Wired Science

RLS is a very serious disorder in that it causes sleeplessness. Without proper sleep a person cannot function and will eventually become completely disabled. (if not insane)

Personally, I'm glad the drug companies have taken an interest in this disorder. Fifteen years ago, when the RLS hit me hard, I couldn't find a doctor who knew what it was. I was treated for a dozen other disorders and nothing worked.

I once went eleven days and nights, documented, without sleep. I was hallucinating and completely unable to function. I still haven't found a medication that will let me sleep more than two hours consecutively, but at least I get that much now. I'm alive and sane.

Well, I think I am, anyway.

The question isn't whether or not some people experience severe symptoms of restlessness preventing sleep. Of course they do. But the question is how aggressive promotion by the pharmaceutical industry has created a mass market for a previously rare condition.

The Restless Legs Syndrome Foundation is actually a Big Pharma front group funded in large part by the makers of the drugs Requip and Mirapex.

Dangerous drugs like Mirapex and Requip are now prescribed to millions of people, including young children. Just how nasty are these drugs? See Requip's prescribing information here:
www.bonkersinstitute.org/requip.html

Another question which needs to be addressed is how a drug-induced disease called AKATHISIA (extreme restlessness, a common side effect of popular psychiatric drugs including Prozac and Zoloft)is often mis-diagnosed as Restless Legs Syndrome. Instead of eliminating the offending drug causing the restlessness, another drug (Requip or Mirapex) is prescribed to control the symtpoms!

Ben Hansen
Traverse City, Michigan

RLS is an evil affliction to have.

In the early 1990s, doctors didn't know squat about it. I was told to "stretch" it out.

Even w/today's "new" RLS drugs, they don't quite do the trick. So yes, drug companies may be trying to capitilize on a disease by marketing other existing drugs for off-label use, but don't think for a minute that RLS is anything but real as he**.

Ben, you are GREATLY confused. I work for the RLS Foundation. We were started by eight individuals who HAVE RLS. We were started 15 years ago, long before any drugs for RLS were even dreamed of. Please don't write things that you do not know. This is not even close to the truth.

I have learned my lesson about trying new drugs, so, I stick with the tried and true.

Both Requip and Mirapex can, and will, cause you to fall asleep. Anywhere. Anytime. That isn't something I want to deal with

When the RLS first hit, I wasn't taking ANY other medication and I don't take any other meds now.

I've had RLS for years as well. I almost laugh at the rather benign description in the ads. My legs don't just tingle - they jump, and I can't stop them. I am somewhat fortunate in that it is easily controlled for me by temporarily increasing the anti-seizure med I already take. I take a low dose of Tegretol to begin with, so it's still not a lot. It always amazes me to see new, EXPENSIVE, drugs being marketed when old, dirt cheap ones will do the trick - assuming the FDA doesn't assume to crackdown more on off-label uses. Nobody is going to spend billions to prove that an off-patent drug is effective for treatment. Why can't the FDA just leave it to doctors and their patients to decide that? Of course, that's a whole 'nother show.

According to Wendi, an employee of the Restless Legs Syndrome Foundation, my allegation that the RLS Foundation is a Big Pharma front group is "not even close to the truth."

Fact: according to the RLS Foundation's 2006 Annual Report, GlaxoSmithKline (maker of Requip) funneled over a quarter of a million dollars, and Boehringer Ingelheim (maker of Mirapex) chipped in more than $150,000 to bankroll this phony grassroots group in 2006.

How much did they give in 2007, Wendi?

See:

www.bonkersinstitute.org/rls.html

Ben Hansen
Traverse City, Michigan

I've always been restless and fidgity. My 5th grade teacher dubbed me "Queen of the Wiggle Worms". In my mid 30's I started to have late evening episodes of what I now believe is RLS and it has progressed since. The symptoms intensify and wane for no particular reason. When it's bad, I go to bed and can usually go to sleep. It's restless sleep but I'm one of the lucky ones who can sleep. 6 months ago my symptoms increased to a level I hadn't experienced before and after several weeks I went to the Doctor and asked for Requip. Unfortunately for me, Requip accelerated my symptoms to a heighth I had never experienced. I didn't sleep for days for more than an hour at a time. I stopped the drug and it took 2 weeks to subside. It's difficult to describe the odd sensation of your legs not just twitching but kicking and jumping and you can't stop it. It's like a "shudder" that goes through your body and legs almost like a nervous tick. It's so exhausting.

I've started to take Magnesium and feel some relief. I still have episodic nights but not as many so I'm hopeful Magnesium is the answer for me.

I recently told my sister about it...we're in our 60's and have never discussed it before. She has it and my first cousin and her daughter have it. My daughter, my Aunt...all describe the same thing. They too have had it all their lives but never talked about it. It was just something you lived with. RLS is for real. The drug companies may be making money on it but if it helps most people then there is a value. I agree there are less expensive drugs you can try. Actually that's what my Doctor would have prescribed if I hadn't asked for Requip. I feel like this condition has become the butt of many jokes and slams so I'm careful.... I still can't talk about it.

I have never had RLS, so I won't cast aspersions on what sounds like a troubling disorder. What I take issue with, however, is the aggressive crusade to fill prescriptions by appealing to the Barnum effect. I see it all the time in my psychology students: Describe a set of symptoms, and, lo and behold, you have a room full of twentysomethings with Alzheimer's disease. With education in logical thinking, one can cut through the hype and see diseasemongering for what it really is, but logical thinking is woefully undertaught in American schools. (University is, for many, their very first exposure.) Most people, even the most intelligent among us, will succumb to the paranoia stirred up by pharm advertising: something is wrong with us, and Pfizer can help.

