1. Rebecca Cunningham, OTD, OTR/L, MSCS MS Summit September 28, 2019
Occupational Therapy Interventions for Management of Stress and Fatigue in MS
Rebecca Cunningham, OTD, OTR/L, MSCS
MS Summit
September 28, 2019

2. Learning Objectives
Describe behavior-based interventions to address stress and fatigue symptoms in MS
Explain the impact of stress and fatigue symptoms on areas of occupational performance
Understand the role of occupational therapists in addressing stress and fatigue symptoms

3. Occupational Therapy Role

4. Occupational Performance Impacts
Functional impacts are going to vary based on severity of fatigue and stress symptom presentation in the individual
In reality, any daily activity (or in OT speak – any meaningful occupation) can be impacted by these symptoms
Number one cause of neurological disability in young adults
ADLs, IADLs, rest/sleep, work and education, community engagement/social participation, leisure/play

5. Lifestyle Redesign®
Process of acquiring health- promoting habits and routines in daily life
Goals:
Improve functional participation in occupations
Improve self-management of symptoms from chronic conditions
(Clark et al., 1997; Clark, et al., 2011; Jackson, et al., 1998; Mandel et al., 1999, Uyeshiro Simon & Collins, 2017)

6. Fatigue in MS

7. Fatigue Presentation in MS
Fatigue is a subjective lack of physical, cognitive, and/or emotional energy that is perceived by the individual to interfere with usual and desired activities
50% identify fatigue as their most challenging symptom to manage
Experienced by 75% to 90% of the MS population
Those who experience fatigue describe it as negatively impacting employment, quality of life, socialization, and typical daily activity engagement
Most individuals view fatigue as only physical in nature – need to expand our patients’ definition of fatigue to encompass cognitive and emotional fatigue
Especially as most individuals describe feeling more fatigued or “exhausted” in response to emotionally demanding activities
(Forwell, 2013)

8. Fatigue Types Primary fatigue (lassitude)
Experience is directly related to the MS disease process
Typically increases with heat and as the day progresses
Secondary fatigue
Experience is related to other influencing factors, including:
Depression
Sleep problems
Medication side effects
Deconditioning
Chronic stressors
Comorbid conditions
Mobility limitations
Cognitive deficits
ADDRESS BOTH
Rehab/remediate secondary fatigue factors – correct sleep disruption, exercise for deconditioning, etc.
Compensate/accommodate primary fatigue – activity pacing, energy conservation, energy optimization, cooling strategies, etc.
(Forwell, 2013)

9. Behavioral Interventions

10. Fatigue Management Interventions
Activity Pacing
Energy Conservation
Exercise
Body Temperature Control
Energy Optimization
Health Habits & Routines
Address Secondary Factors
Health Habits and Routines includes: eating small/frequent meals, prioritizing time for exercise, engaging in self-monitoring behaviors in order to modify activity participation or take breaks/intervene earlier
Body Temperature Control: cooling strategies – A/C, vests, cooling towels, etc.
Address Secondary Factors: sleep modifications, medication side effects, comorbid conditions, mobility limitations, etc.
(Asano, et al., 2015; Blikman, et al., 2013; Finlayson, et al., 2011; Khan, Amatya & Galea, 2014; Kos, et al., 2016; Thomas, et al., 2014)

11. Activity Pacing and Energy Conservation
Frequent breaks
Activity shifting
Activity simplification
Slower pace
Limit recognition and compliance
Energy Conservation
Activity modification
Seated positioning during activities
Restorative activity participation
Delegation
Modify environment
Energy Optimization
Schedule based on energy trends or patterns
Assessment of activity energy demands
Consider emotional, physical, cognitive demands
Spoon theory
Patients tend to be more amenable to making changes related to secondary fatigue factors, and have a harder time with primary fatigue management strategy implementation
Energy Conservation
Physical, mental, emotional
Save energy in some areas in order to spend energy in more important areas
Activity Pacing
Alternate between activity and rest
Increase overall activity strategically
Avoid “crash and burn”
Be able to do more over a longer period of time
(Asano, et al., 2015; Blikman, et al., 2013; Finlayson, et al., 2011; Forwell, 2013; Khan, Amatya & Galea, 2014; Kos, et al., 2016; Thomas, et al., 2014)

12. Perspective Shifting Thoughts Feelings Behaviors
If we do not challenge and attempt to shift the patient’s thoughts/perspectives about activity pacing and fatigue management, the follow through with strategy utilization will not occur
Many individuals with chronic fatigue view themselves as lazy if they don’t do as much as those without chronic fatigue
Feel the need to be as productive as others d/t societal expectations, familial expectations, personal expectations
Athlete mindset

