This post has been on my mind for a while now. I live with fibromyalgia (FM) and want to share some of the everyday hassles I face. This isn’t a “oh woe is me” kind of post, it’s more of a “if you’re a clinician working with someone who has fibromyalgia, these are some things to ponder”.
Diagnosis
I worked in chronic pain management for almost 20 years before I recognised that the pains I’d been experiencing most of my adult life actually added up to “…a syndrome of diffuse body pain with associations of fatigue, sleep disturbance, cognitive changes, mood disturbance, and other variable somatic symptoms”(Fitzcharles, Ste-Marie, Goldenberg et al, 2012). I’d hurt my back in my early 20’s, thankfully been seen by Dr Mike Butler and given the Melzack & Wall book “The Challenge of Chronic Pain” to read, so I wasn’t afraid of my pain and just accepted it as part of life. What I hadn’t really recognised was that not only was the pain in my lower back part of the picture, so too was the pain in my neck, shoulders, arms, hips, legs, feet, and the irritable bowel, and the gastro discomfort, and the migraines and the dysmenorrhoea. Not to mention the fatigue, rotten sleep, foggy thoughts, and low mood.
Diagnosis for people living with fibromyalgia is often delayed. People with fibromyalgia may resist going to the GP for what seem to be short-term but painful bouts in various parts of the body. There for a couple of weeks, then shifting to another part of the body. As one person said to me “You feel a fool going to see a Dr about a pain that’s not consistent to say ‘Oh Doctor and I have pain here, and here and here and last week I had one here…especially when it might be gone next week, and that other one has already gone.'”. This experience is echoed in qualitative research where, for example in a study by Undeland and Malterud (2007) people said that although having a label was reassuring (it’s not something that will kill you!), the label itself was often difficult to obtain (doctors not being keen to label something so nebulous as FM), and even with a label health professionals and the general public “pay no attention to the name, or blatantly regard them as too cheerful or healthy looking” (Undeland & Malterud, 2007).
Treatment
One of the problems with getting the diagnosis is that very few people get relief from medication. Those that do may find their pain settles almost completely, but many others have no effective analgesia despite trying numerous combinations. I’m one of them. What this means is that “self management” is the order of the day – yet in many places this is not even considered, let alone having services to help people develop such skills.
I’ve learned that my body feels best when I maintain a consistent level of activity irrespective of the day of the week. I enjoy stretching, walking, cycling and dancing, but I also love gardening, fishing, walking the dog – and I guess I can add in doing the housework and working as part of the mix. New activities are bound to give me aches and pains that last for weeks, while stopping my usual routine also brings me aches and pains that last for weeks. So boring consistency is the name of the game. And as I’ve previously blogged that means I look for a variety of different movement options in my repertoire.
Everyday hassles
The one thing that makes my life difficult is when I develop a new pain in a part of my body that doesn’t usually feel uncomfortable. Like most people living with persistent pain, I’ve developed an awareness of “my normal” (see this study by Strong & Large, 1995, for a nice description of this aspect of living with pain, one that is not often discussed). I know the usual pattern of my pains – bellyache, low back pain, neck and upper back pain, wrists and fingers, and often, knees, headaches and facial pain. These are my normal – but when should I seek help for a new pain? After all, it could be simply a manifestation of my fibromyalgia (ie there is nothing medically to be found, and no real change in management). At the same time, these are new pains – one in my shoulder that feels like an impingement (painful arc), and one that’s possibly an adductor tendon thing that’s very localised and hasn’t moved for over 7 months.
The question that keeps coming back to me is whether I’m overlooking something that can be treated, or whether it’ll just settle down like most of my pains do. Essentially I’ve just kept doing what I do and ignoring it.
The difference between my situation and those of people who are not painiacs, who don’t know that their pain is largely unrelated to the state of the tissues, is that I’m immersed in pain research all day, every day. I’m not overly bothered by these new pains. I’m continuing to exercise as normal and these pains aren’t interfering with what I need and want to do in daily life (well, perhaps a little…).
