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.
Bronnie, another important, thought-provoking post. And one that is going to make me own up to my own harsh truths. I, too, don’t understand why fibromyalgia is so denied, even vehemently so in some factions, in the healthcare community.
I hate to admit that I was once a part of this dismissive faction that didn’t (and perhaps they still don’t, although I hope things have changed) believe fibromyalgia was real. The worst part about it was that I was essentially taught that it wasn’t real when I was in paramedic school. The way fibromyalgia was presented was that it was a diagnosis of last resort among women who ‘claimed’ to have widespread pain and it was heavily implied that it wasn’t real because it couldn’t be measured or found on x-rays or scans.
This breaks my heart and angers me no end now that I know better, and now that I know pain better, both from a pain science perspective and as well as from a patient’s perspective (although I don’t have fibromyalgia, just chronic pain, persistent post-surgical pain, chronic low back pain, SIJ dysfunction – whatever you want to call it! It’s been called many things).
And now I know that pain isn’t in the tissues, it’s not found or accurately measured, no matter what the cause. And I no longer doubt the existence of fibromyalgia or any other unexplained pain, I now know that all pain is very, very real.
I was always a compassionate medic. I always treated my patients with kindness, I always tried to be empathetic and patient and understanding. But I know my doubts had to have seeped through on some of those calls I was on where I was assessing patients with a fibromyalgia diagnoses. I know that they had to have felt that doubt, despite my words, and I know they felt it even more so from my colleagues, who were indoctrinated in the same beliefs that this wasn’t a real thing, and even more so again in the emergency room where the doctor’s and nurses also felt this was a made up disease.
Oh, if only I knew then what I know now! But I can’t go back, I can only go forward and hope to do better, hope that I’ve been doing better.
When I was in the darkest period of my pain, it wasn’t always severe, it wasn’t a 10/10. It was more of a constant 4 or 5 that never let up, that never changed, that never showed signs of letting up. It ate away at me. It gave me a new appreciation for all those chronic pain patients who called 911 because they couldn’t take it anymore. I didn’t understand then how they could feel so desperate, so despairing, when their reported pain level was so low. I didn’t know what pain was until I went through it. That’s why I think those pain scales are useless. They give no indication of how the pain is affecting life and function, mood and mindset, relationships and ability to take care of ourselves.
As a medic, I knew a lot about treating and managing traumas, acute injuries, full arrests, drownings, anaphylaxis, ketosis, DKA, hypoglycemia, drug overdoses, asthma attacks – the big stuff, the immediately life-threatening stuff. I knew much less about treating and managing chronic conditions, yet many of the patients we ran on were calling 911 because of their inability, most often due to a lack of education and resources, to manage a chronic condition. Emergency services were their doctor, their support, their caretaker, which is an indication of just how broken healthcare is at so many levels.
So I’ve learned a lot since my medic days. And it angers me now that I was taught such misinformation in a highly esteemed paramedicine program. And that the doctors and nurses I worked with didn’t dissuade me from those erroneous beliefs because they were taught the same things, or were taught nothing of chronic pain at all other than drug doses and surgical referrals and were left to read the cues from those around them for those intractable cases where surgery and pills didn’t work or weren’t warranted.
Lots of sighs over here right now.
And my heartfelt apologies to anyone in chronic pain I ever treated who I may have doubted or misunderstood. I wish I would have known more and gave more reassurance, more belief and trust, more acknowledgement
Bronnie, I hate to admit this, but as a rheumatologist I was disappointed to find that, after having created this controversial condition in 1990, my colleagues failed to deliver the goods!
“Fibromyalgia” can equally refer to a symptom (chronic widespread pain), a syndrome (but more properly, a “symptom cluster”), or an incurable disease of unknown cause.
It is little wonder that confusion reigns for medicos, as well as for many of those awarded the label!
The striking resemblance of the symptom cluster in humans to the well-documented manifestations of the stress/sickness response in animals appeared to have been overlooked.
