What's going on in the brain of someone with FND | Join me as I try to make sense of it all.
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- Опубликовано: 5 сен 2024
- Functional Neurological Disorder - Whats it all about?!
This is all based on what I've been told by various FND specialists and how I've tried to make sense of it all.
I certainly don't have answers to everything so please drop a comment below to share your thoughts.
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Instagram: @the_searchforsilverlinings
FND Hope: www.fndhope.org
maybe you put, oh, i don't know, a *definition* of *wtf* is *FND* in the title, under the title, in the description below or a pinned comment here heading the comments???
¯\(°_o)/¯
oh, here, i googled it
FND=Functional
Neurological Disorder.
🧱🤺
Thank You Carl!
You're Welcome!
Thank you for pointing my omission out Carl. The fact I actually have FND (Functional Neurological Disorder- just in case!) affects my cognitive function and so I’m not as sharp as I was. I’m pretty proud of these videos and the effort it takes to create them considering I can’t count backwards from 5 sometimes but hey… we can all improve, can’t we, so comments like yours are SO helpful to us disabled folk 🙄🤦🏻♀️
@@SearchForSilverLinings
ok ok, point taken!
i just re-read my _snarkastic_ comment,
i am sorry, maybe i thot i was being funny?
nice return volley tho, to be sure!
btw, in 2010 i had what i now recognize as a case of Delirium Tremens, seems that Alcohol, Sleep Deprivation &/or possibly being dosed with something?caused me to have wall to wall visual, sensational & auditory hallucinations & was taken by cops to a hospital, then a psyche ward where for 6-7 days i was in a "sleepwalking state" & then gradually over following 3 days returned for a mostly complete landing.
somewhere in those 10 days i remember someone with a name tag & clipboard sitting on my bed trying to impress upon me the severity of my situation & that if i didn't snap out of it my 10 days would be up & they had no option but to put me out on the streets, miles from my town, no phone, no money, etc.
& this person wanted to know what i was going to do about it.
i vaguely remember not knowing what percent of real she was, but i couldn't stifle my laugh, shrugged & said something like,
"ok maam, i don't know what to tell you, i guess u got to do what u got to do...
i have no idea what's happening or how long i've been here & i would also like to have an answer to some of these things myself...so, if you have any ideas...?"
then she either was real & left
or just evaporated or something.
true story.
oh, & 13 yrs later, i got 3 years sober after that, went back to drinking & got 2 +yrs
no alcohol now &
Breathing, learning to pace my breathing in day to day life is way
helpful, i have head injuries, bipolar & some jagged ptsd & paying attention to
breathing, (u can start with certain practices u can learn online/yt)
is worth more in the way of *finding balance where u are now* than any med or drug i was on.
🙏💜🕯️🌱🐾👣🌿🌎🕊️
Unbelievably RUDE 😠 if you don’t know what FND is, then clearly you don’t have it, you bloody well google it as you did. Get over yourself 😠 and don’t be so sarcastic and critical of someone that has put together such an amazing video. Grow up!!!
I just watched your video and it made my cry. I’m lying here as an in-patient in a hospital bed for 11 days now. Came in my ambulance after having what looked like a seizure in the street. Not my first one as I’ve increasingly had more and more since March last year following a simple viral infection. Experiencing all the symptoms you’ve described. Had all the tests possible, all coming back unremarkable. Just saw a neuro psychiatrist yesterday who told me I have FND. Hoping to get out out of here soon but need a plan of how I’m going to manage the 20+ seizures every day! So here I am finally with an explanation. Your video has made a world of difference. God bless you❤❤❤❤
I too am having seizures. With quite scary distorting auras beforehand. I do get a warning. However once I was in TKmaxx trying to reach the stool in the shoe section when I got that aura warning. Well I didn’t make it n woke up to concerned faces all around me n a bleeding face… cut my eyebrow wide open. Not fun
I can’t tell u how long it took to get any kind of diagnosis
It first happened 30yrs ago.. the fits last for about a week to 10 days then it seemed to disappear. Now I get it maybe once a year for a week. Sometimes I get the auras.
The cognitive stuff is the worst. Fatigue….
@@cap-dangei pray you can return to TJ maxx & shop for fun finds without seizing that sux so much i’m sorry
Try steroids and anti virals ask incase the virus caused inflammation damage or still there causing all this.
I only just came across this video, but it gave me a much needed cry as someone just diagnosed with FND and really struggling with not gaslighting of beating myself up over it. Thank you for your kind and considerate, as well as clearly explained and helpful video
I’m so glad it helped. It’s such a difficult condition to have and to understand. I’m 4 years in now and I think my acceptance is much better but it’s still a daily practice. Be kind to yourself above all things.
Being gaslit by family
@@SamuelOrjiM sometimes we gaslight ourselves too because it’s such a shocking realization
I was just diagnosed with FND yesterday, 5/18/23.
Thank you for making this video.
After 13 years of being tested repeatedly for ms, and shamed for not having it, the diagnosis was shocking, and very upsetting.
My family thinks I'm a hypochondriac, and now they think I'm an emotional faker.
I'm waiting for an appointment with a specialist in Boston, but it could take many months.
Oh I’m so so sorry this is heartbreaking 💔 of course we KNOW you’re not faking, I mean who would?! Sending love and support x
Donna, I am so sorry for your diagnosis, I have been living with fnd for 15 months now. You have to try and understand every part of our diagnosis. The reason I say this is because, there is no tablet for our condition. You feel isolated, frustrated and worried about what is happening to your self.
No one will understand and get what is going on. Donna, you can't understand what is going on with you and fnd, so no one else can't.
The advice I would like to put before you is, don't people please, never take advice from all around you! Your family and friends love you, but they will never get how our condition is frightening and not descriptive.
Listen to your body, try not to get frustrated and confused because its not natural.
You should never have to show how much this is controlling you, with explanation.
Iam here if you need me
You’re in my 🙏🏾
Donna, you have not to listen negative, or people around you are all of a sudden they have become fnd specialist. It's so real and hard to understand our condition ,so don't expect the people around you to understand.
Take every help from specialist , and try and find a solution to deal with our condition. I've had this condition for 16 months now, I've spent 4 and a half months in hospital.
Don't anticipate what is going to happen with your condition ,because it probably will happen anyway. Try and cope and understand what is happening now. I wish you all the best and sincere good will.
Regards
John McBride
I am so sorry for your experience with the disorder and more so the misunderstanding from family
Thank you for sharing this video, and your analogy of train tracks was actually quite meaningful. My approach has been less eventful, since being diagnosed since September of 2021. I was informed that I had two bleeds on the brain, and for 18 months it was a slow haul in recovering. I pushed myself as I always do, as I'm not one for giving up.
The list of symptoms fluctuate at any given time. For me being poorly can simply be extremely tired or fatigue to the point that I can be in bed 12 -18 hours in a day and that can be 2 or 3 days on the trot. The difficulty, was worrying about becoming bed bound, as naturally your body isn't getting any exercise and your muscles are turning into flab.
The list of problems
1. Headaches 2. Tiredness. 3. Vertigo if I stood up at times. 4. Sensitivity to light, so laying in a dark room. 5. Fatigue after the tiniest task. 6. Loss of appetite, 7. Loss of smell and taste. 8. Involuntary movements of my limbs, which is worrying. 9 Pins and needles in fingers of both hands and it varies from day to day. 10. Exhaustion from any mental processing after about one hour, one hour and fifteen minutes.
This was at the very out start, and whilst it is variable it feels like my life is settling down in a fashion. Inasmuch as I seem to be able to cope better.
My coping strategies.
1. listen to what your body is telling you. So if you're exhausted don't be trying to push yourself to complete your to do list for that day.
2. Be realistic, everyday is a bonus. So enjoy being alive everyday.
3. Set yourself very small achievable tasks and over time just slowly increase them, this helped me to build up my stamina, and my concentration, and my determination.
4 I push myself to go out and socialize, for a few hours a week. It can be very demanding, but as long as you remain in control, it is actually very refreshing inspiring, and recharges your "Well Being"
5. I have a hobby like "Art" it gives me great pleasure and it passes swathes of time, without me even trying. I love writing, so I write Poetry and short stories when I can.
Things to avoid
1. Alcohol can act like a downer.
2. Miserable people as they can drag you down as well.
3. Worrying about the "What if" things that may or may not happen.
4. Self - Pity Parties as they are not attractive, and tend to be always when you're on your own.
I hope this helps others.
Thank you for your comment I’m sure it will help many who read it! 💞💞💞🙏🙏🙏
I have fnd I got diagnosed 2 years ago I woke up with it.,it's horrible. Thank you for your video. This is so interesting. We learn these behaviours from our childhood from our parents. Don't do this dont touch that. It's a negative cycle. Pattern that's hard to break. Of unsolved it can lead into adult hood. But there is hope. Keep living life and distraction ,do things that makes you happy. Your so inspiring.
Wow, Thank you for your video, I actually watched it twice just to get my head around some of the things you said. Only being diagnosed in September 2023, I find it difficult when a lot of doors appear to get slammed in my face. Maybe not appear, they do get shut quite often. Some Doctors receptionist need a lesson in humanity, as if it is not difficult enough. Apologies, a bit frustrated. I really liked the way you explained FND and triggers. Especially the circles, Safe, Learning and Danger, I am at the stage of trying to deal with this and I find the Safe zone pretty easy to be in, although it is very boring. The learning zone and the Danger Zone has a very fine line and I cross it every day. Part of my problem is that over the last 60 years, I have been told to give 100% or go home. Now I have to pace myself, use breathing exercises, distractions and anything else to get me to slow down. So frustrating. Take care and much love.
