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Functional Movement Disorder :: #1 – What Is It?

So you think you may have a movement disorder?

chronic illness ecard 6 
I’ve been thinking about the best way to tell you about what it’s like to have a Functional Movement Disorder – as discussed in last Friday’s post.

In truth, just writing about what my physical self and I go through hasn’t been easy. So I’ve decided to approach this from a more practical standpoint.

I’m going to publish a series of posts that follow the progression of my illness, so that you get an idea of what happened/happens. Within that, will be anecdotes about my experience, the different symptoms that arose and some pointers about what was done in response to what happened.

Hopefully, this format will be more helpful to anyone who is going through similar – or knows of someone who is. And I will share our learning so that you don’t have to reinvent the wheel – which hopefully means that you can get to support services more promptly to help you manage your illness.

This week, I’ll be focusing on what to do when your symptoms first manifest.

 

 

What are Functional Movement Disorders?

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).

Patients with a functional movement disorder may experience a range of distressing and disabling symptoms:

Tremor – When an arm or leg shakes uncontrollably. Functional tremor is often quite variable. It may even disappear when you are distracted but at other times be very disabling

Jerks / Twitches – Some people experience jerky types of movements. This may be particularly in response to loud noises, certain kinds of lighting or bursts of pain

Spasm / Contractures – Some people find that their hands or feet develop abnormal postures which are hard to overcome. This may be a temporary intermittent problem (a spasm) or may be more chronic (this is usually called fixed / functional dystonia or contracture). Patients with functional dystonia often have a ‘clenched hand’ or a twisted foot.

Gait problems – A variety of gait (walking) problems can occur as part of a functional illness. Most common is the ‘dragging’ gait seen in patients with functional weakness of one leg. Other types of gait include a generally unsteady gait, often associated with a history of previous falls and a heightened fear of future falls.

Unlike other movement disorders (e.g., Parkinson’s disease), a functional movement disorder is not caused by damage or disease of the nervous system. It is however due to a reversible problem in the way that the nervous system is working.

This means that a functional movement disorder can get better and even go away completely.

(Source: neurosymptoms.org)

 
 

 

So, your body’s acting funny and you have no idea what is going on or why you suddenly can’t do the things that you could before. What are you gonna do about it? Here are a few thoughts to get you started.
 

Admit that what is happening to you IS out of the ordinary

life on paper
Tell someone you trust – or even someone who just plain likes you – about what you are experiencing.

I know what you’re going through doesn’t make any sense – that’s why it’s a problem.
 
I just kept telling myself “I’m just tired is all” and looked forward to getting time off work. If your symptoms are stopping you from doing things that you normally do, it’s time to look at the why.
 

 

 

Start keeping a Sickness Diary

Most of my employment history has involved working with children and adults with “complex needs” and “challenging behaviours”; requiring support services to be put into place. In order to argue for said services, the thing that has been required of me in every case is to provide evidence. I simply applied the same rule of thumb to my ill-health.

I started by writing the information down, but when the spasms became a constant element, I recorded the information onto a dictaphone because it was faster and easier to do.

Write down what happens to your body – both internally and externally – and be detailed in the information that you gather.

  • Record dates and times.
  • Can you tell when your body is going to go wrong before it does?
    This can help to determine any patterns to your illness and help you manage it better.
  • Describe what happens to your body. Are there different types of symptoms?
  • Record the duration of the different symptoms.
  • Get the people who spend the most time with you or who have seen your symptoms to record their impressions too.
    This can be useful as they see you from an entirely different angle and may pick up on things that you’re not even aware of.

 

 

 

Video as many of your symptoms as you can

Stroke F.A.S.T poster
 
I regularly suffer from all these symptoms simultaneously and yet, I’ve been diagnosed with a ‘functional movement disorder’.

 
Videoing can easily be done using mobile phones – which most people have and tend to carry on their person regularly enough to catch things whenever they happen.

This is particularly useful for showing medical professionals what your body does if you don’t happen to be manifesting symptoms at the time of your appointment.

If nothing else, it’s a pleasure watching the expressions on the faces of medical professionals when they see for themselves exactly what you’re going through.
 
 
I’d been with my GP since the age of 15; but those intervening 22 years counted for nothing when I got sick. His response when I first reported my symptoms was: “That can’t be right?”. No shit, Sherlock? That’s why I’ve come to see you!

He didn’t believe me until I ended up collapsed and spasming on his office floor (Serves him right!): and then all he did was panic and call an ambulance. But as the illness progressed, I was able to show him the videos and use them for arguing for referral to particular services.
 

 

That’s it for this week, Ladies and Gentlemen. I hope this goes some way to starting the discussion. Please get in touch if you feel there are particular areas that I should cover in this series and I’ll do my best to incorporate them.

In the meantime, take good care of yourself and remember: Fuckerty happens! But you don’t always have to bear it on your own. Let’s see if our shared discussions can aid us to better physical and/or mental health.

Yours sincerely,
mightwar signature
AKA Crip McWog™

SO TELL ME: Do you think that this series could be useful? Would such posts interest you? What kind of information would you be looking for from them?

 
 

This series in running order

  1. The Stink of Chronic Illness
  2. Functional Movement Disorder :: #1 – What Is It?: which focuses on what to do when your symptoms first manifest.
  3. Functional Movement Disorder :: #2 – Exploring the Symptoms: which focuses on symptoms of weakness & paralysis, tremor & spasm, contractures and gait problems.
  4. Functional Movement Disorder :: #2.1 – Exploring the Symptoms: which focuses on symptoms of pain, facial spasm and speech problems.

 

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AUTHOR: I am might war. I have a love of music, the written word, travel, Anime, polar bears, people and “sticking and colouring”.

8 thoughts on “Functional Movement Disorder :: #1 – What Is It?

  1. Hello, Mighty Mightwar. I think this kind of post is very interesting and could be very useful. Even if it’s not relevant specifically, it will get people thinking about what is normal for them personally and what is not.. and if something that is not normal occurs, and keeps occuring, It might encourage your readers to make haste to see a medical professional. Also, as an avid reader of your blog, I’m always interested on your view of things and how you cope with them.

  2. This is partly what I had in mind when I said you should write stuff emdubbya. Your ability to see things from a service user and service providers perspective, added to your intelligent, articulate and rational style of writing, would mean you could guide so many on both sides of the counter. What advice you might give to a social worker or other professional who encouters some one with a similar diagnosis/symptoms could be another line of inquiry for discussion. X

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