About myself...

[Purpleturtle2020]

I were diagnosed with FND last year August.

Were also diagnosed with severe depression, severe anxiety, severe PTSD and insomnia and also severe stomach alcers and a hernia.

Hernia is so bad that my food chokes me at night and had a few time where the food went into my lungs.

Work became difficult as I'm a chef. I would cut myself, drop stuff and struggled alot with the walking and weakness in my left side over all.

Was dismissed cause of my disorder.

Not allowed to drive anymore after the last accident.

While driving i lost consciousness and that is all I can remember.

I fall alot and when I'm alone at home it can become a problem.

Family refuses to except that I have FND and that's difficult.

I'm trying to except it to be able to life a good life with it.

People in general does not understand FND. Cause one day you can walk but next day you can't.

Gotten alot of nasty comments ect...

Story of my life...Read less

[Mic67]

Hi sorry to hear about your lack of support. Not sure if you are on FB or Twitter but you will find many others who have experienced similar.

[Bailey09]

Hi sorry to here about the lake of support you have not had from friends and family if you go on FND Hope on Facebook we would treat you well we are warriors we respect each other

Take Care and be safe x

[Brokendeer]

Hi I have Motor FND which is one of the FND types that is less exciting for the Medical Profession to get involved with, as considered not as life disabling or life threatening as FND Non-Seizures/Blackouts etc.

Though to be totally honest, if you have not seen an FND Specialist Neurologist then you are on a road to nowhere anyway - if the general medical profession does not understand FND, then how can you hope for your family, friends or work to understand right?

I have tried most FND Therapies, been there, done that, got the T-Shirt! And consider myself an FND Veteran now, with family who still do not understand my limitations or indeed why I am limited and not `cured' 12 years on?

FND symptoms from one person to the next can be enormously different and had I not met other types of FND Sufferers I would not have understood the Disorder either. It is not like Parkinsons' or MS because they are well known by the Public, but FND is as Common as those two Neurological diseases.

Feeling like you are in Limbo with your life, unsupported and no one really knows why or how to help, especially the general medical profession does not fill you with confidence just anxiety. I did try anti-depressents for about a year for anxiety(as advised by FND Therapies Neurologist), and that did help a bit to level things out, but the side effects were worse - so I stopped.

Pacing is the key, when you have little or no sleep (believe me I know) you have to pace your tasks, day, week to get enough energy/coordination to do anything at all!

I find splitting up the tasks into Physical or Mental or Bit of Both and toggling between them as my body allows helps to not overload the Brain.

Recently read an article which said there are two chemicals constantly balancing your actions, one excites the Brain the other calms the Brain, if they both reach the same volume at the same time you will pass out (safety mechanism for when the Brain `does not know what to do')- like you have probably seen or heard of from people in traumatic situations or severe pain? Though I think in your case, maybe blood pressure monitoring for a time would not be a bad move just to be assured it is not a POTS type thing as well?

You will over time work out what are the triggers that makes things worse or better and how long you need to recover - it simply takes a little time to adjust your lifestyle.

So my general tips:

Pace your activities and only ever loosely plan anything - expect not to complete anything every time but that it is totally okay! You can get back to it at a later stage, don't stress!

Adrenline levels- try to maintain a calm environment, not too much anger, upset, stress, depression, physical strain, mental strain, fatigue, hot or cold temperatures and that should help day to day. Note: Even watching an action packed movie will trigger a severe attack with me!

Research a little about FND on Professor Jon Stone's Website... neurosymptoms.org/

...and you will see how unusual but common this disorder actually can be and he gives tips on how to explain the FND to others!

Be kind to yourself, Keep Positive!

[Hidden]

my neuros do believe that fnd can be a co-morbidity to ptsd. gulf war vet here.

God bless