FND - Page 2 — Scope | Disability forum
Please read our updated community house rules and community guidelines.

FND

2

Comments

  • wifeof
    wifeof Community member Posts: 3 Listener
    Thankyou for sharing your advice. I will look at Fndhope. 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    No problem at all @wifeof, please do let us know if we can do anything else. Also, feel free to have a look around. :)
    Scope

  • theladylou
    theladylou Community member Posts: 2 Listener
    Hi all, I was diagnosed with FND a couple of weeks ago having had a rapid deterioration in my health following a car accident. I struggle with walking, balance, pain, weakness, fatigue, blackouts etc and my speech is severely effected. I have been off work for quite a while and will probably have to give up my job as they cannot keep my position open forever. I was wondering if others have had to give up work and what experiences they have had with rehabilitation. I am supposed to be going to see a speech therapist and neuropsychologist but am still waiting for referrals. How long have people been suffering? Have people made recoveries? Any advice gratefully received. Thanks, Laura
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @theladylou and a very warm welcome to the community! I'm sorry to hear about your deterioration and the impact this may have on your job. 

    Unfortunately I do not have experience of this, but I hope other members will be able to share their stories.

    FND Hope might be a website that can help, they have all sorts of information and support groups.
    Scope

  • hdeakin
    hdeakin Scope Member Posts: 126 Pioneering
    Hello @Tracybuchanan , @theladylou , @wavedancer , @wifeof , @underdiagnosed and @Susan46 ,
    I have just come across this post.

    I have written a blog post on FND if you are interested or it is helpful: 
    https://hannahdeakin.blogspot.com/2019/08/what-is-fnd.html

    I also had a stay at the Wolfson unit where they treat FND as well as other neurological conditions:
    https://hannahdeakin.blogspot.com/2019/07/my-stay-at-wolfson-unit.html

    Best wishes,

    Hannah ?
  • theladylou
    theladylou Community member Posts: 2 Listener
    Thanks Hannah I will take a look at your blog. I hope your stay at the Wolfson unit was beneficial. Laura
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    Hi all,
    last night I watched a catch up of a BBC2 programme... Hospital.
    The Walton Centre Liverpool was featured.

    I was in there in December where I finally got diagnosed with Spinal PPMS, after 22 years of being given the runaround.

    My point is that 3 people with FND were featured. Oh my word! I had heard of it but didn't know much about it till last night.
    What a complicated and very cruel condition.

    A neuro professor had given  specialised physio to a man featured and what a difference it made for him...but very sadly, there was no more money for the trial to continue.

    I am so sorry for those of you affected by FND and wish you all the best and hope you find effective treatment.
    Pollyxx

  • hdeakin
    hdeakin Scope Member Posts: 126 Pioneering
    Hi @pollyanna1052 I am glad you had a good experience at the Walton centre, liverpool. Gosh that is a very long time to get diagnosed. How do you feel now you have the diagnosis? I imagine mixed emotions. I saw a bit of the programme, it looked really interesting, I am hoping to watch the whole thing soon. But I think others in this group might find it interesting/ helpful to watch. I hope you are all as well as possible x
  • anisty
    anisty Community member Posts: 354 Pioneering
    I saw the programme too @pollyanna1052 and also a woman with FND was one of the participants on the undateables this week.  Not something I had heard about either before these programmes and this site. I hope funding can be found to research treatments and even a cure one day.
  • clare_1
    clare_1 Community member Posts: 128 Pioneering
    Welcome.

    I was diagnosed with FND over 5 years ago now. I'm now 35, I have  many symptoms with FND but my main one is that I am unable to speak properly and my partner and mum have to handle my phone calls and because I suffer with social anxiety also, one of them have to come with me if I ever need to go oppinment ect.

    It has been a very hard 5 years and only just coming round to the diagnosis. It dose take a long time in finding  doctors specialist to understand it is real and not just in your head. From the time Iwas diagnosed,  I lost my 8 year job, they had to let me go beacuse nothing more I could do, I can no longer work as a hairdresser either and we sadly lost our flat due to this and other illnesses I have also been diagnosed with.

    I'm positive part to this is that. Yes times are going to be hard and you will certainly find out who your real friends/family are. Try not to let things get to you, you will have bad days but good days are just around the corner.
    I found for me is to do things on a traffic light strategy. Stop when you feel you need a rest, don't burn yourself out thinking you need to get it all done right then. 
    It's ok to have bad days just try and think of positive things, even if can only think of one thing in a day. Always end day on a positive.

