More About Me & Living With Functional Movement Disorder

I have functional movement disorder, a neurological movement disorder where my central nervous system has at some time in the past broken. I have a disconnection, so my brain no longer sends or receives the signals properly anymore for my body movements.

I have lots of overlapping symptoms from other movement disorders, such as MS, Parkinson’s, ME, Fibromyalgia, Chorea, Dystonia, CRPS, Migraines, Athritis, and others too.

I wake every day in pain, and with my hands curled, my arms and elbow joints in agony. My legs in pain, and now my feet (mostly my left foot) in cramp. So I have tablets in a tub ready on, my bedside table to take immediately I awake.
I then rub muscle gel into all my body areas that hurt and my joints.

Along with all this I also have non epileptic attacks and seizures. I also have the drop attacks.
In fact, my body seems so greedy as if it wants to have a bit of every ailment going!

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It is very hard going, and this is my life every day for the rest of my life.

My Neurology Consultant says I will have it for life, but that it may wax and wane. So I may have good days and bad days, but will never be fully physically fit again.

My Neuropsychologist is of the same train of thought, although he is trying to help me get my head attacks and pains a little better (but with no promises!). Unfortunately he says I will have to learn to live with the rest of my movement problems.

Favourite saying – learn to live,with your abilities, rather than your disabilities!
A good saying I think ๐Ÿ™‚

I try my hardest to stay chipper, to be the funny happy person I used to be before I got all this.
You see this time last year, I was still fine. I could still walk, I could still dance. I still had a life.
Now I live day to day, and on some of those days, I have to live hour to hour. It all depends on my attacks, and how my body decides to mess with my mind!

You see there is nothing wrong with my mind, I can think just fine. It is my brain that is broken, the machine, the cogs, that make my body work.

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I hate that I now feel trapped in a body, that I no longer have real control over.

Thanks for reading ๐Ÿ™‚

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4 comments

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    • Andrea on January 27, 2013 at 11:28 pm
      Author

    It is exactly what happened with me, I had been diagnosed with Dystonia Blepharospasm in my left eye and left sided Hemifacial spasms, back in Feb 2010. All the new symptoms I started with from last Jan, were initially thought to be Dystonia too. Then after seeing the Movement Specialist Neuro Consultant, and going back for a follow up appointment. He told me that he was diagnosing me with Functional Movement Disorder. The disorder does incorporate many Dystonic Movements, but as so many additional symptoms ad cross over symptoms from other movement disorders too. My MRI scan showed nothing, and my blood tess came ack normal. Along with the rapidity of the movements and symptoms I suffered with was also part of how he diagnosed me. As this disorder happens so suddenly! ๐Ÿ™

    • Julia on January 23, 2013 at 1:54 pm

    Thanks ladies, I was initially diagnosed with dystonia and came to terms with with that to be told no that’s wrong, you have functional movement disorder.its so heartbreaking to go through with these things. It was hard enough to explain dystonia, how am I going to explain this!

    • Andrea on December 29, 2012 at 6:50 pm
      Author

    Hi Margo, thank you so much. If I inspire one person, it makes me feel I am helping. I just wish, and hope, that one day our disorder gets the recognition it needs and requires. For us to get the proper treatments we desperately need, to help us get to a level where we can sustain our life at some level of normal icy, even with our pains, spasms and disabilities.
    Your comment has been a pleasure to receive, and you in turn inspire me to keep pushing for awareness for us ๐Ÿ™‚
    Take care x

    • Margo on December 29, 2012 at 1:05 pm

    you inspire me. I have the same thing and have been given all those other tags along the way. I thought I was just some weirdo because I didn’t think anyone could be this mixed up in one body and brain. I too try to remain positive, jokes, beautiful things, non toxic people and french perfume and chocolate. Thank you for sharing. Margo, Australia

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