Fatigue in MS

1. Fatigue in MS

3. Fatigue in MS • Most common symptom (75 - 97%)1-5 • Reported by 40-60% as worst problem2 • Under recognised and often a ‘hidden’ symptom • Can occur at any stage of MS • Occasionally signals the onset of MS • Can be present at all times • Fatigue mechanism is poorly understood • Can relapse and remit 1. Krupp LB. CNS Drugs. 2003;225. 2. Fisk JC, et al. Can J Neurol Sci. 1994;21:9. 3. Freal JE, et al. Arch Phys Med Rehabil. 1984;65:135. 4. Krupp LB, et al. Arch Neurol. 1988;45:435. 5. Bergamaschi R, et al. Funct Neurology. 1997;12:247.

4. Fatigue in MS • Impacts on quality of life and functional ability • Adversely affects: • mood and self esteem • other symptoms and ability to cope • Ability to self manage symptoms • No clear connection between level of disability and fatigue • Can aggravate other MS symptoms

5. Lifestyle impact of fatigue • Activities of daily living • Driving • Major reason for unemployment • Difficulty with parenting • Relationships/sex life • Leisure and social activities • Prone to misunderstanding by others • Dependence on others • Cognitive abilities (capacity for memory, learning, attention and concentration)

6. Definitions • An overwhelming sense of tiredness, lack of energy and feeling of exhaustion • It does not correlate with • Age • Mood • Length of diagnosis • Does not always correlate with activity and sleep patterns Krupp, L 1996. Int MS Journal 3. 1. 9-17

7. Definitions • The sense of physical tiredness and lack of energy greater than expected for the degree of effort required for a usual task (1) • Freal, et al 1984, Archives of Physical Medicine and Rehabilitation. 65. 135-8 • A subjective lack of physical and/or mental energy that is perceived by the individual or his/her caregiver to interfere with usual or desired activities (2) • (Multiple Sclerosis Council for Clinical Practice 1998 PVA: Washington

8. Types of Fatigue

9. Fatigue types in MS • MS related fatigue • Primary: • related to disease process • Secondary: • not caused by the disease process • associated with disease related factors • ‘Normal’ activity related fatigue

10. Normal Fatigue MS Fatigue Sleep Deprivation Deconditioning PERSON WITH MS Medication Mood Diet Stress

11. Primary MS fatigue • Idiopathic lassitude fatigue • overwhelming sense of tiredness • Short circuiting fatigue • occurs in muscle groups following repetitive movements

12. Secondary fatigue Associated with disease related factors: • Depression or low mood • Sleep disturbance • Walking difficulties • Breathing difficulties • Deconditioning • Infection • Local environment • Medication

13. Cognitive Fatigue • Fatigue impacts upon cognitive functioning such as affecting thought processes, the ability to concentrate and take in new information. It also affects a persons coping ability Fisk et al 1994, Can J Neuol Sci. 21. 9-14.

14. Cognitive fatigue • Creates difficulties with • Learning new information • Attention and concentration span • Memory recall • Problem solving • Symptoms can worsen after mentally demanding exercise

15. Suggested Mechanism of Fatigue in MS

16. Suggested mechanism of fatigue • Reduction in total brain glucose metabolism particularly occurring in frontal cortex (Bakshi et al 1998.J Neuroimaging. 8. 228-234) • Neurophysiological studies have revealed dysfunction of the circuits between the thalamus, basal ganglia and frontal lobes (Comi and et al 2002 Expert Review of Neurotheraputics. 2. 6. 867-876)

17. Suggested mechanism of fatigue • Probably related to the underlying pathologic alterations in MS such as demyelination, inflammation and axonal injury (Bakshi 2003. Multiple Sclerosis. 9. 219-227) • Growing bank of evidence that alterations in immune system activity plays a part (Iriate et al 2000 Multiple Sclerosis. 5. 10-16) • The inability of a muscle or group of muscles to sustain the required or expected force (Bigland-Ritchie et al 1978 Clin Sci Mol Med 54. 609-14)

18. Fatigue amplified by: Anxiety Depression Tiredness Lack of energy Stress Depression amplified by: Fatigue Effect of fatigue is doubled if all factors present Psychological components

19. Heat Infection Relapse Poor Posture Poor sleep patterns(eg nocturia) Other medical conditions Pain Doing too much Taking insufficient breaks Medications Trigger factors

20. Medications and fatigue Medications that can cause fatigue as a side effect include: • Analgesics • Anti spasticity medication • Anti convulsants • Anti hypertensives • Anti depressants • Anti histamines • Anti inflammatories • Hormone replacements • Asthma medication

21. Fatigue Management in MS

22. Key points • Is different for everyone • It is a subjective experience • Assessment is essential • A challenge to manage • No clear management guidelines, although NICE guidelines do give general recommendations

23. Fatigue management principles • Education • Balance rest and exercise • Prioritise activities • Plan ahead • Work simplification • Healthy lifestyle

24. NICE recommendations • Each professional in contact with a person with MS should consider whether fatigue is a significant problem or a contributing factor to their current clinical state • If fatigue is disrupting the individuals life, then the following recommendations apply: • The presence of significant depression should be considered; if significant depression is present, it should be treated • Other factors causing fatigue, such as disrupted sleep, chronic pain and poor nutrition, should be identified and treated if possible NICE MS Guidelines. National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care 2004

25. NICE recommendations • Recommendations continued • Some medicines may exaggerate fatigue, thus any medications being taken should be reviewed • General advice and training on how to manage fatigue should be given, including encouragement to undertake aerobic exercise and to use energy conservations techniques • At present, no medicines targeted at fatigue should be used routinely, although people with fatigue should be information that a small clinical benefit might be gained from taking amantadine 200mg daily NICE MS Guidelines. National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care 2004

27. Fatigue management Approach needs to be: • Holistic • Individualised • Multidisciplinary Requires: • Active participation of individual, family, friends and colleagues • Change in thinking and behaviour

28. Fatigue management courses • Overall Aims: • Increase awareness of fatigue as a symptom of MS • Provide information on the 6 principles of fatigue management • Facilitate adaptation and reorganisation of lifestyle to overcome fatigue • Empower individuals to self manage their fatigue Ward and Winters 2003 Br J Nurs 12 (18) 1075-80

29. Energy conservation course • Experimental research study • 37 people with MS • 8 week course • Outcome measures: Fatigue Severity Score (FSS), Fatigue Impact Scale (FIS) • Results: All FIS scores were significantly reduced especially in those with mod-severe disability. These results lasted at least 8 weeks post completion of the course Vanage et al 2003 Am J Occ Ther 57 (3) 315-23

30. Measurement and Assessment

31. Assessments • Examine history • Fatigue questionnaires and diary • Examine sleep patterns / quality • Review diet and lifestyle • Excessive / unnecessary energy expenditure • Deconditioning- reduced mobility / exercise • Review medications

32. The Fatigue Severity Scale • My motivation is lower when I am fatigued • Exercise brings on fatigue • I am easily fatigued • Fatigue interferes with my physical functioning • Fatigue causes frequent problems for me • My fatigue prevents sustained physical functioning • Fatigue interferes with carrying out certain duties and responsibilities • Fatigue is among my three most disabling symptoms • Fatigue interferes with my work, family, or social life Patient rates each item from 1 (strongly disagree) to 7 (strongly agree) Score = mean rating across all 9 questions (i.e., 1  7) Higher score = worse fatigue Schwartz JE et al. J Psychosom Res 1993; 37: 753-762

33. Modified Fatigue Impact Scale (MFIS) Because of my fatigue during the past 4 weeks… • I have been less alert • I have had difficulty paying attention for long periods of time • I have been unable to think clearly • I have been clumsy and uncoordinated • I have been forgetful • I have had to pace myself in my physical activities • I have been less motivated to do anything that requires physical effort • I have been less motivated to participate in social activities • I have been limited in my ability to do things away from home • I have trouble maintaining physical effort for long periods • I have had difficulty making decisions • I have been less motivated to do anything that requires thinking • My muscles have felt weak • I have been physically uncomfortable • I have had trouble finishing tasks that require thinking