    Know that your not alone and if you every needs chat or a moan. Someone is always about to listen.

    I wish you all the best in getting the answers you need and I'm sure people on here will ha e loads of advice and people to turn to for help if needed. 
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    hdeakin said:
    Hi @pollyanna1052 I am glad you had a good experience at the Walton centre, liverpool. Gosh that is a very long time to get diagnosed. How do you feel now you have the diagnosis? I imagine mixed emotions. I saw a bit of the programme, it looked really interesting, I am hoping to watch the whole thing soon. But I think others in this group might find it interesting/ helpful to watch. I hope you are all as well as possible x
    Hi Hd,
    I feel extremely relieved and happy that I finally have a label and know where I belong! I felt lost all those years.
    After so long I cope as best as I can. I do have a really good support system and a great hubby of 48 years!

    I remember you posting how good the Wolfson unit is. I`m glad they helped you.
    Tae care xxxxx

  • diane01
    diane01 Community member Posts: 45 Connected
    Hi i'm a newbie to this group really wish i understood what was going on in my brain almost 3 months been suffering with shaking legs my brain always feels empty & memory loss eye sight problems unable to take on a daily task with out getting tired easy lost interest in everything because unable to focus i cant seem to communicate with people & somethings i'm getting shaking arms i jerk in my sleep & tremor i get to point where my behaviour changes from wanting to twirl my hair smoke & pick my lip & always feeling feared cant even try to explain how my mind feels  drs says its fnd going off my symptoms of how i'm reacting some kind of neurotransmitters not connecting the way they should i get up like there is nothing wrong with me like i forget then go to do something i'm unable to do then i cry in despair cant seem to control this way of living spend all my time being bed bound drs referred me to a neurologist  after battling for nearly 3 months with them cause they thought it was just mental health due to covid now neurologist list is 18 wks frustrated as tackling this condition & menopause to dont feel i'm eva going to see better days the only support i've got atm is my other half kinda taking one day with me as it comes but i kno he misses the old me like i do! :(:(:( 

  • Susan46
    Susan46 Community member Posts: 16 Connected
    I have fnd too. My symptoms are numerous and very same as MS parkinsons n stroke.
    I've been diagnosed 3 plus years ago and I have many days where its too overwhelming. I'm in wheelchair, confused, hronic exhaustiondissociated, weakness on my right side,  incontinence, tremors etc etc. Its never ending. I'm on fndhope site which helps us understand fnd and others give their stories and listen when it gets too much for us.  
    Relaxing and pacing helps although I'm one of those people who does too much in one go, still can't fet pacing right. Ifbi don't pace myself I'm left happy that I've managed to fo whatever I was doing but chronically exhausted and suffering for days after. Having a good support at home is needed. Fnd can look fake but it's definitely real. 

