Back in September 2017, we published an article entitled “Fibromyalgia, Chronic Fatigue Syndrome and others are essentially one and the same condition”. This reflected the evolving theory in the medical profession that a host of chronic and debilitating symptoms to which often ‘unhelpful’ labels are attached – fibromyalgia, chronic fatigue syndrome, Da Costa’s syndrome, coccydynia, irritable bowel syndrome etc. – have a common underlying cause and simply lie at different points on the same spectrum.
Doctors have found that whilst one symptom is often reported as being dominant, further questioning usually reveals a wider range of symptoms. It is, however, that dominant symptom that has usually led in the past to a particular label being attached. Now, the newer label of ‘central sensitisation’ is growing in popularity among medical professionals.
Despite that, it seems that some sufferers prefer the old-style labels. There are two reasons for this.
First, there is a perception that if they use the traditional labels, there is a better chance of other people understanding the nature of their condition without a detailed explanation. The term ‘central sensitisation’ has not been around long enough for most people to have encountered it.
Second, possibly for similar reasons, sufferers struggle to accept ‘central sensitisation’ as the formal medical diagnosis they are seeking for their specific set of symptoms. It seems far too general in nature.
Nerves behaving badly
One pain medicine consultant I spoke to agreed that that this could be a problem and may explain why many doctors continue to use the old labels. He gave as an example a patient he had seen recently in his clinic. “She has a chronic pain syndrome which is characterised by pain, psychological distress and social changes in her life, all of which are interacting with and exacerbating each other. It’s a vicious cycle” he said.
“As I often do I suggested that ‘nerves behaving badly’ was a useful way of explaining what was going on, which I believe she found helpful. The problem is that her condition would be given entirely different diagnostic tags by different medical specialists. A rheumatologist might diagnose ‘fibromyalgia’ or ‘chronic widespread pain’; a neurologist might use ‘medically unexplained symptoms’ or ‘functional neurological disorder’ and a psychiatrist would refer to ‘somatisation’ and/or ‘features of depression’.”
I asked our client, Gill, for her thoughts. Two years ago she was diagnosed with “fibromyalgia” by her treating rheumatologist. Now in her compensation claim, the medical experts have labelled her symptoms “central sensitisation”. Some years ago, Gill’s daughter was diagnosed with chronic fatigue syndrome. Recalling clearly what her daughter had been through and understanding that now, the same more general diagnostic label may have been attached to her, Gill is understandably sceptical.
“I suppose there are some similarities between us, but really I can’t help think in many ways it’s like comparing chalk and cheese. My husband can’t see it at all. He’s seen both of us being very unwell but in such different ways. I think people now understand what chronic fatigue means in the same way that they know what you mean when you mention fibromyalgia.”
A matter of time
Clearly, the developing concept of ‘central sensitisation’ is not going away. Inevitably, it is going to take time – probably years – before it enters the general vocabulary. In the meantime, we shall continue to encounter what are increasing perceived as ‘unhelpful’ diagnostic labels.
There is though something positive in all of this. As opposed to the not so distant past, however you refer to them, there is no longer a question of whether these symptoms and combinations of symptoms exist. They do. It is merely a question of how they should be classified medically.