Restless Legs Syndrome and how it's treated

Tegan Taylor: Norman, I know that you sometimes struggle to get enough sleep and I wonder whether it's your brain that keeps you awake or if it's your body that keeps you awake.

Norman Swan: I think it's my brain rather than my body. My body wants to go to sleep, my brain stops it.

Tegan Taylor: My brain often keeps me awake too, but sometimes it's my body that keeps me awake. Sometimes I sort of get this twitchy feeling in my legs, which I have discovered is not unique to me, and it actually has a proper name.

Norman Swan: It does and you're going to have to continue listening to What's That Rash? to find out what's Tegan's problem's name.

Tegan Taylor: We should rename this podcast. I am health reporter Tegan Taylor, and today I'm o7n Jagera and Turrbal land.

Norman Swan: And I'm physician and journalist Dr Norman Swan, and I'm coming to you from Gadigal land.

Tegan Taylor: So of course, Norman, we are talking about restless legs syndrome, a syndrome that is pretty self-explanatory.

Norman Swan: Yeah. And in fact, since we began What's That Rash? it has been one of the common questions we've been asked. So just to remind people who might just have come upon What's That Rash? for the first time, what we do on What's That Rash? is answer your questions, and we've had quite a few questions on What's That Rash, and here are two from Jim and Henrietta.

Tegan Taylor: So Jim is asking about restless leg syndrome. Jim makes the point that it's common, it might not kill people, but it is physically distressing when it happens, and that continual nights of disrupted sleep can have real detrimental effects on your mental and physical health. And Henrietta says in her family they call it jiggly-legs. And she's wondering whether magnesium supplements help, and how to manage this annoying condition. And as I kind of alluded to before, I'm also quite curious to know how to manage this annoying condition.

Norman Swan: Okay, well, we'll get on to that. But you, being the history maven, have dug up one of the earliest descriptions of restless leg syndrome.

Tegan Taylor: Well, what I didn't read out in Jim's question before was he accuses the research around restless leg syndrome as being quite thin, which in a sense it is, but it certainly has been described a long time ago. The earliest description that we found was from the 1670s by a neurologist, Thomas Willis. Were people calling themselves 'neurologists' in the 1670s?

Norman Swan: Probably not, but…

Tegan Taylor: I thought they were mostly barbers who also sometimes cut people's legs off.

Norman Swan: Well, that's right. And in fact they were sometimes ministers of religion as well, and in fact restless leg syndrome, the other name for it is Willis-Ekbom disease.

Tegan Taylor: One day I'd like to have a disease named after me, but a cute one. Anyway, Thomas Willis writes in describing restless leg syndrome: 'Wherefore to some when being abed, they betake take themselves to sleep, presently in the arms and leggs (spelt with two Gs), leapings and contractions of the tendons. So great a restlessness and tossing of their members ensue, that the diseased are no more able to sleep than if they were in a place of the greatest torture.'

Norman Swan: Clearly, it was pretty bad stuff in the 17th century, and it can be bad stuff today.

Tegan Taylor: So we kind of have this really old 'ye oldie' description, but in terms of the modern approach to it, it's actually not until the last few decades that we have updated the diagnostic criteria for restless legs.

Norman Swan: Yeah, let's just describe what it is, and what it's not, I suppose. It tends to be something that happens at night and during sleep, or when you are at physical rest, but it's usually after dark. And you get rhythmic contractions in your legs, which can be quite violent and affect your partner if they're in the same bed as you. And it can also be associated with creepy-crawly sensations in the skin of your legs and your lower limbs. Occasionally, your upper limbs can be involved as well, but it's mostly a lower-limb problem. And it's a bit commoner in older people than younger people. In half the people who've got restless leg syndrome there's a family history of restless leg syndrome. And the prevalence in the community varies a lot. But it's said that for people who get it at least twice a week and it's moderately disruptive, it's about 3% of the community, which is still a lot of people.

Tegan Taylor: Yeah, and I suppose the condition itself isn't causing harm unless you're kicking your partner in their sleep…

Norman Swan: Well, it is if you're not getting sleep.

Tegan Taylor: This is it; the prolonged lack of sleep or disrupted sleep is what the harm comes from.

Norman Swan: Yeah. And you've got to differentiate, so what we're talking about is restless leg syndrome in its own right. It's not to be confused with muscle pains for various reasons, for cramps, or arthritis that might wake you up and you shake your leg to try and get the pain of the arthritis out of your leg and so on. So it's really a condition in its own right, although we do know what increases the risk.

