Communication challenges can complicate the diagnosis of RLS. Sleep experts navigate these complexities from childhood to senior years, using customized questions and strategies.

By Alyx Arnett

Clinicians must navigate varied scenarios to diagnose restless legs syndrome (RLS), from children who can’t articulate their feelings to middle-aged adults who find their symptoms so strange they won’t bring them up and older adults whose nighttime agitation is unknowingly related to RLS.

“When you have communication problems like that, it’s difficult because this is diagnosed completely on the interview with the patient and them communicating their symptoms,” says Mark Buchfuhrer, MD, a sleep specialist at Stanford Medicine. 

The International Restless Legs Syndrome Study Group (IRLSSG) diagnostic criteria is the most commonly used tool for diagnosing RLS.1 It consists of five key features: an urge to move the legs usually accompanied by uncomfortable sensations in the legs, the symptoms begin or worsen during periods of rest or inactivity, the symptoms are partially or completely relieved by movement, the symptoms are worse in the evening or night, and another condition can’t explain them. 

Diagnosing RLS is fairly straightforward when it’s clear patients meet the criteria, says Andy Berkowski, MD, a neurologist specializing in sleep medicine who practices independently at ReLACS Health. However, communication challenges can hinder a timely diagnosis. One survey revealed that half of patients faced a seven-year delay from first symptoms to diagnosis.2

Through nuanced approaches, effective communication can bridge the gaps in diagnosing RLS in different patient populations. 

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Diagnosing RLS in Children Under 6 | Diagnosing RLS in Children 6-12 | Diagnosing RLS in Children 13-17 | Diagnosing RLS in Adults 18-65 | Diagnosing RLS in Adults Over 65

Diagnosing RLS in Children Under 6

Parental observations and familial patterns can provide insights into diagnosing RLS in this age group, as verbal communication about symptoms is often limited. Photo 204928791 © Nikita Kozachevskyi | Dreamstime.com

Young children may not have the vocabulary to communicate their symptoms. Observations from parents become key, says Shalini Paruthi, MD, medical co-director of the St. Luke’s Sleep Medicine and Research Center. 

Parents may first notice signs during bedtime routines. Paruthi has had parents notice their child wiggling out of their arms during cuddling or reading at night, or getting out of bed to run around. Parents also have described their child walking repeatedly around the inside edge of the crib. “You have to watch what your child is physically trying to clue you into sometimes,” she says, adding that children may also hit or rub their legs.   

Family history of RLS also can offer clues, says Buchfuhrer, who has diagnosed children as young as age 3. In the cases he’s had, it was easier to diagnose because there were two generations with RLS, the parents and the grandparents. They noticed the child couldn’t lie still in the crib and was moving around frequently, “which many kids do, but they kept looking and were concerned because they had it themselves,” he says.

Because family members may not have been diagnosed with RLS but have experienced it, Paruthi says to ask about family history in a more general sense, inquiring whether close relatives have had “uncomfortable leg sensations” at night or even “growing pains,” as they can be a mimic. One study found that 10 of 11 children with growing pains met the clinical criteria for RLS. In four of eight families of these 10 children, one parent had RLS.3

Frequent periodic limb movements during sleep (PLMS)—more than five per hour—may also predict RLS, though polysomnography may not be easily accessible, and the night-to-night variability of PLMS can complicate the assessment. Jeffrey S. Durmer, MD, PhD, chief medical officer of Absolute Rest, a sleep coaching service for athletes, and RLS Foundation board member, says motor symptoms tend to occur years before the RLS sensory symptoms in children.

Parental history of RLS has been found in 53% of pediatric RLS cases and 52% of pediatric PLMS cases.4

Ask the parent: 

  • Have you noticed your child becoming unusually restless or getting out of bed to run around during bedtime routines?
  • Has anyone in the family had uncomfortable feelings in their legs that are worse at night, make it hard for them to fall asleep, and get better with movement?

