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Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Objective

To examine the nature of fatigue and how it is managed in daily life situations by individuals with ankylosing spondylitis (AS).

Methods

Twelve informants, 8 women and 4 men ages 30–59 years, who had lived with the diagnosis of AS for 6 months to 36 years, participated in qualitative interviews. They were asked to describe their daily life during good and bad days of AS, and to give examples of everyday situations where they experienced fatigue and what they did to recover. The text analysis consisted of identifying and coding meaningful statements, sorting the codes into categories, and condensing themes.

Results

Two separate conditions of fatigue were identified. One consisted of comprehensible, manageable tiredness related to a life strain that was exacerbated by having AS. Life strain–related tiredness indicated to the respondents that they should rest or temporarily slow down, and this protected them from overexertion. The other condition was an unfamiliar and unmanageable fatigue that was related to their illness. Illness-related fatigue was accompanied by unbearable pain, severe stiffness, and heaviness of the body that could not be alleviated by the individual. This condition was considered a sign of the onset or a flare up of inflammation.

Conclusion

Fatigue in the individuals with AS varied over time, and took the form of 2 different conditions. Life strain–related tiredness had a positive aspect in that it protected against overstrain and guided life strain regulation. In contrast, illness-related fatigue was nonpurposive for the individuals and seems to call for medical therapy.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Ankylosing spondylitis (AS) is a rheumatic inflammatory disease mainly affecting the spinal and axial joints, and is often accompanied by restricted mobility in these joints (1). More than half of the patients with AS report that fatigue is a major problem (2–4), and fatigue is used as a measure of disease activity (5). It has been suggested that fatigue in rheumatic inflammatory diseases is related to inflammation, but no associations have been found between fatigue and inflammatory markers in patients with AS (6, 7). However, fatigue is associated with pain (2, 6) and impaired mental (4, 6) and physical functioning (2, 4, 8). In the present study, it is assumed that fatigue results from interactive processes between the individual with AS, their daily activities and social life, and their illness and disability. In AS, both the illness (9) and its impact on life situations (10) may vary. This raises the question of how fatigue varies for the individual. Cross-sectional studies have demonstrated that fatigue severity varies considerably within patient groups with AS (2–4, 6–8, 11).

Fatigue is a universal and common experience both in sickness and health (12, 13). Some authors have applied tiredness to illuminate fatigue experienced by healthy individuals and fatigue experienced by sick people (14). Tiredness is considered a natural response to life strain, such as strenuous activities, busy day schedules, and emotional stress. It is usually not present all the time and varies according to the time of day, whether it is a good or bad day, and the individual's general life situation. Common means of recovery are rest, relaxation, sleep, and engagement in a positive activity. Fatigue can be the first symptom of a disease and an important element in disease symptoms in several chronic diseases (13). In accordance with these interpretations, tiredness has been defined as “a universal sensation that is expected to occur normally at certain times of the day or after certain types of activity or exertion,” and fatigue as “an uncommon, abnormal or extreme whole bodily tiredness which is not related to activity or exertion” (15). These definitions underline that fatigue differs from what is normal tiredness by occurring unrelated to activity and being more severe. These understandings became important in the process of interpreting the present data. Often fatigue is referred to as “disease-related fatigue,” but presently I have applied the concept “illness related,” since disease connotes a medical explanation, whereas illness refers to a patient's explanation (16), which is in focus in this study.

The aim of the present study was to examine the nature of fatigue and how it is managed in daily life situations by individuals with AS.

MATERIALS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Study design and ethics.

A qualitative approach using semistructured interviews was chosen. The respondents had to be native speakers of Norwegian and have a diagnosis of AS (17) confirmed by a rheumatologist. The first 5 respondents participated in a study primarily aimed to examine effects from ambulatory physiotherapy (18). The subsequent respondents were recruited among individuals that considered fatigue to be a problem among those staying at a rehabilitation center or self-referrals reading an advertisement in the patients' association journal. The interviews of the entire sample have previously been analyzed for illness fluctuations (10). The study was approved by the Regional Board of Medical Ethics and the Norwegian Data Inspectorate. The respondents were informed orally and literarily, and they gave written consent to participate.