Tegan Taylor: So there's actually quite a few things that increase risk. And I wanted to ask you, because one of the things that are said to increase the risk of restless leg syndrome is alcohol. But we also know that alcohol can make your sleep quality poorer. So I did wonder whether some of these things that increased the risk might be bystanders or whether they could be driving it or whether there's maybe a vicious circle happening there.

Norman Swan: It could be causative, it could be a bystander, it could be that when you've got restless leg syndrome, you're more sensitive to the effects of alcohol on the sleep process. Caffeine is supposed to be an exacerbator as well, it can make it worse. Sleep disorders may make it worse. Some people have argued this is a sleep disorder, other people say no, it's not. And the other thing that's related to it that some people do believe is causative is how much iron you've got in your brain.

Tegan Taylor: Iron in your brain? So what's the story with the brain connection?

Norman Swan: So just to remind people, you need iron to make haemoglobin to stop you becoming anaemic. So iron is a very important metal, if you like, inside your body, for various reasons, not just haemoglobin.

Tegan Taylor: It's what gets the oxygen in your blood to the parts of your body.

Norman Swan: Correct. But there are other functions of iron, potentially, as well. And what they've found in restless leg syndrome is that the iron stores in your brain can be low when the iron stores in the rest of your body are normal.

Tegan Taylor: Wow. Okay.

Norman Swan: That dumbfounded you!

Tegan Taylor: It doesn't take much!

Norman Swan: You're going to ask me why, and the answer is nobody knows. It could be something to do with what's called the blood–brain barrier, which is the barrier between the blood vessels and the brain, which means that iron in some people might not get into the brain as easily for some reason. It may be the iron is used up more in the brain in people with restless leg syndrome.

It's also known that things are going wrong in the way the brain is working. So the chemical transmitters in the brain aren't working as well. So antidepressants can increase the risk of restless leg syndrome, some antihistamines. And it's known, for example, that antipsychotics can make it worse, they affect the dopamine system inside the brain. But in fact a drug for Parkinson's disease called L-dopa which increases the level of dopamine in the brain can actually help restless leg syndrome, up to a point, because after a while it can actually make it worse.

Tegan Taylor: So there's very much a nervous system connection here rather than something maybe mechanical in the legs.

Norman Swan: It's not mechanical in the legs. I think everybody would agree that this true restless leg syndrome is a problem in the brain.

Tegan Taylor: So we know that the Parkinson's disease medication could help. You mentioned cramps before, and Henrietta was asking about magnesium and whether it could be a treatment. What other treatments might there be that seem to work?

Norman Swan: Well, let me tell you what doesn't seem to work from the current evidence. People have tried deep brain stimulation. They've tried spinal pacemakers, that's electrical stimulators that go into the spinal column to try and counteract the effects of the restless leg syndrome, they do not seem to work. And supplements such as magnesium do not seem to work. So there's probably no harm in them, but probably not a lot of benefit.

What there is some evidence for are iron transfusions or iron supplements. It's known, for example, just on the non-drug treatment, that 'mental alerting' works, which means that you get up and you distract yourself. So this is the opposite from what you normally would say with insomnia, that you don't use screens, video games, something to distract your attention can help. Exercising the legs, so getting up and moving tends to get rid of the restless leg syndrome, but it often will come back when you go back to bed, which is very annoying.

Now, the treatment of restless leg syndrome really goes in grades. Parkinson's-like drugs, there's one called L-dopa which increases dopamine, they are not first-line treatments, because they can augment (that's the word they use) restless leg syndrome after a while. So, terrific to begin with, but then after a while the condition gets worse.

Then there is another set of drugs, drugs that have been used for epilepsy but they're called atypical antiepileptics and those drugs go by the names of gabapentin, pregabalin, and they have been shown to be effective, but be careful what you wish for, some of those drugs have significant side effects, they can make you drowsy, feeling foggy and so on. You've got to be careful that you balance the benefits of the treatment.

Benzodiazepines, Valium-like drugs have also shown maybe to have some effect, as have opioids. Again, this would be the brain effect of the opioids, these are narcotic-like substances. But the problem with opioids is that you can become dependent on them and you've got to be very, very careful about using them. So most people would say that you start with the gabapentin, pregabalin, and you think about the dopamine type ones for Parkinson's disease, maybe try the Valium. This is not something to try by yourself at home, you really do need the expert advice of your general practitioner. But it is a very annoying and disruptive condition in some people. Some people might just get it once a week but some people are getting it several nights a week.

