Experiences of sleep problems,subsequent daytime consequences,and self-care activities used to improve sleep among patients with restless legs syndrome: a qualitative content analysis

Introduction

Restless legs syndrome (RLS) is a prevalent neurological sensorimotor disorder characterised by symptoms such as uncomfortable feelings and pain in the legs, arms, and sometimes other body parts (Gossard et al., 2021). To obtain the diagnosis of RLS, five clinical criteria described by Allen et al. (2014) must be met (Table 1). Motor restlessness, a need to move due to unpleasant sensations in the legs, and worsening symptoms at rest, are typical signs that occur or worsen in the evening and at night. Therefore, during clinical assessments, sleep problems are described as a common consequence (Khachatryan et al., 2022). The variation in symptoms and disease severity between patients generally, but notably between the sexes, is significant (Holzknecht et al., 2020). For example, sensory symptoms are more common in women, whereas motor symptoms are more common in men (Holzknecht et al., 2020). These variances lead to different sleep problems and lower quality of life compared to control groups (Broström et al., 2024). A few studies have reported how patients describe their RLS symptoms (Holzknecht et al., 2022), and how RLS affects the life situation (Harrison et al., 2021) and the fulfilment of human needs (Odzakovic et al., 2024a), but none of these studies have focused on how the actual sleep situation is experienced.

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Table 1.

Five clinical criteria that form the basis of restless legs syndrome diagnosis (Allen et al. 2014).

Need to move the legs and/or arms, often accompanied by discomfort and pain.

The need to move begins or worsens with rest and/or inactivity.

The need to move is alleviated, in whole or in part, immediately when you get up and walk.

The need to move and the discomfort worsen during evenings and nights.

The aforementioned complaints cannot be explained by other causes such as oedema, cramp, or inappropriate lying or sitting position.

According to a recent systematic review and meta-analysis, the worldwide prevalence of RLS is 3% (Broström et al., 2023). The risk of becoming affected increases with age (Khachatryan et al., 2022), although young adults and children can have RLS. Moreover, RLS is a common complaint during pregnancy (Tuna Oran et al., 2021). Genetic causes of RLS have been described (Khachatryan et al., 2022), and iron deficiency in the brain may contribute to its development (Ferré et al., 2019). Secondary RLS can stem from underlying diseases such as kidney failure or deficiency diseases such as B12 and folate deficiencies (Liu et al., 2022). The choice of treatment is guided by the severity of symptoms (Mackie and Winkelman et al., 2015). Several drugs are available, for example, dopamine agonists, L-dopa, alpha-2-delta ligands, opioids or iron, depending on the severity of symptoms. In the case of worsening symptoms, iron levels, ferritin and transferrin saturation should be checked along with the medical history (Gossard et al., 2021; Silber et al., 2021; Winkelmann et al., 2025). For some, non-pharmacological treatment (e.g. regular physical exercise, stretching, acupuncture, acupressure, cognitive behavioural therapy (CBT), cooling of the legs, and various types of mental distraction) may be sufficient (Harrison et al., 2019). Recently, a validated instrument to measure self-care behaviours among patients with RLS has been developed (Odzakovic et al., 2024b), but further studies on the frequency and benefits of the included behaviours are needed.

On polysomnography recordings higher percentages of N1 (i.e. light sleep, brief transitional phase from wakefulness) sleep and lower percentages of N3 (i.e. deep sleep which occurs mostly during the first part of the night, where the body performs vital restoration and growth, and it is very difficult to wake someone) sleep have been reported in men (Holzknecht et al., 2022), which might be explained by higher number of periodic leg movements during sleep (Shin et al., 2016). Moreover, two recent meta-analyses have described increased sleep latency (i.e. time it takes for a person to transition from full wakefulness to the onset of sleep after going to bed), shorter total sleep time, increased sleep fragmentation and lower sleep efficiency in patients with RLS compared to healthy controls (Geng et al., 2022; Zhang et al., 2022). Questionnaire-based quantitative studies have also shown that insomnia symptoms and daytime sleepiness are more common in those with severe RLS symptoms than in those with milder symptoms (Broman et al., 2008; Enomoto et al., 2006). Furthermore, poor sleep is a common reason that patients with RLS seek medical attention (Holzknecht et al., 2020). It is well known, however, that objective and subjective measures of sleep quality are only weakly correlated (Kaplan et al., 2017), and sleep questionnaires typically do not target the main symptoms of RLS (Fulda et al., 2021). To better assess the sleep situation in patients with RLS and to provide better advice regarding sleep problems, it is essential to understand how the patients themselves experience their sleep situation, including the consequences of poor sleep and how activities, including self-care during the day and evening, might impact sleep. To this end, qualitative studies are needed, and results from such studies could improve the understanding of the sleep situation to increase support for patients in their daily lives. However, only a few qualitative studies have been performed on patients with RLS (Harrison et al., 2021; Odzakovic et al., 2024a), and none of them, as far as we know, have specifically explored the sleep situation, daytime consequences of poor sleep, and self-care activities used to improve sleep. Therefore, this study aimed to explore and describe how patients with RLS experience their sleep problems, the subsequent daytime consequences, and self-care activities used to improve sleep.

