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Welcome to Doc Talk, a weekly podcast featuring Monument Health physicians addressing medical topics. Tune in to your health with Monument Health. It's another edition of Doc Talk. I'm Leslie Lane, and in studio today I have Dr. Catherine Fernandez Aristy and Jessica Hutchinson, who is a certified nurse practitioner. Together you've come in today to talk about something that maybe in the media gets made fun of, or maybe we know someone who deals with this. Maybe you do. Restless leg syndrome. So first and foremost, welcome to the studio. Let's start with the basics. What is restless leg syndrome?
Well, thank you for welcoming us.
Yeah, thanks for having us. So I've been telling Dr. Fernandez Aristy for a while we should talk about restless leg syndrome, because it's a really frustrating thing that we work with in sleep medicine, and there have been some changes to the guidelines that aren't well known. So to start, restless leg syndrome is a sensory motor movement-related disorder, and the diagnosis relies on clinical symptoms.
Yes. So the International Classification of Sleep Disorders, or ICSD, which is our manual to diagnose sleep problems, states that restless legs is one of the motor sleep-related disorders. It is the most common motor sleep-related disorder. And people need to meet certain criteria in order to qualify for that diagnosis. Like Dr. Fernandez Aristy was mentioning, it's a clinical diagnosis, so we don't need any further testing to make the diagnosis. However, we may need additional testing in order to treat our patient. The diagnostic criteria includes an uncomfortable sensation in the legs whenever we are either about to fall asleep, we wake up in the middle of the night, or we are sitting for prolonged periods of time. And if you could see me, I'm moving my legs right now because I do have restless leg syndrome. So this sensation is not secondary to any other health condition, such as obstructive sleep apnea. Hence, we need to make that clarification whenever we are reviewing a sleep study or seeing the patient. Is there a sensation in your legs? Creepy-crawlies, pain, an urge to move your legs? Is that urge getting better once you move your legs? If it does, that's another clinical clue. The other thing is, does it follow a circadian pattern? Meaning does it tend to happen in the evenings when you're sitting around? And if the patient meets that criteria and they are experiencing these symptoms at least two to three times per week, then we can call that restless leg syndrome.
So those would be the big signs of restless leg syndrome. Because we've all had restless nights, but it's a little bit different. It goes beyond that, right?
Correct. Yes.
And if you're still trying to classify whether this is restless leg syndrome and you go in to see you guys, how do you help distinguish that from just regular muscle tiredness, or maybe going through a period of anxiety? How do you walk your patients through that process?
That's a great question. I think for me personally, I tend to look for that circadian rhythmicity. That's one thing. Usually if you are tired or if your muscles are sore, you'll be sore kind of throughout the day or within that twenty-four-hour period. There is a chance that after a massage you may feel somewhat better. But restless leg syndrome is more of this uncontrollable need to move your legs.
Gotcha.
And like Jessica was mentioning earlier, it's a sensory motor problem, so you have that uncomfortable sensation but it's relieved by movement. Asking very incisive questions can be helpful.
And I'll hear patients describe it as like bugs in their veins, or Rice Krispies. They say it feels like the way Rice Krispies sound is the way it feels in their legs. So really trying to distinguish it from leg cramps or neuropathy can be challenging at times. Other things that I do, and I think most of us in the sleep center do, is try to look for some answers. We check the patient's medication list. Are you taking medications that are more activating from a motor perspective? Are you getting enough sleep? Are you drinking copious amounts of caffeine or energy drinks? Because movement can just be a basic response to those substances. The other thing I look into is the patient's iron levels, because restless leg syndrome has a genetic component, particularly when it's secondary to iron deficiency. It can also be secondary to dopamine dysregulation, or secondary to other concomitant sleep disorders, including obstructive sleep apnea. So if you're seeing the patient for the first time, there is a chance they may have some type of sleep-disordered breathing. You try to address that. If you do the sleep study and you find that they're moving their legs, the diagnosis is potentially still restless legs, because you already asked those questions and it follows that circadian rhythm. But there is a chance you don't need to treat it with medications or supplements if there is resolution of the restless legs once you address the other sleep disorder. However, if you still see persistence of restless legs after addressing their other sleep problem, you go back and evaluate their iron levels. Are they adequate? We have a different threshold and cutoff than what is considered normal for the general population. And if that is okay too, then we move forward and assume it may be secondary to dopamine dysregulation, and then we talk about actual medications for restless legs.
Something I wanted to mention is that we're talking about restless legs in adults, and in children it's more of a challenge to distinguish their symptoms. They usually ask their parents to please rub their legs at night, or they say they just feel like kicking. So if parents hear that complaint, or they see their child somewhat restless on a car ride and just kicking or moving their legs, there is a chance they may have restless legs. I would highly advise all the parents out there to please talk about that with their pediatrician, or just come to the sleep clinic.