Tegan Taylor: If you are feeling something like this for the first time or newly, could it be a signal of something else?

Norman Swan: A new symptom that you've never had before is something that needs to be looked at. If it's something…let's say, a brain tumour, these are not typical symptoms of a brain tumour. And if they were, it wouldn't be restless legs by itself, you might have odd symptoms elsewhere in your body. It's unlikely it's pure restless legs when you've got something more serious or life threatening going on. But any new symptom needs to be investigated and have a chat to your GP about it and it's not to be ignored.

Tegan Taylor: The other thing with restless leg syndrome, from my reading, is that it can get worse as you get older, rather than easing off as you get older. I also know from my own experience and also from the literature that it's something that sometimes pops up during pregnancy. And apparently the more pregnancies you've had, the more you're predisposed to it. But then, paradoxically, once you hit menopause, you're also more likely to have it, so you just can't win.

Norman Swan: You just can't win when you're a woman can you, you lose at every turn. And thank you for reminding me, pregnancy is a risk factor for restless leg syndrome, but it usually goes away after the pregnancy. It's just one of these mysterious conditions, and because it's not life threatening, it hasn't had the attention it deserves.

Tegan Taylor: So, take-home messages then for Jim and Henrietta. Jiggly-legs, for starters, I think is a much better term for the disorder. And it's caused by lots of different things. It could get worse as you get older. And there's a spectrum of interventions from very low through to quite intensive.

Norman Swan: That's right. But step one is talk to your GP and get what's called a differential diagnosis out the way. You find out what else it could be given your spectrum of symptoms, when you actually take a history, you may have more than restless legs, and it might be something else altogether, looking at the other drugs that you're on, looking at your sleep patterns and how you approach the evening in terms of alcohol and caffeine. And for a lot of people, that will help.

Tegan Taylor: Well, I hope you're feeling less jiggly, Jim and Henrietta. And if you want to be like Jim and Henrietta and send in a question, you can do so by emailing us, we are thatrash@abc.net.au, which is also where you can send any feedback. And a couple of people have been in touch to talk about sweeteners, which is what of course we talked about last week, artificial sweeteners. Nikky has pointed out…because we didn't really get time to talk about the dental side of things, but Nikky says yes, artificial sweeteners are better for your teeth than sugar.

Norman Swan: Sure.

Tegan Taylor: And Linden wants to know more about…you mentioned in passing the toxicity of fructose specifically as a sugar.

Norman Swan: Yep, fructose. So table sugar, sucrose, is half glucose, half fructose. And the evidence suggests that fructose behaves more like a fat in the body than a sugar and can increase the risk of coronary heart disease, for example, and other organ damage. It's incredibly controversial in the United States where high fructose corn syrup is added to a lot of different foods. And so fructose is generally recognised as not being terribly good for you in its pure form. In fruit, fine, because you're not going to take that much of it. But otherwise, you've got to be careful of it.

Tegan Taylor: Also, coincidentally, around the time that we brought out our episode on artificial sweeteners, there was a new study on artificial sweeteners that came out that showed that they could be useful, but there are several asterisks against that statement.

Norman Swan: This was a press release that came out foreshadowing presentation at a conference, and the results of the study where as you suggest, but you have no data really on which to base the decision, it's not peer reviewed. And some of the authors were employees of the industry that produces artificial sweeteners or uses it in their foods.

Tegan Taylor: Yeah, I mean, to just summarise what the…it was the SWEET trial that looked at whether sweeteners raised risk markers for type two diabetes or cardiovascular disease, which they said they did not. And they also found that low or no energy sweetened products could help children with high levels of uncontrolled eating. I have other questions about the use of children in weight loss studies that I might save for another day. But like you say, there's potential conflicts of interest there with the authors and we haven't actually seen the data yet.

Norman Swan: But, for full disclosure, there has been a contradictory study to what we said on the show.

Tegan Taylor: The other thing that we had an alarming number of emails about, Norman, were people just desperate to know your tiramisu recipe.

Norman Swan: Gosh, well, you're going to have to accept a fair bit of sucrose in there, and fat. But I will post the tiramisu recipe on the What's That Rash? website for people to indulge. But remember, you can't drive straight afterwards.

Tegan Taylor: Good note from the doctor there. And we'll see you next week.

Norman Swan: See you then.