Fnd

[Wildchild666]

I've recently been diagnosed with fnd and neurology have said that it's pain that causes the relapses I'm unable to walk,talk andy arms don't have any movement at all, this can last up to a month AHH. I work in a supermarket and am a single parent so SSP doesn't cover the bills. After a bad attack at the weekend the hospital have referred me to social services and put me on sick again I've only been back a month on limited hours. I suffer with neuralgia and other health problems. Can anyone advise me on what steps I should take as my life has turned 360 in less than a year. I was active Never sat down to now crawling around and walls being my new best friend, the worst thing for me is the speech as I'm a full on chatter box to having an attack and having to write notes which doesn't even have make sense and looks like a 2. Year old has written them,

[210272]

Oh that's rough, Wildchild666. I'd ask whoever diagnosed you to make appropriate onward referrals for you so you can get the help you need. I wonder why they didn't do this in the first place? You mention that the walls are your best friends - do you have problems with your balance? If so I would also ask your primary care doctor for a referral to a reputable balance centre.

[Wildchild666 in reply to 210272]

Thanks for your reply, neurology said it's pain that causes my fnd I suffer with neuralgia which is a big problem and the attacks seem to happen when that is playing up, and that I needed a distraction. My legs have no feeling in them at all so I'm having to bum shovel around. I use the walls just to physical get around as my arms aren't affected. Can't lift my legs at all I'm dragging them around. Since my first post, social services have said they would do an assessment of my house for rails etc, and the brain charity have referred me to counciling as it's now effecting my mental health. My gps just say we will refer to you back to neurology, but don't seem to bothered and it's my vitamin d level that is making me depressed, that's why the brain charity have referred me to counciling and not my GP. It's worse as I'm a single parent I can't look after myself at the moment never mind my child and everyone seems to think that's ok. It's embarrassing when you don't make it to the toilet on time Sorry for the essay. Banging my head against a brick wall. I've never suffered with any mental health issues now I'm regular panic attacks the slightest things set me off. I'm starting to think I'm just a burden on people

[LouBL0u in reply to Wildchild666]

Hi you are not a burden but I understand why you feel that - I did too!3 years ago I banged my head and subsequently got diagnosed with FND.

I requested a referral to the Rosa Burden Centre in Bristol and it turned my life around! I was scared to be an in patient for 3 weeks but family helped out. I had access to physical OT speech therapists. A named nurse a psychologist and my consultant. Being with others with FND was a revelation and we had a garden, art therapy, lounge so when not having a treatment we could support one another.

Please get referred to a service like this - if U.K. based there are some places but you can request anywhere… it gave me hope, made me realise I’m not alone and supported my recovery. 3 years ago I could hardly talk or walk, now I can ( not all the time) Take care 🌼

[LouBL0u]

My diagnosis since that bang to my head are - post concussion syndrome then FND, then anxiety disorder, then complex PTSD. I am just finishing EMDR and that’s been amazing.

The NHS is over wrought but don’t let one GP stop you getting the help you need. You are a fighter and can do this! It’s a struggle and waiting lists are long so try not to get too disheartened.🌼