Interviews.

The interviews were carried out once with each respondent over a 2-year period. Inspired by Corbin (19, 20), the initial questions of the interviews were developed and became more focused throughout the study. An overview of the questions during the data collection period is given in Table 1. In-depth information was obtained by asking when, why, and how.

Table 1. The development of interview questions during the data collection process*
Steps of data collectionQuestions of the interviewsExperiences with relevance for developing questions about fatigue
  • *

    AS = ankylosing spondylitis.

Interviews of respondents1. How was your everyday life before contracting AS?Essential themes about living with AS:
 1 and 22. How has your everyday life become after contracting AS? Fatigue Good and bad days
 3. Can you tell me about your experiences from 
  therapies in general and your former and present 
  experiences with physiotherapy? 
Interviews of respondents1. Like for respondents 1 and 2Data about fatigue were superficial and
 3–52. Further development of question 2: general
  A. Individuals with AS often tell that the illnessData about what they did to recover
 varies—can you tell me about your experiences? were rich, situational, and
  B. Individuals with AS are often fatigued—can you tell me about your experiences about fatigue? contextual
  C. Can you tell me what you do to recover?
Interviews of respondents1. How was your life before contracting AS?Many descriptions of fatiguing
 6–122. Individuals with AS often tell that the illness situations being closely and not
  varies—can you tell me about your experiences? closely related to everyday life strain
 3. Can you tell me how it is like to be fatigued, and to describe fatiguing everyday situations and how you manage to recover in these situations? 

Data analysis.

The interviews lasted from 50–90 minutes, and were tape recorded and transcribed verbatim. The texts were analyzed inductively. Meaningful statements that included terms relating to fatigue, for example, lack of energy, ability, or strength, and descriptions of tiring situations and means of recovery were excerpted manually and labeled. Interrelationships between codes were identified by asking questions such as how is fatigue described, what are fatiguing situations like, and what is done to recover. Patterns of codes were identified and new categories were created. Comparisons were made between codes, categories, and themes, as well as the text as a whole (21). The development of the overall themes was inspired by prior findings of ordinary and uncommon lives (10) and the definitions of tiredness and fatigue (15). By reading different interpretations of fatigue, disease, and illness in medical and sociologic literature and discussing the literature with researchers examining fatigue in other chronic disease conditions, my reflexivity was facilitated.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Respondents.

The study sample comprised 4 men and 8 women, ages between 30 and 59 years, who had been diagnosed with AS 6 months to 36 years previously. Their self-reported disease activity varied from 11 to 61 on a scale of 0–100 (5), and spinal mobility varied from very little limitation to complete ankylosis in some or most parts of the spine. Seven respondents were in full-time employment and 2 were in part-time employment, and 3 were disability pensioners. Seven respondents had a higher education degree, and 3 had less than 9 years of education.

Comprehensible, manageable, life strain–related tiredness.

AS making life harder.

Some respondents had made few adjustments and lived more or less as before, so that their daily lives had changed very little. Others had made so many adjustments that they had developed a new way of living; however, they considered their life as being quite normal. Their bodies were different from before their illness. They stiffened up if they remained immobile for too long, and they had to move frequently in order to regain suppleness. Motion had become a natural part of their daily routines (10), but it was energy consuming to prevent and overcome stiffening. This meant that daily life had become more of a struggle because they always had to take AS into account. One patient who experienced considerable stiffening of the spine said:

“I notice I'm having to struggle. But I manage to do my job even though there's a lot to do and only a few people to do it. My colleagues at work are just as tired and worn out! But obviously I have more to cope with than they do. I'm always in pain, and even though I've got used to it and don't notice it so much, it really does make me tired” (respondent 4).

Another respondent who had experienced AS for many years said:

“Obviously, in this situation—when ordinary things, simple things, have to be planned and reorganized all the time—obviously it's a strain” (respondent 7).