We are also charmed by the notion that we, after hearing a vague set of symptoms described on television, can diagnose ourselves. Though it might cut our pride, the lay public need to accept that doctors suffer through decades of medical training for a reason. Knowledge possessed by the specialists is not something we acquire while waiting for "Survivor" to come back from commercial. Just like a college freshman is not equipped to diagnose herself with Alzheimer's disease, so are non-specialists unable to make informed decisions in the face of fear and flattery.

30 or 40 years ago I went to a sleep clinic and was told I didn't have sleep apnea but no diagnosis was made. After seeing ads about Requip I though about RLS and saw a doctor at a sleep clinic. He prescribed Requip; I broke out in a drug rash so stopped it. I don't know if it would have helped or not. Due to prostate problems I wake up two or three times each night. Sometimes I go back to sleep; sometimes I get up and read for an hour or two. Sometimes when my legs are bothering I get up and walk around for a little while or even just stank. Thank you for good program explaning some of this. At least I have some idea of the cause of my symptoms and I am not much concerned.

I have Restless Leg Syndrome. When it first began about 20 years ago, Mirapex and Requip were not available. I went for three years without a satisfactory diagnosis. I discovered that drawing or painting helped, mental concentration. It stopped the symptoms, but when I stopped the art work the symptoms would come back within an hour. So I lived with hardly any sleep for those yesrs. I produced a lot of art work, but was exhausted. Then I was given Klonopin. That worked beautifully for two years. Then it stopped working and I was totally addicted. It took me 7 months to get off it, getting ear acupuncture every day to cope with withdrawal. Finally I wss put on Mirapex. That worked. Not as well as the Klonopin had, but it does let me get about 4 - 5 hours sleep a night. I still get leg jerks in the evening or afternoon, but I can lead a fairly normal life.
I was in touch with the Foundation from its beginnings. It may be funded by these drug companies now, but it didn't start out that way. Through the newsletter and also some personal contact, they were instrumental in my finding a drug that would work. I think the foundation is a lot more than the bogus organization that is described or a just a front for these companies. Maybe it has evolved in that direction, I don't know, but it was nothing like that when I was in need of help. So often issues become an all this or all that matter in the discussion when reality is much more complex. Those of us that suffer from RLS find it very difficult to find the organization that helped us so much and has done so much to publicize a disorder that many suffered from without help, criticized so blatantly. - We got the help we needed thanks to the efforts of that foundation. Their newletter published information about ongoing research, and provides information on treatments available. Letters from people with RLS describe different ways they have successfully treated the disorder. Everyone's reaction to treatment is different. The foundations is not a phone grass roots group. Maybe the Drug companies are doing a service for funding an organization that helps and has helped so many.

Virginia Cantarella

My father has RLS and so do all of his children. Some worse than others. Not only does it rob myself of many a nights sleep, it also effects my husbands sleep. I have recently tried a sample package of Requip. The recommended dosage was too strong for me, but I have found I can take 1/2 tablet every 4 - 5 days and it keeps mine under control. I realize that for someone who does not suffer from this, it is hard to understand. Hours of lost sleep, over years of my life, has kept me from enjoying many things in life.

I want to learn more about market assesment and marketing. Since many of us techie geeks that watch WS might have ideas about starting or growing our own companies, how can we learn how to do market assesment in a cool wired science way? And taking it one step further, once the assessment is done, how do we go about marketing our products the way they did on this show, such as educating the doctors and the general public? I think it would be neat if WS could do a segment on that, using a fictious techie type product (or even a real one - like the iPhone)

RLS does disrupt quality of life. I took Mirapex for years and was at 1.0 mg when some life chaos forced me to stop some of the meds for $ reasons. Let me also say, the Mirapex was not doing the trick. I stopped my Metformin--and low and behold, within a couplde of weeks my RLS nearly disappeared. I have some discomfort, occasionally, but not anything like what I went through before. Coincidence, or one drug causing side effects labeled as a new condition??

I was upset as I listened to the show tonight and felt Restless leg syndrome was trivialized. I have had it for many years, kicking at night, avoiding a movie or a play because I knew I'd have to get up and pace, working or reading in the evening standing at the kitchen counter because I couldn't sit still, driving myself and my husband nuts! My doctor prescribed a "parkinson like" pill that really worked and put me to sleep (much needed). She was not too keen on my taking it for long periods, not knowing its long term effects, so I only took it for a few months. As time went on, though, the drug was less effective. I subsequently had a hysterectomy for severe anemia and after years of being anemic, I have built my blood levels to almost normal. The leg problems have abated a great deal. I still have difficulty, but I can cope...I no longer feel that I am going insane! I think more research should be done as to the "why" rather than on the pill.

I was diagnosed with restless legs a number of years ago. 6 months ago, a new doctor I started to see told me that the lexapro I was taking can cause restless legs. I cut back on the lexapro and my restless legs went away, completely. It's disturbing to me that a prescribed medication caused another problem that resulted in my getting yet another prescribed medication to mask the problems the first medication caused. Drug companies should be required to explain the effects in basic, plain english and doctor's need to be aware of what the side effects and drug interactions are of the drugs they are prescribing. Its a horribly vicious cycle as far as I'm concerned. I'm thankful I had an honest, caring doctor that isn't in the drug company's pockets.

I felt offended by the content of this story. It seemed that I was being belittled for my syptoms. I can only say thank God (or the gready folks who come up with these meds) for I would have taken my life if I had to continue living with my RLS symptoms without discovering mirapex. Alcohol helped but one could quickly over do it with the progressive amounts it took to suppress the syptoms. I have been on it for five years now and someday maybe it will kill me but at least today (tonight I should say) I have relief. There is just no sufficient way to describe the symptoms to those without it. I sometimes spent entire nights on my feet pacing, even jumping around, because of the sensations in my legs. I honestly felt I was going crazy and had decided that it would be better to end life than continue in the condition at that time. So, say what you want, leave my mirapex alone.

