2018 FND Awareness Day UK!!!

Hi there to everybody who suffers, or looks after someone who suffers with a Functional Movement Disorder, or a family member or friend. Then this is a shout out to ALL OF YOU 😁

Today along with six other organisations and charities, we are doing our best between us to raise as much awareness as possible of FND / FMD / NEAD, and all the symptoms that come with it.

So if I could ask you, the sufferers, the carers, the friends and loved ones. Will you join with us and share everything you can about this disorder, because it needs to be known and understood by more of the medical profession than who knows it at the moment.

You can share anything from this website, any information that can help to teach others will be great. So I thank you in the hope of your help, and remember, you can continue sharing as long as you want. One day for a big information push, but a small push here and there continuing throughout the year will be just as great. 😁👍💕💪

#Voices4FND #Voices4FMD #Voices4NEAD

Join in our UK Awareness Day 25th March!

Functional Movement Disorder & @FMDMovement are delighted to be joining 6 other FND/NEAD Organisations across the UK in joining together for ‘FND Awareness Day 25th March 2018’. During this period we hope many people will join in sending in short videos using hashtag! #Voices4FND
Please see the attached poster for all details, this poster can also be printed out for you to post and help in our awareness!

i hope,that some of you join in the awareness, even by. Posting on your own personal page. All awareness is great, so,go,for it! X 😀

Research is ongoing for ways to help patients!

Go check out the new neurology paper I found whilst researching, showing that we are not being forgot, but research is still being pursued to find ways to help us! 😊 👍

Just click to find out more!

Research is ongoing to get help for Functional Patients!

Dystonia Society – Questions & Answers with Professor Tom Warner

AS some of us suffer from Functional Dystonia, this can be really helpful. additionally anyone who suffers from the involuntary muscle spasms, this may help answer questions for you too.

Here is a link to The Dystonia Society website, that has the link to Dr Tom Warner.

https://vimeo.com/127132876

He has very kindly answers lots of questions, and gives great answers in an understandable way.

Here is the question list, and time points you will find them.

I hope this will help some people who have some a Dystonia movements like myself, alongside our Functional Movement Disorder.

New Personal Stories To Read!

Please take time out to read our new sufferers stories, and catch up on the others.

Other Sufferers Stories

We have many brave people happy to share their stories, to give insight to raise awareness of our rare movement disorder. To help both other sufferers, their families and friends, but also the medical proffessionals that know very little about it too.

We are here to try to get our stories out to the world, to make the world know about Functional Movement Disorder, and what we go through, what it does to us.

We exist through some of the most painful spasms, head pains, difficulty breathing, unable to walk, having memory problems or foggy brains. With aching limbs, inflammed muscles and joints, and many other symptoms.

Living with a chronic pain syndrome, functional dystonia, involuntary muscle spasms, and from all the other medical problems is not easy, which then gives us chronic fatigue. This is a neurological movement disorder, which should be known about as much as MS or Parkinsons, or all the other movement disorders out there.

Please share, and help raise awareness with us during our awareness week.

Many thanks in advance,

Andrea – I am a sufferer!

Functional Movement Disorder Awareness Day 25th March!

Functional Movement Disorder Awareness Day 25th March!

Every year we do an awareness push, to try to get people to find out and know about our very rare disorder problem, “Functional Movement Disorder“. This is a very rare Neurological Movement Disorder, doctors find it difficult to name what we have so it gets named as “Functional Disorder“.

By posting our website pages to all your social sites, or add to your blogs, this way we grow awareness. Additionally of course we can raise awareness just by word of mouth, talking about our disorder to friends and family. Talk about it anywhere you go, in social groups you are part of, even in the school playground so the children can start to learn too.

SHARE YOUR STORIES

If  you want to share your story  you can send it by the contact page, or just post in the forum and I will copy to the story page too so that more people read   and learn about “Functional Movement Disorder“. If you have a couple of lines you want to share, of how you feel about your pain and symptoms. Are you sick of taking so many tablets , sick of getting injected to help the pain, or all the blood tests to keep making sure your liver is okay from all the meds!? Or a couple of lines of your thoughts on the change to your life, how your body has changed and movements changed, send those too and I will add them to our posters. Please, feel free to share anything you want, and if you send a story, let me know if you want your name adding in full or short, or if you wish to remain anonymous.

Additionally, we have the disability aspect of our disorder, and the upset of having to claim PIP   which is our right to claim. Yet we are put through such stressful and testing times just to claim a small amount of money, this has an impact on us with the additional stress and anxiety,  and depression. Leaving people laying in bed for days, weeks! To the point that a few people have felt it easier to take their lives, this just shows how distressing it is and so very sad. We need help not hindrance !!! If you have a story that you want the rest of us to know, or you have any tips that can help us all through the process. If you can shed any light on where to get good help or what worked for you, then again please feel free to share. Either by using the contact form here on the website or message us through the Facebook page , again let us know if you want your name attached or if you want to be anonymous, but remember if you post on the facebook page then it will of course show who you are.

Let’s share and grow awareness, of our rare and very little know about “Functional Movement Disorder“.

Thank you as always for reading, its this sharing that helps get our disorder known about. please share to your social sites!

I Wish I Was Invisable

Sometimes I write poetry, to get my hurt and feelings out. 

The painting is also one of my own, as when I got Functional Movement Disorder I found all my artistic side 😊

So I decided to share one of my poems with others who understand.

Just click the link x

https://youtu.be/CZlBY8-UOKYhttps://youtu.be/CZlBY8-UOKY

I hope you liked it 😊

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 

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 or psychogenic as some name it, but it is not life shortening.

FMD sufferers have problems where the messages to and from the brain start getting mixed up, as they fire across the neurons and synapses in the brain. Due to the bodies Central Nervous System “wiring”, which is the signal sending and receiving lines. The Central Nervous System suddenly has a disconnection, and the persons body stops moving and functioning correctly.

It is not totally understood why this happens, but this is the part spoken about when the “brain breaks!”.

The “brain break” happens when a person has gone through a traumatic event at some time in their past, but at that time their brain was not able to process all the upsetting information so hid it away in the back of the brain.
Until a time where the person is back to a stable happy life, then the brain takes it upon itself to take out all these surpressed feelings to start and unravel and deal with them.

Well the brain thinks you are happy again, so you can take it now yes?
No!
It’s at this point where in effect the “brain break” happens, making the brain stop working properly and misfiring its bodily commands. When it causes havoc with the central nervous system, sending the signals to and from the brain incorrectly.

We can have so much going on classed as functional, yet some sufferers may still have some actual real problems.
Only we find that once we are labelled as functional, all the Doctors class every problem we have as “Functional”! It is incredibly upsetting, and can take many more years for sufferers to be listened to, and to get correct diagnosis’ for other problems.

I myself alongside my FMD have Dystonia Blepharospasm, Hemifacial Spasms and Cervical Dystonia. I just had my Botox injections last week, so am looking forward to a bit of relief in the coming days and weeks.

I also have a lot of back problems, where I’ve had many steroid facet joint injections, along with a steroid epidural back injection. These are painful, but none have worked for long, the steroid doesn’t seem to work for me.

I hope this answers some questions, but I’m happy to answer any more, as the more answers the more people get to learn.

Thank you 😊.