Altered sleep patterns were a common feature. Several of the respondents said they were often or periodically woken by their stiffness, and had to coax their bodies to move about in bed to relieve the stiffness; if it was very bad, they had to get out of bed in order to loosen up. Their sleep was more disturbed than before, and some said that their husbands/wives could confirm this change. They were often tired in the mornings and did not find it easy to take time off to rest in the course of an ordinary day. However, they claimed that being tired and worn out was quite natural under the circumstances. As one respondent, who had only recently been diagnosed and was being retrained for a different job, said:

“It's no wonder I'm so tired—I sleep so badly! And on top of everything it takes a lot of energy to explain the situation to the people at the job center who don't understand the sort of jobs I can do. Now I hope things will fall into place soon so I can use my energy to live the way I want to” (respondent 10).

In addition to constantly having to take their illness into account, they believed that they were expected to find the time and energy to follow advice on treatment and exercise. Some of them felt guilty because they did not manage this. These patients were usually in employment and had no energy to spare for exercise. Others said that they had disciplined themselves and that they exercised regularly and kept fit. These individuals had often played a sport before their illness, and for them exercise was an enjoyable leisure activity that gave them new energy.

Life strain–related tiredness as a sign of overload.

Some of the respondents believed that they were in good shape, whereas others felt worse and could do less than before AS. However, all of them said that they had to manage their energy. Although they usually lived active lives, they had been forced to set priorities and often to find new ways of doing things. They thought it was important to slow down so as to prevent overstrain. As one respondent put it:

“I try not to do too much. People tell me I ought to slow down a bit so I don't break down. Because I was doing all these different things, and I learnt then to slow down because I have to take care of my health. So I had to learn that I can't do as much as other people” (respondent 9).

Since their strength could vary from day to day, there was no absolute limit to what the respondents could do at any given time, which meant that the time of day when they were tired and what tired them also varied. They used tiredness as a signal that their “batteries were running down” and that they had to “recharge them” or “take time out” to regain their strength. If they did too much one day they could be punished for it by being worn out the following day. Therefore, tiredness protected them from overexertion. When overexertion happened, movement was more tiring than usual; for example, they would find going up stairs a strain. Then they would have to restrict themselves to easy tasks and put off more taxing ones for several days in order to return to normal. On days like this they also found being sociable a strain, as stated in this quote:

“In some social situations or some times, perhaps, I'm there, but I do not participate if I'm tired and not in form. I have difficulties in concentrating, and then I'm only sitting there and looking—or seeming rather indifferent or something like that. That is really frustrating” (respondent 8).

To recover they took things easy, listened to music, read, or sought peace and calm in nature. They said that such situations had also occurred during their previous, healthy life, and that they could see that healthy people around them could also feel like this. On the other hand, they also perceived a difference in that they were able to tolerate less strain than before. Taken together, their tiredness could be explained by everyday life strain and the fact that life had become harder because of AS. Modification of life strain and rest were efficient to overcome this tiredness like it had been before contracting AS.

Unfamiliar and unmanageable illness-related fatigue.

Feelings of exhaustion and helplessness.

The respondents had become more or less accustomed to the fact that preventing and alleviating stiffness required a good deal of effort and that their sleep patterns had changed. However, they reported that in certain periods their body felt quite different. It was almost unbearably painful, heavy, and refractory. The ordinary stiffness was worse and whatever they did, relief was not reached. They found it impossible to perform quite ordinary tasks. The pain was experienced locally, for example, in the pelvis, thoracic cage, or other parts of the spine, or throughout the entire body. In both cases they described their body as being “heavy and impossible to control,” as if the body had “given up.” During these periods they felt “completely exhausted and helpless.” One respondent said:

“I've also noticed that in my bad periods I can't read. Can't take anything in—just stare at the TV—or just listen to something. I don't take in what I'm seeing or what I'm hearing. It's just—I wouldn't call it apathy, and it's not indifference either. No, it's like being in a sort of vacuum” (respondent 12).

Some respondents said that in these situations they had a great need for sleep, and could sleep for hours on end during the day as well as at night. Others found it almost impossible to sleep or calm down. However, whether they slept or slowed down, they were tired and worn out. Their bodies remained exhausted, heavy, stiff, and painful. These sensations were strikingly different from their usual experience of their body. One respondent said:

“On my good days my body's like a sailing-ship in calm waters. I have to be careful, but mostly it functions OK and on its own. But on bad days my body's like a ship in a storm. It creaks and groans. I can't stop it; I just have to bear it” (respondent 12).

Illness-related fatigue as a sign of sickness.

This form of fatigue was associated with the onset or a flare up of inflammation. For example, one respondent reported that when she developed AS, her first sensations were a deep, intense feeling of exhaustion and weakness in her low back (respondent 11). Another respondent said that he had become noticeably more tired after he had stopped taking infliximab (respondent 2). After a while, this was followed by so much pain in the wrist that he was unable to use his arm, and inflammation in this area was confirmed by a rheumatologist. The respondents said that times like these reminded them that they had an unpredictable disease. They had no power and felt helpless because they could do nothing to get relief or to predict what was likely to come in the future. As one respondent said:

“When I'm worn out like this, it's oof! It's more like I want to shut my eyes and think, no, I want to forget what's happening” (respondent 7).

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Currently, 2 different conditions of fatigue have been identified: a comprehensible, manageable, life strain–related tiredness, and an unfamiliar, unmanageable, illness-related fatigue.

Life strain–related tiredness was mainly considered by the respondents to be comprehensible and therefore natural in the sense that the tiring situations and recovery strategies were familiar to them and similar to their prior experiences as healthy individuals. They also thought that healthy people around them reacted in the same way. In other words, life strain–related tiredness and recovery were linked to their daily life situation. However, they did admit to being more easily tired, needing to rest more frequently, and not sleeping as well as before their illness. On the other hand, they considered it reasonable to need more frequent rest during the daytime when they had slept badly the night before, and to become tired more easily when they had to work harder to manage body stiffness. They found that resting and reducing their life load were important self-management strategies for coping with tiredness. It has been found that patients with cancer undergoing strenuous radiation and chemotherapy also consider fatigue to be natural (22). However, these authors also reported that when fatigue persisted after completion of therapy, their respondents no longer considered it natural because it had become incomprehensible (22). Therefore, fatigue seems to be found natural by individuals when it can be explained by specific situations. The condition of life strain–related tiredness fits in with the findings from qualitative studies on tiredness in healthy individuals, who have described their tiredness as a temporary and comprehensible reaction and who have reported that they obtained relief by sleeping, resting, and slowing down (14, 23). This is also in line with the definition of tiredness as “a universal sensation that is expected to occur normally at certain times of the day or after certain types of activity or exertion” (15).

The respondents experienced illness-related fatigue as being unlike their previous experience as a healthy individual. It occurred unexpectedly, had no understandable reason, and could not be relieved by the usual self-management strategies. This is in line with the definitions of disease-related fatigue (15). The respondents thought it was related to inflammation. This seems plausible, but requires a study of the biologic factors during a period of illness-related fatigue.

The traits of unmanageability, strangeness, or uncommonness characterizing illness-related fatigue in this study correspond to reports from individuals experiencing fibromyalgia (14), cancer (23–25), human immunodeficiency virus (26), multiple sclerosis (27, 28), and rheumatoid arthritis (RA) (29–31). One obvious difference in the reports on fatigue in these patient categories and AS is that in AS there seem to be periods with life strain–related tiredness that sometimes changes to illness-related fatigue. Such a distinction is not described in the other patient samples. The studies of patients with RA (29–31), however, suggest that both tiredness and fatigue may be present at the same time because fatigue has been described both to be predictable and unpredictable, to be dull and overwhelming, to precede and not to precede a particular activity, and to be manageable and unmanageable. Therefore, it might be that life strain–related tiredness and illness-related fatigue are more intertwined in patients with RA than among those with AS.