Accordingly, Pamela Lyon, Milton Cohen and I constructed an explanatory model for fibromyalgia that in our opinion begins to fill the large knowledge gap. Moreover it generates testable hypotheses [Lyon et al. 2011].
Our offering has been largely ignored by rheumatologists but I am pleased to note that it has been taken on board by those who are conducting PTSD research [Baldwin, 2013].
Baldwin DV. Primitive mechanisms of the trauma response: an evolutionary perspective on trauma-related disorders. Neurosci Biobehav Rev 2013; 37: 1549-1566.
Lyon P, Cohen ML, Quintner JL. An evolutionary stress-response hypothesis for chronic widespread pain (Fibromyalgia Syndrome). Pain Medicine 2011; 12: 1167-1178.
If only there was a way that our doctors could experience our pain. I wouldn’t be cruel about it; 30 seconds of pain at a 6-7 on the scale would be enough, I think. Can you imagine the surge of funds and effort to study and work to treat that pain? I don’t have fibromyalgia, but it appalls me that physicians and surgeons deride those who have it as nuts and malingerers. Physicians!
Yep. Thirty seconds ought to be enough.
Thanks for a thoughtful and very interesting read, as always. You’re a fine teacher. 🙂
I think that even if doctors (and other health care professionals) experienced pain, some of them wouldn’t be able to translate that experience into compassion and empathy for the people they want to help. I think it’s often a protective response in a person who is actually very empathetic but can’t deal with the emotions associated with seeing others in distress. I also think we need to teach health care professionals the particular actions that make up a compassionate response – maybe it’s something to do with HOW a person conveys caring that’s missing in some of the health consultations, or maybe it’s about not being paid/funded for the time it requires to do the compassionate things that help. All I can say is that the people in my PhD study all described health care providers who did that little something extra that showed the person that they were an individual. Maybe it was calling the person up to find out how they were doing; maybe drawing up a specific set of exercises; maybe finding an article online during their down time and sharing it with the person – all of these little things show that the practitioner is thinking about the person beyond the seven minutes of the consultation.
What do you think?
Lovely, article Bronnie, thank you, have shared to our clinic facebook page.
We are seeing a large amount of diagnosed fibromyalgia patients at our clinic and are about to start a clinical audit for outcomes with a Rheumatologist who totally “gets” it.
Keep up the good work.
Thanks so much Helen, it makes my day! Let me know if there’s anything I can do to help with your audit.
Coincidentally, yesterday afternoon I had a new patient assessment with a patient diagnosed with fibromyalgia and they said the very words “my employer said is that even a thing?”.
I knew exactly where to direct her to to help with her validation!!!
Re the audit, thanks for the offer. I am simply looking at data collection: pre and post treatment outcome measures at this moment.
Currently trying to decide which measures to use. Do you have any thoughts?
Keep up the great work
Laughing at the timing!!
I’d be starting with the Fibromyalgia Impact Questionnaire, then some around catastrophising, disability, mood, and probably pain anxiety (I like the PASS-20 by McCracken and colleagues). If you’re looking at acceptance, the Chronic Pain Acceptance Questionnaire is good.
Bronnie, I absolutely love this post and all your work that I’ve seen so far. I can’t say enough how your words have both comforted and inspired me. Thank you, thank you, thank you for what you do!!
Ashley, when people like you say this, I know I’ve done a good job. How cool! We need more pain heroes like you out there too – keep it up!!
Unfortunately, I suppose it’s how life works (including medicine) – if we don’t have an answer to something or we don’t quite understand it, we tend to dismiss it or just provide any answer that “fits” but is not necessarily correct.
We see this throughout history with many ailments that were “questionable” because they were not understood but now they are credible (for lack of a better term) diagnoses.
It certainly is very draining for patients who are suffering and end up dismissed but I think the saving grace is that there are spectacular healthcare professionals out there as well as patients who take an active role in their health and never give up.