Fibromyalgia onset has high impact on work ability in

Australians

Emma K. Guymer*
Adjunct Lecturer, Department of Medicine, Monash University and Rheumatologist, Department of
Accepted Article
Rheumatology, Monash Health

Geoffrey O. Littlejohn
Emeritus Professor, Department of Medicine, Monash University and Department of Rheumatology,
Monash Health

C. Kaye Brand
Fibromyalgia Support Network of Western Australia

Richard A. Kwiatek
Rheumatologist, Northern Adelaide Local Health Network

Author contributions:
EG, GL and RK contributed significantly to the conception, design and implementation of the project.
All were involved in interpretation of data, drafting and revision of the work.
CKB contributed to the design and implementation of the project.
All authors approved the final version of the work and agree to accountability in all aspects.

*Corresponding Author:
Dr Emma Guymer
Department of Rheumatology
Monash Medical Centre
246 Clayton Rd
Clayton, 3168, Victoria, Australia
+61 3 95943565
emma.guymer@monash.edu

Acknowledgements: No funding was received for this project.

The authors have no relevant disclosures.

This article has been accepted for publication and undergone full peer review but has not
been through the copyediting, typesetting, pagination and proofreading process, which
may lead to differences between this version and the Version of Record. Please cite this
article as doi: 10.1111/imj.13135

This article is protected by copyright. All rights reserved.

 ABSTRACT

Although the disabling effects of fibromyalgia (FM) are well recognised, there are no
published data regarding the impact of fibromyalgia on work ability in Australians.
The impact of the development of fibromyalgia symptoms on ability to work in
Australians was explored in a pilot survey project.
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Method Members of the Fibromyalgia Support Network of Western Australia were
invited to undertake an anonymous online survey. Information was gathered regarding
demographics, symptom onset, the timing of diagnosis, employment status and changes
in the ability to work.
Results 287 responses were analysed. 90.6% of respondents were female, mean
age 51.1 10.6 years and had experienced symptoms between 2 to 20 years. 52.8%
were diagnosed less than 5 years previously.
54.2% were working full-time and 21.5% working part time at symptom onset,
however only 15.6% were currently working full time, with 44.8% not currently
working at all.
24.3% stopped and 32.6% reduced paid work directly because of fibromyalgia within 5
years of symptom development, with 15.3% ceasing and an additional 17.4% reducing
work because of symptoms before diagnosis.
35.1% currently received financial support because they were unable to work due to
FM symptoms.
24.3% reported fibromyalgia medication increased their ability to work, while 20.8%
reported it reduced their ability to work.
Conclusion A community pilot survey of Australians with fibromyalgia indicates a
high impact on work ability. This occurs from symptom onset and often before
diagnosis. Early diagnosis and intervention may provide a window of opportunity to
prevent work disability in fibromyalgia.

Key Words: Fibromyalgia, Work Ability, Employment, Australian, Survey

INTRODUCTION

Fibromyalgia is a chronic illness that affects approximately 2.7 % of the population globally,

predominantly women, and is the fourth most prevalent rheumatic disorder after

osteoarthritis, periarticular disease and spinal pain1-5. Key clinical features of fibromyalgia

include widespread musculoskeletal pain and tenderness, poor quality unrefreshing sleep,

significant levels of fatigue, cognitive disturbances, and high levels of distress6.

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 Fibromyalgia pathophysiology is characterised by changes in the central nervous system

that alter the processing of sensory input and can be grouped under the term central

sensitivity7. These central nervous system changes are often triggered by physiological or

psychological stress8, 9.
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Fibromyalgia is a disabling illness. Patients with fibromyalgia experience significant

reduction in functional ability and health-related quality of life compared to people without

fibromyalgia, including those with other chronic illness or rheumatic disease10, 11 12 13-15.

