Restless Legs Syndrome (RLS) Discussion Board

I hear every now and then - on this board, and on the RLSF facebook page - of people who have moderate or mild WED/RLS and are happily controlled 100% by medications. As Ann says, those of us who post here a lot are the ones with problems, so we're probably not representative of the patient group as...

mbsweeney, since ktatum01 removed his post, do you know the proportions of Beta-Alanine and Arginine you're using?

what a sad thing that you have to go through all this! But thank goodness for that doctor who is fighting for you. Kudos to him and others like him who are willing to spend the extra time to help get us our lives back, or part of our lives back. That whole iron infusion story is very hopeful, not th...

I've seen that before, but I can't remember where - whether here or somewhere else. For the second time, I refrained from forwarding it to my sister. She got RLS/WED during all three of her pregnancies. But I have to let her live without worrying about it.

Good luck with that, and may your buffalo run abundantly for a long long time

ahhhh
that feels good

I like your description of "feeling of the growing awareness of what will happen if I don't move". People must each experience it differently but in addition to that, none of us have any words to describe it, because the sensations are outside the range of normal human experience. I'm crib...

Poor majoraward. Poor me. Poor all of us. (I am not being sarcastic.)
I, too, just can't accept that I'm diminished.
I want to live my life. I want to work at what I love doing, and get paid, and be respected for how well I do it.
I can't do any of those things,
and
I just
can't
accept
it

A recent article in Nightwalkers (or maybe it will be in next issue, I got a preprint) is about drug holidays. The authors are part of the RLS research group at Johns Hopkins. In their experience, RLS patients who take drug holidays usually go back to a lower dose. Their opinion is that it's a good ...

What majoraward says is true, sleep doctors are often better versed in treating RLS than neurologists, even though it's a neurological disorder. The impt thing is not what type of specialist they are, but what type of experience they've had. And if they have experienced lots of RLS patients, they'll...

Ann, it's our typical story. Too sad, too true. But sort of a happy ending, if you want to call it that! Having a neuro who "gets it" for the last 9 years is happier than other endings I've heard of. I sent it to some people I know. In lieu of my own story And I have made 3 copies. Trying ...

that is great!!!!!! It's wonderful! I'm so glad you did that! It's fantastic! I hope it greats really wide reading in the medical community! Sorry, I keep exclaiming, but I feel emphatic about each statement . Too many of us have had terrible - even if unintentional - treatment by medical profession...

Wowsa is right! I went right there and scanned through the two issues. There was one paper on RLS, a review. It was disappointing. Someone did a relatively thorough literature search and dispassionately summarized the average disease. Did not mention severe cases. Called it "benign" at one...

I took trazadone for 2 days, and I swear it made my WED worse. But that was back when I was taking gabapentin and codeine, both at high dosage and the WED was still out of control. I suspect if I tried trazadone now, I would not have the same reaction. (I also tried Wellbutrin at that time and got w...

Anyway, I think if you can live with severe RLS/WED you can probably get through anything else that comes along.

amen