Diagnosing RLS in Children 6-12

Communication strategies like using simple language and offering multiple-choice questions can aid in diagnosing RLS in older children. Photo 68483961 © Golyak | Dreamstime.com

RLS is estimated to affect 2-4% of school-aged children and adolescents,1 but it’s believed to be underdiagnosed as even older children may not communicate their symptoms clearly.5 

However, IRLSSG guidance emphasizes that symptoms should be articulated in the child’s own words. According to Paruthi, not many children can do that. “We know that 2% of kids will be able to very clearly tell you they get this weird feeling in their legs or have this urge to move, and it’s worse at night, better if they’re walking or moving, and worse if they lie still,’” she says.  

But for most children, a more creative approach may be required. This involves using familiar language and simpler questions, such as, “Do your legs bother you?” and “Do they bother you at night?” 

For Paruthi, most children with RLS come into the sleep clinic with complaints of trouble falling asleep. Sleep disturbance is significantly more common in children and adolescents with RLS.6 “That’s where it’s important to figure out whether this could be restless legs keeping them from falling asleep,” she says. She’ll ask the child to tell her what’s happening when they’re lying in bed trying to fall asleep. “Sometimes they don’t know what to say, so I’ll say, ‘Does anything hurt? Does your head hurt? Tummy hurt? Leg hurt?’ Sometimes it gets them thinking,” Paruthi says. 

Even younger children may be able to respond to multiple-choice questions. Paruthi may ask, “Do your feet or legs ever feel funny?’ If they say yes, she offers multiple-choice answers: “Does it happen in the morning, afternoon, or night?” She says, “Sometimes kids won’t be able to articulate it as an answer to an open-ended question, but they might be able to still provide really important information if you phrase it as a multiple-choice question.” 

Recognizing the language children use to describe RLS is also important. “If they do describe it, it might be like bugs crawling in their legs. They might describe it as pain because that’s the closest adjective they may know,” says Berkowski. Durmer has heard it described as “wiggly legs,” “ant bites,” and “Coca-Cola bubbles.” 

For children who are nonverbal or have trouble articulating their symptoms, ask them to draw what they’re feeling, says Berkowski. “Drawing provides children an avenue to share what RLS feels like to them and can aid health care providers in diagnosis,” he says.

Ask the child: 

  • Do your feet or legs ever feel funny? If yes, ask: Does it happen in the morning, afternoon, or night?
  • Can you draw what your legs feel like?

Diagnosing RLS in Children Ages 13-17

Teens’ ability to better articulate symptoms simplifies diagnosing RLS, while observable signs like difficulties in school, mood changes, and behaviors possibly mistaken for ADHD provide additional clues. Photo 99175455 © Antonio Guillem | Dreamstime.com

Diagnosing RLS in teens becomes more direct due to their increased ability to communicate discomfort and symptoms. 

There may also be more indicators, such as sleep difficulties and psychosocial distress.7 “They come in with school disruption or problems with getting homework done, often because they can’t sit still. They often report mood problems like frustration or annoyance,” says Durmer. 

Paruthi says children may have trouble waking up in time for school or staying awake while at school. They may be more irritable. “Kids, just like any of us, if they don’t get a good night’s sleep, their mood is really affected,” she says. 

RLS also may present as fidgeting, nervousness, or attention deficit hyperactivity disorder (ADHD). ADHD can be mistaken for RLS due, for instance, to the need to move around, Berkowski says. But links also have been found between the two, with ADHD being more prevalent in children with RLS.8 “A lot of the kids get diagnosed with ADHD, which they may have anyway because there is a very strong association for reasons we don’t know,” says Buchfuhrer.

Berkowski says children with ADHD should be screened for RLS. “Because children with ADHD are put on all these drugs, you really want to screen to determine, ‘Can they not pay attention, or are they restless and can’t sit in the chair because their legs are uncomfortable?’” says Berkowski. 

UpToDate guidelines recommend evaluating the iron status of children with suspected or established RLS. “It’s important to have a very low threshold to check the ferritin and the iron panel because iron is a very effective treatment for children when they have restless legs,” says Paruthi. 

If RLS is suspected, Paruthi says checking these levels can help determine whether to treat the symptoms as RLS, “even if they haven’t articulated every one of the criteria.” 

