members of this board have also been on opioids for years. If there are any questions you would like to ask or things that we can help with, just post a message and we will do our best to help.

Wednesday, December 2

Welcome to

Bpjontek, whose RLS has affected sleep for the last 15 yrs. added to that the daily stress and worrying about the 2 hrs or so of symptoms before the ropinarole kicks in.

If there are any questions that you would like to ask or if you need advice about your ropinerole and/or augmentation, just post a note and we will be glad to help.

Friday, December 4

Welcome to

dops2005, who has struggled with RLS for several years but recently it has caused an increase in her stress and anxiety, which in turn has caused an increase in her RLS symptoms. She is feeling hopeless and is afraid she'll never get a good nights sleep again.

There are plenty of options available to manage your RLS symptoms (and stress and anxiety). If you are willing to tell us what you are currently taking, we should be able to point you in the direction of improving your situation.

Friday, December 4

Welcome to

writermama1969, who has to take medicine twice a day, and she thinks she is at the top of her dosage as she takes one pill in the morning and one at night. If she skips a pill she will suffer that night, walking around the living room, half asleep but marching back and forth. Sometimes during the day at work, she get twitchy legs and has to get up and walk -- if there's ever a zombie apocalypse and she doesn't have her meds, she will be miserable (but she guesses she'll be miserable anyway in a zombie apocalypse).

If you are taking a dopamine agonist med, It sounds like you may be experiencing augmentation. Augmentation is a side effect specific to RLS that most doctors are not familiar with. If you would like, we can tell you more about your situation if you will post a note telling us about your meds and the dose.

Saturday, December 5

Welcome to

jammynz, whose RLS prevents sleep sometimes. Maybe due to salt levels??

We all have RLS different triggers. Salt might be one of your triggers, but not someone else's and vice versa. If you have any questions, please feel free to post a note and we will do our best to answer them.

Saturday, December 5

Welcome to

rducotey, who now has to take meds (Pramipexole 3 MG) every day in order to get a good nights sleep. The dose has increased over the years.

At 3mg/day of pramipexole, you are at SIX times the FDA recommended max dose for treating RLS and near the max dose for Parkinson's Disease. At this dose, it is obvious that 1) your doctor is not familiar with treating RLS and 2) you are seriously augmented. You need to find a doctor with expertise is treating RLS and also with treating patients that are severely augmented. One place to find such a doctor is at one of the RLS Foundation's Quality Care Centers. If that doesn't work for you, you can post a note giving us an idea of where you live so that we can try to point you toward a doctor that can help.

Monday, December 7

Welcome to

Thermocline, who has been an RLS sufferer for many years. On bad nights the symptoms are so severe that he has once or twice been hospitalized. His RLS, on very bad nights, affects his whole body and he has seizure like episodes.

Your description of very severe RLS sounds very familiar. If you are comfortable doing so, please post a note telling us about what you do to manage your "normal" symptoms. We might have some suggestions that would help.

Monday, December 7

Welcome to

Keith, who is interested in knowledge and support with RLS

We would be happy to help you out. All you need to do is post a note with any questions that you have or can tell us what we can do to support you.

Monday, December 7

Welcome to

Terryski, who has the disease and it is causing problems in life regarding sleep, quality of life, and mood. Terryski has been communicating on FB but was referred here to check out the board.

We are happy to have you with us. If you have questions that you would like to ask or need suggestions for different ways to treat your RLS, just post a note and we will do our best.

Tuesday, December 8

Welcome to

Louane, who has a rare inherited metabolic disease called Gaucher disease; she also has Peripheral Neuropathy, Parkinson's disease and RLS. While she considers herself lucky to have access to a number of specialists, no one seems to understand that what bothers her most is not being able to get to sleep at night because of the electrical shocks or aching in her legs. So she gets more medicine, which worries her alot, so when she came across the Foundation article regarding the dangers of dopamine agonists, she decided that she might be able to get some answers or at least educate herself about RLS.

We would be honored to be able to help answer any questions that you have. All of us have been on dopamine agonists at one time or another, so we fully understand the risks. If you will post a note with whatever questions you have, we will try to answer them.

Tuesday, December 8

Welcome to

lsinrod, who has RLS and wants to learn more. It affects lsinrod's sleep.

One of the unfortunate sides of the Restless Legs side of the RLS name is the fact that it does not address the sleep problems that it causes. We would be happy to help you learn more about living with RLS. If you will post a note with any questions that you have, we will try to answer all of them.

Wednesday 9th December 2020

Today we welcome:

Marzo - who has had RLS symptoms off and on for the past 35 years. Recently it has gotten worse and the resulting sleep deprivation is a problem that not surprisingly affects everything.

Marzo, please be assured that we know exactly how you feel. We are all sufferers and try to help each other. We suggest you start a thread, or join a relevant thread, and tell us about how you are trying to treat your rls. If we know what medications you are taking (if any) and what you have tried in order to gain relief, we will try to help.