Interviewer: Do you suffer from restless legs or you think you might? Well, we're going to talk about that next on The Scope.
Dr. Chris Jones is a neurologist and a sleep and movement disorders expert. And today, we want to dive into the topic of restless leg syndrome. Dr. Jones, let's start off first of all, what is restless leg syndrome?
Dr. Jones: Nobody really knows.
Interviewer: Oh, that's going to make a tough conversation today.
Dr. Jones: But every person with restless legs knows how bad it can be and that it's real even though there are no physical signs of illness.
Interviewer: Okay. So you could do all sorts of physical examinations and you wouldn't find anything with somebody reporting restless legs at night?
Dr. Jones: Exactly. It's easy for your doctor to overlook this.
Interviewer: Okay. So what do most patients report as the symptoms that you would define as restless leg syndrome?
Dr. Jones: An urge to move the legs particularly in the evening, usually it's below the knees. It's very difficult to describe what this is because it's not an itch, it's not a pain, a numbness, tingling or cramp. All I can tell you is it's very frustrating, and it gets worst in the evening, just when they want to fall asleep. There's a wide range of severity of restless legs symptoms and, to an extent, it may just be part of the human experience to have a little of this.
Interviewer: Yeah. If somebody does have it, what would they do about it?
Dr. Jones: First of all, they would find the nearest sleep center that advertises experience with restless legs syndrome, because it is very difficult to treat and very easy for the doctor to make it worse.
Interviewer: Okay. Is it usually one expert, or is it kind of a multidisciplinary team, an interdisciplinary team I should say?
Dr. Jones: It gets interdisciplinary when the restless legs facilitates the development of a chronic insomnia that's quite apart from the restless legs but instead is a learned inability to fall asleep at night.
Interviewer: So what could start out as just a physical sort of manifestation of the symptoms could then turn into a mental manifestation affecting your sleep?
Dr. Jones: Exactly.
Interviewer: And is that when most people tend to seek help when it's affecting their sleep, or should they come to you sooner than that?
Dr. Jones: Yes, they should come as soon as it's making an impact in their life, because the older you get the harder it is to treat.
Interviewer: Oh, okay. So when you first started noticing those symptoms you would find somebody, such as yourself, that is an expert in this sort of thing. And then what would that appointment look like? How do you track down a condition that is not easy to track down?
Dr. Jones: You should expect and request a thorough history rather than emphasizing the physical exam, that's number one. Number two, you should expect them to ask for a positive family history of leg problems at night. And if you're a female and there's any reason that you might be iron deficient, you need to have your iron status measured because low iron, even slightly low makes restless legs a lot worse. Iron deficiency is a major exacerbator of restless legs.
So if you are donating blood in any fashion to your hospital blood bank, to the fetus that's in your womb, to heavy menstrual bleeding, then you are at much higher risk of restless legs. And you may need your iron level bumped up, whatever it means, so the treatments can be a little more effective.
And then the physician should ask you what medications, including over-the-counter medications you take, because over-the-counter antihistamines and many antidepressants actually make restless legs worse. And, of course, restless legs tends to lower moods, so people tend to get on antidepressants, so we have a vicious circle there.
Interviewer: Is there a cure for restless legs syndrome, or can you just manage it as best you can?
Dr. Jones: Not only is there no cure, but it's very easy for physicians to make restless legs worse. Prescribing a category of medication called dopamine agonist, it slowly makes the brain have even more restless legs, which requires higher doses which makes the legs worse. And this can take a long, long time to resolve after stopping the dopamine agonist. So rule number one is do not, with all due respect, do not let your primary care provider try to treat this. This really is a complicated, difficult sleep medicine problem, and you should go to a sleep center that has experience with restless legs.
Interviewer: And out of the patients that you see with restless legs syndrome, what percentage find some relief?
Dr. Jones: Well, I think most people find some relief early on in treatment. But again, the best medications we have gradually make the symptoms worse. And when those medications fail, the backup are opioid drugs, and those are potentially addicting. They can cause shallower breathing in sleep. And so, again, you have to be working with a sleep center that understands these things and will keep you safe.
Interviewer: And we still, I'm going to try you one more time. We don't know what causes this.
Dr. Jones: There's only been one genetic alteration that's strongly related to restless legs, but we do not have right now as a clear picture of all the genetics of restless legs and how that might inform a more fundamental cure for this.
Interviewer: And do we know if it's neurological or physical?
Dr. Jones: This is definitely neurological, and it's been linked in mice to a part of the brain where dopamine and leg movements are coordinated.
Interviewer: So after you see a sleep specialist and they are able to help you manage your restless legs, if you're still encountering insomnia, what should you do at that point?
Dr. Jones: At that point, you may well have a learned chronic insomnia, and cognitive behavioral therapy for insomnia is far and away the cheapest, the safest, and really the most effective over the long term. Unfortunately, there are not very many cognitive behavioral therapists for insomnia out there so you have to hunt around for a sleep center that has one.
updated: April 13, 2022
originally published: May 3, 2017