I can understand why someone might ask for help for a new pain. There are no rules saying that just because you have a persistent pain disorder you’re immune from acute musculoskeletal disorders. And sometimes by treating a new pain as an acute pain, it will vanish. Though, it must be said that outcomes for people with more than 3 or 4 persistent areas of pain with low back pain are not as good as those who only have one or two (Nordstoga, Nilsen, Vasseljen et al, 2017), nor of recovery and benefit from total hip and knee replacement (Wylde, Sayers, Odutola, Gooberman-Hill et al, 2017).
Points to ponder
So how do we as clinicians help people who must live with persistent pain?
- Do we consider the meaning of the labels we give? And do we read around the experiences of those who have been given the diagnosis? Or do we, instead, rely on our own beliefs and biases when thinking about the way we handle diagnosis?
- Do we give people an explanation for their pain that they can understand, or do we rely on currently favoured language and models without really considering what this means to the person? And do we ever check out how they’ve interpreted our explanations?
- Do we ever discuss how to self-manage pain? Do we think about the practical implications of needing to learn to modify every aspect of life in the face of pain that will not just go away? When I compare the tasks of living well with persistent pain against those needed to cope with other disorders, pain can interfere with everything – do we talk about the impact on sex? on relaxation? on having a holiday?
- Do we talk about what to do when a new pain turns up? Do we think about how someone can decide whether their pain is worth seeing someone about, or one they can handle? And do we even talk about the effect of having a persistent pain problem and then going on to have surgery? Do we teach people to recognise their “normal” pain, or are we afraid to teach people this because it might focus their attention on their pain?
I don’t have researched answers to these questions. I have my experience. And I’ve been working in this field a long time – yet somehow the voices of people living successfully with this pain are rarely heard.
Fitzcharles, M.-A., Ste-Marie, P. A., Goldenberg, D. L., Pereira, J. X., Abbey, S., Choinière, M., . . . Proulx, J. 2012 canadian guidelines for the diagnosis and management of fibromyalgia syndrome. http://fmguidelines.ca/
Nordstoga, A. L., Nilsen, T. I. L., Vasseljen, O., Unsgaard-Tøndel, M., & Mork, P. J. (2017). The influence of multisite pain and psychological comorbidity on prognosis of chronic low back pain: Longitudinal data from the norwegian hunt study. BMJ open, 7(5). doi:10.1136/bmjopen-2016-015312
Strong, J., & Large, R. (1995). Coping with chronic low back pain: An idiographic exploration through focus groups. The International Journal of Psychiatry in Medicine, 25(4), 371-387. doi:10.2190/H4P9-U5NB-2KJU-4TBN
Undeland, M., & Malterud, K. (2007). The fibromyalgia diagnosis – hardly helpful for the patients? Scandinavian Journal of Primary Health Care, 25(4), 250-255. doi:10.1080/02813430701706568
Wylde, V., Sayers, A., Odutola, A., Gooberman‐Hill, R., Dieppe, P., & Blom, A. (2017). Central sensitization as a determinant of patients’ benefit from total hip and knee replacement. European Journal of Pain, 21(2), 357-365.
HealthSkills Blog 
Bronnie, how would you respond to the December 2016 article posted on Fibromyalgia Perplex by Professor Fred Wolfe, the lead author of the important papers outlining the classification criteria for a diagnosis of fibromyalgia? As a fellow rheumatologist, I found it to be quite alarming and deserving of a considered response from my colleagues. Alas, the article was totally ignored!. Link: http://www.fmperplex.com/2016/12/07/75-of-persons-in-the-general-population-diagnosed-with-fibromyalgia-dont-have-it-but-it-is-worse-than-that/
I have to say that I prefer to follow the 2012 Canadian guidelines which are pretty clear – and that suggest medication is probably the least useful approach for managing the problem. I would argue that the problems associated with diagnosing fibromyalgia are quite similar to those associated with diagnosing depression. There is a spectrum from little impact to significant impact in depression – and similarly so in fibromyalgia. There certainly seem to be some reasonably consistent findings of reduced thresholds for pressure, temperature and reduced conditioned pain modulation associated with this problem, along with the less clearly measurable aspects of “cognitive fog” and poor sleep. But poor sleep has been identified as one of the hallmarks of fibromyalgia for many years – with reduced delta sleep phase found in most people who describe it.
