Fibromyalgia - part 2: the context of the diagnosis

(Below is the transcription of the above video)

In order to recover from fibromyalgia, there are two things that have to be done:

1. Stop doing things that are stuffing you up

2. And instead do things that help you.

First of all let’s look at the things that I have seen so many people with fibromyalgia do, that actually perpetuate the condition rather than assisting in recovery.

I will go through four most common and critical mismanagement of fibromyalgia. You could say they often occur somewhat in this sequence and they are VERY closely related.

 

1. Lack of appreciation of the context involving the diagnostic term “fibromyalgia”

2. Misinformation on the condition

3. Over-identification or emotional investment on the condition

4. Mal-adaptation that follows on the body

 

The first important thing is that these are not easily identifiable due to the fact that they are “below the surface”. But you sure feel the effect.

The mismanagement that I would like to discuss in this video is the first one: lack of appreciation of the context involving the diagnostic term – “fibromyalgia”.

First of all, let’s define fibromyalgia (and I’d like to add that most “fibromyalgia” patients that I see are often not even aware of this to begin with, which pretty much underlines the point that I want to raise):

 

Fibromyalgia is diagnosed in patients with chronic widespread pain and associated symptoms of fatigue, unrefreshing sleep, or cognitive dysfunction (or a combination thereof) for at least 3 months.(1)

 

(and for those who are interested in details of one of the most accepted diagnostic criteria, you can go to the website on the screen.)

The key here is that the symptoms that pertain to the diagnostic criteria (pain, fatigue etc) sit within a continuous spectrum; some are very mild and borderline fibromyalgia while others can be full-blown and significantly debilitating. And not only that, even though it is generally accepted nowadays that the symptoms of fibromyalgia are the result of dysfunctions in endogenous pain modulation(3-5), it is very difficult to establish a measurable relationship between the dysfunction and the symptoms experienced. 

All this means is that when a diagnosis of fibromyalgia is given, it does not (and should not) mean anything more than the exact definition given above; nothing more, nothing less – i.e. fibromyalgia is simply a description of symptoms and has always been.

The problem occurs when the terminology “fibromyalgia” is associated with certain ideas or beliefs – ideas that may be true for the very severest of the spectrum (and that’s not many) – but everyone who receives the diagnosis is lumped together under that idea.

In my opinion and experience vast majority of patients who have been diagnosed as fibromyalgia could have easily had their symptoms explained as:

 

"a severe but temporary dysfunction of the body due to a series of events that overloaded the system, and/or non-events where there should have been for the benefit of the body, in combination with failure of the body to optimally adapt to the stimulus related to those events and/or non-events.”

 

An example of such event that overloaded the system may be a prolonged stress from work that may have gradually impacted on endogenous pain modulation. An example of non-event where there should’ve been, could be not knowing how to activate endogenous pain modulation when a body is genetically predisposed to pain facilitation.

Combined together, these things FACILITATE pain – and tip the balance towards pain facilitation away from pain modulation. Which means that you’ll be susceptible to feeling an unnecessarily amplified amount of pain regardless of the visible condition of the body.

I suggest that you take a moment to examine this diagram. If there are some aspects that you do not fully understand, please leave a comment – we’ll do our best to answer it.

Anyhow when the symptoms are explained in this way (that was just an example), as opposed to sticking a label such as fibromyalgia, patients can be free from the "baggage" that comes with the label; instead they can focus on finding insights necessary for an effective management for his or her own condition rather than ones that belong to the severest of all fibromyalgia spectrum (which unfortunately are the easiest to discover from terribly unreliable sources such as the internet). 

But regrettably, the culture of medicine and patients’ expectations hinge on "having a diagnosis" - neither clinicians nor patients are often satisfied without giving a condition a label. In fact, numerous clinicians and patients are more satisfied with having a diagnostic label that only explains the fact that certain symptoms exist, rather than giving and receiving an explanation consisting of reasonable and rather helpful hypotheses behind such symptoms;

Some patients will even tend to complain “oh the doctor/physio/specialist couldn’t come up with the diagnosis for my condition” when actually more scientifically accurate and thorough explanations are given.

So if you’ve been told that you have fibromyalgia. I encourage you to jettison the diagnosis label. While there is an innate urge to label symptoms, it really does not do you any favours. Going without diagnosis feels really weird. But trust me, it will make you lighter and free up your headspace so you can actually focus on more important things to get yourself better.

Over the next series of videos, we’ll have a look at the rest of the invisible parts of the iceberg that can sink you. Meanwhile, if you have any questions please leave them in the comments and we’ll do our best to answer them.

References

 

1. Rahman A, Underwood M, Carnes D. Fibromyalgia. BMJ. 2014;348:g1224.

2. Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care and Research. 2010;62(5):600-10.

3. Loeser JD, Melzack R. Pain: an overview. The Lancet. 1999;353(9164):1607-9.

4. Marchand S. The physiology of pain mechanisms: from the periphery to the brain. Rheum Dis Clin North Am. 2008;34(2):285-309.

 

5. Melzack R, Katz J. Pain. Wiley Interdiscip Rev Cogn Sci. 2013;4(1):1-15.