Methodology

Results

The characteristics of the sample are described in Table 2. The three categories were: suffering from RLS-related ailments affecting sleep, struggling with daytime consequences of poor sleep, and using self-care actions to improve sleep. Each category has three subcategories (Table 3). Quotations are presented to illustrate the categories and subcategories.

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Table 2.

Demographics and clinical characteristics of patients with restless legs syndrome (N = 28) interviewed in the study.

Variables	Value
Gender, female, n (%)	16 (57)
Age (years), mean (range)	67.6 (39–89)
Educational level, n (%)
9 years or below	3 (11)
12–13 years	11 (39)
University	14 (50)
Civil status, n (%)
Married/living together	20 (71)
Unmarried and living alone	3 (11)
Divorced/widower and living alone	5 (18)
Smoking, n (%)
Yes, n (%)	1 (4)
Alcohol, n (%)
Never uses alcohol	8 (29)
Uses alcohol at least once a month	9 (32)
Uses alcohol 2–3 times or more/week	11 (39)
Comorbidity, n (%)
Renal disease	0 (0)
Parkinson’s disease	0 (0)
Multiple sclerosis	0 (0)
Migraine	3 (11)
Iron deficiency	4 (14)
Pharmacological treatment, n (%)
Dopamine agonists	22 (80)
Opioids	8 (29)
α2δ Ligands	7 (25)
Dopa/derivates	5 (20)
Iron supplement	3 (11)

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Table 3.

Categories and subcategories according to Graneheim and Lundman model (2004) describing the sleep problems among patients with restless legs syndrome (N = 28).

Quotations	Subcategories	Categories
‘As soon as I sit down in the evening, tired, I can’t sit still. I have to walk back and forth’. (Man 65 years old)‘I wake up after 2 hours and then must get up and walk around. I must get up! I must do something because it’s impossible to lie in bed. And in the worst case, it might happen that I can’t fall asleep again until 4 a.m. and then, maybe, get an hour of sleep’. (Woman 79 years)‘At the primary care center, they prescribed sleeping pills and all sorts of things that only made it worse’. (Woman 68 years old)	Noticing initial symptoms in the evening Enduring stressful RLS symptoms at night Being concerned about not having a symptom-relieving treatment	Suffering from RLS-related ailments affecting sleep
‘I’ve probably never woken up refreshed and well-rested, so I miss that. I miss waking one morning and feeling, ‘Wow, now I’m going to seize the day or be able to do things energetically’, but I’m exhausted, and the days are long’. (Woman 35 years old)‘It feels like psychological torture. I have underestimated the effect, I must say, the lack of sleep and how it affects one’s psyche’. (Man 54 years old)‘If I’ve had a lot of crawling at night, I can be very tired. But they know about this at work, so if it’s been a bad night and I don’t have anything urgent, I can call in sick’. (Woman 51 years old)	Feeling excessive fatigue Feeling mental distress Managing social interactions	Struggling with daytime consequences of poor sleep
‘If I forget the pills, then my sleep is ruined. So, it is important to remember’.(Man 60 years old)‘I try to move and imagine that it might be good. Because it gets worse when I relax and rest and try to sleep like that’ (Woman 80 years old)‘I want to know what ongoing research and new medications are available. I have tried one or two patches, but it’s on my own initiative, my request; no doctor is addressing my situation’. (Women 62 years old)	Trusting in daily routines Benefiting from a variety of distractions strategies Actively seeking effective medical treatment	Using self-care actions to improve sleep

Discussion

This study, which aimed to explore and describe how patients with RLS experienced their sleep problems, is, to the best of our knowledge, the first of its kind. The results describe a wide variety of RLS-related ailments that disturbed sleep, how sleep itself was affected, but also various physiological, psychological, cognitive, behavioural, and social daytime consequences of poor sleep. We also identified several different self-care actions that were used to improve the sleep situation.