  • diane01
    diane01 Community member Posts: 45 Connected
    Does your brain feel like its not working properly? I feel like im always falling too & my feet go num hands & legs shake cant describe how my brain feels 
  • Susan46
    Susan46 Community member Posts: 16 Connected
    Yes. My brain doesn't give correct messages to my body. My speech is horrendous now too. Thats when I can say words. Sometimes I can't even speak.
    Pace yourself and if needing a break, go into quiet place and maybe nap. Distract yourself if you can by ignoring what the brain is making you fo and if you use distraction it can work.i have NEAD too none epeleptic seizures which are triggered by lights, noise etc. Do you have these too?
  • diane01
    diane01 Community member Posts: 45 Connected
    Susan its all new to me this pacing myself is very difficult i'm bed bound when my brain does go funny its like i sit & try & focus the best way hoping it will pass soon but waking up in the morning & my brain just doesnt feel mine anymore another issues is i dont feel like i've got any happy hormones if i do one job my brain flares up frustrating when u want to just try & do a bit of something i dont kno what the nead the is symptoms i have is maining feeling un balanced even when sitting jerking & tremors in my sleep shaking legs when standing pins needles in hands & feet & these goes go num too! Spasms everywhere Memory loss & feeling panicky then this compulsive thing where i pick my lip twirl my hair strange behaviour susan its all freaking me out had this for 3 months now & had a massive battle with doctors just to get them to refer me to see an neurologist dr did say its fnd based on my symptoms but feeling there is more of an issues..if u dont mind me asking how old are u & have u had fnd long ?  
  • underdiagnosed
    underdiagnosed Community member Posts: 30 Courageous
    i have fnd diagnosis too although it doesn't explain all my symptoms. i have had health problems all my life which are gradually worsening with age. i use a wheelchair outdoors but the pandemic has made me housebound. sleep is difficult as i wake continually through the night with symptoms. i found pacing myself very difficult too but it gets easier with practise and i feel so much better when i do. overdoing things can trigger symptoms. occasionally i have to soldier on if i'm not getting enough care. i find it hard when my left sided weakness kicks in. when its not too bad i sit at home and knit which stops me from getting bored, its therapeutic and gives me purpose. i feel a bit lost when i can't. i find tv helps, radio can too as does talking to people. if you can find something you're interested in and able to do/follow which distracts you that could really help. you can explore the world online now if you like.
    have you been offered any help for your fnd? there's not really anything available in my area but i think it depends where you live. do you have friends/family/carers who are able to help you when you need?
  • diane01
    diane01 Community member Posts: 45 Connected
    I dont find anything interesting with this condition i feel really hopeless to be honest only so much tv i can watch & h8t just being bed bound but any simple task i suffer foing or carrying out i ave try to push myself just to keep my bones moving but hard to control when my brain has other ideas i have 2 teenagers & a husband who is struggling with me as hes had to take on everything including me being fed up..how long have u been suffering with the condition & how old are u if u dont mind me asking ? X
  • Susan46
    Susan46 Community member Posts: 16 Connected
    I was 60 on 12th Feb. I met my partner in june 2018 and diagnosed in Octobersame year with it. Ive also got c3 to c7 bulging discs which the neuro tried to say symptoms were from. I got 2nd opinion cos my symptoms dont seem to point to what he said. We bought house and moved in together in that Dec but stairs became a no no. My mobility deteriated to virtually nil and fnd physio, neuropsychology and talking therapy all discharged me as no improvement. My partner is an angel. Hes stood by me and helps me. My son moved back in with us because I needed more help. I walk like a weeble, talk gobbledegook constantly and cant remember things just said or done. I noticed that more I stress the worse it gets and symptoms go higher level.
    I've got vertigo symptoms big yime, can't bend down, can't look up the list is endless. 
    But I have a friend who my old school friend put me in touch with as she also has fnd and was struggling. Its nice that we can text and support each other.you can too if you'd like.
    The main thing is to pace. I try but I've always done things as they need done rather than leave it. but then i find myself whooshing , my head feeling like its going to fall off and depend next four hours exhausted. I dont have anyone else andcrely on my fella and my son so much. My speech is horrendous. It's more of a guessing game and random things come out that make no sense or fit in with the context of the conversation at that time. It's hard, it's frustrating and awful to point id not wish it on my worst enemy. I'm just thankful that I've got good support from son and my partner. There's no help out there and no hope really. A postcode lottery in UK.
    You want yo personal message me thsts fine. Its good to know you're not salone suffering. Believe me, there's been times I've thought I dont want to be here. I've thought of ways yo do it but I'd be hurting those I love and I could never do that. 
    You asked how long. Ironing back I've had symptoms come n go for years and Dr's couldn't find the cause.but three plus years ago it just reared it's head full time and I'm crippled with its symptoms. I dldo have NEAD which is non epileptic seizures. 

  • diane01
    diane01 Community member Posts: 45 Connected
    I think your really brave susan glad you've got really good support behind u too!.nice having a friend that can relate to you with the condition i haven't mentioned it to many people because i guess i'm to proud or maybe a bit a shamed because i dont want to be treated any differently if you kno wot i mean because i've never relied on any1 left home at 17 & never been back always been independent regardless 18 found out i had pcod in my early 20s i had two miscarriages & still had hope so easier when ur younger to cope & come to terms with stuff my battle now is unknowning what is next i'm unsure of how to tell my kids about whats going on my daughter just thinks its menopause because i'm also going thru that as well just coming to grips that my body mental state brain is changing within a blink of an eye pacing myself is 1 thing i've never done because always been really active worked & was always on the go i know i need to stop thinking about the girl i used to be a try to learn this is me now but really has impacted on everything i find myself just looking in the mirror & wondering what happened & how the hell do i cope at the moment all so much to take in!. I hoped Finding others would give me a bit more understanding & reassurance but ano its me thats got to expect it wish was as easy as them 3 words xx  

Brightness