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Page 1: Contributions of a Group-Based Exercise Program for Coping with Fibromyalgia: A Qualitative Study Giving Voice to Female Patients

This article was downloaded by: [George Mason University]On: 21 December 2014, At: 20:27Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Women & HealthPublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/wwah20

Contributions of a Group-Based ExerciseProgram for Coping with Fibromyalgia: AQualitative Study Giving Voice to FemalePatientsVicente J. Beltrán-Carrillo PhD a , Juan Tortosa-Martínez PhD b ,George Jennings PhD c & Elena S. Sánchez MD da Centro de Investigación del Deporte , Universidad MiguelHernández , Elche , Spainb Physical Activity and Sport Sciences, Universidad de Alicante, SanVicente del Raspeig , Alicante , Spainc Coordinación de Ciencias del Deporte , Universidad YMCA , MexicoCity , Mexicod Facultad de Educación , Universidad de Sevilla , Sevilla , SpainAccepted author version posted online: 01 Jul 2013.Publishedonline: 12 Aug 2013.

To cite this article: Vicente J. Beltrán-Carrillo PhD , Juan Tortosa-Martínez PhD , George JenningsPhD & Elena S. Sánchez MD (2013) Contributions of a Group-Based Exercise Program for Coping withFibromyalgia: A Qualitative Study Giving Voice to Female Patients, Women & Health, 53:6, 612-629,DOI: 10.1080/03630242.2013.819399

To link to this article: http://dx.doi.org/10.1080/03630242.2013.819399

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Page 2: Contributions of a Group-Based Exercise Program for Coping with Fibromyalgia: A Qualitative Study Giving Voice to Female Patients

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Women & Health, 53:612–629, 2013Copyright © Taylor & Francis Group, LLCISSN: 0363-0242 print/1541-0331 onlineDOI: 10.1080/03630242.2013.819399

Contributions of a Group-Based ExerciseProgram for Coping with Fibromyalgia:

A Qualitative Study GivingVoice to Female Patients

VICENTE J. BELTRÁN-CARRILLO, PhDCentro de Investigación del Deporte, Universidad Miguel Hernández, Elche, Spain

JUAN TORTOSA-MARTÍNEZ, PhDPhysical Activity and Sport Sciences, Universidad de Alicante, San Vicente del Raspeig,

Alicante, Spain

GEORGE JENNINGS, PhDCoordinación de Ciencias del Deporte, Universidad YMCA, Mexico City, Mexico

ELENA S. SÁNCHEZ, MDFacultad de Educación, Universidad de Sevilla, Sevilla, Spain

Numerous quantitative studies have illustrated the potentialusefulness of exercise programs for women with fibromyalgia.However, a deeper understanding of the physical and especiallypsychosocial benefits of exercise therapy from the subjective per-spective of this population is still needed. This study was conductedwith 25 women who had fibromyalgia and were participatingin a nine-month, group-based exercise program. The aim was toprovide an in-depth description and analysis of the perceived phys-ical and psychosocial benefits of participation. Qualitative datawere collected through observation, interviews, and focus groups.The exercise program not only alleviated the physical symptomsof fibromyalgia, but social interactions within the group helped tocounteract the isolation, frustration, and depression often associ-ated with this chronic condition. The data from this study maycontribute to a deeper understanding of the benefits of exercise for

Received October 8, 2012; revised May 28, 2013; accepted June 21, 2013.Address correspondence to Vicente J. Beltrán-Carrillo, PhD, Centro de Investigación del

Deporte, Universidad Miguel Hernández, Avenida de la Universidad, s/n. Elche, 03202, Spain.E-mail: [email protected]

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Contributions of a Group-Based Exercise Program for Coping with Fibromyalgia 613

women with fibromyalgia and might be useful for the improvementof future exercise programs for this population.

KEYWORDS physical activity, women, chronic pain, health,quality of life, Spain

Fibromyalgia (FM) is a chronic condition characterized by widespread painand many additional symptoms such as fatigue, stiffness, sleep disturbance,and frequent psychological disorders, such as depression (Ellingson et al.,2012; Fitzcharles & Yunus, 2012). FM affects every aspect of the patients’lives, including difficulty with activities of daily living, problems with workcapacity and productivity, and social life limitations (Kayo et al., 2012;Lempp et al., 2009). FM has an enormously negative impact on the patients’health-related quality of life (HRQL) (Tander et al., 2008), understood as thepatients’ perceptions of their syndrome, its functional effects, and associatedlife impairments.