Not surprisingly, the situation was perceived as complex, which aligns with studies objectively recording sleep and that describe increased sleep latency, shorter total sleep time, increased sleep fragmentation, and lower sleep efficiency (Geng et al., 2022; Zhang et al., 2022). Several factors, either indirectly or directly related to the disease, contributed to the sleep problems. To begin with, typical RLS symptoms, such as a crawling sensation in the legs and pain, tense muscles, leg twitching, or general discomfort in the body were frequently described as disturbing sleep. Difficulties falling asleep were common, as was awakening after a few hours of sleep, which led to periods of wakefulness, in many cases for several hours. The waking time was spent walking, stamping, or doing various self-care activities to cope with the symptoms. In the present study, stressful feelings caused by RLS symptoms during the evening or experiences of more severe symptoms could be seen as precipitating biological and psychological factors for insomnia. The occurrence of insomnia among patients with severe RLS symptoms has been documented in several questionnaire studies (Broman et al., 2008; Enomoto et al., 2006). Even if RLS symptoms were known to increase in the evening and at night, the patients in the present study expressed that when symptoms occurred early in the evening, they often caused fear and severe stress as they were perceived as a sign that a night with poor sleep would follow. The unpredictability of the situation, described as a symptom-free or stable period suddenly being disrupted by severe symptoms, created additional stress, which led to difficulties falling asleep. It is understandable that the feeling of severe RLS-related symptoms (Holzknecht et al., 2020, 2022) was described as unbearable and as generating peaks of stress (Romero-Peralta et al., 2020). Moreover, RLS is a fluctuating long-term condition (Khachatryan et al., 2022) which, when symptoms are severe, creates barriers to satisfying several human needs (e.g. physiological needs to rest and sleep, social needs to participate in social events with friends [Odzakovic et al., 2024a]). This can lead to psychological consequences (e.g. depressive symptoms [Chenini et al., 2022]). The perception of the symptom burden (Salas and Kwan, 2012) is an important risk factor to consider as regards the development of sleep problems over time.

The 3P Disease Model (Wright et al., 2019) describes the interaction between various factors and how a general sleep problem can evolve from a premorbid, or acute, into an early chronic, or chronic, insomnia phase. This model categorises these factors into three groups: predisposing, precipitating, and perpetuating. Predisposing factors create vulnerability to sleep issues, while precipitating factors trigger disturbances in sleep. Perpetuating factors, on the other hand, maintain the condition. This framework illustrates how temporary sleep problems can develop into chronic insomnia (Wright et al., 2019). Ellis et al. (2021) have tested the model and believe that an essential aspect of the development of chronic insomnia is the person’s vulnerability to stressors. Although initiation or adaptation of treatment, or mitigating use of self-care activities, as described by the patients in the present study, may decrease the RLS symptoms to an acceptable level, the precipitating factors might come back because RLS symptoms vary, and treatment optimisation is complex (Silber et al., 2021). The situation can be perpetuated by new or increased symptoms or psychological or socio-environmental consequences of previously experienced symptoms. Consequently, when new RLS symptoms are experienced, the stress level increases and sleep problems will return above the insomnia threshold, which can create a chronic insomnia situation over time (Perlis et al., 2011). The existence of stress, including biological, psychological, and social aspects, is comprehensive when suffering from RLS. In the present study, mental distress (i.e. anxiety and depressive symptoms) and difficulties in social interactions (i.e. with family, friends and colleagues at work) were described as psychological and social consequences that could worsen sleep problems. Notably, Chenini et al. (2022) showed that the frequency of depressive symptoms was ten times higher in chronic diseases and that depression was more common among patients with RLS than expected. Several studies not conducted on patients with RLS specifically (Ashworth et al., 2015; Manber et al., 2016; Norell-Clarke et al., 2018) have shown that the risk of developing depression increases the more stress the person is exposed to, and that insomnia can lead to depression. It is also stated that insomnia has a more significant impact on depression than depression has on insomnia. As described in the present study, RLS symptoms might act as a constant underlying stressor and will keep the patient close to or above the threshold for insomnia (Wright et al., 2019). Detecting sleep problems and mental symptoms at an early stage is of the utmost importance to prevent and treat them, thus increasing the patient’s well-being. Nurses should adopt a holistic approach, as our findings indicate that several factors contribute to a vicious cycle. In this cycle, symptoms lead to psychological reactions such as fear and stress, which then result in disturbed sleep, daytime consequences, and social limitations. To break this cycle, nurses must combine their professional competence with interpersonal skills, dedication, clarity of values, and self-awareness. This combination will enable them to provide comprehensive, patient-centred care for patients with RLS (McCance and McCormack, 2025). However, future studies using quantitative methods should explore the relationships among RLS symptoms, stress, depression, and sleep, as well as the mediating roles of depression and stress in the association between RLS symptoms and sleep quality. CBT is an established treatment for insomnia (Riemann et al., 2023). Song et al. (2020) showed in a small-scale study that face-to-face CBT is a potential method to treat sleep problems in patients with RLS since insomnia symptoms decreased when it was used.