RLS sufferer

I am getting so pissed off at, I don't know who, over the issue of Restless Leg Syndrome. I don't know whether to be angry at ignorant people who have no idea how aanoying RLS can be. I don't know if I should be mad at the money grubbing pharmaceutical companies that have made, through their ads and enlistment propaganda, this maladie a joke. I started having RLS symptoms way back in 1986 before it had a name. As I have gotten older the symptoms have gotten worse. I was thrilled when I saw my first RLS ad because, not only could I talk to people without them thinking I was crazy but that there was now hope for some relief. I was wrong on both accounts. The general public now thinks that RLS is an escaped SNL skit and the drugs (all dopamine agonists) are useless if not dangerous. I have tried nutrition, stretching, exercise, quinine, folk medicine and accupuncture to get relief. The bottom line is that the condition is real, albeit not as widespread as the Pharm R&D recovery would like it to be, and no one really knows what it is or why. Meanwhile, I have to sleep in another bed than my wife because she can't sleep with my "leg jumpies" as we have called them jarring her awake. The fact that some brainiac had to create a virtual RLS device to try to demonstrate to Physicians what RLS is like is ludicrous. I have read all kinds of blogs from morons making fun of people who say they have RLS. I would probably have an opinion about the hypchondriacs too but I am not one. I take drugs only when absolutely necessary and also only if they work. I have tried Requip and became frightened at what affect it was having on my brain. I have tried three other dopamine agonists and the minimum side affect felt like I was heading toward how Robert Di Niro was feeling in the film "Awakenings". I am close to desperate for a treatment of this that corrects the problem without causing side effects that are worse than the condition. End of rant.

I started having symptoms of what I now know as RLS about ten years ago, but it was not until seven years ago that I happened to mention the uncomfortable restlessness I was having every night as I went to bed, and that it could be hours before I fell asleep in exhaustion. My doctor immediately recognized it for what it was and had me try several medications, including Requip to control my RLS, but nothing worked. He finally said that he had read studies that some people can control their RLS with Oxycontin. I did a little research on the internet myself and decided I was willing to try it, and it worked immediately. I was taking 20mg at night an hour or two before bedtime, and I slept peacefully (read as normally) through the night. I had no side effects, but I did notice that often by mid or late afternoon I was beginning to feel the symptoms of RLS, especially if I was reading or just working at a desk, so the doctor then prescribed Oxycodone 5mg to take as needed, but no more than once a day. That has worked for me for the past seven years without side effects or any tendency of dependency beyond my basic prescription, but if I delay taking my 20mg prescription for any reason, I am miserable with the effects of RLS until I take my medication, and then it takes about 60-90 minutes for it to take effect. For the past year I have been seeing a sleep specialist since it was determined that I had sleep apnea (unrelated to RLS), and he had me try Mirapex for several month to control my RLS, but Mirapex did nothing for me... it did not even make me sleepy.So I am still on the Oxycontin/Oxcodone regiment, and until science learns more about the causes of the different forms of RLS and new medications are developed that will allow me to step away from the opiates, I currently have no choice. I am very regimented not to abuse them so as not to become addicted, but they do the trick in controlling my RLS symptoms (it is not a cure).

I am 62 years old and have had RLS since I was twelve, and had no idea what it was until about 8 years ago.

I remember as a child, I sometimes had to leave church because I didn't know where to put my legs when the attack came on. In later years, I've had to get off of the train/bus until it subsides.

In my twenties, I went to a doctor and was told that I had arthritis. This was disproved about five years later when I took a blood test. I am now taking a magnesium supplement and I think it's helping a little.

I'm too "chicken" to try any of the new medicines I see advertised. I guess my sympthoms are not as severe as other peoples and I'm not as desperate.

I was diagnosed with RLS 10 years ago by a very well respected neurosurgeon. At the time he told me there was no known medication that would help but to have faith that there would be something soon. He did "prescribe" tonic water, specifically Swepps. he said that it would help relieve some of the more severe symptoms and he was right.

My symptoms are moderate to severe, I experience violent kicks that wake me up throughout the night. Mirapex helped, but the side effects were too extreme for me. I’ve also tried Gabapetin with an increase in actual sleep but after I had to increase the dosage I again experienced side effects that were worse than the symptoms.

It's been 6 weeks since I took the last of the Gabapetin and I am beginning to lose too much sleep again. I will need to see my doctor and try something else.

The episode of Wired Science on this subject was disappointing, it seemed to degrade or make light of what I consider is a very serious condition. In moderate to severe cases it can lead to chronic health issues. Have the drug companies taken advantage of a “new” disease? I don’t know, but I do know I have a sleep disorder that causes my legs to twitch so severe that I wake up throughout the night. If the drug companies are trying to find medications to help me with my problem then I support their efforts, I just wish that they would find something without life changing side effects.

The RLS Foundation receives 50% of their support from member donations and 50% from pharma companies. This is shown in their Annual Report. The Foundation is there as a non-profit, to provide the latest information and research regarding RLS. I think many people on this website have already mentioned how helpful the RLS Foundation is. This money is used to educate the public (and physicians) on this condition and to fund their research grant program. (Check out their website and see that over $250,000 was given to research in 2004.) One of these recent grants helped fund a study that recently found a gene responsible for symptoms of RLS. Non-profits cannot rely strictly on member donations to help spread the word. You are unlikely to find a non-profit that does not receive money from big organizations like pharma companies.

