hi, I have been diagnosed with fnd as of Tuesday 22 November 2023.
I would love to connect with others who are going through same thing.
It’s a whole new world to navigate and learn about but in the very short time I’ve had this I’ve already learnt that being positive and strong mentally has a significant effect to your symptoms.
Hi, welcome, yes for sure. Can I ask who gave you your diagnosis?I am a carer of a teenager who was diagnosed with both FND and CRPS.
Being kind to yourself, meditation, mindfulness, trying to keep calm in a storm (when things are pretty intense and you feel out of control), all help and avoid stress and ignore negative friends/family comments, its your journey.
Hugs xx
Thankyou for your lovely response, Defo recognise I need to take all help and keeping calm and being kind to yourself good advice, I was diagnosed by a neurologist at southmead hospital in Bristol after a visit to sdec xxx
Thats the one my friends daughter works at with specialist clinic. Was that Dr M (can't recall surname, she only mentioned it Thurs 😂).How long were you having symptoms before being diagnosed?
What symptoms are you dealing with?
Hi, the thread went a bit off you, what symptoms are you currently dealing with? Always best to address the one that is most prominant/frequent first. Did you get any further referrals?
Your a carer for teens? I’m 19 how do you suggest I manage my fnd ?
I am just one of many on this journey and take advice as well as post links to what I think is good advice from well researched articles (whether found or shared on here)/experience. Everyones story is different, we just take every day as it comes, no expectations/no disappointments and just live as normal as possible lives. Yes some days are challenging and I have do do a 360 on my day but fortunate this is possible, be it a tad stressful at times.With FND there are so many symptoms and additional stress/anxiety symptoms (I believe) are due to the lack of support from the medical profession and at the beginning belief of friends/family (although have your well-being at heart) too. Pretty ironic really when sub conscious stress/not dealing with emotions could (but not in all cases) be a trigger.
Try and deal with the main symptoms (which I don't know what they are) first. There are lots of other facebook groups mentioned below and the UK site, neurosymptoms.org is definately an introduction to FND/CRPS (thats where we were directed).
But don't take medication advice, just because it works for one, doesn't mean it works for others and has to be prescribed by a medical professional.
Practice relaxation techniques too.
My fnd is triggered by emotions n when it gets to much I just shut down and I have lose of sensation in my legs , ticking , hand tremors etc etc
Sorry to hear that. Knowing the trigger is half the battle, so for many that is a positive.Try to avoid putting yourself in stressful situations and take time out if its unavoidable and it all becomes too much.
There is a really good graphic novel "comic style" illustrated for children/teenagers (but I would recommend newly diagnosed adults read to) that shows a child having functional seizures (from recollection) but when she got to sense the onset of a potential seizure, she took herself out the situation. Written for FND hope and its called "Not there".
Talking therapy may be recommended by your specialist but I think you can self refer.
My son used to have the dumbness in his legs and that I believe was due to chronic pain, ie it was too much and the brain blocked the signal (in its simpliest terms).
Yeah I’ve used up every therapy nhs can provide as I’ve been in therapy for 5 years so sooner or later I’m gonna be in the back of the waiting list for some more therapy and I just wish that therapy came easier for people like us but I guess life’s never fair .
Yeah I’m still waiting to hear back from a neurologist who specialises in fnd ( my neurologist referred me ) but it’s been a year since I’ve been waiting and it’s just stressful
Sorry to hear about your son
Can I ask, curious you mentioned you have been having therapy for that last 5 years, is that when you were diagnosed with FND or is that a recent label?
I was diagnosed with fnd last year December but had symptoms 2 years before
I’m in therapy but I suffer server mental health problems
Can I ask, were you diagnosed with FND when your 5 year therapy ended? As you mentioned you had symptoms 2 years prior, during which you were in therapy.
My 5 year therapy didn’t end I’m still in it , I was Diagnosed during my therapy years
Oh ok, just checking, hopefully they will fast track you back.
Because it’s free nhs are cutting down my therapy and they probably gonna take me back waiting list so others can have a chance sigh and private therapy is soo expensive
I was supposed to be referred to mark Edward ( I’m guessing you know who that is )
Please consider joining Facebook group FNDHOPE.ORG or any of the others available. They will supply support, advice and information to help
Swelling with FND?
FND 😢
What therapy if no signs of psychological problem ?
Overcoming FND?
??FND v Ischemic Stroke??