It sounds like, as with everything with the human body, it's very interconnected. Part of that process is making sure it's not a secondary effect of sleep apnea or some other sleep disorder. But if someone is dealing with restless leg syndrome, what are some of the other ramifications? Obviously you can't sleep as peacefully as you normally would, but what else are you seeing in your patients that makes you say, if we resolve or help control your restless legs, you will see benefits in these other areas as well?
I guess I would say the interrupted sleep is probably one of the biggest things. Maybe we've treated their sleep apnea and they're still just excessively sleepy.
Yes, that is one of the most common causes of excessive daytime sleepiness even after having adequately treated obstructive sleep apnea, because of that sleep fragmentation Jessica was mentioning. And you can see it pretty clearly when you do their sleep study. The other consequence of untreated restless leg syndrome comes from a cardiovascular perspective, because fragmented sleep can lead to cardiovascular consequences such as high blood pressure and some types of arrhythmias. And in children in particular, it has been associated with ADHD. There's a bidirectional relationship between restless leg syndrome and ADHD, so you would be in a better position to address the patient's ADHD if you also treat their restless legs. And the opposite is true too.
Is this something where patients always come in for a sleep study? How often would someone go in for one?
I would say most of the time we do need a sleep study. It's just pretty challenging to diagnose a patient with any other type of sleep disorder until we rule out sleep-disordered breathing, and for that we would need a sleep study to actually acquire that data. However, sometimes we may feel comfortable moving forward with a home sleep study versus an in-lab sleep study. It would always depend on the patient's clinical presentation, other health conditions they may be dealing with, or the types of medications they are taking at that time. But yes, usually we do sleep studies rather often, just to ensure that's not the main problem.
I know this is a little bit off topic, but I like to think about sleep-disordered breathing the way we thought about syphilis in medical school. Syphilis can mimic every other health condition. So when you think about sleep apnea in that way, you're like, okay, I really need to pay attention to this, and make sure my patient doesn't have any type of sleep-disordered breathing before I move forward with treating whatever else is there, whether that's insomnia or restless legs or excessive daytime sleepiness.
Because the effects of that follow us after we get out of bed, right? It might be a mood disorder, anxiety, or just being really sleepy throughout the day beyond what's normal. So once you do diagnose, let's talk about treatment. It seems like it's a combination of medication and maybe lifestyle changes. What does that conversation look like?
So the first thing, like Dr. Fernandez Aristy mentioned, is we always check iron levels. Restless leg syndrome is often an iron deficiency of the brain. So we want to make sure we're not missing that. We'll usually get a fasting iron panel. We want to look at not just ferritin, because that's an acute phase reactant, but we also check iron and total iron binding capacity. And if their iron to total iron binding capacity ratio is less than twenty percent, we do give them an iron supplement. And then this is the big thing that has changed in the guidelines. In the past, our first-line treatment for restless leg syndrome was dopamine agonists, so that would be pramipexole and ropinirole. In more recent years, they're finding that over time these are causing augmentation. Augmentation is a gradual worsening of the restless leg syndrome symptoms in intensity and duration the longer you've been on the medication.
Could you talk about the relationship between dopamine and restless leg syndrome for the everyday person?
Sure. So we have certain neurotransmitters that promote wakefulness, including acetylcholine, serotonin, norepinephrine, dopamine, histamine, and orexin. Dopamine plays a significant role in restless legs because, even though we don't fully understand the mechanism, we know there is a dysregulation in dopamine, and that may be secondary to the fact that we're probably missing some iron, because you need iron to form dopamine when we're talking about biochemistry and chemical structures. So if you have a dopamine dysregulation, meaning you have an adequate amount of dopamine in your system but it's not being appropriately perceived by your body, then these medications, the dopamine agonists, were effective in helping patients control their need to move their legs. However, over time we noticed that patients needed higher doses of that dopaminergic medication. And eventually, like Jessica was explaining, they would experience worsening symptoms. Their symptoms would start earlier in the day. They were probably just getting restless leg syndrome in the evenings because of how the condition works, but now they are experiencing restless leg symptoms at noon. So they need to take more doses of their medication. And maybe that's not enough. Now they need higher doses too. And the problem just keeps getting worse over time. The other problem with the dopamine agonist medications is that we saw a lot of impulse control behaviors and problems. From my clinical experience, I've had patients gamble away their homes, everything they owned. This is not necessarily here in town, this is from my time on the East Coast. I've had patients that have lost their partners because of that sense of impulsivity. Hypersexuality is one of the complaints people come in with. They're finding themselves in extramarital relationships and they don't know why. When we try to find what has changed, it's the medication they're taking. You taper the patient off the medication, which is pretty challenging, and then you start noticing some improvement.
Yes. But augmentation is a big problem. And like Dr. Fernandez Aristy was mentioning, that used to be the first treatment modality. In recent years, I believe since 2022 or 2023, the guidelines have changed. And officially this year in January, I believe, is when the written guidelines were released stating that dopamine agonists are no longer our recommended first-line treatment. We check ferritin and iron first, as Jessica was explaining, and then we move on to consider other options, including the role of dopamine agonists.
And in the bigger picture, what would you tell your patient while you're trying different methods? Are there lifestyle changes that you encourage them to make as well, that you've seen firsthand improvements from?
Yes. I think that regular exercise can be helpful. Having a routine activity and a routine bedtime schedule. Avoiding things like alcohol in the evenings. Caffeine can exacerbate symptoms. Massage can be helpful. Warm baths and warm showers can help alleviate symptoms. And then other exacerbating factors would be diphenhydramine. Are they taking Tylenol PM? Diphenhydramine is well known to exacerbate those symptoms.
And I think that's a pretty important point, because oftentimes due to the restless leg syndrome, patients may experience a lot of sleep fragmentation, and they start to look for over-the-counter sleep aids. Most of them contain some form of an antihistamine medication, especially the first-generation ones, which do cross the blood-brain barrier. That gives the sedating effect the patient is looking for, but at the same time promotes more restless legs. So if you have restless leg syndrome, I think it would be ideal to stay away from anything that says PM.
Yes.
And I could see how you would reach for that. Because we're also talking about something that I would say is pretty emotional. Everyone needs to sleep, right? There are only a few things that all of us need every single day, and sleep is one of those things. Could you touch on maybe the emotional side that you've seen from your patients as well? You want to go to sleep, but your legs have other plans, and that causes that fractured sleep. What have you guys seen?
It's significant. I've seen patients who have developed augmentation and we're trying to wean them off their medications. I've heard people use the words homicidal or suicidal to describe how severe those symptoms are, and that they're not just at night anymore but experiencing them during the day. So it's really, really important that we manage those symptoms well.
And I've had the same experiences, especially with refractory restless leg syndrome, meaning it doesn't necessarily respond to the first treatment options you're trying to implement. Like Jessica was saying, I've had patients struggling with depression. I've had patients in a mental state where they don't feel they want to keep being on earth, just because of how challenging it is to deal with this condition. However, oftentimes the patients that end up having refractory RLS have an underlying sleep-breathing disorder that is not being adequately addressed. Therefore, even though you use all the right medications, until you tackle that portion of the equation, you would still struggle with it. So it can be quite challenging mentally, physically, and emotionally, not only for the patient but for their family too. It's very sad to see your partner or loved one struggling. People that are dealing with a health condition that is not necessarily noticeable to the naked eye undergo a lot of emotional and mental hurdles. And even though their partners or loved ones want to be empathetic, at times that takes a toll on them as well. Their expression of that frustration may come out toward their relatives. So it can really fracture personal relationships too. There are a lot of potential ramifications to untreated or inadequately treated restless leg syndrome.
I could see that. We all talk about snoring, and we see more commercials for sleep apnea. But maybe RLS is one of those things that's not as commonly discussed, even though it's very common. I'm not going to say it's normal, but it's common. And if someone's listening right now and they're putting the pieces together, realizing this might be what they're dealing with, what advice do you have for them? What are the first steps?
Talk to your doctor.
Yes. Talk to your healthcare provider. Please do not let them put you on a dopamine agonist, such as ropinirole or pramipexole, as a first-line agent. Make sure they check your ferritin levels. Make sure that when your doctor orders that blood test, you are in a fasting state. Make sure you have avoided red meat products for at least twenty-four hours prior to that blood draw. And something that Jessica always does is ask patients to hold their iron supplements for at least three days prior to the blood draw as well.
That's good to know. Those are the tools we need when we come in to see you. We don't have the same language and tools that you do, so any help is helpful when you're dealing with something like this.
Yes. And we do have a newer treatment modality for restless leg syndrome, which is called a bilateral peroneal nerve stimulator. It's a newer option for selected patients. There is a list of contraindications, but talk about it with your doctor if you choose not to pursue a pharmacological option. And it's nothing implanted in your body. It's something you take off every day. No surgery or downtime needed.
There is hope. And I think it's incredible to hear that even just in the past couple of years, more pathways have opened up and the ongoing research gives people hope. So thank you so much, Jessica and Dr. Fernandez Aristy, for coming in and talking about restless leg syndrome. Hopefully someone out there is listening right now, and maybe we'll see them in your office later.
We look forward to seeing them if need be.
Thank you, thank you, thank you.