Ask the child: 

  • Do you have trouble falling asleep because your legs feel uncomfortable at night?

Ask the parent: 

  • Have your child’s iron levels been checked? 

Diagnosing RLS in Adults Ages 18-65

Adults often underreport RLS symptoms, hindering diagnosis and understanding of the condition’s serious implications and prevalence. Photo 283564000 © Aaron Amat | Dreamstime.com

A challenge often arises from adults not mentioning their RLS symptoms because they believe the symptoms are universal, trivial, or embarrassing.

Buchfuhrer says patients often assume that most people experience RLS symptoms and dismiss them until they become exceedingly disruptive. If they do bring up their symptoms, it’s often in primary care, and primary care physicians often don’t understand or have the training to know the next step, he says.

Others may think it’s trivial. “You see lots of jokes about restless legs. I’ve collected cartoon columns where restless legs are kind of made fun of,” Buchfuhrer says. “They don’t realize how disruptive it can be. When it gets more severe, people can lose many hours of sleep.”  

According to Durmer, many people are embarrassed about having RLS, when it’s actually fairly common, he points out—occurring in up to 10% of adults.6 He notes that people often perceive it as something they have to deal with or question its validity if they were to address it.

“They’re embarrassed about it because it’s not something like diabetes where you think it might kill you. ‘It’s just going to disturb my sleep,’ (they think). But it turns out, it’s probably going to also increase your risk for diseases that will kill you,” Durmer says. “In and of itself, RLS is not killing you every night. But it is causing sleep deprivation. It is increasing your chances for accidents. It is increasing your chances for hypertension, obesity, cardiovascular disease, cardiometabolic disease, and that’s something that is not well understood by doctors.”

When assessing patients with potential RLS-related sleep issues, Durmer refrains from immediately categorizing symptoms as part of a syndrome. Instead, he discusses typical symptoms without labeling them as such. For instance, he asks if they ever experience odd or unexplained sensations in the arms, legs, or other parts of the body while getting ready for bed or in the evening. 

This approach often leads patients to acknowledge these sensations without the stigma of a disorder, he says. 

He also considers familial patterns, suggesting that understanding and diagnosing RLS could benefit not just the patient but potentially other family members. “I can say to them, ‘Well, it runs in families. It may be something that you’re the first we’ve had a chance to figure this out in, and it might be of value to other people in your family,’” he says. 

Ask the patient: 

  • When preparing for bed, do you experience hard-to-explain sensations in your arms, legs, or elsewhere?
  • Has anyone in your family had difficulty falling asleep due to bothersome legs?

Diagnosing RLS in Adults Over 65

Diagnosing RLS in seniors is challenging due to comorbidities, medication interactions, and difficulties in communication, particularly in those with cognitive decline. Photo 117190096 © Geargodz | Dreamstime.com

RLS is even more common in adults over age 65, with an estimated prevalence of up to 35%.9 

It’s common for seniors to have both primary RLS—having a genetic origin—and secondary RLS—associated with medical conditions like iron deficiency, end-stage renal disease, uremia, and neuropathy.10

Medications, including antidepressants, can worsen RLS. Since older patients often take multiple medications, clinicians should review their drug regimen, says Chester Wu, MD, a psychiatrist and sleep specialist in Houston and medical reviewer with Rise Science, an energy and sleep tracker subscription app. Wu notes that higher rates of comorbidities in this demographic can also “confuse the clinical picture.” 

Conditions that mimic RLS, such as neuropathy, lower limb arthritis, and nighttime leg cramps, make it challenging for clinicians to distinguish between them. “The key is, with, for example, neuropathy, is it won’t get better when you move, and you don’t have the urge to move,”  says Buchfuhrer.