13. Time Efficiency vs. Energy Efficiency
Time is constant factor
Energy is the limited resource
Energy efficiency as primary and time efficiency as secondary
This perspective helps to clarify energy optimization strategies
Our society is built around the idea of time efficiency – how can we be the most productive in the shortest amount of time, in order to maximize our output/productivity?
This is a hugely problematic mindset for an individual living with chronic fatigue as it leaves them susceptible to overexertion and sx exacerbation (e.g. paying for it)
Example: if we have 4 errands to run we’ll map out a route to complete them all in the shortest duration possible – can and likely will lead to overexertion in individuals with chronic fatigue
Need to shift mindset to that of energy efficiency, as those who have chronic fatigue, energy is the limited resource NOT time
The amount of time available each day is essentially the same

14. Reframing “Lazy” Lazy is being unwilling to work or use energy
In the realm of chronic fatigue “lazy” is a four letter word
Reality = Insufficient energy to work or engage in activities
Danger of “lazy” becoming internalized

15. Athlete Mindset – “Pushing”
Tendency and mindset to “push” through fatigue and pain
Leaves individuals susceptible to overexertion and symptom exacerbation
Need to learn to “push” within reason
If meaningful to “push,” plan accordingly
Planning for buffer time following meaningful activities that require “pushing” increases sense of control
Reduces risk and increases understanding of overexertion cycle
Need to start making connections re: behavioral choices and how they impact sx presentation

16. Stress in MS

17. Stress Presentation in MS
Depression
Progression of MS
Primary effects:
Symptom exacerbation
More lesions
Secondary effects:
Less time for healthy routines
Poor sleep
Changes in mood
Negative impact on cognitive function
Increased fatigue
Disruption of occupation/activity routines
Avoidance and/or procrastination
Addresses cognitive deficits, sleep, depression, and stress
(Lovera & Reza, 2013; Mohr, et al., 2012)

18. Stress Types Acute Stress Typically very brief
Most common and frequent presentation
Episodic Acute Stress
When take on too many tasks
Overwhelmed by demands
“Type A” and “Worrier” personalities
Chronic Stress
Long-term activation
Most harmful stress
Some individuals habituate to it
Acute vs. episodic acute vs. chronic
Acute stress can be positive or negative – thrill of skiing down a slope, car accident, deadline at work or school, etc.
Episodic acute stress – perpetual crisis mode; take on too much without sufficient organizational skills to manage the high level task demand
Chronic stress – occurs when a person is unable to see a way out of a particular situation, unrelenting demands/pressures for interminable periods of time – person gives up searching for solutions
(APA, 2019)

19. Behavioral Interventions

20. Stress Interventions Relaxation Techniques
Deep breathing
Meditation
Body scan
Progressive muscle relaxation (PMR)
Visualization and imagery
Cognitive Based Interventions
Positive psychology exercises
Gratitude
3 Good things
Cognitive reframing strategies
Communication of needs
Health-Promoting Coping
Physical activity
Time spent outdoors/in nature
Creative pursuits
Reading
Organizational and time mgmt. tools
(Bowling, 2013; Foley & Sarnoff, 2015; Kos, et al., 2016; Mongrain & Anselmo-Matthews, 2012; Seligman, 2011)

21. Perspective Shifting Thoughts Feelings Behaviors
If we do not challenge and attempt to shift the patient’s thoughts/perspectives about stress management, the follow through with strategy utilization will not occur

22. Stress Avoidance vs. Stress Management
Avoidance behaviors can be unhealthy
Need to learn self-management and coping skills for unavoidable situations
Positive vs. negative stress
Functional use of stress
Completely eliminating or ridding oneself of stress is NOT realistic
Can’t avoid all stress triggering situations, especially as our thoughts alone can trigger a stress response
Viewing it as a challenge as opposed to a threat
Not all stress is negative, we can functionally use it to improve performance, confidence, and self-efficacy in being able to navigate challenging situations
Examples: public speaking, taking a test, large deadline at work, making F/U healthcare appointments with providers, attending a support group, communicating our needs, etc.

23. Early Intervention Stress symptom/sign checklist
Identify all signs and then specify earliest recognizable
Intervene during early symptoms for greater self- management success

24. Communication of Needs
Important to use the accurate terms for symptom experience
Stress triggered by responses of friends and family to description of symptoms or lived experience
Identify individuals whose perspective/opinion is valued
Example: Fatigued vs. Tired
Friends, family, healthcare providers, employers, teachers, etc. can’t read our minds and often don’t have similar lived experience to where they understand what chronic fatigue feels like
We can’t expect them to understand it
Identify those individuals whose opinion matters to the patient and help them craft methods for communicating needs accurately so as not to diminish the experience; not every person will matter and/or we don’t have the emotional energy to engage in this description with every single person, so we need to help patients prioritize whom to communicate with
If we use the word tired, the person will reflect on their own experiences and make a comparison to try to connect with the patient
This can devalue the person’s lived experience with chronic fatigue – may feel resentful, frustrated, dissatisfied, or hurt
We need to use the correct terminology to reduce risk or likelihood of this scenario occurring

