Restless Legs Syndrome (RLS) Discussion Board

Wednesday, November 13

Welecome to

Ulrike, who is new to the Foundation and has had RLS for 2 years, being up many times at night. On most nights Ulrike doesn't get enough sleep, but has avoided taking medications so far and is hoping to learn some natural strategies for getting through the night from this discussion board.

Your best bet for natural strategies is iron supplements, but this should be done under a doctor's supervision since too much iron can be harmful. You can also check out our forums on Non-prescription treatments and Physical Treatments to get an idea of other options. However, most of us end up resorting to various medications since insufficient sleep is not only bad for your long term health, but can also lead to a variety of accidents.

Thursday 14th November 2019

Welcome to:

Ted who has been diagnosed with RLS and wants to ask questions about meds

That's what we are here for. Ask all that you want and we will do our very best.

Thursday 14th November 2019

Welcome to

Betsyb who has had RLS for 6 years and augmented after last pregnancy. Struggling to find non medication treatments or medication safe to use during second pregnancy

Welcome, please take a look at our Special Populations forum, there is a part on pregnancy, Do not hesitate to ask questions.

Thursday, November 14

Welcome to

Jr85, who has had RLS since 9yo. No idea it was a thing til 33yo. It has progressively gotten for worse and is now unbearable - no sleep ever. Under care of GP and Neurologist. He has tried exercise at night, iron supplements, Counselling/CBT, heat pads, cold pads, CBD oil, ropinirole, pramiprexole, gabapentin, pregablin, diazepam, lorazepam, propranolol, OraMorph, Oxycodone, fentanyl 100ug transdermal patch. Not one of them helped. Some made it worse.

He is currently on clonazepam, which helps a little but GP refuses to keep prescribing. Neurologist is out of ideas and so as of yesterday kept me on clonazepam 2-4mg PRN and 800mg gabapentin then referred me to a movement disorder clinic.

He is now here for help and advice as at rock bottom and maybe 2 really bad night away from trying to score some zoplicone/Loprazolam/temazepam/nitraIoam because I’m at rock bottom and exhausted.

Your best bet at this point is the movement disorder neurologist. Some of those meds should have provided some symptom relief if it is RLS. And if it is, the meds that you listed may not provide much help since "normal" sleep aids are usually not very effective for the insomnia that comes with RLS.

So, if you could post a note to give us an idea of how long you have to wait for the new doctor as well as an idea of why some of the previous meds did not help, maybe we can offer some suggestions.

Friday, November 15

Welcome to

Pianomom3355, who would like to connect with other RLS sufferers and ask opinions on meds to take, what works for them. She has been on pramipexole for about 15 years now and believes it is affecting her heart. She would like to ask others about a switch in meds.

Please post a note with your question(s). Most of us are more than willing to share our experiences.

Saturday, November 16

Welcome to

vwells123, who only gets at most 6 hours sleep a night and so is very tired and cranky which affects their marriage.

Please post a note telling us what you are doing to manage your symptoms so that we can suggest some improvements that can improve your sleep, disposition and marriage.

Sunday, November 17

Welcome to

Nickdnhr, who has severe Restless Legs Syndrome.

Please post a note telling us what you are currently doing to manage your RLS and asking any questions that you have. We would love to be able to help you out.

Tuesday, November 19

Welcome to

Smurfee777, who has had RLS since she was little, and as a kid i was walking the floors at night, She would be so tired, hard to sit in school, now as a 54 years old, it has gotten worse, keeps her from living the right way she should be living.

Please post a note telling us what you are doing to manage your RLS so that we can suggest ways to change and therefore be able to live right.

Tuesday, November 19

Welcome to

rondabiro, who is suffering from RLS and needs more information.

Please post a note asking whatever questions that you have so that we can help provide whatever new info that you need.

Tuesday, November 19

Welcome to

ellenis, who had a mild form of RLS for many years and it was easily controlled by the breathing exercise she learned in a mindfulness mediation class. The condition became much worse a few months ago, though, and it's now basically driving her crazy not only when she is trying to fall asleep at night, but also doing anything - beginning in the early evening - that involves having her legs stretched out in front of her (for example reading or watching TV on a daybed.

Please post a note and tell us if your doctor has provided you with anything to help with your symptoms. There are a number of things that can be done to manage your level of RLS.

Tuesday, November 19

Welcome to

Bob1, whose RLS keeps him from going to sleep and disturbs his sleep after he does fall asleep. Throughout the day it bothers him as well.

Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions on getting more and better sleep.

Tuesday, November 19

Welcome to

Terry, whose RLS impacts life in every way possible... Sleep, recreation, relationships.

Please post a note letting us know what you are doing to manage your RLS and asking any questions that you have so that we can offer some suggestions for regaining control of your life.

Wednesday, November 20

Welcome to

JaHuegel, who I has had RLS for 50 years. Her experience with it has been like a roller coaster. She is joining to share her experiences and also see how other people with RLS cope and what has been effective for them. She is again having trouble getting to sleep even though she is taking Horizant 600mg and still takes Ropinerole 2 mg. She is so depressed when she can't sleep and needs help.

Please post a note with any questions that you have. 2mg of ropinerole is a lot, so you may be augmenting on it and Horizant cannot overcome DA augmentation. The current max recommended dose of ropinerole for RLS is 1mg. So, we may very well be able to offer some suggestions on how to proceed so that you can improve your sleep as well as the depression that sleep deprivation causes.

Thursday, November 21

Welcome to

amykhug, whose significant problem is that the dopamine agonists make her sick, and the medicines that do work -- such as the lovely Horizant -- she tends to become tolerate to quickly. She have dealt with major depressive disorder since she was a teenager, and at this point my RLS presents *by far* the worst danger to my mental health. Otherwise, she has a good life.

Are you taking an anti-depressant? These can make RLS worse. Please post note telling us what you are taking now for your RLS if you have become tolerant to Horizant. We should be able to offer some suggestions to discuss with your doctor that will improve your situation.

Friday, November 22

Welcome to

mbsieg, who has had RLS since childhood, but have always been able to manage it with good self care. However, at the age of 65, it is much worse. mbsieg plans on discussing medication for the RLS with mbsieg's physician today.

In addition to discussing meds, also ask to have your iron levels checked, especially ferritin since that is not part of a normal iron blood test. For some of us, increasing iron can help reduce our symptoms. And after you return for your appointment, please post a note telling us how things went and what you will be trying so that we can offer you some further suggestions.