Pin it? No pain? No gain? Please explain…

No pain felt. Nothing organic

Nothing wrong with the ‘hardware’ of the nervous system. Just a ‘software’ glitch, a movement control problem.

What do you mean there is no disease process?

What do you mean there is no site in the nervous system to pin in on… to disect, take cells from and analyse…..and find a cure?

This is so far from my understanding. We had learnt about ‘conversion disorders’ in a lecture at university. But nothing could have prepared me for the sudden onset of my symptoms. Part of me freaks out- it’s never good to be ‘outside the box’ in medicine.

Being diagnosed clearly by my expert neurologist as having a real movement control disorder was somewhat reassuring. However, having the label is one thing but I also discover we don’t understand them very well.

Neuroscience research has been particularly hip in the past decade. We have learnt so much about how the nervous system works. The collaborative focus on pain, especially chronic pain, in incredible programs like Explain Pain has provided ground breaking research in how we understand and manage pain. Chronic pain is hopefully no longer pushed aside along with the patient anymore.

But what about other sensory pathways sending information to the brain? What about proprioception? Balance? Heat? Pressure? Distraction? What is happening in the neural networks that map out our body’s experience in our brain?

So I learn that Functional Movement disorders are 15% of all movement disorders. Functional movement disorders are amongst the commonest reasons to seek neurological advice and are associated with ‘high levels of distress, prognosis is considered poor and the financial burden is high’ (Nielsen et al 2014).

So where’s the research about what to do to manage it? Where’s the research funding?

Once diagnosis is made what is the patient supposed to do?

I am suspicious we get swept aside a ‘too hard’ and maybe ‘too confronting’ in a medical system with no clear answers for us yet.

As I discuss my condition with other experienced physios and doctors, they are curious but also scared. How would they manage someone like me?  I am certain if someone like me presented in my physiotherapy clinic, I would be really wondering where to start.

How can we move through the fear and stigma to get real answers for a very real physical problem?

The hunt is on……

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