25. Summary Points
Beneficial to provide these “nugget” like pieces of education/mini- interventions to patients
Perspective and mindset matters in terms of follow through with recommendations
For those who have difficulty with follow through and need more support for compliance, refer to occupational therapy

26. Questions

27. References
American Psychological Association (2019). Stress: The different kinds of stress. Retrieved from:
Asano, M., Berg, E., Johnson, K., Turpin, M. & Finlayson, M.L. (2015). A scoping review of rehabilitation interventions that reduce fatigue among adults with multiple sclerosis. Disability and Rehabilitation, 37(9),
Blikman, L.J., Huisstede, B.M., Kooijmans, H., Stam, H.J., Bussman, J.B. & van Meeteren, J. (2013). Effectiveness of energy conservation treatment in reducing fatigue in multiple sclerosis: A systematic review and meta-analysis. Archives of Physical Medicine and Rehabilitation, 94:
Bowling, A.C. (2013). Complementary and alternative medicine: Practical considerations. In A.D. Rae-Grant, R.J. Fox & F. Bethoux (Eds.), Multiple sclerosis and related disorders: Clinical guide to diagnosis, medical management, and rehabilitation ( ). New York, NY: Demos Medical Publishing, LLC.
Clark, F., Azen, S.P., Zemke, R., Jackson, J., Carlson, M., Mandel, D., et al. (1997). Occupational therapy for independent-living older adults: A randomized controlled trial. Journal of the American Medical Association, 278,
Clark, F., Jackson, J., Carlson, M., Chou, C., Cherry, B., Jordan-Marssh, M., Azen, S. (2011). Effectiveness of a lifestyle intervention in promoting the well-being of independently living older people: results of the Well Elderly 2 Randomized Controlled Trial. Journal of Epidemiology in Community Health: doi: /jech
Finlayson, M., Preissner, K., Cho, C. & Plow, M. (2011). Randomized trial of a teleconference-delivered fatigue management program for people with multiple sclerosis. Multiple Sclerosis Journal, 17(9),
Finlayson, M., Preissner, K. Cho, C. (2012). Outcome moderators of a fatigue management program for people with multiple sclerosis. American Journal of Occupational Therapy, 66:
Foley, F. & Sarnoff, J. (2015). Taming stress in multiple sclerosis. Retrieved from:

28. References
Forwell, S. (2013). Fatigue in multiple sclerosis. In A.D. Rae-Grant, R.J. Fox & F. Bethoux (Eds.), Multiple sclerosis and related disorders: Clinical guide to diagnosis, medical management, and rehabilitation ( ). New York, NY: Demos Medical Publishing, LLC.
Jackson, J., Carlson, M., Mandel, D., Zemke, R., & Clark, F. (1998). Occupation in lifestyle redesign®: The Well Elderly Study occupational therapy program. American Journal of Occupational Therapy, 52,
Khan, F., Amatya, B., & Galea, M. (2014). Management of fatigue in persons with multiple sclerosis. Frontiers in Neurology,
Kos, D., Duportail, M., Meirte, J., Meeus, M., D’hooghe, M.B., Nagels, G…Nijs, J. (2016). The effectiveness of a self-management occupational therapy intervention on activity performance in individuals with multiple sclerosis-related fatigue: A randomized-controlled trial. International Journal of Rehabilitation Research, 39(3):
Lovera, J. & Reza, T. (2013). Stress in multiple sclerosis: Review of new developments and future directions. Curr Neurol Neurosci Repos, 13:
Mohr, D.C., Lovera, J., Brown, T., Cohen, B., Neylan, T., Henry, R…Pelletier, D. (2012). A randomized trial of stress management for the prevention of new brain lesions in MS. Neurology, 79:
Mongrain, M. & Anselmo-Matthews, T. (2012). Do Positive Psychology Exercises Work? A Replication of Seligman et al. Journal of Clinical Psychology, 68(4), p
Rensel M.R. (2013). General health and wellness in multiple sclerosis. In A.D. Rae-Grant, R.J. Fox & F. Bethoux (Eds.), Multiple sclerosis and related disorders: Clinical guide to diagnosis, medical management, and rehabilitation ( ). New York, NY: Demos Medical Publishing, LLC.
Seligman, M. (2011). Flourish: A visionary new understanding of happiness and well-being. New York: Free Press Print.
Thomas, P.W., Thomas, S., Kersten, P., Jones, R., Slingsby, V., Nock, A…Hillier, C. (2014). One year follow-up of a pragmatic multi-centre randomized controlled trial of a group-based fatigue management programme (FACETS) for people with multiple sclerosis. BioMed Central Neurology, 14: 109.
Uyeshiro Simon, A. & Collins, C.E.R. (2017). Lifestyle redesign(R) for chronic pain management: A retrospective clinical efficacy study. American Journal of Occupational Therapy, 71,

29. Image References