In a systematic meta-study of qualitative studies of fatigue, the authors raised the questions of whether the dynamic nature of fatigue had been captured in the 35 studies they reviewed, and why fatigue was attributed solely to disease and regarded as a distinct entity in chronic diseases (32). The authors speculated that in investigations into the meaning of fatigue, the dynamics of fatigue may have been lost because it is associated with interactive processes between a person and social life. The present findings suggest that this hypothesis is a fruitful one. Examining interactions between the individual and their everyday activities during different periods of illness enabled me to see the clear differences between the descriptions of fatigue conditions and which were associated with life strain and which had no apparent association to what the respondent did in everyday life. Moreover, when rereading the interviews, I found that the respondents used a variety of terms to describe fatigue, but that these usually applied to both tiredness and fatigue. Thus, it was not the words they used, but the context of their statements and the descriptions of what they did to recover that enabled me to identify the differences between the tiredness and fatigue conditions. Therefore, future studies examining fatigue in other social contexts and situations are needed.

The trustworthiness of a study depends on whether it has been performed in a way that enhances the credibility of the findings (33). Obtaining rich data about fatigue was difficult in the beginning. But a qualitative design has the advantage in such cases of being flexible, so that I was able to formulate better questions in the course of the interviews, and I also had time between interviews to critically reflect about how my preconceptions may have shaped my questions and interpretations during the interviews. Initially, my clinical experience from previous patient encounters and my own experience of tiredness hampered my ability to obtain in-depth information. Their stories seemed too familiar to me. However, after I started to ask about fatiguing everyday situations, I was able to ask for more in-depth information and capture more nuanced data. Another important methodologic issue is that of transparency (33). My discussions of results with colleagues forced me to explain the various steps of the study clearly. A limitation of the analysis of fatigue, however, is that the interpretations were not validated by other researchers, the respondents, or other individuals with AS.

The qualitative interview is intended to obtain individual, contextual, and situational data, whereas the analysis is intended to develop knowledge that can be transferred to other individuals and applied in other contexts and situations. The transferability of my previous descriptions of different illness conditions (10) developed from the same data material seems to be good because the findings have attracted great interest among individuals with AS and have been published in the AS patient organizations' German, Danish, Norwegian, and international journals. This does not necessarily mean that the present findings are transferable, however. But transferability is also enhanced by data variability. In the present study, a heterogeneous clinical sample of individuals was interviewed, and they provided rich information. The respondents were ages 30–59 years and were mainly recruited among individuals in therapy. This means that the findings are not necessarily transferable to younger or older individuals with AS or to nonclinical groups.

The clinical implications of my findings might be that clinicians can be inspired to question and interpret the experience of fatigue in a more nuanced way in their clinical examination. The 2 different categories of fatigue may also call for different therapeutic approaches. Life strain–related tiredness has a positive aspect in that it can protect against overstrain and can be relieved by self-management strategies and regulated by modifying everyday life strain. Moreover, it is likely that more life strain can be endured if physical fitness is improved. In contrast, illness-related fatigue does not seem to serve any purpose in guiding everyday life regulation. The present findings suggest that illness-related fatigue needs a medical therapeutic approach aimed at modifying disease processes.

By examining fatigue in terms of interactions between an individual, their illness, and the nature and context of their everyday experience, I have identified 2 different conditions of fatigue in individuals with AS. The condition of life strain–related tiredness is comprehensible and manageable, and is a sign to help patients to protect themselves from overstrain. The condition of illness-related fatigue is unfamiliar, unmanageable, and accompanied by severe bodily pain and stiffness. To my knowledge, no comparable studies have been performed on fatigue in AS, and future studies are needed in order to further illuminate this issue.

AUTHOR CONTRIBUTIONS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be submitted for publication. Dr. Mengshoel had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study conception and design. Mengshoel.

Acquisition of data. Mengshoel.

Analysis and interpretation of data. Mengshoel.

Acknowledgements

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

I would like to thank the respondents for their willingness to share their experiences with me, and Hilde Stendahl Robinson and Gilles Jarret for their assistance in recruiting respondents. I would also like to express my gratitude to the research colleagues for several inspiring discussions about fatigue.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES