Aww I Hurt


Image from Google pictures.

I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May.

I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that even though everything was arranged for accessible, nobody seemed to care. Well most! 

But at the moment this morning I’m in so much pain! 

I had massive abdomen spasms last night, ones where it pulls the whole body up and holds it there until the muscles relax again. Then it happens over and over! If I could do these myself, my body would look great! 

Only I have no control over my body spasms, they are involuntary just the same as Dystonia. Though because I am diagnosed with Functional Movement Disorder, they tell me it is Functional Dystonia

I also have eye spasms (Blepharospasm), and Hemifacial Spasms. Plus I have Cervical Dystonia, all of which I have Botox injections for. I have had spasms in my left side back muscle, shoulder, arm and hand. These spasms started before any others, so how come they are not classed as Dystonia? Or my leg spasms, where you can even see the muscles moving as they spasm? 

Anyway, they say mostly Functional Dystonia. I get to a point I don’t care what they want to call it all, I just want looking after properly! 

My insides hurt so much today, my abdomen doesn’t get much of a work out anymore due to my disabilities. So last nights Involuntary Abdomen Spasms have left their memory, leaving me feeling in more pain than usual.

The International Symbol Of Access, Image from Wikipedia.

It may sound weird, but as a Chronic Pain Sufferer, you actually get used to your pains and find ways to deal with them. But the unexpected pains, additional pains, they are ones we are not used to so they hurt more.

Well, it’s going to be another hot sunny day here. I hope you all have nice weather where you are too.

As always, thanks for reading and take care X 

Nominated For – National Diversity Awards 2015!

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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 the world.

There are still a couple of days left to nominate, if you wish here is the link – https://nominate.nationaldiversityawards.co.uk/Nominate/Endorse/26876?name=Functional%20movement%20disorder

As Functional Movement Disorder is such a rare disorder, it is harder for us to get people including family and friends, to understand it is real and what comes with it.

Even being put forward and nominated for the award, is yet another awareness in itself!

With our rare disorder we may only add up as sufferers in the hundreds, not the thousands, or the millions like some other movement disorders. But we are here, and we are being heard!!!

I am very proud of us all, how open we can be, and sharing our stories and expressing what we go through.

So good luck to us all, and keep raising more much needed awareness of :

Functional Movement Disorder

We are here! X

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.

How long have you / or the person you care for, had Functional Movement Disorder?

How long have you / or the person you care for, had Functional Movement Disorder?

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Personal Independence Payment (PIP)

Information for all disabled people who claim benefits, and the new upcoming change to our DLA and Mobility benefits system payments with effect from 8th April 2013.

When will it effect you?

Claiming PIP
https://www.gov.uk/pip-checker
This is the link to check on when you may be effected by the new Personal Independence Payment (PIP) and when you can expect to have to reclaim for this instead of the old Disability Living Allowance (DLA) which is all changing this April 2013.

Here is the information given on the Government Website of what the rates are to be –
https://www.gov.uk/pip/what-youll-get

What you’ll get
Personal Independence Payment (PIP) is paid every 4 weeks. It’s tax free and can be paid if you’re in or out of work.

It is made up of 2 components (parts). Whether you get 1 or both of these depends on how your condition affects you.

Daily living component
Daily living component Weekly rate
Standard £53.00
Enhanced £79.15

Mobility component
Mobility component Weekly rate
Standard £21.00
Enhanced £55.25

Connectivity Is Power

Neurons-connecting-to-other-neurons.jpg
(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

Unexplained Psychological Illness Linked To Brain Abnormalities

A must read for any Psychogenic Disorder sufferers!

A very interesting piece in the Psych Central, regarding how the brain in psychological patients does actually change whilst having a psychogenic episode!