I apologize, that last comment was from me, Wendi, the employee at the RLS Foundation. I had meant to title this comment to Ben and wrote Tim in the Name line -- a bit of confusion. I apologize.

I did want to reiterate though what I had said. The 2007 Annual Report is not out yet (Fiscal year just ended), however, you will find that our funding is nearly always 50/50.

You can find more information on our website at: www.rls.org. Our goals have been to increase awareness, improve treatments, and find a cure for RLS. I wouldn't work for the Foundation if I didn't believe in that cause whole-heartedly.

Please check your facts before insinuating that drug companies "made up" Restless Leg Syndrome. I've had it for years, and my grandmother, who died in 1974, also suffered from it. Just because we didn't know what the name was, doesn't mean we don't suffer from it!!! Even Bill Mahar makes jokes about it in his standup act, along with joking about Avandia, which could kill someone. Unbelievable!!!

What I get such a kick out of are the disclaimers at the end of the Mirapex commercial warning not to drive while taking the medication as it can cause you to fall asleep, and that you should contact your physician if you experience a strong desire to GAMBLE or have sex???!!!

All I can picture is an RLS sufferer on the way to the casino slamming into oncoming traffic after nodding out killing the prostitute in the passenger seat!

I have had RLS for as long as I can remember. I am now 47. I would sit in church and wiggle my legs and was aways yelled at to stop. My mom took me to doctor's who had no clue what was going on. When I am tired, bored or just relaxing, POW!!! Wiggle legs & I would have to get up and move. I aquired the nickname "Cricket" by my fellow firefighters due to the way I wiggle my legs at night. Two years ago I had a gstric bypass and for 6 months I did not drink or consume any dairy products. For the first time I was able to sleep and breath at night. When I started to consume dairy products, the RLS came back with a vengence. All of my tricks to help me sleep no longer worked. It was a God send that Requip was created. I can take it anytime and not feel sleepy. The only side effect is the nausea. After 15 minutes I am fine or I just take it with food and chase it with Pepto. I can live with a brief bout of nausea over nights of no sleep, walking the floors or wishing the fire dispatcher would send us on a call. The Pharmaceutical Company's have opened the worlds eyes to a problem many people experience. You cannot begin to understand what it is like not to be able to sit and relax or sleep because your legs do not want to relax or sleep as. Whether is is a pill or surgery, we face risks. We are informed and can read the complications or side effects of a pill or surgery. WE HAVE THE CHOICE to take the pill or have the surgery if it means helping or fixing a problem or living as is. As a Firefighter Paramedic I have to be alert and ready to go at any time. Lack of sleep is not a good thing when you have the lives of your collegues and patients resting on your mental alertness. Not all medications help. They may work for some but not for others. I hope and challenge the Pharaceutical Companies to continue their reasearch into medications that will help thse with RLS or other medical conditions.

RLS is for real. Perhaps there are many people who believe they have it but don't, but those who have it *know* they have it. A 72-year-old friend of mine has suffered badly from this his entire life. His dad had it, his sister has it. 1 month ago he started Mirapex and now his evenings are no longer torture and he gets true *rest* each night while sleeping. RLS was going to kill him - Mirapex has been a Godsend.

Wired Science presented a business story, not a science story and not a medicine story. RLS was just an entry for them to do what they really wanted to do. As for a cure for RLS, give up on that as RLS is genetically-based. RLS can be treated, only, by lifestyle change, habit change, diet change, and possibly meds. Shame on Wired Science, aka Wired Business!

I'm a student of med school but i have never heard of this syndrome in class as in practice,but i search it and now know that the disease exist and also that the drug Requip is worse than a simple placebo, a better treatment is a better diet, exercise and taking more iron, but check whit the doctor fist so he can check the correct amount of these that it needs to recover

Why has the media chosen RLS as the topic/illness to take on the drug companies, the reason: they don't know a thing about it. So they pick an easy target with a name they can make fun of. If this channel (WHYY and Wired Science) are serious about people's health they would have taken the time to talk with real patients who have suffered for years with this disease and now are benefiting from medicines, any medicine that may make their life a little more bearable. Way before any drug companies or anyone else cared...Now that RLS is finally being recognized it turns out only for people to make fun and disregard the illness (Bill Mawr). I sure hope the people who thought this program out never have to face a time in life where they are afflicted with an illness. What goes around comes around.

I had RLS a while back. Treated it by sitting up against the wall like I was sitting in a chair. I stayed in that position until my legs got too tired to hold me up. Problem solved. Don't know if it would work for others, but it helped me.

I am also an RLS sufferer of many years. What I found most disturbing about your coverage of this very real condition is the gentleman who repeatedly talked about the TV ads "doing a great job creating demand for Mirapex and Requip." That implies that RLS is a phony disease made up by the drug companies to sell. their medications.

The ads for Requip and Mirapex are, like 90% of TV ads, very annoying. They have, however, served to legitimize a horrible disease that most people -- including doctors -- had never heard of. Before the Requip ads, I was never able to find a doctor who knew about RLS. I had to research the condition on the Internet, then find a doctor who was willing to work with me on trying the medications that were showing promise as treatments. We ultimately settled on Requip, which I took for many years with fantastic results and without serious side effects.

Please consider a brief follow-up story that acknowledges the existence of Restless Legs Syndrome, and that for some, medications such as Requip and Mirapex are the only source of relief.

I was taking antidepressant Cymbalta and subsequently got very severe RLS. After some research my psychiatrist agreed that there was a connection. He prescribed Requip which immediately gave me a huge headache in the night and made me nauseous. I felt it was ridiculous to have to take a toxic medication to counter the side effects of of an antidepressant. I also got the RLS from taking Flurazepam for sleeping.

I then decided to quit all "drugs" and go the natural way. I am taking a variety of supplements: Magnesium 360 mg, Calcium 1,000 mg, Potassium Gluconate 110 mg, and Zinc Picolinate 22 mg. I also throw in some Vitamin C for the Hell of it. Even though I don't take the Cymbalta or Flurazepam anymore I continue with the generally beneficial supplements.

I also take Mangosteen Plus put out by company called Vemma. It really helps with depression, anxiety, energy, motivation and sleep. I have also lost 15 lbs since I started taking it.

An interesting aspect of this Wired segment was that it highlighted how very little doctors (including shrinks) genuinely care about their patients' welfare. RLS has been acknowledged in writing as far back as the 1600's. Yet the vast majority of modern day doctors were completely ignorant of it until the Requip ads shoved it in their faces. All these centuries doctors have simply ignored patients' complaints about restless legs. We owe the makers of the ads a debt of gratitude. They were able to do what centuries of patients were unable to do: make their uncaring doctors pay attention to their problem.

One thing, though. I'll bet the drug makers and the RLS Foundation won't bother to tell the public that RLS can often be treated with a simple little iron supplement pill. There's no real money in iron pills.

Missed the program on RLS, but can heartily support all those who insist it is a very real misfortune. I have had it mildly for many years (now 77), severely for about four years. Mirapex helps, Requip was ineffective. About to try Night Time Leg Calm. Probably due to Mirapex I tend to fall asleep if I sit down! Miserable.

My 76yo mom has the "RLS"..I'm curious to learn from the others who suffer, if they have/had an ative, fitness oriented lifestyle..My mom has never exercised..says she never liked to sweat, but she is always busy, but can't sit still. From my biased, uninformed opinion, I am thinking it's partially a stress related, and partially a result of "use it or lose it" in the sense that the person's body is telling them to exercise more, relax more ..etc..

I have had RLS for many years. My three siblings also have it. When I first began noticing the syptoms of RLS I was not taking any medications. I tried numerous other medications to help with sleep. THEY DID NOT WORK! I started taking Requip several years before the ads started. It has allowed me to obtain some sleep. It doesn't always work but it beats staying up to 3 am everynight. What is worse the side effects or no sleep. I choose to sleep...

I missed this program because we were on the road--on our way to visit my mother, who has suffered from restless legs for years. I thought this might be a good show for her to see, but I am glad she missed it.
It is frustrating enough for her to have her sleep disrupted night in and night out--hearing this very real condition that has caused major problems in her life dismissed as something created by big pharma would be just too cruel.
I guess I won't watch your program any more. If you treat other topics with the same lack of thoroughness and accuracy that you did this one, your take on science subjects isn't worth hearing.

I first heard about Restless Legs Syndrome about 15 or 20 years ago. I had been having the symptoms, on and off, for several years before that. I was glad to have a name for this weird sensation and know I was not the only one.

I resent your implication that RLS is a "made up" disease. I wish you had given more attention to the real nature of this affliction and the real suffering and resulting problems of its victims.

I am against direct marketing of drugs to patients and support your exposure of drug companies jumping on the band wagon to take advantage. I believe it is really these drug companies that trivialize (and invite ridicule of) the real medical condition.

The simulation boot you showed obviously does not replicate the symptoms very well--if it did your reporter would not have been sitting still.

My experience of the sensation can only be described as thousands of little bugs crawling not only on the skin of my legs, but also in and under the skin until the feeling is intolerable and the legs involuntarily jump wildly.

When I first had symptoms and later heard about RLS I was taking amitriptylene for depression. For me, RLS seemed to be at least partly a side effect of lowering my amitriptylene dose. Interesting because when I did hear about RLS I also heard that the only known treatment was a very low dose of amitriptylene (25 mg if I remember correctly).

My episodes of RLS come and go, and also seem to be related to stress and physical tension.

I get some relief walking, stair stepping or any exercise that tires the muscles in my legs. I can also get some relief by vigorously rubbing my legs for a few minutes with a rough towel.

My wife says I have RLS. If I do, it never wakes me up. So it is not a problem for me but it does bother my wife so much that we sleep in separate beds. Fortunately we have a choice of bedrooms and beds, usually we slect the room with twin beds. If we get stuck in a hotel room with a single bed I have a blow-up mattress. I prefer this to taking another med.

My questions is this: do I really have RLS if it (whatever) doesn't bother me and doesn't wake me up?

Here's a good source of information on RLS from The National Institute of Neurological Disorders and Stroke (NINDS), an agency of the United States Department of Health and Human Services:

http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm

I don't think NINDS gets money from the drug companies.

RLS is real, but I truly believe that people are so quick to trust pharmaceuticals and their M.D.s push them, that they don't bother to try to find the reason. I see many people saying that magnesium and iron help. Excellent! Our diets are so bad these days, who knows what we are lacking and therefore what may be causing these dis-eases. I suffer from FMS/CFS ... of course MD put me on anti-depressants when I became so distressed over my limitations. Took Zoloft for 2 mos. and RLS set in with a fiercity!! After quitting the Zoloft, it took 8 months for the RLS to go away! Yes, one "cure" causing other symptoms so ... add another "cure". Nuts! I now take my supplements, rest when I should and try to cut down on stress ... oh, and eat right. I wonder how many people suffering from RLS are taking other meds for something else. I would bet it's alot. We should know by now that overprescribing drugs has serious consequences ... look at what the over-prescribing of anti-biotics has caused. Now were faced with drug resistant mutations because our bodies have been drugged NOT to fight for themselves!

