Fibromyalgia: Time for the rheumatologists to hand over?

The American College of Rheumatologists developed diagnostic criteria for fibromyalgia in 1990, the culmination of many years of debate and disparagement of the existence of this pain problem.  At the time, it was thought that it was a rheumatic complaint due to the presence of body pain and soft tissue tenderness, so the diagnosis and management of it was firmly in the rheumatologists camp.  Research over the last few years shows that it is in fact a pain syndrome centered in the nervous system. Two rheumatologists now suggest that fibromyalgia should no longer be managed by rheumatologists and it should be handed over to…primary care physicians.

The information above is drawn from an editorial by Shir and Fitzcharles, in The Journal of Rheumatology 2009; 36:4.  What does this startling suggestion mean really?

There are several points that this editorial makes:

1. Fibromyalgia is no longer a diagnosis of exclusion, and diagnostic accuracy by GP’s has improved significantly (at least in the US)
2. Exclusion of serious rheumatological or other disorders seems to be carried out quite effectively by GP’s
3. Few investigations are needed to increase diagnostic accuracy
4. ‘Successful management necessitates approaching the patient as a whole biopsychosocial being, with treatment strategies directed towards physical and psychological complaints within the context of family and society.’

I’m not going to argue with these points at all,  but I am going to suggest that leaving the management of fibromyalgia simply to the family physician might not be the best thing for the person with FM.  I don’t doubt the clinical skill of GP’s, and I think they are the best group to diagnose FM – but managing FM isn’t a single-clinician job.

While GP’s certainly know how to diagnose, and can prescribe the majority of medications used to manage fibromyalgia, my worry is that the rest of the management is not a medical task.  In fact it’s a biopsychosocial problem, as the 4th point above makes.  IMHO GP’s don’t have time or access to services in the community to help people with fibromyalgia to live well, it takes a team to do this.

If I had a wand, or the ear of a health funder, I’d be suggesting the formation of community-based teams of health providers consisting of occupational therapists, physiotherapists, psychologists, nurses and social workers.  I’d be asking them to work alongside GP’s, (perhaps even in the same buildings!) so that people being seen by the GP could then be included in a team approach to help them develop active coping strategies to live well, despite their health problems.

Now, as it happens, I don’t have the wand or ear, but I can hope.  As Shir and Fitzcharles state:

…the pathogenesis of FM is now firmly centered in the nervous system, and FM

is not a musculoskeletal complaint. Optimal patient management

requires attention to the many symptom components

of FM in addition to pain management. Patients with

FMwill also require prolonged care with continued tailoring

of treatments, as symptoms are likely to change over time.

Maybe one day soon my dream of community-based interdisciplinary teams to help people be well despite pain (or other chronic health problems) will be realised.  The sooner a biopsychosocial approach to managing these problems is adopted the better.

Information on fibromyalgia can be found here for a New Zealand site, here for a US site, here for another US site, and here for an Australian site.

If you’re a person with fibromyalgia, some caveats about anything on the internet:

FM has been a wonderful thing for people who sell so-called ‘cures’.  It’s such a diffuse problem, has been questioned for years by the medical community, is often not clearly diagnosed, and changes its presentation often – so people who are either unscrupulous, or are credulous can go about selling all sorts of potions, pills and gadgets for the ‘cure’ of the disorder.

FM doesn’t respond to very much, it’s a chronic central nervous system problem, and living with it means learning how to LIVE with it, not fight it, defeat it, or beat it.  It won’t just disappear of its own accord, and it won’t disappear because of some herbal, crystal, magnetic Thing.

Be sceptical, ask for evidence and don’t accept anecdote or endorsements as evidence for the power of any treatment.  Self management is really the only way to live well with FM, although some medications can help.  Here’s a good site for learning about self management for FM, and here’s a brief overview of a study about how self management can improve the outcomes of exercise in FM.

SHIR, Y., & FITZCHARLES, M. (2009). Should Rheumatologists Retain Ownership of Fibromyalgia? The Journal of Rheumatology, 36 (4), 667-670 DOI: 10.3899/jrheum.081073