It’s Not Just Joint Pain: Sleep Issues in Rheumatic Diseases

Sleep, along with pain, affect, cognitive dysfunction, and energy deficit, are interconnected experiences for patients with chronic inflammatory arthritis. Improving one aspect can benefit the others, but it can also trigger symptoms. These challenges are often overlooked yet are among the most difficult to navigate for those living with rheumatic conditions. In fact, it wasn’t until after I presented at the ACR with Daniel that I asked my rheumatologist about sleep. What advice did I receive? Simply that it’s part of the disease. To me this shows a lack of understanding and information for rheumatic disease patients.

What is the impact of sleep disturbances on rheumatic diseases?

Dr. Ayman Askari – Rheumatologist: The impact is seriously negative. We do know from many studies, particularly in John Hopkins University, that lack of sleep can amplify pain response. I am not certain whether the lack of sleep can affect the inflammatory process or increase markers in the blood that causes inflammation . Lack of sleep increases  depression, as the relationship between  depression  and sleep is bidirectional. Pain due to Rheumatic illness will ultimately result in insomnia. 

Dr. Daniel Whibley – Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan: Sleep disturbances can have a negative impact on the physical, mental, emotional and social health of people living with rheumatic disease. These impacts may include: 

• Increased disease activity 
• Impaired immune function 
• Higher levels of pain and fatigue  
• Impaired daily functioning
• Lower levels of physical activity 
• Higher levels of anxious and depressive symptoms
• Lower mood 
• Poorer cognitive functioning
• And, unsurprisingly, given the overlap of the impacts listed above, overall a lower health-related quality of life.

What is the prevalence of sleep disturbances with rheumatic disease patients? Why is sleep so often overlooked and how can we change that?

Dr. Ayman Askari – Rheumatologist: I agree that sleep is often overlooked because rheumatologists, on the whole, are not trained to ask about sleep. Approximately 70% of patients with Rheumatic diseases report  disturbed sleep  at some stage. Rheumatologists focus on the symptoms of joints, swellings, inflammation and morning stiffness. They also focus on rashes and back pain, which is correct, these are all symptoms and signs related to rheumatic conditions.  I strongly believe that we should increase education/training related to  sleep, anxiety, and fibromyalgia in the medical profession as a whole and specifically  in rheumatology . This is the holistic approach 

Dr. Daniel Whibley – Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan: Some estimates: 

• Rheumatoid Arthritis: Up to 70%
• Osteoarthritis: ~80%
• Fibromyalgia: ~90%
• Systemic Lupus Erythematosus: ~60% 
• Ankylosing Spondylitis: 53% 
• Psoriatic Arthritis: 67-85%
• Sjögren syndrome: 75%

As Eileen described, from her experience, sleep disturbances can often be described as simply “part of the disease”. In older patients, age is often also cited as a reason for ‘unavoidable’ sleep disturbance. Although some aspects of sleep do indeed change with disease and age, sleep disturbances and disorders can be managed, including for people with increasing age or comorbid disease. So, they should not be overlooked. This is particularly important given what we know about associations between disturbed sleep and poor health outcomes, including those specific to people living with rheumatic diseases.

Reasons why sleep health may often be overlooked among health care providers and people with rheumatic diseases include:  

• A focus on management of the ‘primary’ disease
• Lack of awareness of the strong connection between sleep health and rheumatic disease outcomes
• Time constraints of medical consultations
• Underreporting of sleep disturbances due to assumptions that it’s a normal and unavoidable part of aging or disease
• Complexity of diagnosis of sleep disorders

What are some interventions to improve sleep from your profession’s expertise?

Dr. Ayman Askari – Rheumatologist: Sleep hygiene is very important.  I personally often mention it in my consultations and my letters, and you would be surprised how often people have no idea about sleeping in a dark ,cool room, with no mobile devices or television.  I am supportive of the use of tricyclic and SSRIs that have a sedative component  (Amitriptyline /Mirtazapine ) which regulate  sleep cycle.  I am also optimistic about the new group of drugs, the DORAs, (dual orexin receptor antagonists ) that may be an option for patients who do not tolerate other medications.

Dr. Daniel Whibley – Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan: Cognitive Behavioral Therapy for Insomnia (CBT-I): An effective, evidence-based non-pharmacological treatment for chronic insomnia. Active components include psychoeducation about sleep, stimulus control therapy (keeping the bed and the bedroom for sleep only), sleep restriction therapy (optimizing the amount of time spent in bed asleep), cognitive restructuring (addressing unhelpful thoughts or anxieties about sleep), and relaxation training. CBT-I can be effectively delivered in a range of different formats, including via online, automated programs.

Sleep Hygiene Education: This includes education about the benefits of maintaining a consistent sleep schedule, creating a comfortable sleep environment (cool, quiet and dark), avoiding caffeine (including chocolate) and heavy or spicy meals before bedtime, and limiting screen time close to bedtime (particularly with content that may be arousing and impact on sleepiness). Also, limit naps. If napping is necessary, it is best to keep them short (20 to 30 minutes) and earlier in the day to prevent interference with nighttime sleep.

Relaxation Techniques: Progressive muscle relaxation, deep breathing exercises, and mindfulness meditation may help reduce stress and improve sleep.

Behavioral Therapies: Biofeedback and light therapy may help to regulate sleep patterns and quality.

Exercise: Moving more in the day can help with sleep at night. It is important to be mindful to time exercise appropriately (preferably earlier in the day) and avoid physical stimulation too close to bedtime. 

Encourage monitoring of sleep patterns and links to rheumatic disease symptoms using a sleep diary: This may help recognize triggers that affect sleep and can be useful for both patients and healthcare providers to select appropriate interventions.

Sleep Medications: Short-term use of sleep medications such as benzodiazepines or non-benzodiazepine sleep aids (e.g., zolpidem, eszopiclone) may be useful when under supervision of a medical professional. These are not recommended for long-term use.

Medication review: Medications can help with pain relief (e.g., NSAIDs, acetaminophen) or help reduce inflammation (e.g., DMARDs). Reductions in pain or inflammation provided by medications may help reduce sleep disturbances. However, this is not always the case as some medications can be stimulating so best avoided close to bedtime. For example, some analgesics contain caffeine (e.g., Excedrin, an over-the-counter headache pain reliever) and the steroid prednisone may disrupt sleep – so may be better taken in the morning if that’s an option. Conversely, other medications have sedative properties and taking them close to bedtime may help with sleep. For example, antidepressants like amitriptyline have sedative properties. This may be an important topic to explore with your healthcare provider. 

Referral to a sleep specialist: If a specific sleep disorder like chronic insomnia disorder or obstructive sleep apnea is suspected, either by patient or clinician, this should be taken seriously, with onward referral to a specialist as appropriate. 

Cheryl Crow – Occupational Therapist and Person Living With a Rheumatic Disease: Occupational therapists can assess the sleep environment and suggest ways to improve it, assist the patient with developing better sleep hygiene, and help the patient initiate other behavioral strategies to improve sleep (such as exercise or mindfulness practices). 

How does your profession/research address sleep issues in rheumatic disease?

Dr. Ayman Askari – Rheumatologist: Unfortunately, very poorly.  We have very few centers to do sleep studies and the focus, as you probably may suspect, is on chronic obstructive pulmonary disease and sleep apnea and not on fibromyalgia and chronic pain.  There is an option for patients to go privately and have sleep assessment, usually by psychologists and psychiatrists in the UK.

Dr. Daniel Whibley – Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan: Alongside interventions to improve sleep (listed above), sleep issues may be indirectly addressed by effective management of symptoms of rheumatic diseases or promotion of lifestyle behaviors, for example: 

Pain Management: Heat/Cold therapy – May include a warm bath close to bedtime; electrical stimulation modalities (e.g., TENS).

Exercise prescription/promotion (aerobic exercise; strength training: stretching and flexibility exercise)

Activity Pacing: Support balance of daytime activity and rest and nighttime sleep to avoid overexertion or ‘boom or bust’ patterns.

Postural advice/education: For example, sleeping positions (advise on optimal sleeping positions to reduce strain on affected joints; encourage use of cushions and pillows for support during the night); Ergonomics: providing information/education on ergonomics and postural alignment during daytime activities to prevent pain exacerbation and irritability that may affect sleep.

How research can help: 

Observational research: Studies conducted at a population level to build the evidence for the impact of sleep health on a range of different outcomes important to people living with rheumatic diseases. Also, ‘micro-longitudinal’ studies that examine how sleep affects next day symptoms and important outcomes, such as social participation and quality of life.