This results in an increased resource and financial burden on individuals and the broader

community 13, 14. Fibromyalgia affects peoples ability to fulfil work roles, resulting in

reduced work capacity, presenteeism (coming to work despite health or personal issues,

often resulting in a loss of productivity), absenteeism, and inability to work16, 17. Social

support networks are accessed by many, and several large American studies have reported

between 30.2% - 34.8% of fibromyalgia patients were receiving Social Security and

Supplemental Security Income or disability payments18, 19.

Change in the ability to work is an important issue to understand as it provides a more

objective indicator of ability to function than other general self-report measures. Apart

from significant financial costs, further significant detriment to the individual also occurs.

Lower levels of social connectedness, sense of self-worth and psychological and physical

health are linked to loss of work more generally20-23 all of which have a negative impact on

society as a whole.

There is limited data regarding how quickly work ability changes after the onset of

fibromyalgia, although an American study revealed the commencement of Social Security

Disability and Supplemental Security Income payments in a group of fibromyalgia patients

had an annual incidence of 3.4%18.

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 There is no Australian data available regarding the effects of fibromyalgia on capacity for

work. The Australian Government Disability Support Pension projected expenditure was

$15,374 million in 2013-1424, and 26.1% is received by people with musculoskeletal and
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connective tissue conditions, including fibromyalgia, who are no longer able to work due to

their poor health25. This, however, does not provide insight into the many other facets of

work ability, such as a reduction in hours, modification of duties, or how quickly these

changes occur after illness onset.

The aim of this investigation was to explore the effect of fibromyalgia symptoms, diagnosis

and treatment on ability to work in Australian patients.

METHODS A pilot project was initiated in a community group of

Australians diagnosed with fibromyalgia. The project was approved by the Monash

University Human Research Ethics Committee. All members of the Fibromyalgia Support

Network of Western Australia (FSNWA) were invited via email and regular newsletter to

undertake a simple, anonymous online survey (Figure 1). The survey was comprised of 12

questions enquiring about demographic information, symptom onset, diagnosis,

employment status and changes to work ability since symptom onset and diagnosis. Survey

participation required the distribution of an anonymous, random, single-use access code

from the Fibromyalgia Support Network of Western Australia, to ensure participants were

genuine members of the organisation, and the survey was completed only once by each

participant. No financial or other reward was offered for survey completion.

RESULTS The invitation to participate in the survey was emailed to the

entire membership of the FSNWA (n=1648). 288 responses [17.4%] were received over a

three-month period from January to March 2015. All participants had been diagnosed with

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 fibromyalgia by a doctor or health professional (78% by a rheumatologist). 90.6% of

participants were female, with a mean age 51.1 10.6 years. Participants had been

experiencing fibromyalgia symptoms spread evenly between 2 to over 20 years, however in

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52.8% of participants the diagnosis of fibromyalgia was made less than 5 years previously.

The diagnosis of fibromyalgia therefore often occurred much later than the onset of

symptoms.

The percentage of participants engaged in work (not including housework) at time of

symptom onset, diagnosis and currently is displayed in Figure 2.

54.2% of respondents had been working full-time and 21.5% working part time at the time

of symptom onset, however only 15.6% were currently working full time, with 44.8% not

currently working at all.

Overall, 52.8% of participants reported they had reduced their work (not including

housework) and 47.2% reported eventually ceasing work because of their fibromyalgia

symptoms.

Figure 3 displays how long after symptom onset these changes in work status occurred, and

whether this was before or after their diagnosis. 24.3% of all participants ceased and 32.6%

reduced work because of fibromyalgia within 5 years of developing symptoms.

In 32.7% of all participants, this cessation or reduction in work occurred before a diagnosis

was made.

The proportion of respondents who were receiving financial support payments is displayed

in Figure 4. 35.1% of participants reported currently receiving government or private

financial support payments because their fibromyalgia symptoms resulted in reduced ability

to work (not including 4.2% receiving the age pension). 19.4% of respondents reported

receiving the disability support pension.

