How many people have RLS, really.

[rkatt]

I've read various estimates. Some say, 10 percent of Americans have RLS, others go down to '2 percent of the population', presumably of the world. All assure sufferers they are not alone – it's a common affliction. But is it? Why do so few doctors know anything about it? Surely because they haven't encountered it before. How many people do you know, casually, not from going to the AGM, who have it? I have heard of two only. The last time I counted there were about one thousand million people in the US and Europe. Even one percent of that would spell gold to big pharma. So why aren't they working on a drug to sell us? I'm puzzled.

[Hidden]

My husband’s answer to your question would be “well, if they did that then everyone (with RLS) would just buy that drug and not spend anymore money”.

I met a lady on the train the other day whose mother has severe RLS. I mentioned that I had just been to a conference on RLS, to which she replied “they had a conference on this and they still don’t know how to treat it? This disease is common enough that you would think they’d be farther along”. I didn’t know what to say except that things are slowly moving forward.

[Parminter]

The 10% refers, vaguely, to the number of people who have it, whether it is now and then, or once a week. You get down to 2% or less for people who have RLS at least three times per week, when they are called 'RLS Sufferers' and 1% or less for RLS which is daily and difficult to treat. Most of us here will be in the last two percentages.

[Hidden in reply to Parminter]

You’re kidding?! Wow!

[Hidden in reply to Parminter]

Yes, that's what I reckon, that it's pretty common to have it occasionally. I hear folk say they occasionally get it but it's no big deal. I read the descriptions of what constitutes 'severe' and to me even that sounds in the main occasional ie not every day and even if every day maybe only once a night which would seem bliss to me. My sister gets it in batches but not enough to bother her that much ( well she got the family migraine and I didn't so fairs fair I suppose! )

I don't know what the % is who have this God awful version of every night, several times and permanent exhaustion, but as we know even that is hard to describe to folk and I suspect that many have mentioned it occasionally and the response means they don't again for fear or appearing to make a fuss or sound truly crazy.

[Parminter in reply to Hidden]

I think it is probably 0.5% or less. When it creeps into the day - and into the arms.

[RLSgirl in reply to Parminter]

Wow! I'm a 1 percenter!

[Hidden in reply to RLSgirl]

Me too...other body parts are affected daily as well as symptoms during the day.

[Hidden]

I've spoken to numerous people who claim they have the same as I have, when they might experience restlessness on a long journey, so by their definition that's everyone!

It would be so hard to know as many don't understand what they have. I watch my father sit and constantly move his legs while watching TV yet when I ask him does he ever feel restless or have the urge to move he looks at me like I have 3 heads and says no.

I's say at some time or other in life it does effect a substantial proportion of people, (might even be higher than 10%) but it is neither glamorous nor profitable hence the lack of an effective treatment imho.

[FluteE in reply to Hidden]

My dad does the same thing and his drs just say it’s osteoarthritis!

[Jelbea]

As the others have said it would be hard to accurately estimate the number of sufferers. I am in the percentage of daily suffering for the past ten years with arms affected also.

I found that I stopped telling anyone of my trouble years ago as mostly I received a glassy look back with sometimes a laugh but never any understanding. This of course made me feel a bit of an outcast so it is lovely talking to you all who understand the misery this horrible thing brings. I suspect many people are like me and do not talk of their suffering.

I also think that non-sufferers cannot understand how bad one can feel with "restless legs" and the title I have always felt is not good and some people seem to think it amusing!!

[Bajatom]

John Hopkins researchers just published research showing RLS appears to be from a hyperactive cortex area controlling leg motor movement. They suggested 10% experience mild to moderate RLS from time to time, but only 1 in 500 or 1/5 of 1% has severe RLS almost daily. Paper suggests this finding will lead to new treatments.

[Hidden in reply to Bajatom]

what about those of us whose RLS has graduated beyond the legs and effects the torso and arms? Can't blame the leg cortex for that, can they?

[RLSgirl in reply to Hidden]

I was thinking the same thin....but I guess the idea of a hyperactive cortex could extend beyond the part that moves your legs to include arms too.

[johannasuar in reply to Bajatom]

I hope your info is correct, I have RLS DAILY, or should I say, NIGHTLY. If I don’t take my meds at the same exact time ( I take Tramadol, one 50 mg at 5:30 and the same dose st 11:30. If for any reason I miss the time then I end up with an attack of the damn RLS all over my body, arms, legs, neck, etc. It’s maddening

[Bajatom]

Here is the link:

sciencedaily.com/releases/2...

[Hidden]

Seems like any estimate of how many people have RLS would be a wild guess at best. All of you know how hard it is to explain to people just what the sensation is like, and think of all the people out there who try to explain it to a doctor who doesn't have a clue. I'd bet it's more than 10%, but there's no way to know. It runs like a freight train through my family.