Sick and Tired: Understanding and Managing Sleep Difficulties in ...

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“In some ways it‟s more difficult because I‟m so tired I don‟t have the energy to cope with things, so I think they get me down a bit more.” [007 F53] Expecting a ‘bad night’ All of the participants interviewed had experienced disturbed sleep for a number of years and almost expected to sleep poorly, especially if they were experiencing high levels of pain and fatigue. “You almost know, that‟s psychological again, you almost know you‟ve had a fairly bad period you‟re not going to sleep well either or is it a fact?” [002 F61] Another participant elaborated: “I do all my strategies and they wouldn‟t work so going and making a mug of weak tea and coming back to bed and listening to the radio, something to warm myself for an hour or two and then eventually I might drop off again, but I might have been awake for two or three hours before I‟m ready to sleep again and then I‟d wake at the normal time anyway or I might wake u about half past five, so they‟d be like two blocks of sleep separated by a very long period of mental hyperactivity um, and this has been happening pretty much all the time, so it was getting to the point where I was actually getting quite anxious about going to sleep.” [008 F60] Theme Three. Coping with disturbed sleep In addition to coping with their symptoms of pain and fatigue, as outlined in previous qualitative studies in FMS (Lempp et al., 2009; Madden & Sim, 2006; Sim & Madden, 2008; Undeland & Malterud, 2007), participants talked specifically about how they managed their sleep difficulties during the night and the effects of poor sleep the following day. Searching for answers Little information had been given to participants from health professionals on how to manage their FMS or sleep difficulties effectively. As a result, participants appeared desperate to seek answers and described trying a whole range of strategies to improve their sleep quality: “I put ear plugs in and I find when I put ear plugs in I seem to sleep different... although I don‟t like things in my ears, if it means I‟m going to sleep a bit better, so whether that‟s about noise, although it‟s very quiet 119
where I live, so I don‟t know, I think I‟m just looking for answers.” [001 F59] ‘A juggling act’ In order to manage their symptoms and engage in everyday activities, participants described the need to plan and pace their activities, including rest periods or taking a daytime nap throughout the day: “Some days when I walk the dog, I‟ll come home and I‟ll go to bed for anything up to two hours, I will get up, I will get up for an hour or two and go back to bed and sleep for two or three hours. It all depends on the day, and also if you said to me, oh you‟re going out tonight i.e. my wife‟s going to the theatre tonight and if I was going, I‟d probably be going to bed now to make sure I‟m rested to cope. Life evolves around the fact that if I‟m not properly rested I won‟t enjoy it.” [005 M60] Participants reported that extended periods of inactivity increased levels of pain and muscle stiffness. Participants described the need to balance rest periods with the need to keep moving around. “That‟s the thing about fibromyalgia, you need to rest but at the same time you need to move… you kind of just want to stay in bed or whatever but you, you it‟s hard but you need to keep moving but at the same time you need to rest as well.” [016 F32] Although two participants avoided napping during the day, the other participants found that daytime naps helped to re-energise them; particularly if they were feeling fatigued in the afternoons, enabling them to carry on with daily activities. “I might have to go to bed for a couple of hours and then I‟ll be alright for the evening, because I know they advise you not to go to bed don‟t they, but I can‟t physically not and I find it makes me feel better actually if I do, so for me it works better, so you, I‟ve learnt to do what suits me, rather than what I‟m told to do you know, they say you muck up your body clock up if you sleep in the day but for me it doesn‟t work that way.” [014 F53] Interestingly, participants did not report that their sleep quality at night was affected by taking a daytime nap. “I‟d get home from work after having done only four hours, I‟d get home and I„ve slept in this chair for three hours, absolutely wiped out and then I‟d go to bed in the evening and fall asleep no problem and again it‟s just the staying asleep.” [013 F 51] 120
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Sick and Tired: Understanding and M
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Chapter Four. The Nature and Effect
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References ........................
