Whether we call it “widespread pain”, fibromyalgia, or any of the myriad other names it’s been given over centuries, pain that occurs in all four quadrants of the body and is accompanied by poor sleep, low mood, and “foggy thinking” is common. I can say this because a soon-to-be published meta-analysis of widespread pain (aka fibromyalgia) has found that approximately 10 – 15% of the population (or more accurately 11.8% with 95% confidence intervals of 10.3 to 13.3) report widespread pain of this type (Mansfield, Sim, Jordan, Jordan & Jordan, in press). More women than men report it, and those over 40 years old were also more likely to report it. Curiously (or not) these researchers found differences in prevalence depending on geographic variation and some cultural differences.
Diagnostic labels, and how we determine who is ill and who isn’t, is a field of study I’m fascinated by. Not so long ago, women with “the vapours”, or fainting spells, were considered to have “hysteria” or “wandering womb”. Low back pain has been variously painted as “railway spine”, rheumatism, lumbago, evil humours, “inflammation of the white fibrous tissue of the body” – and yes, the discs, degeneration of the joints, spinal irritation, nerve roots, facet joints …. ad infinitum (Allan & Waddell, 1989). Designating a set of human experiences as a particular form of health problem, and therefore worth treating has enormous implications for the individual, the treater and society. (For a longer paper on historical approaches to back pain, go here.
An interesting study by Adlrich and Eccleston (2000) looked at a social construction of what “everyday pain” means to a wide range of people. Using Q sort, which involves generating a big number of statements about the topic, then asking people to sort those statements into various piles with similar meanings, these researchers found that people believe that pain is a sign of malfunction; pain-as-self-growth (it makes us who we are, pain is essential for survival); pain-as-spiritual-growth (pain is an essential part of being human and makes the sufferer stronger through spiritual growth); pain-as-alien-invasion (pain is something external that invades and takes over who we are); pain-as-coping-and-control (pain gives us necessary information to alert us); pain-as-abuse (a negative experience inflicted upon individuals from powerful others); pain-as-homeostatic-mechanisms (regulates and shouldn’t be fought against); and finally pain-and-power (pain should not be used to obtain power over another).
Back to fibromyalgia. FM has a complex history. I think I mentioned a couple of weeks back that the orthopaedic surgeons I work with said to me “Is that even a thing?” when I mentioned my interest in this widespread pain problem. What? 11% of the population experiences it, and they wonder if it’s a “thing”?! The problem with FM is that there’s no imaging technique, no blood test, no objective method for diagnosing it – but there are a constellation of studies that have given us some ideas about how people with FM differ from those who don’t. Things like the pressure point threshold – the pressure at which pain is reported when a small pointed thing is poked into the skin (without breaking the skin); problems with descending inhibition in quantitative sensory testing; changes in brain structure such as increased functional connectivity. But of course, these things can’t be carried out in routine examinations – or could they?
In the study by Mansfield and colleagues, the justification for conducting a meta-analysis was that to plan interventions and develop a rationale for prioritising the condition requires data. Clinicians need to know the underlying prevalence so they can factor this problem in when they’re trying to diagnose a disorder. If a problem is fairly widespread in the population, and particularly amongst certain groups of people (women, middle-aged, and from certain geographical areas) then it’s worth knowing about, particularly if there are implications for problems, say after surgery.
The question occurring to me is, if this problem is as widespread as indicated by Mansfield, Sim, Jordan & Jordan (in press), why are there so many health professionals who don’t know about it?
Is it because it occurs more in women than men? There’s some research suggesting that when women attend for care, their treatment is different from men (Bernardes, & Lima, 2011, Richardson & Holdcroft, 2009; Stenberg, Fjellman-Wiklund & Ahlgren, 2012; Werner & Malterud, 2003)), and women’s pain from heart attack differs from mens (more diffuse, not always that left-sided, crushing pain), while women may be prescribed more medications for mood management when men are given analgesia. While women are over-represented in chronic pain statistics, they are not studied in experimental studies nearly as often as men. But men find it far more difficult to deal with the “masculinity” scripts within society and their experience of being disabled with chronic pain – it’s very hard to be “manly” and strong when you hurt all over (Ahlsen, Mengshoel, Sobrakke, 2012).