Bronnie, I see the 2012 Canadian guidelines as being a part of the process of abdication of responsibility for fibromyalgia by North American rheumatology. It needs to be remembered that fibromyalgia was created and endorsed by its members in 1990. How sad is that?
I’m not sure it’s all that sad – it seems to be a neurobiological disorder rather than a rheumatological disorder, although the experience is “in the tissues”. Neurologists have a whole bunch of health disorders that are in their sphere of influence for which they can do very little, and many have common neurobiological pathways.
Fibromyalgia isn’t, I think, the “creation” of anyone – the labelling and grouping together of a set of experiences is what we’ve done for depression, anxiety, and many other disorders to enable us to talk about and examine them in a consistent way. It’s allowed for the discussion around “central” processes involved in producing the experience we call fibromyalgia (and other similar disorders). People had these experiences but so often had no-one to go to with them – because so many people dismissed the experience as “not a diagnosis” or “not real” or even “a distressed person”. As someone who is rarely distressed by my pain, but who experiences pain in many parts of my body, I reject the notion that my experiences on a daily basis are the product of distress. In terms of helping the person who is experiencing these symptoms, a diagnosis may clarify the situation but it likely won’t help unravel the impact of those symptoms on daily life – that is why I’ve always promoted the idea of a case formulation. I notice that the Faculty of Pain Medicine also promotes the idea of a case formulation as a way to tie together all the various ways someone experiences pain, and the impact on their life, and the various contributors to their experience – and ultimately what might be introduced to help ease some of the impact.
Perhaps the reason rheumatologists find fibromyalgia to be out of their interest now is because they’ve got the enormous impact of biologicals to draw on, such that conversations with people about the effect of their health problem on their lives is becoming used less often. I think pain physicians should be the medical professionals to manage fibromyalgia, because the primary problem is pain. ICD 11 now includes Primary Pain Disorder as a definable diagnosis – the mechanisms underpinning these disorders are not yet fully understood, but I’m certain the mechanisms underpinning ankylosing spondylitis or rheumatoid arthritis might also have been unknown when these were first proposed as diagnoses. The only real difference in these disorders compared with fibromyalgia is that there are blood tests and imaging to aid in that diagnosis, whereas for fibromyalgia the word of the person experiencing them must be accepted as valid.
Bronnie, I don’t disagree with you but, as you would be aware, the Canadian guidelines position primary care practitioners (i.e. family doctors) as being responsible for making the diagnosis and managing the condition. One million Canadians are estimated to have the condition. However, those to whom the label has been so applied find it difficult, if not impossible, to access income support should they be unable to work. Does this same situation exist in New Zealand?
I think you’re conflating two different things. Firstly, the management of fibromyalgia should really be in the province of primary care – there are so few management options, and those that exist are easily carried out in primary care. The primary care doctor is going to have an ongoing relationship with the person living with fibromyalgia, so it makes sense to me for them to also be responsible for eliminating other causes for the pain, and then for confirming the diagnosis.
Secondly, the people who typically provide certification for being unfit for work are the primary care clinicians – while others can and do fulfil this function, to me it makes more sense for a GP to certify fitness for work because they know the person and his/her context. Regarding the need for people with fibromyalgia to obtain income support, my guess is that many people actually do better when they are supported to remain in work, rather than stopping work. That same case applies to most painful conditions where we find that remaining at work helps in self esteem, quality of life, and maintaining routines. I’m not saying it’s easy, and people do need support – but these are issues common to anyone who lives with a painful condition.
Income support in NZ is available to people who qualify under our Work and Income (though, tbh for anyone the paltry sum available is so pitiful and the conditions for receiving it are incredibly stringent – but this applies to anyone with a chronic non-accidental health problem, not just people living with fibromyalgia). Income support is also available under ACC for people who can demonstrate the link between the onset of their problem and the resultant fibromyalgia – but again, I’m not sure this is entirely a good thing. ACC is a difficult master to serve, but so is WINZ.
