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 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.

Did You Know??

The Brain is made up of a Hundred Billion Neurons?

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?


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 :)

Connectivity Is Power

(The above is a picture of Neurons connecting to other Neurons)

    I have set up some forums for anyone that is interested in wanting to post questions, or chat. Also one for if anyone has information, or diagrams they feel they would like to share, that may be of use to others with our little known about disorder.

    The quote below is one I posted on my blog a long time ago, but seems very fitting now :)

    Connectivity is power,
    Power is electric,
    Electricity is vital,
    Vitally is exciting,
    Excitement makes people talk and connect,
    Connectivity is power,
    Power is electric…..

    Copyright © 2013 Dystonia And Functional Movement Disorder Sufferer Quote – Trying to raise awareness of Movement Disorders

Living With Doubt

Here is a quote to boost you up!

Self confidence is not the absence of self doubt.
It’s being able to live with your doubt as your companion but not as your master.

I guess that makes some sense, but I am still learning.
My learning curve looks like it may be a long one!

Have a good day folks, and a Very Merry Christmas! 😀

Check out the new leaflets & published information pages

Information is key!20130912-211129.jpg

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:

Information Leaflets:

Happy reading :)

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.

Exciting Week Ahead!

This week I have a lot going on, so I have to somehow find the energy and strength to both get up early, and stay going!

Unfortunately yesterday I had problems with my blog “” (Dystonia & Functional Movement Disorder Sufferer). I found myself unable to get into my site as I could not for the life of me remember my passwords, though to be honest I have had it before where I have input my password and it has told me it is wrong only for me to input the same again and it work!
I thought I had backed up all my database etc, and then proceeded to delete to start over agsain. But I seem to be having problems getting it back up, and am now unsure if it will even be done.
Gutted doesn’t cover it, I started my blog on 16th February 2012. That’s a lot of pages, and hundreds of posts of information all lost if my web hosts are unable to help me and my partner bring it back. My poor partner has been trying his best to help my since last night, but fear I may have not backed up everything I needed to :(
So I hope you do not mind, if I do a few blog posts here. After all, it is living through the eyes of a sufferer.

Wednesday I am going to become a Nanna for the second time, whoop whoop! My eldest daughter is having her little girl by a cesearean section, her baby has been stuck across ways and breach for the last approximately four weeks.
We are all very excited, it should have all happened today but there was emergencies so she got moved along which is not the news you want to hear when you have been waiting so long!

Though luckily, I am not feeling too well today. I know we never feel well with our disorder, but as you my fellow sufferers or carers, or family members all know, we still can feel worse than our normal daily issues we have to deal with.
I am just so very tired today, I ache terribly and my head feels off kilter and my scalp feels sore. My joints hurt really bad, and my back (as normal now) is causing me a lot of pain. I have taken three lots of morphine so far today, and that is out of my allowed four doses. So maybe Wednesday I will be be having a better day. whatever happens, I will drag myself up and out and be there for her and my new Granddaughter :)

On Thursday I am eventually getting help for my back pains, I am going to hospital to the surgery department for 8 o’clock in the morning.
I will be having a local anaestetic injection, and the steriod epidural injection. To hopefully be given the pain relief, I have waited many months for.

I was told last Monday when I saw the head man my Neurosugeon Mr Thorne, not to get my hopes up. Which was not what I expected, and made me feel slightly dissapointed. I had expected this injection to help, but I am now informed that it is possible it may not work as I have so many problems going on! Though if I am lucky it may help, and give some relief from the pains but that I will very likely still need to use the morphine alongside.
If however I am very lucky, the injection may work and give me the pain relief in my back and hopefully keep the relief going for a few months.
At the moment it is all ifs, buts and maybes. I just have to keep hope, and believe it WILL work.

By this timme next week, I might be back to using my walker instead of having to depend on mobility scooters all the time. Start to get out and become a bit more mobile again! Please :)

Thanks as always for reading folks, catch you later 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.

This is Dr Stones website:

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

NBPA: The North British Pain Association:

Hysterical Gait:

Understanding Pain: What to do about it in less than five minutes?

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.

How The Brain Works

This is a great image, to show how our brain works for the different sections of our bodies.



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.


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.

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 …

View page »


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 »


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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 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

Leave a Reply

Exciting Week Ahead!

This week I have a lot going on, so I have to somehow find the energy and strength to both get up early, and stay going! Unfortunately yesterday I had problems with my blog “” (Dystonia & Functional Movement Disorder Sufferer). I found myself unable to get into my site as I could not for …

Read more


Never a Give Up!

  Check out my new post on my blog at: 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 …

Read more

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