Presented by Jennifer Mundt, PhD at the Scleroderma Patient Education Conference, hosted by the Scleroderma Foundation Greater Chicago Chapter on Saturday, October 12, 2019 in Chicago, IL.

1. Maintaining Better Sleep
and Mental Health
Presented to: Scleroderma Foundation Greater Chicago Chapter
Presented on: October 12, 2019
Presented by: Jennifer Mundt, PhD
Assistant Professor of Neurology

2. Outline
Background Information
• Biopsychosocial model
• Psychosocial impact of scleroderma
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• Maintaining sleep health
• Maintaining mental health
Practical Strategies and Tools

3. Impact of Scleroderma
What is the impact of scleroderma on…
• Your body?
• Your activities?
• Your work?
• Your relationships?
• Your mood?
• Your sleep?
• What does “health” mean?
• What does it mean to live well with a chronic illness?

4. Biopsychosocial Model
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Biological
SocialPsychological
Mood
Behavior
Thoughts
Personality
Coping style
Family
Culture
Society
Spirituality
Socioeconomic status
Health
Quality of Life

5. • “Because there is no cure for systemic sclerosis, improvingqualityof life is
an importantclinical challenge.”
• Panel of experts (including patients) identified important areas for research:
 Depression
 Fatigue
 Sleep
 Pain
 Itch
 Body image distress --> anxiety, social anxiety
 Sexual function
 Disease-related stress (healthcare costs, dependence on others, etc.)
Thombs et al. 2010

6. 2015 Review Paper

7. Mood and Body Image
• 23-56% have major depressive disorder at some point in their
lifetimes
• 64% have an anxiety disorder at some point in their lifetimes
 Generalized and social anxiety most common
 Unpredictable symptoms
 Uncertain future
 Worry about future and disease progression
 Worry about being disabled and dependent on others
• Body image distress
 Especially appearance of face/hands
 Can lead to social avoidance, anxiety, depression
 Distress may decline with age

8. Fatigue, Pain, and Itch
• 89% have fatigue at least some of the time
 81% said it has at least a moderate impact on daily function
• 60-83% prevalence of pain
 Widespread and localized
 Many underlying causes (GI, joints, skin, ulcers, etc.)
• 43% have itch on most days

9. Sexual Function
• Women with scleroderma are:
 Less likely to be sexually active
 More likely to have sexual impairment
• Factors include:
 Skin symptoms, GI symptoms, and breathing problems
 Severe Raynaud symptoms
 Vaginal pain
• Erectile dysfunction is common due to:
 Changes to arteries and tissues
• Factors include:
 Severe skin, muscular, or kidney involvement
 Diffuse disease

10. Sleep
Out of 69 different symptoms, patients rated sleep problems as:
• #5 most frequent
• #4 highest impact on daytime activities
Compared to general population, people with scleroderma have:
• Worse sleep quality
 68% had poor sleep quality (survey of 287 patients)
• More sleep disturbance
• Longer sleep latency and awakenings
• More daytime sleepiness
• Less rested upon awakening
Bassel et al. 2011; Frech et al. 2011; Horsley-Silva et al. 2019; Sariyildiz et al. 2013

11. Connections between Psychosocial Factors
Depression
Anxiety
Sleep
Fatigue Itch
Body
image
Sexual
function
Pain
Kwakkenbos et al. 2015; Racine et al. 2016; Sanders et al. 2018

12. Maintaining Sleep Health

13. Normal Sleep
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14. Normal Sleep
• Occasional difficulty falling/staying asleep
• Taking up to ~30 minutes to fall asleep
• Waking up a few times a night
• Sleep feels deeper at beginning of night
• Occasional upsetting dreams (nightmares)
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15. Possible Symptoms of a Sleep Disorder
You may need to see your PCP or a sleep specialist if you experience:
• Persistent difficulty sleeping
• Difficulty staying awake during the day
• Unrefreshing sleep
• Wake up snorting/gasping/choking
• Stop breathing in your sleep
• Snore loudly
• Restless legs at bedtime
• Move a lot in your sleep (kicking legs, thrashing, etc.)
• Walking, talking, or eating in your sleep
• Frequent nightmares
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16. Insomnia
• Difficulty falling or staying asleep
• Most common sleep disorder
 30% of the population have insomnia symptoms
 10% have symptoms severe enough to affect daytime function
• Occasional difficulty sleeping is normal
• Chronic insomnia:
 3+ times per week
 3+ months
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17. Maintaining Good Sleep
• Allow enough time for sleep
• Keep a consistent sleep schedule
• Allow time to wind down before bedtime
• Create a relaxing bedtime routine
• Avoid stimulating activities prior to bed
• Create a bedroom environment that is dark, quiet, cool, and
comfortable
• Avoid caffeine late in the day
• Avoid alcohol 3 hours before bedtime
• Avoid heavy meals close to bedtime
• Exercise regularly but not close to bedtime
• Limit naps to 20-30 minutes
• Avoid napping late in the day
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Preventative strategies foreveryone

18. Baseline Acute
Insomnia
Short-Term
Insomnia
Chronic
Insomnia
Predisposing Factors
Precipitating Factors
Perpetuating Factors
3 Ps Model of Chronic Insomnia
Insomnia
Threshold

19. Strategies for Insomnia
Cognitive Behavioral Therapy for Insomnia (CBT-I) is the gold standard
treatment for chronic insomnia
Sleep unfolds naturally on its own when the conditions are right:
1. It is the right time of day
2. You are sleepy enough
3. Nothing is interfering
- pain, GERD, itch, noise, caffeine, worry, racing thoughts, etc.
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20. Strategies for Insomnia
Sleep happens naturally when:
1. It is the right time of day
2. You are sleepy enough
• If possible, sleep when your body naturally prefers to sleep (i.e., your circadian
rhythm)
• Wake up at the same time every day no matter how well you slept
• Aim for a consistent bedtime, but don’t force it
• Go to bed only if sleepy
• Prior to bedtime, do calming/relaxing activities and have a wind down routine
to help yourself become ready for sleep
• Devote enough (but not too much) time to sleep
 E.g., a person who sleeps 7 hours per night should spend ~7.5 hours in bed
 Spending more time in bed will actually make sleep worse
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21. Strategies for Insomnia
Spending the right amount of time in bed helps maintain consolidated sleep
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asleep
9pm 7am
9pm 12am 7am
10 hours in bed
6 hours sleep
7 hours in bed
6 hours sleep
Delay bedtime

22. Strategies for Insomnia
Sleep happens naturally when:
3. Nothing is interfering
• Address sleep environmentfactors
 Temperature
 Light
 Noise
 Bed
• Address medical factors (if possible)
• Address psychological factors
 Ruminating or anxious thoughts
 Worry/frustration about not sleeping
 Mental health disorders (depression, PTSD, etc.)
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23. Strategies for Insomnia
Sleep happens naturally when:
3. Nothing is interfering
• Allow sleep to happen on its own. Don’t try to force it.
 Trying to sleep only makes it harder to sleep
 Distraction strategies can be helpful (music, reading, meditation,
podcasts, etc.)
• If you can’t sleep, get up and do somethingcalming in another room.
 Do something that is not stimulating but gets your mind off whatever is
keeping you awake
 Return to bed when sleepy
• Avoid looking at the clock at night
 Usually leads to frustration/worry, which makes it even harder to sleep
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24. Living a Full Life with
Chronic Illness

25. Identify your Values
You are not your illness
• What is important to you?
• What gives your life meaning?
Values are what give your life direction, goals are specific actions you
can take
Identify your values through self-reflection or a values inventory
Examples:Family Independence Relationships Responsibility Privacy
Health Nature Recreation Money Accuracy
Spirituality Self-expression Work Beauty Generosity
Service Achievement Knowledge Learning Kindness

26. Identify your Values
Set realistic, attainable goals
• How can you live in accord with your values, even with limitations
from a chronic illness?
• Create specific goals that are realistic for your current life
• Focus on what you can do
 Example: if your fatigue and pain make it hard to sit through an
entire baseball game, could you still go for half the game?

27. Daytime Activities and Structure
Having a moderate amount of structure helps you accomplish more and feel
better
Too busy stress, exhaustion, burnout, overwhelmed
Too much free time depression, rumination, isolation, inactivity
Have a routine or schedule that balances:
• Necessary activities
• Pleasurable activities
• Meaningful activities
• Restful periods
• Active periods
• Social time
• Alone time

28. Daytime Activities and Structure
• Conduct a time audit
 Track your activities for a week
 How does the way you spend your time match with your
values/goals?
What is the best balance for you?
What is currently missing or out of
balance, and how can you change that?

29. Social Support
Who do you get support from?
• Family
• Friends
• Neighbors
• Colleagues
• Faith community
• Online or in person support groups
• Healthcare team
• Mental health professionals
Do you need to practice more self-advocacy or assertiveness to get the support
you need? For example:
• Asking for accommodations at work
• Sharing information about scleroderma with loved ones
• Opening up to a close friend and letting them know how they can support you

30. Relaxation and Meditation
• Reduces tension, which can reduce pain
• Provides a break from pain, stress, etc.
• Can help you fall asleep by calming your body/mind
Can be used:
• During the day
• As part of wind down routine
• When awake in bed
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31. Mental Health Treatment
Common reasons to seek treatment:
• Stress
• Anxiety, worry, fear
• Depression, feeling down, decreased interest/motivation
• Irritability, anger
• Relationship concerns
• Adjusting to life changes
• Grief
• Trauma
• Bothersome thoughts
• Alcohol and substance use
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32. Mental Health Treatment
Treatment options:
• Psychotherapy and medications are both helpful
• Medications:
 Your primary care provider
 Psychiatrist
• Psychotherapy:
 Clinical psychologist
 Professional counselor
 Clinical social worker
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33. Resources

34. Insomnia Self-Management Resources
Digital CBT-I
Path to Better Sleep
veterantraining.va.gov/insomnia
Go! To Sleep ($40)
clevelandclinicwellness.com/Pages/
GoToSleep.htm
Sleep Ontario
sleepontario.com
CBT-I Coach app
Book CBT-I
Goodnight Mind
Quiet Your Mind and Get to Sleep
End the Insomnia Struggle
The Insomnia Workbook
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35. Informational Resources
Sleep
sleep.org
sleepfoundation.org
cdc.gov/sleep
behavioralsleep.org
sleepeducation.org
babysleep.com
Mental Health
apa.org
nami.org
nimh.nih.gov
suicidepreventionlifeline.org
Books:
newharbinger.com
guilford.com/browse/self-help-
general-interest
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36. Thank You