FND sucks

[Andrwhll]

Hi I was diagnosed with FND 7 mths ago, life changing to say the least, dealing with seizures, blackouts, Functional weakness etc etc, lost my job, home and now in a battle with the council over duty of care.

If im honest I’m struggling to cope with this mentally let alone physically and nobody seams to understand. Struggling with benefits, PIP which as you all know heightens symptoms through stress.

I guess I’m hoping there are other fighters out there who would like to chat in the Norfolk area (UK).

It has taken a while for me to accept and admit this condition and how it has turned my life upside down.

Andy

[T-KY]

Hi Andy I just got diagnosed with FND myself and i am still trying to understand this.

How did yours start?

Most of the people on this site talk about a injury before having these symptoms mine came out of the blue.

[Andrwhll in reply to T-KY]

It started with a fall from scaffold when it collapsed, initially it was a few blackouts and neck pain which I put down to the accident.

I had various tests and of course I got a clean bill of health apart from the obvious broken bones. The blackouts when on for months until I had stroke like symptoms and was taken into hospital that’s where I was diagnosed, but if I’m honest when I was diagnosed and the doctor signed me off work indefinitely the symptoms got a whole lot worse. I think because I was in denial for a while I had a wall I kinda suppressed the symptoms but once I acknowledged I was ill and accepted I needed to deal with the condition and a new way of life the flood gates opened and that’s when all the other symptoms took hold..

Mentally I’m broken and running out of steam fighting to convince the people who supposed to help that this is real all because on the outside I look fit and healthy.

Day by day is all we can do and try and find a positive each and EVERY day.

How are you coping T-KY?

[GentleFlower in reply to Andrwhll]

That's the problem - looking fit and healthy it's just bloody awful!!!! No one believes you, in 22months in and still finding it hard to get accross to physio's who claim they can help... Argggg drives me nuts..

[Andrwhll in reply to GentleFlower]

That’s the frustrating side of things, we have to live with the physical and mental element of FND with the added bonus of proving your ill.

I got told I couldn’t be homeless because I was too smartly dressed !! I’m homeless because of a medical condition not because I can’t be arsed with work.

But because we don’t fit the stereo typical profile people are suspicious.

[T-KY in reply to Andrwhll]

Hi Andy,

I am still working but it is difficult and sometimes I don't make it all day.

Going to meetings or being around people I don't know very well makes it worse. I have had people ask if I had a stroke because my head, legs and right hand are shaking and I have a hard time walking and talking. The only thing so far that has given me hope is when the Neurologist ask me to put my index finger and thumb together repeatedly and quickly and it made my right hand stop shaking. Now that was at the begining when it was only my hand and it will still help sometimes to stop my hand while I am doing that. It doesn't really work on the other stuff.

So this tells me that I just need to find a way to distract my brain. I am investigating physio distraction techniques to see if that will help.

I will not give up while I am waiting for that movement clinic to call.

Last week I went to an accupuncturist and it helped while the needles were in but it came back when she removed the needles. Next week I am going to a physciatrist and a hypnotist and I will keep trying until I find something that helps. I will follow this site to see how you are doing and see what over people have tried. This is the only place I have found so far that gives me some hope that I am not alone and this can be beat.

Keep hanging in there!

[Andrwhll in reply to T-KY]

Thank you for your reply, this app has suprised me how many people are out there with varying symptoms and there is lots of great advice, I’m trying meditation etc but struggle to focus and manage about 2 or 3 minutes but I will keep trying.

As you mentioned distraction appears to be key in some cases.

Good luck with your adventure and if there is anything I can help with just shout.

[GentleFlower in reply to T-KY]

My symptoms came out of the blue, was on way home from work one evening, been experiencing chest pains in the weeks before then suddenly I had uncontrollable seizures and that was the beginning of a never ending story. So no injuries.

[tabey]

Dear Andy

Im really sorry this has happend too you and i can totally relate to your circumstances. i got fired from my job which i had worked for for over 17 years, lost my life as in i could not do the same things i use to be able to do.

i had a really horrible time with pip and a fight with them which was totally unnecessary and caused a lot of stress. im fighting for a stairlift and wetroom at the moment as have 24 steps in my house and at the age of 39 hate asking for help to get in and out of the bath and stuff like that.

This Fnd is a total pain in the arse and its worse when alot of people are like never heard of it its all in your mind and my favourite one of all you have a computer malfunction in your brain.

Try and i know its hard to set yourself little achievable goals don't give yourself time limits but it's really rewarding when you do achieved what you wanted to achieve try plan your days but dont be hard on yourself if it does not go to plan and take things with a pinch of salt.

we always on here if you need to chat or growl.

This site has helped me alot

best of luck

Tabe

[Andrwhll in reply to tabey]

Hi Tabey

Thank you for sharing your story and your supporting words.

Great advice taking it day by day and having no expectations, chin up and keep battling

Andy

[Samigarrib]

Hello Andy,

It is very debilitating for us but I am trying to deal with it daily too,in and out of seizures between 15min to 6hours,a whole chunk of our lives in sleep and drs have no idea how to manage this condition and how it onset but assume that we are mentally unstable,very distressing.....Sami

[Samigarrib in reply to Samigarrib]

Keep strong and persevere dear friend

[Andrwhll in reply to Samigarrib]

Thank you for response Sami, keep strong and hopefully we will get recognised

[sueyard]

All my daughter whant is her life back with her lovely little boy she is so a fraid whats going to happen next enny suggestions