Restless Legs Syndrome (RLS) Discussion Board

Today, Monday 8 of April, Welcome to:

Mego5dzgrc, who has had RLS since a teen and now on daily medication to get through the night.

Those of us who have had it since childhood often are on meds much earlier than others. Very important to know as much as you can about iron and its role in RLS, as this could help you. Read a bit, start a new topic somewhere to tell us about your situation, or join in any existing conversations. Hopefully the knowledge here will help as much as having others who "get" it does.

Monday, April 8

Welcome to

Beachflyernow, who has had RLS for over 30 years. Her condition worsened in 2005 and she is now on medicine but it has caused a large gain in her weight. She would be very interested to learn of any effective treatment that could possibly take the place of her medical treatment.

Please post a note telling us the type and dose of your current medication. Some have a reputation of causing weight gain and other can lead to compulsive eating (which you wouldn't be aware of yourself). We may be able to offer some suggestions to discuss with your doctor if we know more.

Monday, April 8

Welcome to

whughes, whose RLS causes her sleepless nights, is frustrating, and she is not able to sit and relax.

Those are all issues that we can relate to. Please post a note telling us about what you are doing to manage your RLS and asking any questions that you have. We may be able to offer you some specific suggestions for improving things.

9 April 2019

Welcome today to:

sharonsgarden - who thinks Celiac is contributing to her restless legs. Grandmother had leg problems needed B-12 shots for pernicious anemia, aunt had celiac and restless legs also. Pramipraxole may be losing effectiveness, Concerned what to try next.

Here on the Discussion Board we will understand how you are feeling. Please do post on the Just Joined Forum. Start a thread and tell us of your RLS History, what meds you have used, what doses of meds you are now using. We have all suffered and hope to be able to suggest ways to help you.

Tuesday, April 9

Welcome to

berla, whose RLS has caused much misery -- chronic sleep deprivation has impacted cognition, memory and disposition. A chronic pain issue is a major RLS provocation and the two together is "one plus one equals three" situation.

Please post a note telling us about what you are doing to manage your RLS and the chronic pain so that we can offer some suggestions for reducing your misery and improving your sleep.

Friday, April 12

Welcome to

JazzyJoan, who needs information. She thinks she either has RLS or PLMS and is afraid to get on medicines. Hers went a whole year before it flared up last Tuesday (April 2nd) and It has been going on since. She just doesn't understand.

Please post a note so that we can provide you with advice. There is a lot that more you need to know about than can be provided in a short welcome, such as how a diagnosis is made and what you can do that doesn't involve medications.

Friday, April 12

Welcome to

Perrybet, for whom looking back, remembers having RLS beginning in the twenties. Perrybet will soon be 61. RLS has affected Perrybet's skepticism for years. Started meds a year ago and at first it was a Godsend. Now meds help little.

Please post a note telling us about those meds. You may be experiencing augmentation, a side effect that many doctors do not know about. We can provide with the information to discuss with your doctor to switch to something else that will help.

Tuesday, April 16

Welcome to

Kewpie, who takes medication for RLS three times/day and has done so for almost 10 years and also takes gabapentin at bedtime. Kewpie experienced augmentation after begining carbo/levo, which is why Kewpie takes it 3 times a day. Fortunately, no side effects from med as far as Kewpie can tell.

Carbodopa/Levodopa is a short acting dopamine that is know to result in augmentation almost immediately after starting it if it is taken regularly. Most experts recommend against using it and prefer the longer acting dopamine agonists like pramipexole, ropinirole and rotigatine. Therefore, it appears that your doctor is not fully aware of how to treat RLS, so you may want to consider asking for a referral to a specialist. If you have any questions about RLS or how to find a specialist, please post a note asking whatever questions that you have.

Wednesday, April 17

Welcome to

kotten59, who has RLS and is now on methadone. Her husband joined the Foundation and so she is here to compare what others are experiencing.

Please post a note telling us about your experiences so that we can provide your comments so that you can see what has been happening to us.

Thursday, April 18

Welcome to

Kym, who has suffered severe RLS most Kym's life and is currently on 3 prescription meds. Kym is looking for ways to get off of them.

If you find a way, please let us know . Many of us have severe to very severe RLS and are also on multiple medications.

Please post a note telling us about the medications and your doses. Although it may not be possible to get off of them all, there may be ways to reduce the dose(s) or maybe eliminate one of them.

Friday, April 19

Welcome to

Mozonious, who doesn’t sleep much and can’t sit and relax except during the day, so she is miserable.

Please post a note telling us what you are doing to manage your symptoms. We can probably offer some suggestions to improve your sleep and relaxation.

Saturday, April 20

Welcome to

brossman, who has had severe augmentation and impulse control disorder on pramipexole and is having difficulty weaning off of it onto a new medication.

Please post a note telling about the dose of pramipexole that you are currently on as well as the new medication. Most of us have been through augmentation, so we should be able to offer some helpful suggestions for this transition.

21st April 2019

Welcome today to:

Neelam gupta who has RLS and can’t sleep at night.

Please do post and tell us how you have coped with your symptoms in the past, and details of any medications you are taking both from your doctor or over the counter. We are all sufferers here on the Board and we will do our best to help you.

Sunday, April 21

Welcome to

Monnie, who needs advice because RLS is getting worse and is therefore exhausted through lack of sleep.

Please post a note telling us what you are currently doing to manage your symptoms (including the dose) so that we can offer you some specific suggestions to get more sleep.

Monday, April 22

Welcome to

woodyw, who because of the involuntary movement of his legs and whole body, has insomnia, getting maybe 2-3 hrs. sleep a night. He takes a dopamine medication plus gabapentin which doesn't calm things down enough to fall asleep, so he is a night walker and exhausted during the day.

Please post a note telling us about the dose of each med that you take and how long you have been taking them so that we can offer some suggestions to find more sleep.