Claiming Advice for F.N.D.

[Spanner46]

Hi i am Spanner who has severe FND, i haven't work for 2 years, but because i look alright trying to get U.C. to believe that all my symptoms affect my daily living is a nightmare and i am really struggling to cope any advice,

[DNE92 Moderator FND Hope UK]

Has Universal Credit been rolled out where you live? I managed to get some PIP on my 1st go - I know what a shocker- although despite being dragged out looking totally dead by my hubby, the assessor, the receptionist and then had a helpful stranger join in the fun of stuffing my dead body in our car...I am mobile 🤔. Didn't appeal as I was so surprised to get any thing 1st time round because so many don't. They haven't rolled UC out here so sorry I don't know how you appeal that. Fightback4Justice has a set of really useful examples of filled in forms. Cost £4.99 per month to join. Might be worth having a look at what they suggest to put in your application forms. Plus go for (if it still exists under UC) of recording your assessment interview. I have read that percentage wise more people get their allowance on appeal. The system sucks especially for "invisible" disabilities...although I'm really noticable when in another seizure. Good luck.

[Spanner46 in reply to DNE92]

Hi Louyse, so grateful for your reply. Yeah we have U.C. and even showing them evidence from a Neurologist it has been so hard making people realise that though you have an invisible illness (unless you are stumbling over as if you are really really drunk) they think you are faking and ignore all the struggles you have with all the symptoms that you experience inside you're body and trying to prove that chronic fatigue and severe lack of energy is an absolute nightmare. Having you're reply has given me hope thank you.

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[Kerriekayci]

Hi my daughter also has it very bad she's had to stop going to collage and stop her weekend job that she had it was very hard for people to believe because what they can't see they dont think exist so what I did was when she was having the body jerks and the seizures and the body paralysis I filmed her and showed the doctor's so they could see what it's really like on a daily basis for her I had so many of them that after looking at about 5 vidios they got the message that this is for real and vey serious she even sent some of her friends the videos as they didn't believe her so I think video evidence is sometimes can help people to understand what you are going through

[Kerriekayci]

Also my daughter has only just started receiving pip she had the asment and they had to Google FND because they had no idea what it is but my daughter uses a wheelchair most days as her legs don't Carrie her for very long anymore they did take a long time to give it to her though because they had to look it up and research it first and they also got in contact with her neurologists and her g.p

[Spanner46 in reply to Kerriekayci]

Hi Kerriekayci, that is the problem i am finding that because research has only been started since 2017 i believe, usual Health Professionals, even some Neurologists and definately those in the benefit system they haven't any idea of the condition and how extremely disabling it is to live with and how it affects you, and even more soul destroying is the fact that when you're living this nightmare no one seems care. I thank you for your reply and also the advice as it has given me some hope in eventually finding the help i need.

Spanner 46

[Kerriekayci]

I feel the same I can only be there for my daughter but I don't really no how she's feeling everyday of her life I do no that nobody understands what she's going through apart from others with the same disorder that's why I started recording her to show there so called professionals what it's like for her on a daily basis she does received pip now but after them doing there own research on it and taking around 8 weeks to decide that yes she does live with a very disabling disorder she is on 2 types of medication amatriptlin and pregabalin they kinda do help a bit but she says not much it's so hard for people like you and my daughter to be believed as like I said what they can't see they dont believe

[Spanner46]

Hi Kerriekayci, unfortunately with the disorder affecting mainly the inside of your body, and as a lot of the symptoms are quite hard to explain to other people who do not have the disorder in how it actually makes you feel it is very disheartening. I also feel (which then they wouldn't be able to work) you really need someone who has severe F.N.D. in those departments then you would get the help you need much sooner. In a way i was luckier than your Daughter because i started mine 4 years ago though very mild, and because things started to become a struggle, i put it down to a very hectic work schedule all week on my feet, looking after elderly parents, one with severe dementia and age. It wasn't until i just couldn't stand up and also got stuck down the road 4 times whereby i could not move and had to be rescued, i realised that things weren't right. I was then diagnosed with Vertigo, took 7 weeks of various pills, felt no better and kept adding symptoms (tremors in the head and stomach quite constantly). Was referred to an ENT specialist as i had odd ear pain and sensations, referred for an M.R.I. that showed nothing so he basically fobbed me off, until i stressed to him that i know that there is something very wrong with as i had never felt so weird or ill as this before, hence i was referred to a Neurologist, but because that silly man thought i was just a silly old women, the same silly man ( the ENT specialist) told the Neurologist i just had left ear pain, so due to his ignorance i was put on the bottom of the pile. Hence, i waited 9 months for any appointment all the while gaining more and more symptoms, and fighting the Benefit System who said i should be working. Unlike your Daughter i have had some sort of life, but at 17 it must be awful. I am still fighting the system, but i am hoping before the year is out i may have got someone with them, fingers crossed. I am so grateful to have found this website, because though your problems aren't solved it is a small comfort to know you are not alone.

Spanner46

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Oh am I hear you. I have FND. I have just had my assessment paperwork to fill in.

I used to get DLA but when they changed to PIP conditions changed I no longer was entitled. Proxy thing I can't work because of the anxiety side. Barely go out. Does my head in.

The assessments are awful. The folk that speak to you don't know about this disorder. It's damned annoying. Trying to explain it to someone is bad enough. Yet alone writing it down.

So much to understand. And only those who have it understand x

[Spanner46]

Hi Justsaying65, it is an absolute nightmare. My real thing with it is why have we got a Brain Disorder, so are referred to Neurologists who have studied the mechanics and workings of the brain for years, so they have more of an understanding as to how it works, though even they realise the brain is a very complicated part of our body, yet on an Assessment we are sent to a Health Professional who only knows the very basics, and hasn't even a real understanding of any disorder. Also, unless you actually have the disorder you are totally unaware of how it affects your daily life and all the struggles that go with it, it is beyond me.

Spanner46