HI Bronnie – excellent blog and responses. The voices and experiences of those who are living well in pain are so important. And another group to whom I have listened a lot are those who were not getting better and then ‘found a way to living better, moving with more ease, or less pain’. When an individual is stuck, and self care is not working well, but then there is a shift – is it because they practised longer, or because of measurable change in some aspect of their existence, or did they change their approach physically, cognitively, emotionally, spiritually, …? And this is an area mostly impossible to study except with qualitative research, and when clinicians can follow people living with pain for long enough. The latter of course being very difficult. As an example, I have learned so much (from and ) about people living with pain as a therapeutic yoga teacher, that I could not have learned as a PT. Many people continue yoga classes for years and provide updates on their lives, but few can afford seeing me as a PT. Their stories, difficulties with carrying out my self care advice, and successes with things I have not heard from other clinicians have taught me so much! Thanks for continuing to share your difficulties and successes.
Thanks so much Neil, longitudinal studies, especially qualitative, are as rare as hen’s teeth – I found one on low back pain, but that’s pretty much it. Understanding the relationships between people living with pain and the health professionals they see over time would be a great area to investigate, again I couldn’t find much on what those relationships look like, what works, and what doesn’t work. I think there’s so much we could learn from people living with pain, yet it’s incredibly difficult to get funding for this! So glad you’re able to do the work you do, and that those long-term sustaining relationships can be fostered somewhere, albeit not in “traditional” health services.
… and this would make a fabulous blog topic – “and that those long-term sustaining relationships can be fostered somewhere, albeit not in “traditional” health services.” if we are to serve people well, we might need to provide ‘health’ services rather than only or mostly disease services. The health care funders in Canada have no interest in this so far. and without better evidence of superiority of OT and PT over things like yoga and tai chi, the higher cost will likely stop most long-term relationships there.
And is PT and OT a tradition? I guess it is in modern ‘health care’, but …
I think those are great questions to leave us with. Speaking from my experience I think it is very hard to know when you have an acute pain such as a musculoskeletal acute pain when you have a chronic condition in that area and for me when my back hurts i keep up with my usual activity but I have a little voice inside wondering if it is a separate issue or the chronic one and I usually wait and see what happens. I find that in my patients it is somewhat easier when they are in front of me and I am evaluating but when patient asks me If i think that their pain is related it is hard to know when they should seek help.
Bronnie, a recent study has shown that, at least in the Norwegian medical culture, fibromyalgia is the least “prestigious” of the various diseases. This low ranking has been a consistent finding over the last 25 years.
The authors of the study suggest that the low ranking is due to a number of factors: that it is not organ specific; that there are no objective diagnostic criteria; and that patients’ understanding of their condition is quite different from that of their doctors.
But there may be another reason.
On epidemiological grounds, it has been suggested that fibromyalgia exists in the community anywhere along a spectrum of manifestations of polysymptomatic distress.
I interpret this to mean that we are dealing with a “symptom cluster” rather than a distinct syndrome or a distinct disease.
The constellation of clinical phenomena that make up the fibromyalgia cluster do not necessarily bear any relationship to one another (as is the case for individual stars in constellations we see in the night sky).
Until such time as there is a widely accepted unifying scientific hypothesis, I do not see how the situation in Norway (which arguably can be generalised to that in other countries) will change for the better.
I do not share your optimism that primary care practitioners will be able to help many or all of these patients.
As mentioned above, most rheumatologists have lost interest in the condition they created.
Perhaps pain physicians will fill the gap but they are few in number and some of them are mainly interested in performing spinal interventions.
Reference: Album D, Johannessen LEF, Rasmussen EB. Stability and change in disease prestige: a comparative analysis of three surveys spanning a quarter of a century. Social Science & Medicine 2017; 180: 45-51.
Hearing what others go through helps me to realize I am not alone. I do feel so alone with what I go through most of the time. I look forward to reading more of your posts. I recently started my blog. My goals are to help people who have battled Multiple Sclerosis for years or have been recently diagnosed. I want to be an inspiration for others and be encouraging when hope seems to have been lost, as I totally understand that feeling. I am trying to build my blog and would really appreciate it if you would follow my blog so I can increase my network to achieve my goals. Thank you so much!
Interesting post and definitely an area where more studies would be beneficial. A large majority of clinicians appear not to have much idea of the challenges of living with persistent pain, which can be very isolating, frustrating and depressing for patients.