Factors promoting improvements in symptoms and health in women with fibromyalgia and chronic widespread pain: a qualitative interview study

Abstract

Purpose

To describe experiences of improvement among women with chronic widespread pain (CWP).

Materials and methods

Recruitment was made from a cohort of women with CWP who participated in a 10- to 12-year follow-up study in 2016. The inclusion criterion was an improvement of at least 30% on a visual analog scale of pain intensity between baseline and follow-up. Seventeen women participated in semi-structured interviews. Data were analysed using qualitative content analysis.

Results

The analysis resulted in three categories with eight subcategories: Experience of improvement included feeling better despite persisting symptoms and to be capable of more activity. Developing strategies for better health included choosing to act to improve health, developing a constructive mental approach to the illness, and changing one’s view of oneself and one’s life. Contextual factors supporting improvement included support from healthcare, social support from one’s environment, and reduced load in daily life.

Conclusions

Experiences of health improvement involved active changes as well as contextual factors. Clinical implications of this study are that increased knowledge regarding pain management, increased physical activity, and reduced stress could contribute to symptom improvement in persons with CWP.

IMPLICATIONS FOR REHABILITATION

• The women’s own actively chosen changes and contextual factors appear to be important for the improvement of chronic widespread pain.

• Treatments that contribute to increased knowledge regarding pain management, increased level of physical activity, and reduced stress were found to be of importance for the improvement of chronic widespread pain.

• Women with chronic widespread pain could be gained by person-centered rehabilitation based on their individual needs and resources.

Keywords:

• Pain
• fibromyalgia
• chronic pain
• interview
• qualitative research

Introduction

Chronic widespread pain (CWP) has been defined as pain at the right and left sides of the body, above and below the waist, and axial skeletal pain for at least three months. Fibromyalgia (FM) is a subgroup of CWP with more severe symptoms [1]. In the general population, about 10–15% of people have CWP [2]. In addition to pain, CWP is associated with tenderness, fatigue, cognitive dysfunction, psychological distress, activity limitations, and impaired physical capacity [1,3,4].

The etiology of CWP is not fully known but research suggests disturbances in pain regulation and central sensitization which leads to overactivity in the pain system [5,6]. Treatment recommendations for persons with CWP include adapted physical activity combined with education [7,8]. Behavioural therapy, multidisciplinary treatments and medications are also recommended in more complex cases [7,8]. Treatments are focused on improving and managing symptoms rather than curing them [5].

Long-term changes of CWP varies in previous studies, but several longitudinal cohort studies have found small improvements in symptoms at the group level over time [9–12]. Improvements in CWP have been affected by several different factors including sleep, obesity, chronic disease, and health-related quality of life in former studies [9,13].

Several past qualitative studies have been conducted in persons with CWP to investigate the experiences of living with CWP [14–17]. Few past qualitative studies have investigated persons with CWP who have improved. One study investigated the experiences of five women with FM who experienced improvement. The women described that they attributed their improvement to an unwillingness to live in a sick role, as well as to biological factors or changes in life to decrease stress and improve their self-image [18]. Another study of persons improved from FM described the importance of overcoming fear of movement, of making sense of symptoms and of becoming more active [19]. Participants whose FM improved describe it as important to maintain changes made to avoid relapses [20]. Despite several previous studies, knowledge is still lacking regarding the self-reported experiences of improvement in persons with CWP, since most previous long-term studies of symptom changes focused on quantitative data. In this study, we seek deeper knowledge regarding how the participants, women with CWP, experienced an improvement in symptoms and general health over time to help in the rehabilitation for these persons.

Aim

To describe experiences of improvement among women with CWP.

Materials and methods

Study design

A qualitative interview study with individual interviews that were analysed using qualitative content analysis, a well-established method in the field of qualitative research [21]. The standards for reporting qualitative research (SRQR) guidelines were followed when writing the manuscript [22].

Participants

In this study, 17 women were recruited from a 10- to 12-year follow-up study and interviewed. In 2004–2005, 166 participants with CWP or FM were recruited from primary health care in three cities in western Sweden to a randomized controlled intervention trial (RCT). The RCT investigated the effects of pool exercise combined with patient education [23]. In 2016, a 10–12-year follow-up study with questionnaires regarding health related aspects and physical tests was performed with the 166 women included in the RCT 2004–2005 [24]. The follow-up study investigated the natural course of symptoms over time and investigated possible predictors of improvements. The impact of the intervention in the RCT was considered to be negligible after 10–12 years, thus the participants in the follow-up were considered as one cohort. 126 women (77%) participated in the follow-up in 2016.

The participants in this qualitative study were recruited from the cohort of 126 women with CWP who participated in the 10–12-year follow-up in 2016. The inclusion criterion in this interview study was an improvement of at least 30% on a visual analogue scale of pain intensity between baseline in 2004–2005 and follow-up in 2016. An improvement of at least 30% in pain intensity has been suggested to reflect a moderate improvement [25]. Thirty-one participants fulfilled the inclusion criteria and were eligible for inclusion in the interview study. Twenty-three of these 31 participants were randomly chosen and contacted by letter. The letter was followed up by telephone for further information and an invitation to participate in the study. It was important to recruit participants from all three cities for the credibility of the study [26]. First, we contacted all eligible participants in City 1 (n = 11), of whom ten agreed to participate. Then we contacted all eligible participants in City 2 (n = 4), of whom two agreed to participate. In City 3, 16 participants were eligible, 8 of whom were randomly chosen and contacted, and five of those agreed to participate. Overall, six persons declined to participate for unknown reasons. Seventeen agreed to participate and were included in the study. All included participants signed informed consent to participate before the interviews started.

Descriptive characteristics

Descriptive data of the study population for the participants in the interview study are presented in Table 1. The mean age of the 17 participants was 58.06 years with a range of 39–72 years. Data are presented after each quote in the result, including information about if the participants reported higher or lower than the median of the participants in this interview study in pain intensity assessed with fibromyalgia impact questionnaire (FIQ-pain) and duration of widespread pain (years).

Table 1. Descriptive data of the participants in the interview study.

	Mean (SD)
	Median (min–max)
Age (years)	58.06 (10.44)
	61.00 (39.00–72.00)
Duration of CWP (years)	22.43 (6.42)
	21.00 (13.00–35.00)
FIQ-pain (mm)	33.18 (12.66)
	31.00 (8.00–53.00)
	N (%)
Living with another adult (yes)	13 (76.5)
Working (yes)	10 (58.8)
Education
9 years or less	4 (23.5)
10–12 years	6 (35.3)
Over 12 years	7 (41.2)

CWP: Chronic widespread pain; FIQ: Fibromyalgia impact questionnaire.

Data collection

The interviews were performed in calm rooms in three cities in western Sweden by a physiotherapist between November 2017 and February 2018. The premises were chosen to give participants the opportunity to share their stories without stress or interruptions. The physiotherapist followed a semi-structured interview guide to ensure that the interviews covered the desired topics but at the same time used the participants’ answers to give them the opportunity to talk about subjects important to them. The guide included open-ended questions regarding experiences of improvement and symptom management (Box 1). The interviews lasted between 34 and 70 min.

Box 1. Interview guide.

We want to investigate your perception of which factors have contributed to your improvement over time.

• Management and symptoms

• Can you please describe your health state today?

• What was your health state 12 years ago?

• How have you managed pain over the years?

• Has your pain management changed in the last 12 years?

• Change in symptoms and life changes

  • Do you experience that your health state has changed over time? How?

  • Do you experience that your pain has changed over time? How?

  • What do you believe has contributed to any change?

  • Have you made any major changes in your life during the last 12 years?

  • Do you believe a relationship exists between your life changes and the change in symptoms? If so, please describe.

• Would you like to say anything further about your experience of changes in symptoms or pain management over the years?

During the interview, supplementary questions were used, e.g., “Tell me more…”, “Can you give an example?” and “How do you mean?”

Data analysis

The interviews were audio-recorded and transcribed. The recorded and transcribed files were deidentified and coded and saved on a protected server. The transcribed text was then analysed systematic and structured in several steps according to a qualitative content analysis with an inductive approach. The analysis was made both close to the text with a manifest approach and with interpretations, using a latent approach to get a deeper meaning and understanding of the participants’ experiences [21,26]. First, the interviews were read and reviewed by two authors separately to obtain a sense of the whole material. During the content analysis, meaning units were identified and in the next step labelled with a code to enable comparisons between codes and sorting into categories and subcategories. According to the method of content analysis, all steps in the analysis were discussed and reviewed by the authors to decrease any impact of their own pre-understanding [21,27]. All authors have clinical experience of persons with CWP and experience of conducting research in the field of rehabilitation for persons with chronic pain. One of the authors (KM) has extensive experience of conducting qualitative studies and using the content analysis method. The author who did the interviews (SJ) had not ongoing patient-caregiver relation with any of the participants.

Ethics

The study has been reviewed and approved by the Regional Ethical Review Board in Gothenburg (No.757-17).

Results

The results reflect the women’s experiences of improvement and describe strategies developed for improvement and the meaning of contextual factors for improvement. The results are presented as categories and subcategories in the text below and in Table 2.

Table 2. Result presented as categories and subcategories.

Category	Subcategory
Experience of improvement	Feeling better despite persisting symptoms
	Capable of more activity
Developing strategies for better health	Choosing to act to improve health
	Developing a constructive mental approach to the illness
	Changing one’s view of oneself and one’s life
Contextual factors supporting improvement	Support from healthcare
	Social support from one’s environment
	Reduced load in daily life

Experience of improvement

The experience of improvement was described in relation to the past when the participants’ symptoms were worse. Most participants did not feel completely well. They described feeling better despite persisting symptoms. The participants also experienced being capable of more activity compared to before, even if they described grieving over things they gave up or could not do any longer, such as playing with children or grandchildren.

Feeling better despite persisting symptoms

Most participants described having fewer symptoms at the interview compared to 12 years earlier. They experienced an improvement in pain and slept better, which led to less fatigue. Some participants now managed without pain medication, and some had so few symptoms that they didn’t reflect on them anymore. They also described improved quality of life and mood now that pain wasn’t taking as big a part of their life anymore. They experienced life as joyful despite persisting pain, partly because they had gotten used to the pain. Some participants also described a fear that symptoms would return and uncertainty regarding whether, when, and how this might happen.

I really had pain all the time, all over my body, and I was exhausted and hardly managed to do anything. I think I was in bed about twenty hours of the day. Just the exhaustion, the tiredness…it’s a huge difference, it really is a huge difference…. (7- FIQ-pain >31/Duration of pain <21)

Capable of more activity

The participants described being more active now compared to 12 years earlier. They could exercise more and do things they couldn’t before, such as working, grocery shopping, travelling longer distances in a car, and climbing mountains or stairs. The participants experienced that life, in general, was working well at present and that they were making up for lost time with their families.

Just the fact that I can manage to walk a little further. I mean, it’s not like I am walking quickly, but I am out walking just about an hour every morning…. (16- FIQ-pain = 31/Duration of pain <21)

Developing strategies for better health

In this category, the participants described choosing to act to improve health, and how it felt important to do something proactive about symptoms. The participants described developing a constructive, mental approach to the illness, where they accepted symptoms but did not let them determine behaviour. The participants had also been changing one’s view of oneself and one’s life which improved overall health, as they learned how to handle the pain as well as other setbacks in life.

Choosing to act to improve health

The participants experienced improvements through actively chosen actions, such as performing physical exercise. The forms of physical exercise that helped them improve were walks, resistance training and relaxing exercise. It was important for the participants to maintain a good physical capacity and they developed an awareness of the body that contributed to improvements. They also developed active strategies to manage pain, such as planning days carefully and making sure of a balance between rest and activity. The participants also adjusted their social life by avoiding some contexts or people that required too much energy. Active life changes, like choosing to get divorced, contributed to improvements in symptoms and health for some participants. Others felt better by opening up about their symptoms. It was important for the participants to test their limits to be able to do what they enjoy. Participants also named pets, keeping warm and dressing comfortably, wearing a neck collar, eating right, being out in nature, and paying attention to ergonomics and posture as important for improvement. They also described adapting their homes to keep living there even if symptoms worsened.

And my body turned into a totally different body then, when I really started working out, because I’d always been told, weight training, watch out, you’ll just hurt worse, but today it’s the case that you’re supposed to do it instead…And I can feel how much better my body feels, too, and how much more flexible I’ve become, so, yeah, I’ve got to stick with it to improve my life. (13- FIQ-pain < 31/Duration of pain = 21)

Developing a constructive mental approach to the illness

The participants changed their approach to the illness which led to improved health. This was done after they had accepted and acknowledged their symptoms, which was possible first after they learned about pain and, in some cases, received a diagnosis. They also described time as important for improvement. Some participants described a conscious approach to achieve health improvement with goals to work towards, large or small. Several participants learned to manage pain by learning to listen to their bodies and recognise signals before symptoms worsened to prevent this. The participants learned how to prevent pain from taking over life, and the ability to do joyful things which decreased pain was seen as important. They also stated that mental health could compensate in part for physical health, and how the more pain they experienced, the more important mental health become for pain management.

Well, my worries have disappeared, and I am not afraid…not afraid of pain. (4- FIQ-pain <31/Duration of pain = 21)

Changing one’s view of oneself and one’s life

The participants described how negative events in the past often led to increased symptoms and how they had learned to manage negative events and setbacks today so that, if they relapsed, the relapse would not be as severe. They did not identify themselves as “persons with pain” and choose to adopt a positive view of life, looking forward instead of back. They described a long journey on which they had developed as persons, a journey that included experiences making them who they are today.

I don’t want to be a “person with pain”, that’s not how I identify myself, I won’t let it. So, it, it, I think that’s what it’s all about, my attitude. (11- FIQ-pain = 31/Duration of pain <21)

Contextual factors supporting improvement

In this category, the participants described the importance of support from healthcare in learning about and managing pain. Social support from one’s environment, in the form of social contacts who helped the participants when needed, was also described as important. They also expressed that reduced load in daily life, like less stress, led to decreased pain and that they had less stress today than 12 years ago.

Support from healthcare

The participants described how healthcare contributed to their improvement. With help from healthcare professionals, they had obtained knowledge and tools to move forward. They described the importance of meeting healthcare professionals with patience and the right skills, and who listened to them. Other diseases and concomitant disorders also affected how the participants felt and the pain of some improved through the treatment of other health conditions. They had learned where to seek care and now did so as needed. Some participants also described improving first when they had stopped seeking care and found peace.

For one thing, he knew his stuff, and he really saw me and listened to what I said. The world should have more people like that. You don’t need twenty people; you just need one who really gets it. When you find that person. (4- FIQ-pain <31/Duration of pain = 21)

Social support from one’s environment

Social support from family and friends was described as important for achieving and maintaining improvements. This entailed social contacts that pushed the participants to do more, helped with practical tasks, were understanding, and made them felt safe and happy. The people in their environment sometimes saw what they needed before they saw it themselves. They also described improvements in the form of relief from feelings of loneliness when meeting other people with similar problems who understood what they were going through. Some participants also described feeling better and finding strength when people in their environments were well, happy, and healthy.

Well, I’ve also had some people around who know me really well and say, now it’s time to think of yourself a bit. (3- FIQ-pain = 31/Duration of pain >21)

Reduced load in daily life

The participants described improving when their lives changed, and they had less stress. Some participants had small children 12 years ago who required much time and energy. With age, others had fewer demands; some participants retired and described improved opportunities for recovery and flexibility. The participants also improved when circumstances at work changed. Some participants changed workplaces, some improved when they stopped working or worked less, and others improved when they began working or worked more, feeling that work gave life meaning. There were also participants who gave up a successful career and felt better after doing so. They described feeling good when work and personal life were in balance.

It was really that I felt like, I can catch my breath, there’s no clock to stress you out, instead, if I’m not done, or if I get tired, then I can take a rest and, there you go, continue later. That I get to decide how my time is spent, that’s when I felt a real difference. (1- FIQ-pain <31/Duration of pain >21)

Discussion

The categories that described experiences of improvement involved active changes and the importance of contextual factors including reduced load in daily life and social support.

The participants experienced themselves as improved despite persisting symptoms. This might imply that the participants improved in part due to an improved ability to cope with symptoms. The participants also expressed that symptom improvement partly meant that symptoms had less importance in their lives. This is supported by previous findings in which women with FM reported shifting their view of pain over time from a primary focus to the background [16]. Improvement has previously been described as the resolution of symptoms but also as reduced suffering from illness due to readjustment in everyday life, or redefinition of illness with or without a resolution of measurable values [28]. The participants in the present study also described being more active today than 10–12 years earlier. This result is supported by a previous study in which persons recovered from FM reported being more present for their families after recovery and resuming other activities [20].

The participants described physical activity as important for improvement and for maintaining improvement, which is in line with previous findings where physical activity has been described as important for recovery from FM [19]. These results support treatment recommendations for persons with CWP to become regularly physically active, due to positive effects on several symptoms [8,29].

The result in the present study indicates that actively chosen changes and actions could bring about improvement. Health care professionals can have a central role in this process by carefully listening to individuals in care meetings and helping them verbalise goals and choices to support the achievement of their goals [30]. In the present study, participants emphasised the importance of not identifying themselves as “persons with pain”. In a former qualitative study, persons recovered from FM described resistance to living in a ‘sick’ role, where they refused to learn to live with FM and rather made changes in their lives to improve [18].

To develop a constructive mental approach towards the illness meant that the participants learned mental strategies for not permitting pain to take over their lives, such as listening to their bodies or having goals to work towards. Participants described pain-management knowledge as a key in the development of a constructive mental approach towards the illness. This is in line with a former study showing that understanding the illness improves the ability to cope with it [14]. A positive view of life was also described as important for improvement in health in the present study. A positive attitude has been associated with quality of life and the management of symptoms in persons with FM [15,31].

Contextual factors including reduced load in daily life with fewer commitments and good social support from family and friends were experienced to be supporting symptom improvement. Similarly, environmental circumstances, such as work-related demands, lack of social support, unfavourable physical environments, and traumatic events, have previously been described to negatively affect the pain symptoms of CWP, which reinforces the result in the present study [17]. Diminished stressors of various kinds seem important for improvements in symptoms and health. Similar experiences were described previously where stress has been shown to influence pain and recovery from other chronic pain conditions [32,33].

Based on the present results, several aspects seem important for improvement for persons with CWP and these aspects may interact. Further, the participants expressed a fear of relapsing, and the changes must be maintained to maintain improvement, which are reinforced by previous qualitative research in persons recovered from FM [20].

Methods discussion

Trustworthiness in qualitative research has been described with the concepts of credibility, transferability, and dependability [21]. Credibility refers to how well the result describes what it is intended to describe. Selection of participants is one aspect of credibility and in the present study, credibility was sought by recruiting participants from three municipalities of different sizes. Credibility also includes how the authors interpret the data. Qualitative content analysis was used to analyse the interviews and the analysis was discussed back and forth by the authors until an agreement was reached, to decrease the influence of pre-understanding and to increase the credibility of the result [21].

Dependability includes how data can change over time. During the interviews in the present study, a semi-structured interview guide was used for all participants to make sure that the important areas were discussed in all interviews [21,26].

The inclusion criteria in the present study was ≥30% reduction of pain intensity from 2004–2005 to 2016. A limitation of this interview study was that the interviews were performed one year after the pain intensity was assessed. No current rating of pain was collected at the time for the interviews, which means that the pain could have increased or decreased for some participants during the previous year. However, the results of the interviews indicated that the participants could reason about their improvement and that they agreed about being improved.

In the 10–12 year follow-up study [24] only a small percentage (25%) reached the 30% reduction of pain intensity and were eligible for inclusion in this interview study. Also, the participants were all women. Therefore, the results of this study cannot be transferred to the whole population of persons with CWP. It is however important for health professionals to encourage all patients to seek strategies to improve symptoms related to CWP.

Clinical implications

Treatments that contribute to increased knowledge regarding pain management, increased level of physical activity and reduced stress appear important for symptom improvement in persons with CWP.

Factors important for improvement seem to be based on personal circumstances and individual needs in women with CWP, which supports the benefit of person-centred rehabilitation.

Conclusion

Experiences of improvement in health involved both actively chosen changes and contextual factors. Factors important for improvement were finding a balance between activities and rest, developing methods and mindsets for improvement, support from the environment, and reduced stressors of various kinds.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Data used to analyse the present study are available upon reasonable request.

Additional information

Funding

This work was supported by the Local Research and Development Council, Fyrbodal, Sweden, grant number [VGFOUFBD-711651] and the Swedish Rheumatism Association.