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 24.3% of participants stated that taking fibromyalgia medication increased their ability to

work, while 20.8% stated taking fibromyalgia medication reduced their ability to work.
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DISCUSSION The concept of work ability involves the complex balance

between personal resources and work demands26. This clearly is dependent on multiple

factors intrinsic to both the individual and the form of employment. There are a myriad of

ways an illness such as fibromyalgia can influence these factors. The self-reported

information from this brief survey begins to describe the real-life impact that the

development of fibromyalgia clinical features has on the ability of sufferers to work. There

is a large reduction in the number of people able to sustain full-time employment, with the

percentage of survey participants working full-time dropping from 54% at time of diagnosis,

to only 16% at the time of the survey. This picture of significant detriment to work ability

linked to the symptoms of fibromyalgia is consistent with previously published data. In the

United States, a survey found 50% of 203 subjects had some level of disruption in their

employment due to fibromyalgia, with the extent of this disruption linked to symptom

severity27. A recent analysis of 8446 respondents to the United States 2012 National Health

Interview Survey identified that 55.8% people under 65 years of age with fibromyalgia were

unable to work now because of their health, compared to 5.8% without fibromyalgia19. In

several previous investigations, employees with fibromyalgia have been shown to miss

significantly more days of work during the year than employees without fibromyalgia28, 29. A

multinational survey of 800 fibromyalgia patients revealed 22% were unable to work and

25% were only able to work sometimes because of their fibromyalgia30. This survey found

that fibromyalgia patients waited for an average of almost one year after symptom onset

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 before presenting to a medical practitioner, and then an average of 2.3 years before a

diagnosis was made.

Many respondents in our current investigation reported that the reduction or cessation in
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their ability to work occurred in this time window between symptom onset and diagnosis,

and the majority described these changes as occurring less than 5 years after symptom

onset. This highlights the early impact of fibromyalgia symptoms on work ability, and the

possibility that earlier recognition and management of these symptoms can reduce this

detrimental effect. Previous work has suggested that women with fibromyalgia who

successfully remained working were more able to control their symptoms after a

rehabilitation program resulted in the use of action-oriented coping strategies31, and that

factors promoting sustainable work in women with fibromyalgia involved the development

of individual physical and psychological strategies which were personally relevant32. Early

engagement in programs and therapies designed to support the development of such

strategies may be effective in preventing this early decline in work ability and maintain the

capacity for employment.

It is notable that the rate of loss of employment due to fibromyalgia reported here appears

worse than that reported for loss of employment due to rheumatoid arthritis in both

Australia33 and the United Kingdom34.

The number of people accessing financial support payments is similar to previous Australian

data. In a cohort of patients attending an Australian tertiary hospital outpatient clinic with a

diagnosis of fibromyalgia, 41.3% were receiving disability or other pension payments35.

Almost a similar number of respondents reported that their fibromyalgia medication

impaired their ability to work as those who reported it as improving their ability to work.

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 This presumably links to the significant medication adverse effect profile experienced by

many fibromyalgia patients, and alludes to the complexities of fibromyalgia management.

There are several limitations to this current study. The project was developed as a brief,
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pilot survey to gain a snapshot into the real-word changes occurring in the community for

people who develop fibromyalgia. As such, the questionnaire was brief, simple and unable

to assess the many nuances that surround the complex issue of the capacity to work. The

definition of work ability in this survey was left to be interpreted by the survey respondents,

in order to understand the actual situation occurring at this community level.

The response rate to this survey (17.4%) was low, however the absolute number of

responses was comparable to previously published surveys of fibromyalgia work ability16, 36

and other online surveys with similar methodology and patient groups37, 38. There may be

many reasons for this. The membership of the network has a varied composition, including

people suffering from fibromyalgia, their families, and health professionals with an interest

in the area. Some members of the network therefore may not have a diagnosis of

fibromyalgia. As such, the response rate from members of the network who have

fibromyalgia themselves is likely to be higher than 17%. Additionally, the survey invitation

was sent to the email address registered with the FSNWA, which may no longer be a

relevant address. The process involved in accessing the survey required sending an email to

the FSNWA requesting an access code. This additional step, while necessary to ensure

anonymity and single responses, may have resulted in fewer people responding or self-

selected a population of more proactive respondents or those with more severe illness and

likelihood of employment impact. An assessment of the background socioeconomic factors

in the state of Western Australia at the time of this survey was not performed, however

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 these factors will need to be considered when planning future more comprehensive studies

on work ability in patients with fibromyalgia.

.
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CONCLUSION This pilot community survey, the first investigation into work

ability in Australian fibromyalgia patients, indicates an apparent high impact of fibromyalgia

symptoms on ability to work. This occurs early after symptom onset, and often before a

diagnosis is made. Further investigation may characterise these findings more clearly, and

discern whether early diagnosis and intervention can provide a window of opportunity to

prevent work disability in Australians with fibromyalgia.

REFERENCES

1 Wolfe F, Ross K, Anderson J, Russell IJ, Hebert L. The prevalence and

characteristics of fibromyalgia in the general population. Arthritis and rheumatism.
1995; 38: 19-28.
2 Lawrence RC, Felson DT, Helmick CG, Arnold LM, Choi H, Deyo RA, et al.
Estimates of the prevalence of arthritis and other rheumatic conditions in the United
States. Part II. Arthritis and rheumatism. 2008; 58: 26-35.
3 Branco JC, Rodrigues AM, Gouveia N, Eusebio M, Ramiro S, Machado PM, et al.
Prevalence of rheumatic and musculoskeletal diseases and their impact on health-
related quality of life, physical function and mental health in Portugal: results from
EpiReumaPt- a national health survey. RMD open. 2016; 2: e000166.
4 Queiroz LP. Worldwide epidemiology of fibromyalgia. Current pain and headache
reports. 2013; 17: 356.
5 Helmick CG, Felson DT, Lawrence RC, Gabriel S, Hirsch R, Kwoh CK, et al.
Estimates of the prevalence of arthritis and other rheumatic conditions in the United
States. Part I. Arthritis and rheumatism. 2008; 58: 15-25.
6 Arnold LM, Clauw DJ, McCarberg BH. Improving the recognition and diagnosis of
fibromyalgia. Mayo Clinic proceedings. 2011; 86: 457-64.
7 Clauw DJ, Arnold LM, McCarberg BH. The science of fibromyalgia. Mayo Clinic
proceedings. 2011; 86: 907-11.
8 Phillips K, Clauw DJ. Central pain mechanisms in chronic pain states--maybe it is
all in their head. Best practice & research Clinical rheumatology. 2011; 25: 141-54.

This article is protected by copyright. All rights reserved.

 9 Nilsen KB, Sand T, Westgaard RH, Stovner LJ, White LR, Bang Leistad R, et al.
Autonomic activation and pain in response to low-grade mental stress in fibromyalgia
and shoulder/neck pain patients. Eur J Pain. 2007; 11: 743-55.
10 Wolfe F, Michaud K, Li T, Katz RS. EQ-5D and SF-36 quality of life measures in
systemic lupus erythematosus: comparisons with rheumatoid arthritis,
noninflammatory rheumatic disorders, and fibromyalgia. The Journal of rheumatology.
2010; 37: 296-304.
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11 Perruccio AV, Power JD, Badley EM. The relative impact of 13 chronic conditions
across three different outcomes. Journal of epidemiology and community health. 2007;
61: 1056-61.
12 White KP, Speechley M, Harth M, Ostbye T. Comparing self-reported function and
work disability in 100 community cases of fibromyalgia syndrome versus controls in
London, Ontario: the London Fibromyalgia Epidemiology Study. Arthritis and
rheumatism. 1999; 42: 76-83.
13 Verbunt JA, Pernot DH, Smeets RJ. Disability and quality of life in patients with
fibromyalgia. Health and quality of life outcomes. 2008; 6: 8.
14 Skaer TL. Fibromyalgia: disease synopsis, medication cost effectiveness and
economic burden. PharmacoEconomics. 2014; 32: 457-66.
15 Birtane M, Uzunca K, Tastekin N, Tuna H. The evaluation of quality of life in
fibromyalgia syndrome: a comparison with rheumatoid arthritis by using SF-36 Health
Survey. Clinical rheumatology. 2007; 26: 679-84.
16 Al-Allaf AW. Work disability and health system utilization in patients with
fibromyalgia syndrome. Journal of clinical rheumatology : practical reports on rheumatic
& musculoskeletal diseases. 2007; 13: 199-201.
17 Chandran A, Schaefer C, Ryan K, Baik R, McNett M, Zlateva G. The comparative
economic burden of mild, moderate, and severe fibromyalgia: results from a
retrospective chart review and cross-sectional survey of working-age U.S. adults.
Journal of managed care pharmacy : JMCP. 2012; 18: 415-26.
18 Wolfe F, Walitt BT, Katz RS, Hauser W. Social security work disability and its
predictors in patients with fibromyalgia. Arthritis care & research. 2014; 66: 1354-63.
19 Walitt B, Nahin RL, Katz RS, Bergman MJ, Wolfe F. The Prevalence and
Characteristics of Fibromyalgia in the 2012 National Health Interview Survey. PloS one.
2015; 10: e0138024.
20 Krantz G, Ostergren PO. Common symptoms in middle aged women: their
relation to employment status, psychosocial work conditions and social support in a
Swedish setting. Journal of epidemiology and community health. 2000; 54: 192-9.
21 Dew MA, Bromet EJ, Penkower L. Mental health effects of job loss in women.
Psychological medicine. 1992; 22: 751-64.
22 Voss M, Chen J. Health Status After Job Loss: Does the Reason for Job Change
Matter? Journal of occupational and environmental medicine / American College of
Occupational and Environmental Medicine. 2015; 57: 1319-24.
23 McKee-Ryan F, Song Z, Wanberg CR, Kinicki AJ. Psychological and physical well-
being during unemployment: a meta-analytic study. The Journal of applied psychology.
2005; 90: 53-76.
24 Government A. Budget Figures. 2012-13.
25 Government A. Characteristics of Disability Support Pension Recipients. In:
Services DoS (ed.). 2013; 21.

This article is protected by copyright. All rights reserved.

 26 Ilmarinen J. Work ability--a comprehensive concept for occupational health
research and prevention. Scandinavian journal of work, environment & health. 2009; 35:
1-5.
27 Schaefer C, Chandran A, Hufstader M, Baik R, McNett M, Goldenberg D, et al. The
comparative burden of mild, moderate and severe fibromyalgia: results from a cross-
sectional survey in the United States. Health and quality of life outcomes. 2011; 9: 71.
28 White LA, Birnbaum HG, Kaltenboeck A, Tang J, Mallett D, Robinson RL.
Accepted Article
Employees with fibromyalgia: medical comorbidity, healthcare costs, and work loss.
Journal of occupational and environmental medicine / American College of Occupational
and Environmental Medicine. 2008; 50: 13-24.
29 Boonen A, van den Heuvel R, van Tubergen A, Goossens M, Severens JL, van der
Heijde D, et al. Large differences in cost of illness and wellbeing between patients with
fibromyalgia, chronic low back pain, or ankylosing spondylitis. Annals of the rheumatic
diseases. 2005; 64: 396-402.
30 Choy E, Perrot S, Leon T, Kaplan J, Petersel D, Ginovker A, et al. A patient survey
of the impact of fibromyalgia and the journey to diagnosis. BMC health services research.
2010; 10: 102.
31 Lofgren M, Ekholm J, Ohman A. 'A constant struggle': successful strategies of
women in work despite fibromyalgia. Disability and rehabilitation. 2006; 28: 447-55.
32 Palstam A, Gard G, Mannerkorpi K. Factors promoting sustainable work in
women with fibromyalgia. Disability and rehabilitation. 2013; 35: 1622-9.
33 Shanahan EM, Smith M, Roberts-Thomson L, Esterman A, Ahern M. Influence of
rheumatoid arthritis on work participation in Australia. Internal medicine journal. 2008;
38: 166-73.
34 McWilliams DF, Varughese S, Young A, Kiely PD, Walsh DA. Work disability and
state benefit claims in early rheumatoid arthritis: the ERAN cohort. Rheumatology
(Oxford). 2014; 53: 473-81.
35 Guymer EK, Maruff P, Littlejohn GO. Clinical characteristics of 150 consecutive
fibromyalgia patients attending an Australian public hospital clinic. International
journal of rheumatic diseases. 2012; 15: 348-57.
36 Liedberg, Gm, Bjork M. Symptoms of subordinated importance in fibromyalgia
when differentiating working from non-working women. Work. 2014; 48: 155-64.
37 Gray K, Martin-Sanchez F, Lopez-Campos G. Patient-Reported Outcomes and
Therapeutic Affordances of Social Media: Findings From a Global Online Survey of
People With Chronic Pain. Journal of medical Internet research. 2015; 17: 1-1.
38 Ressler PK, Bradshaw YS, Gualtieri L, Chui KK. Communicating the experience of
chronic pain and illness through blogging. Journal of medical Internet research. 2012;
14: e143.

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 FIGURE LEGENDS

Figure 1. The Fibromyalgia and Work Ability Survey

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Figure 2. The percentage of participants working at time of symptom onset, diagnosis and
currently.

Figure 3. The percentage of participants who ceased or reduced work due to their
fibromyalgia symptoms according to symptom duration or before diagnosis.

Figure 4. Types of financial support received by participants.

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 Fibromyalgia and work ability survey
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1. Have you ever been diagnosed with fibromyalgia?

2. What is your age in years?

3. Gender

4. How long have you had symptoms of fibromyalgia in years?

5. Were you working (not housework) at the time your fibromyalgia symptoms began?

6. How long ago were you diagnosed with fibromyalgia in years?

7. Were you working (not housework) at the time of your fibromyalgia diagnosis?

8. Are you working (not housework) now?

9a. Did you stop paid work directly because of fibromyalgia symptoms?
If so, how long after your SYMPTOMS STARTED?
9b. Did you stop paid work directly because of fibromyalgia symptoms?
If so, how long after your DIAGNOSIS?
10a. Did you reduce (but not stop) paid work directly because of fibromyalgia symptoms?
If so, how long after your SYMPTOMS STARTED?
10b. Did you reduce (but not stop) paid work directly because of fibromyalgia symptoms?
If so, how long after your DIAGNOSIS?
11. Are you currently receiving government or private financial support payments because
you are unable to work due to fibromyalgia symptoms?
12. Does taking fibromyalgia medication influence your ability to work?

Figure 1. The Fibromyalgia and Work Ability Survey

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 60

50

40
Full Time
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Part Time
30
Casual
Not Working
20
Unpaid/Vounteer

10

0
Symptom Onset Diagnosis Currently

FIGURE 2. The percentage of participants working at time of symptom onset,

diagnosis and currently

60

50

40

30 Stopped Work
Reduced Work
20

10

0
< 5yrs of 5 - 10 yrs of > 10 yrs of Before Diagnosis
Symptoms Symptoms Symptoms

FIGURE 3. The percentage of participants who ceased or reduced work due to

their fibromyalgia symptoms according to symptom duration or before diagnosis

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 Proportion receiving support payments
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Disability pension 19.4%

Work cover 1.4%
Newstart allowance 4.2%
Private income protection 1%
Superannuation 3.1%
Age pension 4.2%
Other 6.6%
None 64.9%

FIGURE 4. Types of financial support received by participants

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