Gabapentin Tablets To Blame?

I haven’t been well since changing my tablets to Gabapentin, my increased head attacks and seizures, my breathing problems, and pretty much the rest of my body.

I did a bit of research, and am now questioning the Gabapentin tablets being given to me as a Non Epileptic sufferer. As these tablets seem more aimed at actual epileptics, as even noted in the BNF (British National Formulary) the publication which aims to provide prescribers, pharmacists and other healthcare professionals with sound up-to-date information about the use of medicines. http://www.bnf.org/bnf/index.htm


I have done a full post in the information drop down menu.

I hope this information may be of help to others.

Living With Doubt

20121224-171400.jpg
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! 😀

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 🙂

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

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 😊.

New Stories Added!

20140511-163310.jpg

Please check out all the new stories added, of some more extremely brave people who have chosen to share their stories in the aid to help raise more awareness of our disorder.

I would like to personally thank, each and every person who has and is, sharing their stories.

THANK YOU! 😀

Andrea X

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:
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 🙂

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

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.


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.

20130117-104959.jpg
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”

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 …

View page »

20140425-003725.jpg

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

Skip to comment form

  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

Leave a Reply

img_7314

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

%d bloggers like this: