Restless Legs Syndrome (RLS) Discussion Board

I am still confused as to why, no matter where I go concerning info on WED/RLS, the first thing I see is "RESTLESS LEGS SYNDROME (RLS) is a common and treatable physical disorder estimated to affect 5% to 10% of adults in some countries..
This sounds like more Doctor "mumbo jumbo" to me. If this is treatable then why are so many of us suffering?? I think we need to change the opening to "sometimes" treatable(depending on how bad your symptoms are) sort of thing, because it might give those who were just diagnosed a wrong impression of this disease.

I agree, most of the time it seems to give the impression, it's no big deal. Just take a pill, all good.
Good idea on trying to get those lines changed.

It's really hard for many of us here....but we are the minority. According to the statistics, only a fraction of people with WED need treatment - most do not. I just can't remember the percent - 20? 30? Not sure, but it's not 50%. And, of those that need treatment, only 1-3% have difficulties that we have.

Because many of us here are the hard to treat, we get a bit of a skewed view. It helps me to have my mom, sister, and brother around. They do find without any help.

I agree with Ann - for most people it *is* treatable. However, it is invalidating to see it written somewhere that what I have is easily treatable, when it obviously is not. I would like to see more written on how some cases need more intervention -- more of a "spectrum" view than the homogenous one that is out there right now.

I think it's 10% of the population has it, 2% need treatment, and X% are refractory like us and need treatment.

It's an interesting question whether to say it's treatable. I think they should consider that 75% (was it?) of people taking dopamine drugs augment eventually (recent long-term study, only one to go for years; forget the details); and 25% (this number I remember) have to stop the drug because of the augmentation. Does that qualify the disease to be called treatable, or partially treatable? treatable for many? treatable for most with varied outcomes, most patients having a completely recovered life and X % with only 60% functionality restored, for which they are slatheringly grateful because its so much better than the 20% they lived with for 5 years while trying to find meds that worked?

that brings up another point, is it enough to say it's treatable without mentioning the grief and years of life lost in finding that treatment?

But I do understand why it's called treatable; as my first doc said, "I thought I could just prescribe this pill and everything would be fine". Boy did I ever fool him. I was the only patient he felt bad about when he moved away; he left me unsolved.

hahaha.

Yeah, okay. Perhaps the majority of people who have it don't need treatment or their treatment goes well. But for who have a hard time controlling this, it minimizes our treatment. The doctors think they should be able to throw a pill at you and your fine. The ones who can't control their symptoms get no relief as they think this is an acceptable disease to live with without more meds. I'm trying to find a doctor who will proscribe low level opiates for evening relief and get stymied every time, and I know because they think this is nothing, and the blank stare in their eyes is starting to bring me to a point where I'll just get my sinemet until next sleep study and buy my meds on the street as usual. I actually don't like opiates as they impair my mental function and I don't like the groggy feeling, but nothing else "kills" the crawling for me. I managed to score 5 lorazepam for free and they lasted me 12 days. Not the best relief but I'll take anything I can get. Just tired of being stared at like I'm some circus freak who needs to shut up and go home.

In the beginning, some people didn't know what I meant when I said Restless Legs, so pretty soon I just told people I had "bad legs." They seemed to understand that fine. Of course, now I have so many things wrong with me, I just tell folks, "I'm all wrecked up." I mean, people who have bad backs and say they do, we know sort of what that means, it's so common, I have a bad back, but no one knows what it FEELS like until you have it. RLS is like that in spades, plus a lot of people don't have a good understanding of what it is to begin with. I think it is unfortunate that literature is out there that says it's treatable. It would be better to say treatments are available to help control symptoms. I don't know.

much better

I think it is impossible to describe the indescribable

None of the drugs used to treat it were developed for it, none of them treat it fully in most people (the dopamine drugs for intermittent or light daily WED being an exception), none of them treat it to a significant degree in everyone. It's so hit-or-miss!

The doctor that I had had for several years stated that I didn't have RLS because the Requip didn't work on me. He is also the one that increased my mirapex way too high. I was having augmentation and didn't know it then. Of course that doctor didn't know what to do with me and I never went back to see him. At that time my WED was getting severe and I started seeing the sleep MD that I still talk to. I have moved to another state from him and we discuss my treatments by phone.