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List of Tables Table 1. Participant
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Co-authored Works Although the stud
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Acknowledgments This thesis would n
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Intellectual Property Rights There
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Confidential Material No participan
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The role of sleep in FMS appears to
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little information was available as
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Psychophysiologic insomnia which is
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and are less able to inhibit the pa
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widely applied in clinical practice
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of fewer tender points; usually bet
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Current Management Strategies The t
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also likely to depend on a number o
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deep sleep (stages three and four)
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Although sleep moves through the sl
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Figure 3. The Integrative Model of
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However, conducting a blood test is
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As sleep is a complex process invol
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Sleep Diaries Sleep diaries are a k
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pain). Lentz et al (1999) revealed
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These results have also been suppor
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(McCracken & Iverson, 2002) which s
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Figure 4. Conceptual model of the d
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Clinical Implications Despite the p
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Chapter Three. Sleep in FMS As high
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& Penzien, 2003), although alpha wa
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pauses in breathing indicative of s
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Relationships between Sleep and Pai
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Managing Sleep Disturbance in FMS D
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may be possible to help patients im
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person to initiate an action (such
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and Nicassio et al (1995) only expl
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1) Poor sleep quality, defined by t
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elow 0.7 are acceptable. Therefore
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heart disease (Epstein et al., 1999
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In order to explore the links betwe
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questionnaire 78 (77.2%) of the par
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efficiency, suggesting that partici
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Older age and longer length of illn
Page 85 and 86: Table 2. Correlations between demog
Page 87 and 88: Logistic Regression As 97% of the s
Page 89 and 90: in bed, participants may have devel
Page 91 and 92: Relationship between Negative Affec
Page 93 and 94: participants, who may be less likel
Page 95 and 96: emotional problems, increased pain
Page 97 and 98: eactions are most likely to be detr
Page 99 and 100: It has been suggested that the auto
Page 101 and 102: For both groups, participants were
Page 103 and 104: with and without chronic medical co
Page 105 and 106: As previously described on page 61,
Page 107 and 108: Figure 7. Scree plot for the explor
Page 109 and 110: Figure 8. Scree plot for the explor
Page 111 and 112: Table 6. Participant characteristic
Page 113 and 114: Table 7. Measures of central tenden
Page 115 and 116: CON = DBAS-10 Dysfunctional beliefs
Page 117 and 118: The Exp (B) values revealed that hi
Page 119 and 120: has explored the use of napping on
Page 121 and 122: It became clear, through the analys
Page 123 and 124: interventions. With this in mind, t
Page 125 and 126: The philosophy of phenomenology was
Page 127 and 128: Methods Participants were given a w
Page 129 and 130: Table 11. Interview schedule for th
Page 131 and 132: Rigour The interview transcripts we
Page 133 and 134: “The main symptom is this overwhe
Page 135: Theme Two. Inter-relationship betwe
Page 139 and 140: Participants also described how the
Page 141 and 142: “XXXX (name of person) planned a
Page 143 and 144: A strong theme that emerged in this
Page 145 and 146: conducted at several time points, w
Page 147 and 148: Chapter Seven. Investigating the Ef
Page 149 and 150: activities because they no longer f
Page 151 and 152: Therefore as this was a feasibility
Page 153 and 154: Self-reported sleep quality was ass
Page 155 and 156: The progressive muscle relaxation (
Page 157 and 158: Exploring the baseline data, there
Page 159 and 160: Consequently, univariate analysis w
Page 161 and 162: There was no significant correlatio
Page 163 and 164: people with FMS (Perlis, Giles, Men
Page 165 and 166: The aim of this study was to explor
Page 167 and 168: observed in perceived overall sleep
Page 169 and 170: elaborated on in Chapter Six, which
Page 171 and 172: Four) revealed that global sleep qu
Page 173 and 174: Modifications to the Call-Schmidt a
Page 175 and 176: MBSR programme in people with FMS (
Page 177 and 178: diagnostic criteria for these sleep
Page 179 and 180: comprehensive measures to look at t
Page 181 and 182: References Abad, V. C., Sarinas, P.
Page 183 and 184: Brand, S., Gerber, M., Beck, J., Ha
Page 185 and 186: Crofford, L. J., & Demitrack, M. A.
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Goldenberg, D. L., Kaplan, K. H., N
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Johns, M. W. (2002). Sleep propensi
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Leung, Y. Y., Ho, K. W., Zhu, T. Y.
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Mease, P. J. (2005). Fibromyalgia s
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symptoms in healthy subjects; Corre
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approach with illustration to the h
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Thomas, E. N., & Blotman, F. (2010)
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Yunus, M. B., Masi, A. T., & Aldag,
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Appendices Appendix A: Search Strat
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Sleep and Fibromyalgia Syndrome Con
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190
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The following questions relate to y
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There are lots of ways to try to de
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42. I try hard to prevent other thi
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During the past month have you had
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Appendix E: Published paper of Stud
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202
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Sleep and Fibromyalgia Syndrome Con
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Appendix H: Participant Questionnai
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Below are 10 statements reflecting
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The questions in this scale ask you
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Appendix I. Published Paper for Stu
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Appendix K. Information Sheet and C
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Sleep in Fibromyalgia Syndrome Cons
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Appendix L: Letter of Ethical Appro
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Appendix M. Letter to GPs for Study
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What are the side effects of any tr
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Appendix O: Poster Advertising Stud
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Appendix Q: Participant Questionnai
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HAD Scale Read each item and place
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During the past month have you had
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Appendix R. Letter from Dr Mark Cro
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PUBLICATIONS Peer Reviewed Journal
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and panic-like episodes, Faculty of
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