FM affects about 3% of the population worldwide and is more prevalentin women (5%) than in men (1.5%) (Lawrence et al., 2008). The exact causeof FM is still unclear, but abnormalities of nervous system pain processingcould explain the presence of pain without tissue damage (Fitzcharles &Yunus, 2012). This deregulation is probably caused by a series of interactingfactors, such as genetic predisposition, neurophysiological changes, and anaberrant stress response (Fitzcharles & Yunus, 2012).

Women with FM are less physically active (McLoughlin et al., 2011),and they have less perceived functional ability and impaired physical per-formance (Jones, Rutledge, & Aquino, 2010). Furthermore, women with FMwho are physically active seem to modulate pain better than those who aremore sedentary, as measured by magnetic resonance imaging (McLoughlinet al., 2011).

Busch and colleagues (2011) conducted a systematic review about thebenefits of physical activity for FM, including systematic reviews and meta-analyses. The results showed that engaging in physical exercise programsproduced benefits in pain relief, reduced stiffness, lowered fatigue, alleviateddepression, and enhanced physical fitness, which may also improve physicalfunctioning. Kayo and colleagues (2012) have also shown a decrease inmedication intake as a consequence of exercise.

Exercise is accepted as one of the cornerstones of management ofFM (Busch et al., 2008). Nevertheless, obtaining a deeper understanding ofthe benefits of exercise programs is still needed, because not all importantclinical and practical aspects of exercise prescription have been elucidated(Busch et al., 2008). A holistic approach to HRQL, including not onlyphysical but also psychosocial benefits, seems necessary. For example, thepotential social benefits of exercise for women with FM have not been

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614 V. J. Beltrán-Carrillo et al.

addressed, when a socially vulnerable setting is considered a risk factorfor FM (Fitzcharles & Yunus, 2012), and FM often results in social isolation(Arnold et al., 2008, Lempp et al., 2009).

The incorporation of studies based on qualitative methods into theongoing quantitative research on this topic will be of special interest. Thisis because some aspects of HRQL, such as emotional and social aspects, arenot easily measured, interpreted, expressed, and valued from a quantitativeperspective (Busch et al., 2008). HRQL might be measured quantitatively byseveral instruments such as the Short Form 12 and 36 health survey question-naires (Busch et al., 2011). However, a patient’s perspective of HRQL may bespecific to the pathology (Nuñez et al., 2006), and quantitative questionnairesmay be insensitive to important determinants of life satisfaction (Lynch et al.,2008). The use of a qualitative methodology may help obtain more disease-specific responses and an opportunity to deepen on the personal, subjectiveperceptions of HRQL (Lynch et al., 2008; Nuñez et al., 2006).

Therefore, the aim of this study was to provide an in-depth descriptionand analysis of the perceived physical and psychosocial benefits of partici-pation in an exercise program for women with FM. This study should givesome valuable information about the specific ways exercise helped this sam-ple of women to cope with FM and improve their HRQL. It also may beof interest for the design and improvement of future exercise programs forwomen with FM.

METHODS

Participants

Participants for this study were recruited from July to September 2009 withthe help of a family doctor who suggested that her patients with FM attendthe group-based exercise program of this study. The program was publi-cized as an activity supported by the City Council of the city in which thestudy was conducted, and other women with FM could also participate inthe program if they fulfilled the eligibility criteria. All the participants had tohave been previously diagnosed with FM, according to the American Collegeof Rheumatology criteria (Wolfe et al., 1990). A group of 33 women wereapproached to participate in the study, although 8 potential participants wereexcluded due to (1) severe rheumatic, inflammatory, cardiovascular, or res-piratory pathologies; (2) incompatibility with work schedule; or (3) refusingto participate. Finally, a total of 25 women with FM, aged between 38 and82 years (mean age = 54.56 years), participated in the study. Two womendropped out of the exercise program. One of them dropped out after threeweeks, reporting that the exercise program was too intensive for her andcaused her agitation and muscular pain (JL, 65 years old). The other womandropped out in the third month, because she suffered an accident at home

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Contributions of a Group-Based Exercise Program for Coping with Fibromyalgia 615

and was seriously injured (RO, 69 years old). The views and experiences ofthese women were considered in this qualitative study.

All women signed written informed consent, which was approved bya review board of a Spanish university and followed the principles out-lined in the Declaration of Helsinki of 1975 and as revised in 2000. As thestudy was focused on information which was very personal and private orcontained valuations of other people, women’s anonymity was preservedusing pseudonyms and omitting some concrete data about the context ofthis research.

Procedure

The exercise program took place in a public sport center located in a Spanishcity from October 2009 to June 2010 (9 months). The instructor was a sportsciences professional (degree in sport sciences, master’s degree in physi-cal activity and health, and PhD in fibromyalgia and exercise) who workedin collaboration with the family doctor mentioned in the previous section.The program consisted of two sessions per week (Tuesdays and Thursdays),each lasting one hour. The sessions contained warming up and joint-mobilityexercises; tasks for coordination and balance; and moderate-intensity phys-ical activities for the development of cardiorespiratory endurance, muscularstrength and endurance, and flexibility (Table 1).

The field work was conducted by one member of the research group.Different techniques were used to gather qualitative information to addressthe main questions (Table 2). First, the researcher observed one exercisesession per week during the nine-month exercise program and the follow-ing events to gather additional information and develop a rapport with thegroup: three breakfasts in a bar after gym sessions, a public awareness eventheld in a park, and the farewell meal celebrated at the end of the exerciseprogram. The researcher took field notes about observed conversations orsituations which might be of interest for the aim of the study and wrote thisinformation in a research diary.

Second, the researcher conducted short, semi-structured interviews dur-ing the sessions of the exercise program, when some women had a breakdue to any pain or discomfort or were directly invited to be interviewed. Allparticipants were interviewed at least once. Women who reported more use-ful information for the aim of the study and showed better communicationskills were interviewed on three or four occasions throughout the field work.These short interviews lasted from 5 to 20 minutes and were also recordedin the research diary.

Third, two semi-structured focus groups of five to six informants eachwere conducted and recorded by the researcher. The purpose of thesefocus groups was (1) to complete the collection of information from womenwho took little part in the short semi-structured interviews and (2) to use

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TABLE 1 Exercise Program Provided to the Group

Warm-up activities (10 min) Slow walking and gentle arm movementsTandem walking

Steady-state aerobic exercise(15–20 min)

Brisk walking at 65%–70% of predicted maximum heartrate

Walking in different directionsJogging at 65%–70% of predicted heart rate maximum

Muscle-strengthening exercises(15–20 min)

(1) Shoulder press, (2) dumbbell press, (3) shoulder sideelevation against resistance, (4) bicep curl, (5) dumb-bell bent over row, (6) squats, (7) hip flexion and (8)extension, and (9) standing hip abductor. The differ-ent muscle groups targeted were shoulders (deltoids andbicep), neck (trapezius), hip (gluteus and quadriceps),and back/chest/torso (latissimus dorsi, pectoralis major,abdominals).

Flexibility training (10 min) (1) Pull head to one side; (2) posterior shoulder stretch:horizontal adduction; (3) forearm extensor stretch: armsforward, pulling the hand with palm turned in and thefingers down; (4) forearm flexor stretch: place the palmsagainst the wall and lean toward the wall; (5) hip/glutealstretch: flex the knee on a bench and lean toward thebench; (6) gastrocnemius/achilles stretch: plant one footand keep that leg straight while leaning toward the wall;(7) pectoral stretch: bend the left arm and place the fore-arm against the wall with the elbow at shoulder height.Rotate the body away from the arm and hold; (8) lum-bar stretch: hold the arm onto wall and lean forward; (9)hamstring stretch: straighten the legs and try and touch thetoes.

Cool-down activities Slow walking and gentle arm movements

a technique of data collection which could easily identify contradictoryinformation if women did not share their views regarding a concretequestion. These focus groups lasted approximately 40 minutes.

Finally, the researcher conducted and recorded three in-depth, semi-structured interviews with three women who were perceived would offerinsightful information concerning the social contribution of the exercise pro-gram for coping with FM. Two women (SA and LU) were the social leadersof the group. The third woman (CM) was a member of a FM associationwhich claimed for the social rights of people affected by FM and offeredsupport to FM patients and their relatives.

Following Shenton (2004), several strategies were used during the fieldwork to enhance the rigor of this study:

● The researcher who conducted the field work had previous experience inqualitative studies and the techniques used for data collection.

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Contributions of a Group-Based Exercise Program for Coping with Fibromyalgia 617

TABLE 2 Example of Questions Guiding Qualitative Data Collection

Is there any interesting information for the aim of the study in. . . ?

Observation Conversations between participantsConversations between participants and the instructorObserved situations

What are the FM symptoms you suffer from?How is your daily life with FM?

Short interviews Does FM affect your daily activities? Does FM affect yourrelationships with others?

Do you think this exercise program can be a therapy forwomen with FM?

Focus groups Do you think this exercise program can reduce your FMsymptoms?

In-depth interviews Do you get any benefit from taking part in this exerciseprogram? What kind of benefits? (physical, psychological,social benefits)

What kind of exercise is good for you? What kind of exercise isnot good for you?

What do you think about this exercise program, the instructor,and your mates?

● The long stay in the field let the researcher study participants in-depthand provided him with enough time and opportunities to tackle emergingdoubts, gaps, and topics related to the research.

● Triangulation was established via use of different techniques, a consider-able number of participants with different profiles, and different sites togather information.

● Several strategies to ensure honesty in informants were considered. Theresearcher encouraged informants to be frank, because only honest opin-ions would be useful, showed a learning (instead of a judging) attitudeto ensure frank opinions, and used iterative questioning to detect possiblecontradictions in the provided information.

Data Analysis

The field notes gathered in the research diary were transcribed by theresearcher with a word processor software immediately after observationsand short interviews. The other authors transcribed the recorded in-depthinterviews and focus groups. Transcriptions were analyzed with the sup-port of the software NVivo, which was used to organize and classify dataefficiently (Bazeley & Richards, 2000).

The analysis was a continuous and cyclic process, superimposed withdata collection that took place from the beginning of the field work to thefinal report (Flick, 2002). The analysis used combined strategies of both “con-ventional” (inductive) and “directed” (deductive) content analysis (Hsieh &

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Shannon, 2005). First, all transcriptions were read several times to becomefamiliar with the data and get a sense of the whole. Second, the exact wordsfrom the text that captured key thoughts or concepts related to the aim of thestudy were coded. Thirdly, these codes were sorted, using inductive reason-ing, into a map of interrelated categories and subcategories which gave senseto the data in accordance with the aim of the study. Logically, some codesand categories were related to questions of the interviews, but they were notpre-established. The open-ended questions used by the interviewer favoredthe collection of unpredictable information, which permitted such informa-tion to emerge from the data. Fourth, a deductive phase was developed tofind more data in the field to confirm the importance of the different cate-gories or attend gaps identified during the inductive phase. Fifth, a processof categorical refinement was established to readjust previously identifiedcategories and their contents. The final categorical system was coherentfor the researchers and sustained the findings presented in the resultssection.

The data analysis was carried out by the researcher who conducted thefield work. Other members of the research group supervised this processand resolved discrepancies in coding or in identification of emergent themeswith him. This supervision was established to enhance the quality of codingand categorizing.

RESULTS

Perceived Physical Benefits

All women who participated in this study considered FM a very limiting anddisabling condition, partially due to negative physical consequences, such aspain, stiffness, fatigue, and decreased mobility. However, they reported sev-eral physical benefits that resulted from the exercise program of this study,as shown in the following sections.

REDUCING MUSCULAR STIFFNESS AND PAIN

Most participants reported that the exercise program reduced their muscularstiffness and chronic pain. The reduction of pain and stiffness was relatedto the practice of moderate exercises and non-strenuous physical demands.They felt better when they did “something light.” In fact, only one womandropped out of the program because of negative physical effects, and shereported that the exercise program caused her “agitation and muscular pain”because it demanded “too intense exercises” for her (JL, 65 years old, shortinterview).

The reported pain reduction could also have been due to the distractingeffect of engaging in a socially enjoyable activity. To divert attention from

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pain seemed to be a useful strategy to cope with it, and it may have led topain gaps:

Whenever I’m here [in the exercise program], I don’t think about the pain. . . you are with your mind on something else . . . and you feel better. Ifyou are alone at home . . . you are . . . it hurts, it hurts. (RS, 62 years old,short interview)

It is also noteworthy that not every form of physical activity was reported tobenefit the participants. Contrary to the exercise program, daily-life physicalactivities (e.g., housework or shopping) which involved “standing up for toolong” or “postures that are not good” caused stiffness and pain.

INCREASING VITALITY AND PHYSICAL FUNCTION

Fatigue or tiredness were perceived by all participants as some of the mostbothersome symptoms of FM. The exercise program might also have causedfatigue, especially at the beginning before participants had adapted to it.However, most participants perceived this fatigue as different, one that ledto relaxation, stiffness reduction, and less pain. Moreover, most participantsreported that the exercise program provided them with increased vitality andbetter physical function to perform daily-life activities (“I feel more energy,”“Now I have more mobility,” “I feel more agile”).

AVOIDING INACTIVITY AND ITS DISABLING CONSEQUENCES

Inactivity was perceived by most participants to be a cause of more pain andeventually more disability. They must avoid inactivity as a means of main-taining their personal autonomy. Even though exercise required an effortfrom these women, they tried hard to keep attending the program:

I come because I know it’s good for me, because if not . . . those whostay in bed because of the pain . . . straight to a wheelchair! If you don’tmove, you get clearly worse. (CH, 54 years old, short interview)

Perceived Psychosocial Benefits

Social isolation, frustration, and depression emerged as some of the mainchallenges women faced in their lives, caused by the combination of sev-eral factors. First, they suffered from a chronic condition, surrounded bymany doubts regarding its causes, diagnosis, and treatment, which gener-ated hopelessness and uncertainty. In addition, the physical symptoms ofFM imposed limitations that directly affected their social relationships and

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daily-life activities. Furthermore, some of the participants’ doctors, familymembers, friends, and co-workers thought that FM was psychological, thatthey were making up the pain or they were “too weak.” As a conse-quence, these women felt greatly misunderstood, not believed even by theirloved ones in some cases. Moreover, many of them were housewives withgrown-up children who had already left home, and some of them lived bythemselves and felt lonely. However, the exercise program helped them todeal with this situation, as shown in the following sections.

AN OPPORTUNITY FOR SOCIAL LEISURE TIME

The exercise program gave some women the opportunity to start a newsocial life that helped them to deal with their lonely daily life and the negativepsychosocial consequences of that situation:

I had depression, because my husband died three years ago and thisactivity . . . being with other people helped me to overcome it. I’m alwayslooking forward to the start of the program, so I can have a relationshipwith the others. Otherwise I don’t have anything else to do . . . I’ve beenleft behind from my friends, who have their partners. My children havegrown up; they have their lives and have left home . . . I have more timefor myself, but what do I want it for? (MR, 58 years old, short interview)

This way I spend some time with the people who come here [exerciseprogram]. Because, I’m very lonely. I live by myself . . . there are days Idon’t even open the door . . . I don’t even open my mouth. (AT, 73 yearsold, short interview)

FEELING UNDERSTOOD AND BELIEVED BY PEOPLE WITH THE SAME PROBLEM

Notwithstanding, the exercise program was not viewed as just any socialactivity. It was an activity with other women with FM, other women whowere just like themselves. That is why MT (60 years old, short interview)considered the social relations that were created to be even more importantthan the physical activity: “This is more like a group therapy, here is wherethey understand you and give you advice.” They could be themselves with-out the risk of being judged. Also, they were believed, and nobody in theprogram thought they were making up the pain or the fatigue.

RECEIVING AND GIVING AFFECTION, SUPPORT, AND HELP

Not surprisingly, the participants formed a strong connection with each other.Signs of love and affection, such as kisses or hugs, were often observedin the program (research diary). These meaningful social relationships and

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Contributions of a Group-Based Exercise Program for Coping with Fibromyalgia 621

emotional connections turned into support and mutual help, somethingwhich had a remarkable positive impact on the women’s lives:

This woman [talking about another fellow] came and . . . I thought, “Shehas the FM face,” what a haggard face. One day we told her, “Are youwidowed or something?” and she says, “No, I’m not,” and then I say,“Why do you come dressed in black?” She says, “I don’t know.” I say,“Then don’t come here dressed in black, ok? It scares me [laughs].” Thelady ended up with really cute clothes! That’s why I’m telling you thegroup is great for us as a therapy. (LU, 57 years old, in-depth interview)

Being with SA brings me to life. One day in the cafeteria she read amanuscript about FM, a story about a sick woman, and I felt identifiedwith it and started crying. She hugged me, she asked me if I had anyother problems, she told me to count on her. That same afternoon shecalled me to see how I was doing. (LR, 60 years old, short interview)

The instructor, defined by all participants as a “loving person” and a“great professional,” played a leading role in that social network, creating apositive atmosphere in which women felt understood as well as safe, well-advised, and being attended to. However, this mutual-help network was alsoheaded by some relevant women who had a strong commitment for helpingthe rest and caring about their gym fellows. SA (56 years old) was the mostprominent case in this regard. Her attitude and help was really importantfor the great social atmosphere of the group and the success of the exerciseprogram. In a semi-structured interview, she explained what moved her toact in that way, sending a very meaningful social message:

When I was down they got me off the hook. The person who helped methe most told us one day: “This can’t be paid, the only thing we have todo is to do with others what they’ve done for us” . . . helping anotherperson doesn’t take anything from you, just the opposite, you gain fromit . . . and when I do it I feel good about myself . . . that’s the main thing.(SA, 56 years old, in-depth interview)

LEARNING AND DEVELOPING A POSITIVE ATTITUDE FOR FACING FM

The atmosphere created in the program had much to do with the positiveattitude of some women, which was contagious. When they were havinga good time, it was easier for them to forget about the pain (at least for awhile), become more optimistic, and keep the disease in perspective. Forthis reason, humor was for them a “necessary medicine” to cope with FM(focus group). In this regard, something very valued by these women wasthe fact that most of their fellow members showed a will to be healthier, cope

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with FM, and be happy despite FM. Most of them had previous experienceswith other people with FM or other pathologies and perceived this group asdifferent:

I needed to get out of a group of sick people. Here [in gym] all peoplehave FM like me, but this is a group that tries to get out of it. There arepersons in the group that have a very good mood and they spread thisjoy. Before, in the groups with psychologists, I was fed up of being withpeople completely down, who only went to complain . . . then I wentdown more and more. (VT, 44 years old, short interview)

Although women understood that the exercise program would not curethem, it was a relief for them to have finally found something that allevi-ated their symptoms, at least partially. In some cases, doctors told them thatthey could do nothing but just accept it, so the fact that they were experienc-ing physical and psychosocial benefits with this activity acted as a powerfulstimulus to be more optimistic about their condition.

DISCUSSION

Evidence is growing about the benefits of physical activity for women withFM, but most such evidence has focused on quantitative methods and abiomedical approach, which offer an incomplete picture of the subjectivesignificance of physical activity for this population. In some qualitativestudies about the experience of living with FM (Hallberg & Bergman,2011; Hallberg & Carlsson, 2000; Mannerkorpi, Kroksmark, & Ekhdal, 1999),women reported using physical activity for physical and psychological bene-fits, but these studies considered unstructured leisure-time physical activitiesand did not analyze in-depth the effects of organized exercise on the HRQLof these women. To the current researchers’ knowledge, this is the firstattempt to explore in-depth the perceived physical and psychosocial ben-efits of women with FM in relation to a structured, group-based exerciseprogram for coping with their syndrome.

Perceived Physical Benefits

The women participating in this study reported several physical benefits ofthe exercise program, including reduced pain, stiffness, and fatigue, as wellas increased mobility. Although findings are not always conclusive, quan-titative studies suggest that physical activity decreases pain in FM patients(Busch et al., 2011). The mechanisms by which this occurs are not fullyclear, but physical exercise may inhibit pain based on the stimulation of an

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endogenous analgesic system involving supraspinal descending control ofdorsal horn nociceptive activity (Ceko, Bushnell, & Gracely, 2012).

Nevertheless, according to participants’ opinions, pain reduction mayalso be related to a distracting component of the exercise program, whichhas been reported to have a powerful pain-inhibiting effect (Villemure &Bushnell, 2009). Pain gaps with different unstructured physical activities havealso been reported by other researchers (Hallberg & Bergman, 2011; Juusoet al., 2011) and may be achieved with any enjoyable activity, not onlywith an exercise program. However, the activities of a group-based exerciseprogram may offer a higher distracting and pain-inhibiting effect than manyother social or leisure activities. Physical tasks can be funny, distracting, andrequire much attention.

Fatigue is probably the most debilitating symptom of FM (Cudney et al.,2002) because it is not often in proportion with the activity performed andis different from normal fatigue (Humphrey et al., 2010). Physical exercisewas a coping mechanism against fatigue for participants in this study and ahealthy alternative to improve their vitality. However, some participants inthe study felt more tired after exercise. On the one hand, some informantsassociated tiredness caused by physical activity to relaxation and pain reduc-tion. The production of endorphins with exercise (Carrasco, Villaverde, &Oltras, 2007) is a potential mechanism for producing this sense of relaxation.On the other hand, other informants associated tiredness caused by physicalactivity with more stiffness and pain. Thus, the reduction of pain, stiffness,and fatigue seemed to be related to a specific type of exercise and intensity,and therefore not all physical activities are recommended. Women reportedbenefits from controlled moderate physical exercises of the program, butthey declared that excessively intense activities according to their fitness levelor daily-life repetitive activities (e.g., housework) increased their pain, stiff-ness, or fatigue. Damsgard and colleagues (2011) also reported that womenwith chronic pain experienced daily and work physical activities negativelybut exercise as positive, as exemplified by two women who lifted weightsregularly for exercise but complained about lifting weights at work. Otherresearchers, such as Hallberg and Bergman (2011), have also concluded thatif physical activity is too demanding or women force themselves to exagger-ate the activity, the pain and stiffness will increase rather than decrease. Asnoted by Busch and colleagues (2011), it is important to consider possibleadverse effects when evaluating the benefits of exercise for people with FM.

Finally, FM physical symptoms may cause a decrease in functional inde-pendence overtime and eventually severe disability (Jones et al., 2010).Moreover, as explained by Vlaeyen and colleagues (1995), patients withchronic pain may become fearful of exercise, anticipating that these activ-ities will increase their pain and suffering. This avoidance of exercise mayhave negative consequences, both physically (e.g., loss of strength, mobil-ity, and physical function) and psychologically (e.g., loss of self-esteem

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and depression). Ellingson and colleagues (2012) recently demonstrated thatwhile physical activity is positively related to brain responses during dis-traction from pain in different areas involved in pain modulation, sustainedsedentary behavior is negatively associated with pain regulation in FM. Fearof pain and being sedentary may result in a reduction of both physical andsocial activities, leading to a cycle of inactivity, pain, and disability (Vlaeyenet al., 1995). Women with FM in the current study were very aware of thisdangerous circle and made a strong effort for keeping active. This find-ing enhances the importance of exercise for women with FM, being veryimportant to remark that physical inactivity is a very important risk factor fordisability and eventually loss of autonomy in this population.

Perceived Psychosocial Benefits

The social isolation, frustration, and depression reported by some partici-pants in this study were in line with findings seen in the literature (Arnoldet al., 2008; Cudney et al., 2002; Lempp et al., 2009). As noted by Juuso andcolleagues (2011), women with FM must cope with the physical limitationsimposed by the “invisible” symptoms of FM, but they also suffer the lackof understanding by others, their disbelief and lack of credibility, and theconsequent social stigmatization and marginalization (Asbring & Narvanen,2002). This situation harms the dignity of FM patients, causing significantemotional pain; feelings of anger, sadness, and frustration; the deteriorationof their self-esteem; and depression (Cudney et al., 2002; Juuso et al., 2011;Lempp et al., 2009; Söderberg, Lundman, & Norberg, 1999).

The exercise program offered women participating in this study anopportunity for coping with this psychosocial burden of FM. First, the pro-gram let them improve their social life. This was especially important forsome women who, besides having FM limitations, were housewives livingsomewhat lonely lives. Furthermore, women in the program felt understoodand believed by people with the same problem, so the common problem ofstigma faced by these women (Asbring & Narvanen, 2002) disappeared inthis setting. No one thought they were making up their pain or fatigue. Theydid not have to pretend or use a “healthy façade” to be socially accepted(Hallberg & Bergman, 2011).

Not surprisingly, meaningful relationships were established amongwomen, with constant signs of camaraderie, support, and mutual help.This social network was crucial for them to cope with FM and improvetheir HRQL. In line with these findings, other studies have also stressedthe importance of feeling understood, sharing experiences with other FMpatients, and receiving social support to cope with FM (Juuso et al.,2011; Sallinen, Kukkurainen, & Peltokalli, 2011). The supportive socialnetwork identified in this study was favored by the specific dynamicsof the exercise program. Physical exercise in groups can have a higher

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socializing effect compared to other sedentary leisure activities, because itis commonly characterized by higher levels of verbal, bodily, and socialinteraction.

Participants also reported feeling safe, well-advised, and attended toby the instructor of the exercise program. This circumstance was especiallyimportant for these women who suffer from a chronic condition and havemany doubts about the diagnosis, causes, and treatment (Juuso et al., 2011)and sometimes have had negative experiences with physicians and otherhealth care professionals (Söderberg et al., 1999).

Finally, participants in the exercise program learned and developed apositive attitude for facing FM. The contagious positive attitude of somewomen was crucial for dealing with their syndrome. They showed a willto be healthier, cope with FM, and be happy despite FM. Humor wasfrequently used as a mechanism for dealing their health issues and life prob-lems. Cudney and colleagues (2002) also pointed out the use of humor anddistraction as coping mechanisms.

As participants themselves reported, the positive social atmosphereof the program was very different from the negative one lived in othergroups with people with FM or other pathologies. Furthermore, the reliefof finding an activity that alleviated their physical symptoms and theirsocially stigmatized condition as women with FM contributed significantlyto this better attitude and subjective well-being. This ability of coping withthe distresses of life with a positive attitude, thoughts, and emotions isassociated with well-being (Schickler, 2005), and other studies have alsohighlighted the importance of thinking positively to cope with FM (Cudneyet al., 2002; Juuso et al., 2011). This positive attitude was crucial, becausethese women must deal with a chronic condition while avoiding mak-ing it a catastrophe (i.e., “an attentional bias toward negative aspects andexaggeration of the situation”) (Vlaeyen et al., 1995, 237), which is associ-ated with increased distress and pain (Vlaeyen et al., 1995). As noted byCudney and colleagues (2002, 1), “it is not a question of curing the dis-ease, but of maintaining the highest quality of life possible while makingthe emotional adjustments and living with the changes in lifestyle that FMimposes.”

Women with FM cannot go back to their previous lives before FM. Inspite of this syndrome, they must find meaning and purpose in life as a keycomponent of well-being (Schickler, 2005). A new self must emerge with dif-ferent expectations and goals in life (Shariff et al., 2009), and some womenwith FM find their meaning and purpose in life in helping others (Jusso etal., 2011). In this sense, the presence in the current study of women whoradiated happiness and showed a powerful will to overcome problems andhelp others was very important. This global attitude in life had a remark-able positive effect on the HRQL of women with FM themselves and thosearound them.

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Limitations and Future Research

Among the strategies used to enhance the quality of the data (see Methods),a strength of this study was the combination of parallel processes of datacollection and analysis in the field and the triangulation of qualitative tech-niques. Both strategies allowed the confirmation of the information and adeeper understanding of the study phenomena. However, some limitationsmust be recognized. First, the transcripts were not independently coded bymore than one coder with checking and reconciliation of discrepancies incoding, thus reducing the quality control of coding. The study was carriedout with a small sample and had the potential for selection bias, given thatmost participants were recruited through a single physician. The character-istics of the instructor, the participants, and the exercise program could bequite different in other settings. These issues limit the generalizability ofthe results, and further studies must be undertaken using larger, more rep-resentative samples of women with FM from different social and culturalcontexts.

The results indicated that not every type of exercise was good forwomen with FM, but further research from both qualitative and quantita-tive perspectives is required to determine the most effective type, intensity,duration, and frequency of exercise for the management of FM. For this pur-pose, a rigorous control of the exercise load of participants will be necessary,something that was beyond the scope of this qualitative study. Furthermore,considering the results of this study, it would be of interest to compare dif-ferent physical activities according to their mind-capturing/distracting effectthat might result in pain gaps.

Studies focusing on the adherence to exercise programs are alsoneeded. The potential effect of exercising in groups for better adherencealso deserves further research. The role of fun and humor should also beconsidered in future work.

CONCLUSIONS

The results of this study may contribute to a deeper understanding of thephysical and especially psychosocial benefits of exercise in women with FM.According to the current findings, taking part in a long-term, group-basedexercise program may help women with FM to cope better with thephysical (pain, stiffness, reduced physical function) and psychosocial (socialisolation, frustration, depression) double burden of their condition. Somebenefits may be attributed to direct effects of physical activity, while otherscan be attributed to the social component of the exercise program. Thecombination of these positive effects noticeably improved the HRQL ofthe women participating in this study. Although not generalizable, these

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encouraging results suggest that group-based exercise therapy may bepalliative in women with FM.

Future exercise programs for women with FM should consider thefollowing:

● The inclusion of mind-capturing/distracting tasks to increase the pain-inhibiting effects of exercise therapy. Nevertheless, engagement in thesetasks should be controlled by the instructor to avoid possible falls orinjuries, making compatible motivation and fun with safety.

● The possible adverse effects of excessively intense physical activities.Women with FM must feel free to do the exercise in the intensity withwhich they feel comfortable, adjusting the exercise load to their fitnesslevel.

● The strong connection between inactivity and disability, which could bea good argument to promote adherence to exercise programs in womenwith FM.

● A positive social atmosphere for promoting social benefits. Instructors ofexercise programs for women with FM should identify women with anoptimistic and caring profile and ask them for their collaboration to createmutual help social networks in their exercise programs. Humor should alsobe promoted.

● Finally, women with FM should be attended by respectful, sensitive, andqualified professionals with specific training in FM. In this sense, it wouldbe desirable the collaboration of interdisciplinary teams (e.g., rheumatol-ogists, family doctors, physiotherapies, nurses, psychologists, sport andexercise sciences professionals) to design and implement high qualityexercise programs for women with FM.

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