Is it because there are no “objective” diagnostic tests? Fibromyalgia can be a “diagnosis of exclusion”, the diagnosis a person gets given once all the diagnostic tests come back with no abnormality detected. But to me this doesn’t make a lot of sense – there’s no argument about the common headache, yet there’s no diagnostic test for that. I wonder if the old lumbago problem would be in a similar category had the anatomy of the spine not had quite such a lot of impact.
Is it because it’s been a diagnostic hot potato for a long time? What I mean by this is it’s had so many names and proposed mechanisms that no-one believes it’s “real” any more. Well, maybe, but are back pain, CRPS or whiplash any different?
I’m not sure why fibromyalgia has such deniability amongst a group of health professionals, and I’m sure cynics reading this will suggest something about not being able to use a scalpel on it, but I’m not convinced it’s simply that, either. The thing is, fibromyalgia by any name is common and has profound consequences for people who live with it. It’s hard to make sense of. It defies a simply Cartesian “body/mind” split. It exhausts and fogs and constrains life for many people. It complicates recovery from surgery, influenza, even concussion. It’s hard to explain – drawing on the term “central sensitisation” can bring on arguments about tautology (how can pain be explained by the presence of pain?). There are few treatments, and these have a very limited effect.
At the same time as wanting fibromyalgia to be recognised by my colleagues, I don’t want to suggest a hard-out diagnosis awareness campaign. The risks of people being mislabelled, or diagnosed correctly but then unhelpfully managed or even given a label that invites derision, is at this point in history far too great. Mostly I’d just like people living with fibromyalgia to realise that although it’s “real” it doesn’t need to define who we are.
Ahlsen, Birgitte, Mengshoel, Anne M., & Solbrække, Kari N. (2012). Troubled bodies – troubled men: a narrative analysis of men’s stories of chronic muscle pain. Disability & Rehabilitation, 34(21), 1765-1773. doi: 10.3109/09638288.2012.660601
Aldrich, Sarah, & Eccleston, Chris. (2000). Making sense of everyday pain. Social Science & Medicine, 50(11), 1631-1641. doi: http://dx.doi.org/10.1016/S0277-9536(99)00391-3
Allan, David B, & Waddell, Gordon. (1989). An historical perspective on low back pain and disability. Acta Orthopaedica, 60(s234), 1-23. doi: doi:10.3109/17453678909153916
Bernardes, Sonia F., & Lima, Maria Luisa. (2011). On the contextual nature of sex-related biases in pain judgments: The effects of pain duration, patient’s distress and judge’s sex. European Journal of Pain, 15(9), 950-957.
Bernardes, Sonia F., & Lima, Maria Luisa. (2011). A contextual approach on sex-related biases in pain judgements: The moderator effects of evidence of pathology and patients’ distress cues on nurses’ judgements of chronic low-back pain. Psychology & Health, 26(12), 1642-1658.
Mansfield, Kathryn E., Sim, Julius, Jordan, Joanne L., & Jordan, Kelvin P. A systematic review and meta-analysis of the prevalence of chronic widespread pain in the general population. Pain.
Richardson, Jen, & Holdcroft, Anita. (2009). Gender differences and pain medication. Women’s health, 5(1), 79-90.
Stenberg, G., Fjellman-Wiklund, A., & Ahlgren, C. (2012). “Getting confirmation”: gender in expectations and experiences of healthcare for neck or back patients. J Rehabil Med, 44(2), 163-171. doi: 10.2340/16501977-0912
Werner, Anne, & Malterud, Kirsti. (2003). It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409-1419.