In the present study, the lack of sleep was described as causing several consequences in daily life. Notably, there was a feeling of excessive fatigue, which caused physical symptoms such as headaches, but also listlessness, resulting in a low desire to do things during the day. Specific studies on the social consequences of RLS-related fatigue are not to be found, but a recent systematic review (Torossian and Jacelon, 2021) showed that even if patients with RLS were not the focus, noteworthy associations existed among fatigue, comorbidities, depression and anxiety, as well as lack of well-being. Negative correlations between self-care, sleepiness and fatigue were also described. Moreover, poor sleep, low physical activity, educational status, and socioeconomic status were other consequences to consider as factors contributing to increased feelings of exhaustion, which limited social capacity. Our patients described that participation in social contexts often meant sacrifices, especially regarding late-night activities, or those involving alcohol, as sleep became negatively affected. A recent study (Odzakovic et al., 2024a) focusing on facilitators and barriers to the fulfilment of human needs when living with RLS, described losses of meaningful friendships and anxiety about the loss of social capacity. Moreover, Harrison et al. (2021) reported that social and intimate relationships are affected by the inability to sit and relax with people. Unfortunately, no studies have specifically investigated the partner perspective on sleep in an RLS context. Still, it is important to acknowledge that, in general, lack of sleep affects relationships negatively, as bed partners are often affected (Odzakovic et al., 2024a). In the present study, the patients were aware that their bed partner and other family members can be disturbed when RLS symptoms occurred at night. They acknowledged that this created a need for separate bedrooms to avoid disturbing the partner. Therefore, it is important that partners are included in the care and, if accompanying a patient to a clinical appointment, are asked about their own insomnia symptoms, and receive adequate information and support (Say et al., 2020). Another aspect of daily life to consider is work. Being late to work in the morning, difficulties concentrating and staying awake, as well as a need to rest during the day, occurred during periods with severe RLS symptoms. A need to change workplace because of tiredness, which affected work performance, was not always possible and was perceived as poor flexibility by the employer. However, tiredness and excessive daytime sleepiness can be important risk factors and increase the risks of work-related accidents, which makes them important aspects to be discussed during clinical appointments (Uehli et al., 2014).

Interestingly, the patients described using a variety of self-care behaviours in different situations. The effectiveness of the self-care behaviour was perceived to depend on the severity of the symptoms. Harrison et al. (2019) suggest that self-care, either with pharmacological treatment or when pharmacological treatment is not sufficient, can help patients with RLS manage symptoms and daily life. Exactly what self-care stands for in an RLS context can be debated, since only one study has specifically investigated the patient’s perspective of self-care (Odzakovic et al., 2025). Self-care in relation to chronic conditions has been defined as the capacity to attend to one’s well-being and health in everyday life through awareness, self-control and self-reliance for achieving, maintaining, or coping with the symptoms of a disease without continual support from a nurse (Jaarsma et al., 2017; Riegel et al., 2012). We found patients used sleep hygiene actions, including consistent routines and optimising their bedroom environment, alongside physical activities such as walking, stretching, or massage to manage evening and nighttime symptoms. They also employed distraction techniques, like listening to music or podcasts and doing mental tasks, to cope with sleep situation. Riegel et al. (2024) stress that self-care is essential in the management of a long-term illness and represents an active decision-making process that empowers individuals to effectively participate in their healthcare. Finding the right pharmacological treatment for RLS can be challenging (Allen et al., 2014), partly due to the risk that, despite an initial improvement in symptoms and sleep situation after taking medication, symptoms return and may worsen over time, so-called augmentation (Tachibana, 2015). Unfortunately, the cumulative impact of self-care interventions and pharmacological treatment, whether implemented individually or together, remains unclear due to limited research and the lack of disease-specific instruments in this area (Harrison et al., 2019). However, this knowledge gap can be filled since a recently developed and validated short (i.e. eight-item) disease-specific questionnaire, the RLS-Self-care Behaviour Questionnaire (RLS-ScBq), can be used to assess the use and benefit of self-care behaviours (Odzakovic et al., 2024b). Future studies using quantitative methods should examine the relationships between RLS symptoms, pharmacological treatment and the use and benefits of the self-care actions included in the RLS-ScBq among patients with various levels of disease severity. Specifically, the focus can also be on comparisons regarding how sociodemographic (e.g. age, gender, educational level and health literacy) and clinical factors (e.g. sleep quality, daytime sleepiness, depression and shared decision-making) differ between patients with high-versus-low use of self-care actions.

Conclusion

Despite RLS being a well-known neurological disease, there is still a knowledge gap that needs to be filled in terms of how patients experience their sleep situation. Several factors, indirectly or directly related to the disease, contributed to various daytime consequences. Different self-care actions were used to relieve symptoms. Nurses’ ought to use knowledge about precipitating factors, consequences and self-care activities to offer adequate information about the disease and potential care interventions and to refer the patient to the right level of care. There is a great need for research on how self-care activities can constitute a treatment strategy, either with pharmacological treatment or when pharmacological treatment is insufficient.

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