That the psychogenic function difference shows up on a PET Scan even whilst the patient is, or is not, having a psychogenic episode.

http://psychcentral.com/news/2013/02/27/unexplained-psychological-illness-linked-to-brain-abnormalities

Happy reading 🙂

What Is Functional Movement Disorder

Body Movements Pic
I was eventually diagnosed with the “Functional Movement Disorder” part of my problems on 17th May 2012.
I was only given a name of a Dr Jon Stone, and told to Google him to find a site that he did about the disorder. I was given nothing else, nothing at all!
I was in shock with my diagnosis, had no idea what it was that I had. Only had a name to Google, no leaflet or paperwork to give me information, nothing!?
Feeling distraught, upset, mixed up, and extremely distressed following being given my diagnosis. Also just having been informed that there was no treatment they could give me for it, other than for me to go off and read this website. That I would be referred to be seen by a Neuro Psychologist, and have a follow up appointment with my Neuro Consultant in approximately 4 months to check on how I was going as I was an interesting case!

I have now had months to both read up all about my disorder, to digest the
information
and try to adjust my life accordingly as I have become disabled over time.

Other than the one site I was directed to read (found below), there is actually very little else to be found on Functional Movement Disorder. Neither could I find any movement sites that listed Functional Movement Disorder on their movement list. Neither was it listed as Functional Neurological Disorder, as it is of course a Neurological Disorder. There is no where I could find of personal experiences on websites either, rather than just all the medical and technical terms and explanations. There is if course the forum on Dr Jon Stones site, there are also a couple of good Facebook Groups that are great to chat and discuss with other sufferers like yourself. But I thought I might find a website set up somewhere, that gave more personal insight. Rather than just all from a Drs view point who has an interest in the disorder, but not actually go through it.

I wanted more, I wanted a site that just told me exactly what was what. With some patient insight on what this disorder included, and how they deal with it in their life. Or not deal with it, so how they get through the struggles and miss understanding of a little known disorder, that even some of the medical society do not know about or understand either.

So I have set up my own site this site, and called it plain and simple
Functional Movement Disorder

With this site I hope it helps give an insight through the mind of a sufferer. That it gives information in a more simple way to understand, and with the information of the diagnosis process and follow on treatment sessions and help.

The site will grow over time, but more from a patients view point. I will also include any interesting information I find along the way.
Do check out the website links below though, for all the information it offers is extremely valuable and very helpful.

This is information from a website I was directed to by my Consultant Neurologist.
The site has an enormous amount of information, which is invaluable for people with this condition.
I hope it can help others to understand this condition, as much as it has helped me.

Link 1 – http://www.neurosymptoms.org/movement-disorders/

Link 2 – http://www.neurosymptoms.org/symptoms/

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The Road To Diagnosis

Please note: I live in England, this is from my personal experience. Others may find the process is done differently, and times and amounts of appointments may vary. As this is a very individual disorder, for each person that has it. I hope that this at least gives an idea, of the process and some hints to help you in your journey.

The diagnosis of Functional Movement Disorder, can take many years to get to. This is due to the overlapping symptoms, of many other Movement Disorders. It is a time of constant questioning, and looking for answers.

I personally, have had some spasms and things happening to my body going on for years. All named different things, and never looked at as a whole. It took me many illnesses, many visits to my GP Doctors, and a few visits to the A&E and Acute Assessment Unit Ward at the hospital.
In the end, having broken down from pain and confusion in front of my GP Doctor. We eventually talked through all my ongoing problems, and the things that had gone on in the past. This in turn, eventually persuaded my GP Doctor to refer me to see a Neurology Consultant.

You see sometimes you have to push it yourself, there is not always someone else to do it for you.

The person that knows your body the most, is YOURSELF.
– You know when it seems to be going wrong.
– You notice the changes.

The Doctor only knows if you make an appointment, you have to make yourself seen and heard. If you are seen in a surgery that has more than one Doctor, you may also have the problems I had where I saw 7 different Doctors in the year. This of course means you have to re-tell your medical history over and over again, and there is no one Doctor to keep up to date with you on a personal level.