I had the honour of watching what I had taken to assume was a open minded, fairly well researched program who's take on topics are somewhat light hearted but not offensive.
Well the topic of "Business for Disease" was an eye opener with regards to how Wired Science felt it their place to make light of a well documented and ongoing medical research issue called Restless Leg Syndrome (RLS). I have suffered from this condition for the last 17 years, prior to it having a nice simple name like RLS.
What I also found to be purely a means for a company to push their wares was the addition of a clip whereby a company who constructed a device to put over one's leg that tries to simulate the condition of RLS was a joke. Your host stated she felt a tingling. RLS is far more that a tingling which equates to someone running a feather over your skin. This device has no medical merit as it purely stimulates only the surface of the skin, not the muscular, bones and/or nerves that from within the leg can only be stimulated by the brain or inserted probes into the correct locations that would produce the discomfort required to fully understand what pain from within our limbs feels like when you can't touch or rub it to soothe it. You speak of Pharmaceutical companies promoting hysteria but you in turn promote unwillingly a device that serves no recognizable medical benefit.
It can be a destructive and debilitating condition. Lack of sleep is only one side of a very faceted condition. Depression comes to play for some, relationships or marriages can be destroyed or totally altered, health issues such as heart attacks and strokes can increase, overall diet and lack of exercise due to lack of sleep can contribute to other diseases such as Diabetes.
To address a Pharmaceutical companies practice of marketing and representation is one thing, but to make light of a condition such as RLS and say that such companies are creating or manufacturing propaganda to convince people they have this condition or any other is to say that our conditions only exist because a large multi-million dollar business says so, this is ludicrous.
Its obvious by the postings on this site that you chose to take the topic of RLS too lightly and somewhat belittle those who suffer from a "REAL LIFE SYMTOM".
I hope that your research staff and hosts would in the future take the real time required to understand a topic more in-depth than just a surface browse at what that topic really is addressing. Yes it was about the Pharmaceutical companies and their tactics but it should not have been about minimizing what it was they were trying to bring solutions too.
If you have a headache, do not most of your staff take something for it or are they just making it up so they don't have to work as hard?
No one wants this disorder and those who don't have it can consider themselves very fortunate.
I look forward to the day I can sleep in the same bed as my wife so that I no longer wake her or bruise her legs during the night.
To add, my sleep specialist suggested the use of 1 Clonazepam 2mg tablet before going to bed and this has worked for 8 years.
I admire the shows intentions to expose the obvious but please in the future consider whom your audience is and its impact.
Regards

On a further note to my previous comment.
There is no known one solution fits all in this condition and doctors will continue to experiment at the cost of medicine and patients well being. Its a matter of each their own solution. If vitamin supplements is what works for you or different meds, diets, exercise or simply walking it out, then that is what works for the individual. As a mass of suffers, each has the ability to work with their medical professional to find a solution that works for them. Don't trust the word of one source, scour the many available medical documents or internet research sites who may offer suggestions. Good Health to all.

I missed the RLS section of the program and was looking here to find helpful information on the subject. My husband of 14 years has RLS and it is extremely real. Requipt does not help and I awaken many times in the night to see him pacing. How he functions during the day with such a lack of sleep is a great concern for me. It affects every aspect of his life. Perhaps you can have someone research the cause and perhaps some "natural" remedies - that would be very helpful. P.S: RLS is also a related condition of MS.

The Wired episode on RLS was a disgrace. Bill Mahar was not the least bit funny, but that stupid boot left me laughing so hard I was rolling on the floor. I can imagine that a police stun gun would be a better analogy of what a severe case of RLS feels like. The show's assoction as a possible disease invented to sell medication was a complete lack of journalistic integrity. The woman they interviewed on that subject demonstrated a complete lack of knowledge on the subject.

In an earlier comment on this site, Ben Hansen said "The Restless Legs Syndrome Foundation is actually a Big Pharma front group funded in large part by the makers of the drugs Requip and Mirapex." Sadly, Ben makes his comments without any evidence other than his misplaced assumption. At a recent RLS Foundation national meeting in San Antonio, all of the doctors explained that Methadose (methadone) used safely in small quantities is the best treatment for RLS. Methadose is available in generic form and is very inexpensive. That does not sound like a front for Big Pharma.

Which brings up another point. The Wired epsisode led me to assume that Requip and Mirapex were the first two drugs for RLS. In reality, I have been taking Methadose long before they were available. Requip and Mirapex are the first two "FDA approved" drugs for RLS. Because Methadose is a cheap generic drug, no company will spend millions of dollars to get FDA approval which is not even required to prescribe it for RLS. Of course, no drug company will spend millions of dollars to advertise Methadose either.

Another problem with Methadose is its reputation as a medication to help get addicts off of heroine. The doctors at the conference all agreed that when used in small quantities for RLS, it's a safe, often effective drug. Methadose may not work for all people. Iron supplements help a few people. I have always had normal iron levels and tried huge amounts of iron pills which provided no relief. An iron infusion helped, however.

Since few doctors specialize in RLS almost none are familiar with the best medications for its treatment. Sadly, I think that most doctors' knowledge of RLS may be what they see on the ads for Requip and Mirapex. If your doctor has not helped you I suggest contacting the Parkinson Disease Center at Baylor Hopspital in Houston. Dr. William Ondo there wrote the book on the treatment of RLS.

RLS is a monster and evil. It is hereditary. At present I am 62yrs old. My grandmother had it and this was way in the early 1900's. My mother suffered greatly from it, it was horrible for her, she could not even sit in a chair without her RLS acting up.I cannot for the life of me how they lived with this horrible disease. My brothers have it, one of my brothers will go for months without sleep, he became hostile,very abusive and suicidal,many times he put a gun to his head. I myself suffer from it,but not as bad as him. My daughters have it but not as bad as I have it. It is about time there is a medication for it! Years ago Dr's didn't even know what you were talking about. I guess in the old days they probably put them in a institution diagnosing them with paranoid schizophrenia(sp),you can go crazy and it does!!Thank you God for letting the Dr's and Pharmaceuticals see the light. But where were the Doctors all those years? Where were the Pharmaceuticals. Was there already something out there? What did it take for them now so quickly bombard us with their advertisements?
At present I have been taking Requip for last year or so. My Dr. knew I had LRS when did everybody stand up and take notice?

Without sleep your Dopamine levels drop, and you start have jerking movements emitating Parkinsons Disease.
Doctors know this. Couldn't they already years ago give us LRS sufferers Dopamine? My Dopamine levels were extremely low due to lack of sleep.
Why did they holdout for so long?
Good health to all,
regards

I know now why I don't watch PBS. "Wired Science"? more like wired garbage. Your presentation on RLS gave the impression that doctors are treating a disease that doesn't exist.
I assure you that it does exist. I have been treated since mid-nineties with a drug called Temazapam. Without it, I couldn't sleep at night. My legs take on a life of their own. I won't go into detail, because none of you "science experts" would understand.

The next time you want to make fun of someone with a dibilitating ailment, do your homework.

My family and I have lost all respect for PBS! My husband has suffered from RLS for 20 years. It has had a debilitating affect on every aspect of his life. His 20 years of sleeplessness has impacted his ability to function. This relentless disease slowly destroys the body and mind of everyone it afflicts. How dare you present it in such a trivial manner and then include jokes from such an insensitive human being (Bill Maher)? What a slap in the face for all of the desperate people that watched your program, hoping that their prayers may have been answered!!!

You continue to "beg" for donations to keep your programming going...take a minute to think what it's like for the hundreds of thousands of RLS sufferers who "beg" for relief every minute of their lives, the next time you put one of these medical programs together! HOW INCREDIBLY INSENSITIVE OF YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!

One other thing that I should point out is that the episode on RLS was very similar to an article that ran in Science Magazine, a British publication. My hope is that the editors and writers of Wired would have done their own research in coming up with the conclusions that they reached. It would be nice to think that it was purely coincidence that Wired's story was eerily similar to some of the the same wrong conclusions in Science Magazine and not just copied to save time. I'm in no way accusing Wired of copying, only saying that it is a big coincidence. Regardless, as can be seen from the above letters, Wired did not get their facts and conclusions straight. I just hope that it wasn't the result of copying another publication's same wrong conclusions.

I missed the show but gather from reading other comments that the premise of the report was that it's wrong for drug companies to try to sell drugs directly to the public. I somewhat agree with that but thank goodness for that first Requip commercial. My RLS started during recovery from a ruptured L5-S1 disk in 1963 but I didn't know I had something defined until that commercial. More times than not during the ensuing years I have had to get up 1 to 4 times a night and exercise my legs and then do push ups just so I could lay quietly enough that I might get back to sleep.

I can not begin to describe how wonderful it is to be able to lay in bed and even though I am not sleeping, my legs lay quietly. I may get up sleepy in the morning, but I'm not exhausted as I used to be.

Oh yes, to the commentator who said that requip is a sleep aid, No it isn't. It's a "quiet legs" aid, the going to sleep you have to do yourself.

And to the commentator who belittles the dual use of drugs, our bodies are extremely complex and there are so many examples of drugs developed for one problem found to also help another that that comment was silly at best.

I am horrified that your program, the ignorant doctor, and Bill Mawr belittled a serious illness. I worked as a medical librarian at Stanford. Don't you do any research? I suffer from a severe form of RLS which causes involuntary limb movements, for hours, every night. Not all doctors are fully informed about all diseases. Neurologists handle movement disorders. Currently there is a great deal more information about the disease than in recent years. That is partially thanks to the RLS foundation.

For centuries siezures were thought to be caused by possession by the devil. We learn more about the body as the research is done. Yes, the drug companies are powerful, and they charge what they like in this country, but that has nothing to do with whether or not the drugs work. Keep it separate and stick with the facts.

As to the issue of dangerous side effects, all drugs have side effects. Anything you put in your body has an effect, some good, some bad, some lethal. Shall we stop using penicillin because one can be allergic to it? How long do we test medicines before allowing suffering people to take them?

I am profoundly disappoointed in your "reporting" and in PBS for allowing this to be aired. I would like to know if you will be airing a summary of responses to the program.

Deborah Kunath

I've had restless leg syndrome for years. Eating a couple of bananas a day works wonders. I know I need to stock up again when the symptoms return.

An excellent report, except it missed one important fact. How much money did the drug industry give to the incombent President and co-President in 1997 to get the FDA (and FCC) to allow the mass marketing of prescription drugs? That was quite an era for mysterious industry growth in several other areas too. The doctor is no longer the gatekeeper for serious medical treatments, which are now distributed like Hannah Montanna tickets.

I used to suffer from RLS. I increased my iron intake, took 1500mg. calcium with Vit. D divided in 3 separate doses, multivitamin and B-100 complex. I also took a magnesium supplement by itself and not with dairy products or other vitamins. In addition, I started wearing cotton socks to bed to maintain temperature in my feet. The RLS stopped. Calcium is very important because it affects the contraction and relaxation of muscles. Your body only absorbs 500 mg. at a time. Also, you can't absorb it without Vit D and magnesium. Take the magnesium separately as well because other vitamins prevent it's absorption. I am a nurse and understand the need for medications, but I believe strongly in the preventative and curative powers of nutrition. I had breast cancer which had spread to my lymph nodes in 1994. I had a bilateral mastectomy and minimal chemotherapy in addition to a lot of vitamins. I'm still here without reoccurence.
Good luck!

