Functional Movement Disorder

 

   

  This disorder has such a diverse mix of symptoms, that it is incredibly hard to label it properly. 

Functional movement disorder, functional disorder, neurological disorder, conversion disorder, functional neurological disorder, movement disorder, involuntary muscle spasms, muscle spasms, pain, chronic pain disorder, chronic pain, non epileptic attack disorder, nead, fmd, fnd, non epileptic siezures, nes, epilepsy, epileptic seizures, seizures, memory loss, loss of co-ordination, balance problems, gait problems, chorea, ms, parkinsons, dystonia, functional dystonia, focal dystonia, blepharospasm, eye problems, facial spasms, jaw spasms, cervical dystonia, cd, neck spasms, muscle twiisting,  disability, disabilities, disabled, paralysis, partial paralysis, sleep paralysis, sleep aponea, sleep disorder, back pain, myoclonus spasms, and more!

There are so many symptoms, so many names, how can it all be labelled under one Disorder?

I believe we should be treated for each individual symptom, and the clumped together disorder name label actually taken away! 

That way patients will get treated for each symptom, rather than some that are left with just a label over their head and doctors who have no clue how to treat them.

I honestly believe there are way too many symptoms, just to be all put under the same label of Functional Disorder!

Thanks as always for reading :) 

 

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I Am Broken

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This is a blog post I just added at: www.dystoniasufferer.com
I don’t blog as often now, it’s just going back over old ground. I only blog now, when I really feel what I write is worth sharing.
I hope my words may resonate with others, and make you feel less alone. Andrea x
…………………………….

As I lay with my arms outstretched, crouched at the side of the bed.

My head down and tears fully flowing, with me sobbing and not knowing how to stop.

I am a broken woman!

I still have flashbacks, I still relive moments from my past.

I want my girls to hold and hug close, and never let them go. He hurt us too much, way too much.

Shock, pain, hurtful late night calls. Constant notes through the door, hounding me to meet up. After what he did!? 

The suicide threats he made, and in front of our girls!!!! Him asking to be past a knife to slit his wrists.

My daughters turmoils, the total and utter disruption to their lives. 

The total break of my marriage of 21 years. 

The following mess and trying to hold on and keep going. All that followed, the house, a roof over our heads. Trying to put food in our stomachs, how I deprived myself to feed my daughter, 

Holding on to a job where I was being harrassed by my boss, all whilst going through my troubled home life.

The divorce proceedings I set in place, and stood my ground. Getting some self esteem back, finding me again. 

FMD and PTSD are really, one and the same. I go through similar things.

Times like this I can’t stop crying, I just want out.

But my saving grace, a wonderful man I met who whirled me off my feet. Gave be confidence and showed me how to love again, made me a person who could feel again after I had shut down.

Only I’m not a full person anymore, I’m missing  bits. I’m broken, my brain has memory problems mostly short term. 

But there are things that happened during my marriage break up, that I have no memory of.

Things that have happened whilst with my new partner, I have no memory of.

It’s the scariest thing, not knowing part of your life but others do.

It’s the scariest thing, having flash backs suddenly out of the blue. That interrupt and distort your day, change your feelings. Make you go so low, it’s a struggle to keep getting back up.

It’s the scariest thing, having your body suddenly turn against you. Start breaking down, not moving properly. Not moving how you ask it, or moving without you asking!

It’s the scariest thing, living in my world. Every day, for the rest of my life!

I am hurt, still. 

I am broken, always.

I don’t really know who I am anymore

I just had to blurt this and get it out. 

Real life is hard, nothing is all roses. Not in my world.  

But I love all my family dearly, my girls especially. They make me a proud Mum, they have moved on and are now living their lives.

My elder sister I have to thank for looking after me so well in the first weeks, with no thought to disrupting her own life and work. She stepped out and caught me as I fell, whilst cradling my girls too. Thank you sis with all my heart xxx

Me I still struggle, and probably always will. Becoming physically and I guess mentally disabled, from something that happened in your life, to change the way your brain works. Well, it’s still very hard to grasp. 

So yes, I have my break down days. Today just happens to be one of them, and I felt I needed to set it free.

Maybe now I can move on?

You only have to look at the tags to see all the problems, and disorders I live with. So only time will tell.

Thanks for reading as always, and take care X.

Video Talk On Functional Neurological Movement Disorders

Here is a great video talk, on Functional neurological movement disorders by Dr Jon Stone from Edingburgh.

This is his speciality, and he has done years of research on our disorder. The slides that come with the talk are interesting, and he talks about other videos which are not shown in this talk video but the links are underneath.

http://youtu.be/w4obwKD8JLU

This is Dr Stones website: http://www.neurosymptoms.org

Below are the links to other sites mentioned in the talk:

NBPA: The North British Pain Association:
http://www.nbpa.org.uk

Hysterical Gait:
http://wellcomelibrary.org/player/b16678643#?asi=0&ai=0

Understanding Pain: What to do about it in less than five minutes?
http://youtu.be/4b8oB757DKc

I hope you find this video information as valuable as I do, and as always I will continue to share anything I think is truly valuable and not overload us with information unrelated.

Did You Know??

The Brain is made up of a Hundred Billion Neurons?

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All those neurons fire chemical responses to one another, sending requests for all our body movements.

The brain is the most fascinating part of the body, the one part we will probably never ever fully understand.

Functional Movement Disorder, is one of the one things that may never be understood.
Why the brain can suddenly have a disconnection in its central nervous system, why it no longer sends the brain signals properly anymore from one set of neurons.

How can those one set out of the hundred billion, ever be found? Ever be fixed?

Simple answer, they cannot. The brain is a wonderful thing though which has a life and existence unknown to us, as it can find its own way of repairing or going around and fixing certain problems all on its own.
But only for certain brain problems?

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This is what is called Brain Plasticity, where the brain in effect rewires itself.
This refers to changes in the neural pathways and synapses, which can have cellular changes and makes new brain pathways for the brain to try to learn to work again.

But hey, this is all rather involved! So we will talk about this another time.
Or you can check it out yourself in the meantime :)

The Autonomic Nervous System

We are not aware of the vast amounts of nervous system activity that occur below the brain’s level of consciousness.
Such activity is mainly the province of the ANS (along with the enteric division, which controls most of the abdominal organs, chiefly the stomach and intestines).

We can think of the ANS (Autonomic Nervous System) as our “automatic pilot”. It monitors internal conditions such as temperature and the levels of chemical substances and keeps these within narrow limits; it also controls processes we rarely think about such as heart rate, breathing, digestion,and excretion, by stimulating muscles to contract and glands to release their products.

There are two divisions – the sympathetic and the parasympathetic – of the ANS, the complementary actions if which are shown below.

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Here is a very interesting piece to note:

Out Of Our Control
When overwhelming emotions such as sudden grief sweep through the body, this is mainly the result of ANS activity.
It takes time and mental effort for the brain to reassert conscious control.

The information above is sourced from Dr Alice Roberts “The Complete Human Body”

STRESS – is it a main contributory factor?

Stress can have a massive impact on both a persons brain and body, I sufferer from a condition called Functional Movement Disorder.
This is a psychogenic neurological disorder, caused by past build up of life stresses that at a certain point made my brain in effect suddenly have a disconnection of the central nervous system.


It means now my brain does not send or receive signals to and from my body properly anymore, for the bodies movements to work correctly. My brain can misfire so make it move on its own giving me weird, odd movements out of my control, or does not move when I ask it to.

Stress is one of the factors in this disorder, and it is a little like Post Traumatic Stress Disorder.

We have to learn to have a life balance where we give ourselves a break from the daily stress that we all go through, and have to find a way to keep the balance right.

I know how hard that is believe me, but it is something that society needs to start to understand.

That people are not machines, we need rest and play as well as work.

There has always been the phrase around “Work, Rest & Play”.
Unfortunately it seems that now in the economic situation the world is in now, everybody is finding life more challenging to meet their bills. To put food into their families mouths, and to keep clothes on their kids back and a roof over their heads.

We don’t all need the latest gadgets, the new flat screen televisions, the latest craze or fashionable clothes. We just want to have a happy life, and I want to help people remember to live life with a smile.

STRESS we have to learn to get it under control and go back to living instead of just existing. X

Functional Movement Disorder

My Story

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I haven’t been at work since Monday 30th of January this year 2012.

I had a sudden onset of head spasms, and other body spasms. I have gone downhill fast over the year.

January my head spasms started.

February my neck kept twisting and jerking sideways.

March my legs started to go weak and wouldn’t hold my body up.

I had all sorts of problems, I have been in A&E, and in Acute Assessment Unit where they diagnosed me with Chronic Cervical Dystonia, Involuntary Movements, Vertigo and Tinnitus!

I started with Non-Epileptic Attacks at the start of April.

By the end of April I started having Non-Epileptic Seizures. They pull my face, I look like I’ve had a stroke, I cannot talk straight away after, and these can make me paralysed in all my limbs for hours at a time.

I am now registered disabled, and have to use walking sticks to even get around the house. Outside I use my three wheeled walker or crutches, I look and feel like an old woman. I also have a wheelchair for when I go paralysed for my partner to put me in.

I was diagnosed on 17th May with Functional Movement Disorder, and have recently been told I will now have it for life.