34. Modified Fatigue Impact Scale (MFIS) • I have had difficulty organizing my thoughts when doing things at home or at work • I have been less able to complete tasks that require physical effort • My thinking has been slowed down • I have had trouble concentrating • I have limited my physical activities • I have needed to rest more Patient rates each item from 0 (never) to 5 (always) • Scores can be broken down to assess impact of fatigue on psychosocial and cognitive behaviour Multiple Sclerosis Council for Clinical Practice Guidelines (1998) Fatigue and Multiple Sclerosis: evidenced-based management strategies for fatigue in multiple sclerosis. Multiple Sclerosis Council for Clinical Practice Guidelines.

35. The Epworth Sleepiness Scale Rate the likelihood of dozing in the following situations: • Sitting and reading • Watching TV • Sitting inactive in a public place (eg theatre or meeting) • Sitting as a passenger in a car for an hour without a break • Lying down to rest in the afternoon when circumstances permit • Sitting and talking to someone • Sitting quietly after lunch without alcohol • Sitting in a car while stopped for a few minutes in traffic Patient rates each item as 0 (would never doze) to 3 (high chance of dozing) ESS score is total score: 0  24 Higher score = more sleepiness Johns MW. Sleep 1991; 14(6): 540-545

37. Behaviour and Lifestyle

38. Education

39. Behavior and lifestyle Self care and awareness to avoid fatigue and reduce impact: • Efficient energy expenditure • Improved time management • Healthy Lifestyle (diet and exercise) • Mental attitude and coping techniques • Aids and devices

40. Analyse and modify home work leisure activities Efficient energy expenditure Requires • Pacing & planning • Prioritising • Help • Correct posture • Sitting often • Rest and recuperation

41. Energy effective expenditure • Principles and strategies • Conserve energy • Simplify work • Adapt environment and equipment • Posture • Recognise individual limits • Avoid exacerbating factors • Utilise support network • Use energy on chosen activities

42. Time management skills • Analyse how time is spent • Plan and set goals • Reduce time pressures • Identify time wasting activities • Identify activities to delegate • Re-allocate time

43. Record over a week Divide day into 15 minute intervals Enter details hourly Highlight low ebb and rest times Analyse and review Identify possible causes of low ebbs Prioritise activities Time analysis - logs

44. Exercise and activity • Develop weekly activity programme • Include suitable forms of exercise and activities • Adopt safe approaches to exercise • Monitor fatigue levels • Maintain levels • Exercise and activity benefits • Disability • Deconditioning • Sleep patterns • Psychological

45. Relaxation Types of relaxation Relaxation techniques Positive thinking Positive vs negative Goal setting Positive experiences Challenging negative thoughts Coping strategies

46. Aids and devices • Mobility aids • Crutches • Walking stick • Rolators • Wheelchair • Motorised scooters • Obtain disabled badge • Look at alternatives • home delivery • internet/catalogue shopping

47. Pharmacological

48. Wakefulness promotion • Modafinil • Amantadine • ‘Activating’ antidepressants

49. Amantadine • Oldest studied agent in MS related fatigue • Inexpensive • Documented improvement in about 1/3 of patients • Potential side effects include: • Common (5-10%) Nausea, light-headedness, insomnia • Less frequent (1% -5%) Irritability, depression, abnormal dreams, hallucinations, confusion, constipation, headache • Infrequent (<1%) Psychosis, urinary retention, corneal opacities • Recommended in the NICE Guidelines for MS

50. Amantadine-clinical trials conclusions • 4 clinical trials • 20-40% of mildly to moderately disabled MS patients show significant short term reductions in self reported fatigue • Amantadine is generally well tolerated • Benefits should be appreciated within a week • Possible loss of efficacy in long term use Murray TJ. Canadian Journal of Neurological Sciences1985;12:251–4. Sailer M, Heinze HJ, Schoenfeld MA et al. Pharmacopsychiatry 2000;33:28–37. Geisler MW, Sliwinski M, Coyle PK et al. Archives of Neurology 1996;53:185–8. Bass B, Weinshenker BG, Penman M et al. Neurology 1990;40(Suppl 1):261.