A ‘functional movement disorder’ means that there is abnormal movement or positioning of part of the body due to the nervous system not working properly (but not due to an underlying neurological disease).
In plain English: there is a problem with the way your brain is sending messages to, and receiving messages from, your body about movement.
The disorder is also sometimes called Functional Neurological Disorder, Functional Neurological Symptoms or Dissociative Neurological Symptoms.
Following the introductory post explaining what functional movement disorders are and considering what to do when your symptoms manifest, I thought it might be useful to take a look at the symptoms themselves.
I had a hard time explaining what was happening to my body to friends, family and medical professionals. And until they saw the symptoms for themselves, they had a hard time understanding what I meant.
Therefore in this post, I shall be taking a more detailed examination of what the symptoms actually look like: particularly weakness & paralysis, tremor & spasm, contractures and gait problems.
PLEASE NOTE: Your symptoms may be similar or different to mine. What I have done is focus on the main issue areas and explained them in terms of my personal experience: in the hope that giving you concrete examples will help you in understanding what may be happening with your body.
Functional Movement Disorder symptoms
So your body is making funny movements and somebody has mentioned something about ‘movement disorders’. Then there is the talk of ‘gait’ and ‘spasm’ etc., but what does it all MEAN?
Weakness & Paralysis
“Functional weakness is weakness of an arm or leg due to the nervous system not working properly. It is not caused by damage or disease of the nervous system.” (Source: neurosymptoms.org)
My limbs lock in place and I am unable to move them at all, or I end up staring at them and shouting in my mind for them to move, but nothing happens.
As a result, I am unable to get into the bath or wash myself without assistance; I have a bath seat and a perching stool as I cannot remain standing for any reasonable amount of time; and I regularly knock things over or drop them as I cannot feel them when I make contact with my hands.
The impact of the weakness is wearing. I am constantly fatigued: despite resting for hours at a time, I cannot be sure that when I make attempts to move, that I will be able to do so – or even that my body will be able to hold itself upright.
I have heard rumours that for some people, this results in them sleeping whole chunks of their day away. Unfortunately in my case, I struggle with sleep and just spend a lot of time being exhausted and turning to sleeping tablets in desperation (knowing that 90% of the time, they will not work).
Tremor & Spasm
My body is rarely still. My head, arms or legs shake continually: sometimes strong enough to be visible, sometimes so lightly it is only possible to tell by touching me. Medical professionals repeatedly struggle to get a blood pressure reading from me at appointments; and the tremors build up so strong that it looks like I’m having seizures.
Tremor and spasm occurs whether standing, sitting, lying down or walking.
The head nodding ranges from strong, individual ones (where my head whips back as though someone has just grabbed my hair from behind and yanked) to ones so fast and so strong that I look like a nodding dog.
These hurt my head and neck and regularly cause headaches: at times it feels like the back of my neck is being ripped apart. If they occur whilst I am walking, I have to stop and just let the head nodding spasms finish before I can take any further steps.
The shaking can happen at different speeds in different parts of my body simultaneously, which makes it very difficult to coordinate movement or judge myself in relation to other moving objects.
The worst part is that this has prevented me from sharing a bed with my wife because “ the tremors and spasms become stronger the deeper I fall into sleep; causing me to shake the bed, and inadvertently elbow, punch, kick and scratch – which is no help to the one who has to go to work the next morning”. (Extract from Spastic … and sh!t)
And joy of joys: my body spends a lot of time being bloated and in pain due to the lactate build up that is a result of the extra strenuous workout that the contracting muscles go through during spasm.