Mechanistic studies: Studies of different types of sleep disruption in a lab environment to understand how different parts of the sleep cycle are related to the experiences of people with rheumatic diseases. These studies may also investigate pathways by which sleep impacts on symptoms, for example through changes in inflammatory pathways or other physiological systems like the endocannabinoid system. 

Intervention Studies: Clinical Trials: Conducting randomized controlled trials to test the efficacy of different interventions (e.g., sleep treatments (e.g., CBT-I); exercise programs, manual therapy, sleep hygiene education) on improving sleep in patients with rheumatic diseases.

Multimodal Approaches: Exploring the effectiveness of combining different therapeutic approaches, such as physiotherapy, cognitive-behavioral therapy (e.g., CBT-I and CBT-P), and pharmacological treatments, to address sleep disturbances – either delivered at the same time or in different sequences.

Educational Programs: Professional Training: Developing educational modules and continuing education courses for healthcare providers to enhance their understanding and scope of practice with respect to the management of sleep issues.

Patient Education: Creating and disseminating educational materials and programs for patients to raise awareness about the importance of sleep and strategies to improve it.

Development and integration of technology: Wearable Devices: Investigating the use of wearable technology (e.g., smart phones; apps; wearables; nearables) to monitor sleep patterns and potential for their use in interventions. However, beware ‘orthosomnia’ – a phenomenon where people may become reliant on reports from devices – which may or may not be accurate!). 

Digital Health Tools: Developing apps and online platforms that offer guided exercises, relaxation techniques, and sleep hygiene tips, as well as CBT-I content (or ACT-I content) specifically designed for individuals with rheumatic diseases.

Encouraging multidisciplinary collaboration:

Clinical Pathways: Developing plans for integrated care pathways that incorporate sleep assessment and management into routine rheumatology and physiotherapy/OT practice

Cristina Montoya – Registered Dietitian and Person Living With a Rheumatic Disease: Eating behaviors and nutrition quality are important but often overlooked factors affecting sleep quality. My role as a Dietitian is to identify and implement strategies to shift those eating behaviors. 

• Protein Intake: Inadequate protein intake is associated with difficulties falling asleep, whereas excessive protein intake is linked to difficulties maintaining sleep. Evening consumption of proteins, especially those rich in tryptophan or its precursors (e.g., poultry, fish, dairy, nuts, seeds), enhances serotonin production.
• Carbohydrates: Consumption of high-glycemic index foods (added sugars, refined grains) before bedtime can reduce melatonin secretion and delay circadian rhythms. Conversely, diets high in fiber are linked to deeper, more restorative sleep.
• Fats: High intake of saturated fats is associated with increased night awakenings and reduced slow-wave sleep. Omega-3-rich foods, such as fatty fish, positively influence serotonin secretion and sleep quality.
• Caffeine and Alcohol: Both substances negatively impact sleep. Consuming 400 mg of caffeine up to 6 hours before bedtime worsens sleep quality, shifting REM sleep to earlier in the night. Alcohol, especially in the evening, disrupts sleep continuity and quality.
• Micronutrients: Deficiencies in B vitamins and zinc can impair sleep quality. Supplementation has been shown to improve sleep outcomes.

Cheryl Crow – Occupational Therapist and Person Living With a Rheumatic Disease: An occupational therapist’s goal is to help you perform all the “jobs” of your daily life, and sleep is a big one! Sleep is considered an “area of occupation” according to the Occupational Therapy Practice Framework and is within our scope, yet often overlooked in favor of the joint manifestations of rheumatic disease. 

Every individual occupational therapy evaluation should include an assessment of sleep as part of the “occupational profile” (citation: AOTA American Occupational Therapy Association, also 2022 journal article about how OT practitioners address sleep). When the therapist and client collaborate on the treatment plan and goals, they can make goals around improving sleep hygiene, and the OT can suggest ways to improve sleep habits, routines and even the ergonomic set up of the sleep environment.

Sleep disruptions are common in rheumatic diseases, worsening symptoms like pain, fatigue, and emotional distress. Addressing sleep issues is crucial not only for improving comfort but also for managing the condition holistically and enhancing overall health outcomes.

References

Patient Perspectives