There will come a point where your notes will begin to show a pattern, that you have been seen many times. Seen about unexplained symptoms, or the same symptoms several times but never resolved. Or about points in your medical history notes, that becomes noticeable they can start to link together over time.

Once you have reached this point, and are now referred to be seen by a Neurology Consultant there will be a wait for your appointment to come through.

My advice would be to start taking notes of what your body is doing, there are many different ways you can do this. Here are a few ideas:
* Write it as bullet points
* Write it as a journal
* Start up a blog as I did
* Note main days or times, anything out of the ordinary that makes your movements happen and become unusual
* Get your partner or a friend to take videos of some of your movements, try to capture the different movements that happen to you

Anything that you can note down, or videos burned to a disc that you can take to show your Neurology Consultant is useful.
It will help your Consultant to see your different movements, and how you react. If you take in notes, or a journal. It will not only help the Consultant as you will be able to leave them for your Consultant to look over after you have gone, but will help you during your appointment to use as your reference when explaining what happens to you.

Having a piece of paper, a note book, printed out blog notes, these give you something to physically look at as the first appointment is nerve racking.
Your not sure what is happening to your body or why, and you are meeting a Neurology Consultant for the first time that is going to make a big impact on your future life if they are able to diagnose you.

The Consultant will ask you to walk across the room, they will get you to sit and do tests for you to touch your nose, check your reflex responses etc.

Note: DO NOT EXPECT A DIAGNOSIS ON YOUR FIRST APPOINTMENT, YOU MAY HAVE A FEW APPOINTMENTS BEFORE A DIAGNOSIS

The Neurologist will probably not speak too much, they will let you do the talking. They need you to explain everything you can about how you feel your body has changed, and what movements you are now displaying.

All through this first appointment, the Consultant will actually be assessing you. They will be listening to you, watching you and taking everything in.

You may be referred by your Consultant for tests, blood tests, and scans. There are many different scans that can look for different things, so you may be sent for more than one type of scan. You may not be sent for any.
If you have had a recent scan, they will most likely be able to use that one either.

You may have many tests and scans, and you will find that they all come up empty. They show nothing, no results. This is one of the indications that there is no “Organic Brain Disease”, and that it is therefore a “Psychological Disorder”.

This can leave a patient feeling very distressed at the lack of test results, that there is nothing to show for all the pain and movement spasms and upset. Unfortunately it comes with the disorder, and we are told that the disorder can come from past stress and upset at some point that we could not deal with at the time it was happening.

My Neurology Consultant (a Movement Specialist) explained, try to think of your brain as a computer. That your brain (computer) still has all the hardware, but the software is out of date and has begun to slow down. That with a computer you can defrag it, all the files that you delete over time leaves spaces. When you defrag your computer, those spaces all get pushed back together and so frees up more space on the system to continue working at a better rate or speed.

This is where the Neurology Psychologist comes in, a Psychologist looks at how the brain works and why it does what it does.
You will probably be referred to be seen by a Neurology Psychologist, and they will firstly assess you and ask if you wish them to help you. There is no pressure, it is a patients choice.

As I am already going through the process of Psychology Treatment, in my blog I have put up pages to explain what happens. I will copy them to this site and add the links when I have them ready.

PLEASE NOTE: I AM NOT A MEDICAL PERSON, I AM JUST A PATIENT SHARING INFORMATION.


Welcome

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.
___________________________________________________

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, …

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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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Aww I Hurt

Image from Google pictures. I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May. I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that …

Read more

FMD What’s the difference between the overlapping movement disorders? 

Functional Movement Disorder has many overlapping symptoms of other movement disorders, such as Dystonia, MS, Parkinson’s, Lyme Disease, Lupus, Chorea, and many, many other movement disorders.  The difference being that whilst these others are an organic brain disorder, then some may possibly shorten life. The functional movement disorder is not, it is classed as psychological …

Read more

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