My diagnosis had been wrong! That in the Acute Assessment Unit the Doctor had diagnosed me wrongly, it was all my body starting to Mis-Function. All part and parcel of it, so many different symptoms, but only one Disorder!

Work has eventually terminated my employment as of 20th December this month, so I will be officially unemployed.

I can no longer work, as my movements and attacks or seizures can happen any time and erratically. I live in daily pain, many days I cry out even in the street. I cannot hide my pain anymore. It is hard never knowing what the day has in store for me, I just have to keep going. It’s all anyone can do.

This is the short version of my story, I wouldn’t want to bore you with the rest. As the rest started years before, and is a long story to tell.

Some if my story has started to come out in my Psychology Sessions, good or bad?

Too many equations to go into, too hard to work out and give any easy answers.

It is believed my brain has broken from the past stresses and upsets I been unfortunate enough to have happen to me. There are no written reasons for this Disorder, no one course of treatment to follow.

Every person that is unfortunate enough to be diagnosed with Functional Movement Disorder, has their own personal reason behind the whys. Also the treatment has to be tailored to the individual, to fit with their individual problems.

Hopefully on this journey of finding out, and trying to learn to adjust and live with this Disorder, I may be able to give insight or offer some small help to others with the same or similar problems. Hopefully others may even help me, I live in hope for us all.

Please enjoy my site.

What Is Functional Movement Disorder?


There in lies a very good question!

Functional Movement Disorder, makes a persons body stop functioning at a normal level. It can include many areas of the body movements, or only one area.

It is a very confusing and misunderstood condition, and also seems that it is not even widely known about in the medical profession.
My own initial GP Doctor, had to Google the condition to find out what it was I had been told was my diagnosis. My new GP Doctor does know what the condition is, but did make the big mistake of saying “It’s in the head”. This didn’t go down very well with me, but luckily I already have a good understanding of what this condition entails, the wheres and the whys.

I am quite sure that for a person of lesser knowledge, would immediately jump to the conclusion that it is a “Mental” condition, but don’t worry is isn’t. Although it is to do with the head, it is the brain not the mind that is broken.

In fact it is a break down of the Central Nervous System, which has at some point had a disconnection. Meaning the brain can no longer send or receive signals correctly to or from the body, for the persons movements.

This means that the person can have odd postures, involuntary muscle spasms, unexplained pains, non-epileptics attacks or seizures, and some patients may end up with some form of disability. It seems to mostly effect one side of the body, leaving the side weakened. It can effects some other areas in some patients, there are a few who have dual sided weakness.
There are many conditions that this disorder has, which will be more thoroughly explained in another page.


Constant Involuntary Muscle Spasm!

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I implore and question any psychologist or psychiatrist , why do you believe “Talking Therapy” can help Functional Movement Disorder?

My leg has been in a constant involuntary muscle spasm for over five hours now!

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I am not sure how a person is supposed to stay positive when they live in constant pain.

With the many symptoms this disorder has, how can talking erase all the movements?

I am open to any discussion, please feel free to leave a comment.

All help will be gladly received.

Check out the new leaflets & published information pages

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I have posted on a few leaflets / PDF’s, and some published neurological papers written by Doctors and Consultants.

They are in the drop down “Interesting Medical Papers & Information” tab.

There are some interesting papers if you want to read up on this disorder, and things related to the brain.

I will keep adding to these pages, when I get chance. As I believe sharing information can only help us to understand ourselves more, so therefore we can become more comfortable with our bodies and our movements.

Hope they help some of you :)

Published Neurological Papers:
http://www.functionalmovementdisorder.com/interesting-medical-papers-information/information-leaflets/published-neurological-papers/

Information Leaflets:
http://www.functionalmovementdisorder.com/interesting-medical-papers-information/information-leaflets/

Happy reading :)

Welcome

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Welcome to my site, I am a “Functional Movement Disorder” Sufferer.

I decided to set up this site to share any information and knowledge I have found, about this “very little known about” disorder.

*PLEASE NOTE THAT THIS SITE IS ALL MY OWN THOUGHTS AND INFORMATION I HAVE FOUND, PUT TOGETHER TO HELP OTHERS IN THEIR SEARCH FOR ANSWERS THE SAME AS MYSELF.

This site will grow slowly, as I gather together all the information I have already found. Along with the new information I find in my continued research, which I will put on in time.
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Through researching for information on this disorder for myself, I found there to be very little out there to find.
I looked on the worldwide web, where there is information about what the movement conditions for this disorder are. Only I found nothing about the diagnosis process, or the following process of treatment and what is involved. What we as patients can expect to go through, and the walls that we constantly come up against.

The piles of forms and paperwork that we have to fill in, if we need to make claims from insurance companies, for DLA, for ESA, right through to applying for Blue Badges for disability parking, or concessionary passes etc.