The diagnosis becomes particularly challenging in seniors with cognitive impairment or dementia, who may find it difficult to communicate their symptoms. For those with dementia, RLS may be a cause of nighttime agitation and sleep disturbance, according to a study led by principal investigator Kathy Richards, PhD, RN, FAASM.11

Richards, a member of the RLS Foundation’s scientific and medical advisory board, developed the Behavioral Indicators Test – Restless Legs, a validated tool for diagnosing RLS in people with dementia.12 Richards developed the tool after she and co-investigators showed that older adults with early to moderate dementia were unable to reliably answer an RLS diagnostic interview.13

The test entails having a person with dementia sit in a chair for approximately 20 minutes, during which a caretaker monitors for behaviors such as leg kicking, foot flexing, an inability to keep the hips still, and fidgeting, among others. This observation is ideally conducted between 5 pm and 9 pm.

Along with behavioral observation, the process incorporates reviewing six chart items, including a history of iron deficiency. This results in 14 diagnostic items—eight observed behaviors and six clinical indicators. While an attempt is made to ask the patient, or through a caregiver, about leg discomfort, this is often challenging. 

The tool was recently used in a randomized controlled trial involving 147 people with dementia, RLS, and nighttime agitation to determine whether treating RLS would improve nighttime agitation. Participants were assigned gabapentin enacarbil or a placebo. Richards and co-investigators found that there were significant improvements in nighttime agitation, as well as sleep, with RLS treatment

“Our results clearly show that RLS is an unrecognized and untreated cause for nighttime agitation,” says Richards. “It’s a shift from simply sedating people who are agitated to treating the cause of it.” The study will be presented at SLEEP 2024. 

While the Behavioral Indicators Test – Restless Legs is currently used in research, Richards says it’s applicable in broader settings.

Ask the patient: 

  • Do the sensations in your legs improve with movement, such as walking?

Ask the caregiver of a patient (if applicable): 

  • Have you observed behaviors such as leg kicking, foot flexing, or excessive fidgeting, especially in the evening?

References

  1. Picchietti DL, Bruni O, de Weerd A, et al. Pediatric restless legs syndrome diagnostic criteria: an update by the International Restless Legs Syndrome Study Group. Sleep Med. 2013;14(12):1253-9. 
  2. Cinatl C, Ondo W, Koo B, et al. RLS patient Odyssey Survey II. Sleep. 2022 June;(45)1:A241.
  3. Rajaram SS, Walters AS, England SJ, et al. Some children with growing pains may actually have restless legs syndrome. Sleep. 2004;27(4):767-73.
  4. Picchietti DL, Rajendran RR, Wilson MP, et al. Pediatric restless legs syndrome and periodic limb movement disorder: parent-child pairs. Sleep Med. 2009;10(8):925-31.
  5. Maheswaran M, Kushida CA. Restless legs syndrome in children. MedGenMed. 2006 June 20;8(2):79. 
  6. Picchietti D, Allen RP, Walters AS, et al. Restless legs syndrome: prevalence and impact in children and adolescents–the Peds REST study. Pediatrics. 2007;120(2):253-66. 
  7. Silva GE, Goodwin JL, Vana KD, et al. Restless legs syndrome, sleep, and quality of life among adolescents and young adults. J Clin Sleep Med. 2014 Jul 15;10(7):779-86. 
  8. Migueis DP, Lopes MC, Casella E, et al. Attention deficit hyperactivity disorder and restless leg syndrome across the lifespan: a systematic review and meta-analysis. Sleep Med Rev. 2023;69:101770.
  9. Milligan SA, Chesson AL. Restless legs syndrome in the older adult: diagnosis and management. Drugs Aging. 2002;19(10):741-51. 
  10. Oka Y, Ioue Y. Secondary restless legs syndrome. Brain Nerve. 2009;61(5):539-47.
  11. Richards KC, Allen RP, Morrison J, et al. Nighttime agitation in persons with dementia as a manifestation of restless legs syndrome. J Am Med Dir Assoc. 2021;22(7):1410-4. 
  12. Richards KC, Bost JE, Rogers VE, et al. Diagnostic accuracy of behavioral, activity, ferritin, and clinical indicators of restless legs syndrome. Sleep. 2015 Mar 1;38(3):371-80. 
  13. Richards K, Shue VM, Beck CK, et al. Restless legs syndrome risk factors, behaviors, and diagnoses in persons with early to moderate dementia and sleep disturbance. Behav Sleep Med. 2010;8(1):48-61. 

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