I would like to know how much physical exercise RLS sufferers get each day? I know people who tell me they think they have it, or are on anti-seizure drugs for it, and though I can not say to their face, I know that they do not get enough exercise. Our bodies were designed to live a life of activity. We and our earth were not built to drive for hours a day in a car, or spend hours on the computer or at "work",or hours in front of a television. The elderly in traditional societies are much more physically active than the elderly in ours. What is the world wide occurrence of this dis-ease?

Until I see that people with RLS are actually moving their bodies in a healthy manner and with the frequency and proper structure that promote good health, (not intense injury inflicting repetitive type of activities), then I might feel sorry for those peoples whose bodies are simply crying out for they to get some exercise.

To suggest Restless Leg Syndrome was invented by the drug companies, that people are just seeking to dispense with mere "unpleasantries of life", this condition being a laughable inconvenience --is wrong. ok, it's not a *major* disease, but frustrating, and only gets worse over time as patience wears thin. I've had this issue years now (started sometime after college), before I heard the term.

I haven't found any lifestyle changes including exercise to directly correlate --though staying hydrated helps mute symptoms at night.

As far as i can tell the condition didn't have a term as most people might just report they 'didn't sleep well' at night, that's what i would say and leave it at that, maybe articulate the symptoms better with my girlfriend.

I've gotten suggestions for Shao Yao Gancao Tang in granules, 3 scoops 3x/day. The alternative, magnesium glycinate / magnesium citrate (minimum dose, suggested liquid CalMag). Also read somewhere that nitrates make it worse, and tonic water might help. haven't confirmed. Personally, I'm not interested in the new Rx meds, you have to take daily for them to work.

I *have* tried the Hyland's Restfull Legs, OTC homeopathy remedy, and have to say it works ~remarkably~ well, reasonably quick too. Awesome. Plus you only need to take it as symptoms arise --no changing your body chemistry as with the Rx meds.

I have suffered from RLS since I was a child. I could not sit still in church and now, at age 51, I am miserable. I cannot even lie down for a simple nap. The second I lie down or even sit to rest my RLS starts up. I swim and go to the gym three days a week. It does not help my RLS. I have separate bedrooms from my husand, I lie there at night and cry for hours. I even cry before bed in anticipation of what lies ahead for the night. I just started Requip and I am on day six today with no effect so far. I am hoping and praying it will help. It is ruining my life. I did not see the PBS show and Bill Mahr but I do not appreciate it. I do not wish bad things on others but I would like to see someone who makes fun of RLS have it for a few weeks non stop and let them see how it feels. I do not want to live my life like this. It is TORTURE! I am happy that I fond these postings. I think I will try a few of the natural treatments like calcium and magnesium. Thank you!

I have watched your piece on Restless Leg Syndrome for the first time tuning into your wired program. It will be the last and will tell all friends to never watch your show. Your information on RLS was one-sided and not enough research or investigative work into your extremely poor piece. This is a REEEAAALLLL Syndrome that effects the brain, spinal cord, and is neurological. It is hereditary in my family a dad, me, and sister have suffered for years we are of french-canadian descent. I was diagnosed at 15 yrs. and am now 41 yrs. of age. A team of neurosurgeons at Boston City Hospital. I find your magazine very ignorant, uneducated, and poorly informed on this issue that has effected my family gravely for many years. I understand the drug companys trying to get there $$$ off of any disorder or illness.
I do understand many now whom are not sufferers of RLS, portraying to doctors they are. It takes one to know one who share this dibilitating syndrome. One day it will not be a syndrome and you should investigate more into scientific areas such as implants in the brain that are used in parkinsons patients, that will one day be a hope for us RLS patients. I despise others who have called it
growing pains, in your head, and just a syndrome of complaints. I have chosen no pharmaceuticals since the age of 24 can help this condition. I refuse to go around as a drugged up zombie. I have had lack of sleep since 7 yrs. of age and have never had a normal sleep pattern, nor believe I will due to RLS causing apnea. I hope you will listen to your comments and change this piece into something more scientifically based as the studies you failed to research and put out there in news. This is a very serious neurological disorder with very little research done and lack of proper funding to help us.Would you do this if cancer was a syndrome before a disease.
Two sisters and a dad who share RLS.

Anyone who has had RLS knows it is not an invented disease. I had it way before these commercials ever came out. My grandmother also had it before there was an actual diagnosis.
People who say this is invented don't have it. It's like straight people telling gay people it's a choice. Sorry you don't know what you're talking about.

I just wanted to send you a note about Night Time Leg Calm. I read
the comments about it in your site and I wanted to be able to respond
with my experience. I too doubted that this product would work. But
I can't even describe how amazed I am by this thing. I have had RLS
since 2001, and according to my neurologist, one of the most severe
cases he has ever seen. (Over 500 movements during a 5.5 hour sleep
study). I ended up taking prescription medication and from the time I
started my dosage had to be increased eight times in order to control
the movements. The side effects, however, made me sleepy and tired
during the day. I was looking for some new RLS literature on Amazon
when I found this product. I didn't think it would work, but I decided
to give it a try. I was almost speechless when it helped almost
immediately. I have only been using it for 30+ days, but so far I have
been waking up before my alarm, I don't feel the need to nap during
the day and have had a noticeable increase in energy. It has been so
long since I have had a good night's sleep, that this is absolutely
amazing. This product is available at Amazon.com in a two pack, but I
later found it for those who want to try it at CVS.com (not in stores
yet) in a single pack. The company offers a money back guarantee so
you can't go wrong. They believe in it strongly enough that they
offer your shipping back (I did my research before buying). If it
sounds like I am selling people on this product, well, maybe I am. I
love it!

Mary G W-