The appointments we have to go through, and the sucession of follow up appointments. The different Doctors and Consultants we are required to see, and the tests we have to go through. Firstly to get to a diagnosis, then the following assessments for any claims we make. The refusals that you may have, and the following continued push to prove that your claim is your right. The ongoing battle against both your body fighting itself, and the battle to keep going through all the closed doors.
The total and utter resignation you may feel many a time, and the ongoing tiredness and fatigue.

I also trawled to a lot of bookshops, only to find that even the largest bookstores did not have any books on this condition. I even went to a main University bookstore, but to no avail.
I was also very surprised to find that it is not listed on the lists of Neurological Disorders on the Movement Disorder sites that I did find.

Interestingly, there seems to be a selection of names for the same disorder:

* Functional Movement Disorder
* Functional Neurological Disorder
* Functional Dissociative Disorder
* Dissociative Disorder
* Conversion Disorder
* Functional Neurological Dissociative Disorder
* Functional Neurological Movement Disorder
* Psychogenic Movement Disorder
* Functional (Psychogenic) Movement Disorder

All of the above diagnosis’ are in fact the same disorder, which can lead to confusion when left to look for information about the condition you have just been diagnosed with.

I hope that with shared knowledge, we can get this disorder more well-known about and so making the struggle for sufferers less, along with helping their families and carers to gain an understanding too.

Please feel free to get involved. You can comment, or you can contact me by email using the contact form.
Thank you.

My Story

I haven’t been at work since Monday 30th of January this year 2012. I had a sudden onset of head spasms, and other body spasms. I have gone downhill fast over the year. January my head spasms started. February my neck kept twisting and jerking sideways. March my legs started to go weak and wouldn’t …

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An Update On Me ;)

I can’t walk anymore without walking sticks, crutches, my wheeled walker or I also now have a mobility scooter. I have funny jerky movements, and can seem to have a tremor at times. My left leg jumps a lot, due to pulling in my abdomen, my hip or the calf muscle all spasming. My neck, …

View page »

4 comments

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  1. Andrea

    Hi Julia yes it was the same one I was pointed to by my Neurology Consultant as well. It has a wealth of information all about the different symptoms and that come with this disorder.
    I have linked to it on the “Helpful Links” page :)
    Unfortunately what I find it doesn’t do is go further, to give the understanding. To fill out the picture and consequences this disorder brings with it. I wanted more, to know the why and how. To find reasons, and information more than just on a medical level from one Dr who has an interest in the disorder. In fact, I was and still am dumbfounded that so few Drs have an interest in the disorder or know so little about it.
    My website is the journey from a patients view point, the diagnosis and time, years it can take. Through to the eventual start of treatment, the forms of treatment, and hopefully the outcomes that patients can look to in the future.
    I have been rather ill lately so I know my site is limited, but as many sites they take time to build and I hope it will get there eventually. With more information of the treatment and psychological journey, along with other interesting information I find that I feel may be of interest to share.
    I hope you find the site of some use to yourself also.
    Thank you for your comment :)

  2. Julia

    Hey, have you had a look at neurosymptoms.org? It’s a website by a movement consultant neurologist and I found that very useful. My neurologist pointed me in the direction of it when he diagnosed me x

  3. Andrea

    Hi Nicola, I am so glad my site is helping you. Although I do need to just say, that I am like you a sufferer. Everything I put on this site is from my research and personal experience, I am not a medical person.
    I set this site up because there is little information for us to find, and I wanted to explain our disorder in as easy a way as I can. Without all the medical terms that can be hard to understand, and I want to help others like me.
    We as patients with this disorder, start to become specialists in it by going through it and all the information we find along our journey. We end up knowing more than our local doctors, but we are not doctors just sufferers that begin to know all about our disorder.
    I hope your appointment goes well, and that your day is a good one.
    Thanks for your lovely comment 😀

  4. Nicola

    Fab site Andrea! You site is so good I’m taking a print out to my Gp this week of all the symptoms. He’s very understanding but he’s learning about Fnd like I am. I look forward to hearing of any updates you have & I will definitely let you know if any treatment I have seems to help & of news I may find through my investigations into this mad, mad condition! :-) xx

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Never a Give Up!

  Check out my new post on my blog at: www.dystoniasufferer.com Where I talk about not giving up on fighting to have all your symptoms checked, and not to let the Drs tell you everything is Functional and leave you to just live with the problems. If you believe there is definitely something wrong, and …

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Nominated For – National Diversity Awards 2015!

We have been nominated for the very prestigious, National Diversity Awards 2015. For our Functional Movement Disorder Community Group, in the Disabled section. Yes you read that right, I was very surprised myself. Though we are an online group, Functional Movement Disorder Page, and website, we can make a massive impact to society all around …

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