Thank you for sharing this very helpful video. It is a while since I was diagnosed with FND and I still know very little about it. I know my brain is warped or damaged but find everything overwhelming sometimes as I try to figure out what has happened to me and how to get back to "normal" again. I have been guilty of trying to force my body to do what I expect of it but this has resulted in injuries including broken bones, unbearable fatigue, chronic pain, depression, anxiety... and the realisation that the screwed up brain and body I now have is normal for me now though I don't like it. I have subscribed because it is such a relief to hear you talking and to feel not so alone. God bless you. Vera from Northern Ireland
Just came across this video.
Thank you ❤️
I don’t have FND but I do suffer from crippling anxiety and I found listening to your thought process really calming for me in terms of my self doubting etc.
Wishing you every happiness.
Thank you, I'm so glad it helped, even if just a little!
I have fnd and thankyou because hearing someone else explain so well what it's actually like that I cried since I was diagnosed 3 years ago I've been left to get on with it by myself I don't get any support at all because I look ok but everyday is such a struggle for me .
I’m so glad the video has helped but I’m sorry you’re struggling so much xxx
Thank you for this informative video. I’ve had FND diagnosed for the last 2 years. I have been struggling to understand and deal with the psychology vs physiology cause of the thing. Neurologists have been lacking in their help. Computer says no so pls go look at a website and we will see you in a year! This vid has helped me see that the autonomic nervous system isn’t something we can control and the things happening to my body and brain may not show in tests as we done have the right equipment …yet. It’s not that we are imagining the symptoms we have we just don’t have the right machine to see why. ❤
My bodies won't switch off it's unbearable human torture, especially when no-one believes me and I have no one , even my social worker and support worker don't keep in regular contact, I feel like I have nothing, because I've lost everything, my partner, my walking my ability to do almost everything, I was looking forward to travelling and doing lovely things things with my partner and spending time with my daughters and Gransden, but my whole family have Abandoned me
Wow that sounds really, really tough. The Reddit FND subreddit is a really good jumping off point to find community. It helps a lot
Thank you for your video. I have FND, was diagnosed in Sept. 2022. I'm 58 and I believe I've had it since I was a young child. You're spot on in a lot of what you're saying.
I have been diagnosed with fnd for 12 months now, my first diagnoses was a stroke. Then after continuous tests, it changed to fnd. I spent 4 1/2 months in hospital. I made progress, but that's hard to see this, and the reason I say this is because iam in place trying convince myself that it's good. I'm in constant pain, can't walk without my wheeler and my right foot and ankle is at a deformed point, and it's soul destroying. Iam 53 and worked all my life, but not now because of my condition.
Thankfully I work for a great company, jaguar Land rover, to which they have been so understanding. I try and find a structured way of the triggers, but it's impossible. The longest period of feeling pain free is, 4 days. It's so hard to constantly explain what is going on, because I don't know.
John McBride
Hello John, I was taken into hospital with suspected stroke as well, the symptoms were all there. It’s such a difficult condition to live with when the world wants to blame and shame the people who have it. With such limited understanding of what’s going on they just fall back on believing we have control over or symptoms!
Not a good place to be.
I hope my videos bring you some comfort. Sending you love, light and support 💪
Your video is great, and the main reason is because i can relate to it all, also it's a reference point for me to understand our condition.
One of the many frustrating issues with fnd is trying to understand the inconsistencies and how to deal with the variations of each individual symptoms we have every single day.
I know I will never be a 100% again ,and the reason I say this is because we all have anxiety and stress in our lives, and we know that it's impossible to eradicate this.
The pain it brings is so distrustful , I think anyway.
Iam sorry if I am coming across deflated, but no one has a clue what it is we are going through. Love and best wishes to us all.
@@johnmcbride1773 I agree, a very difficult condition to live with but I’m glad this video has helped a little.
I have FND it is so hard . I just want to be better! your video is bringing tears to my eyes thank you for your strong words!!
I’m sorry for the delay in replying. Yes FND is very difficult to come to terms with and live with, not helped by the lack of support and understanding. But it can get better in that we learn to adapt. That doesn’t mean we don’t have bad days because we do, just that day to day you begin to get used to living with FND. I send you love and strength 💞💪
Thanks so much for sharing your journey with FND? Are movement issues such as paralysis, tremors etc seen in most people with FND? Also have you looked into the Gupta brain / amygdala program? ..There are many more techniques besides what you have listed. You can re-train your brain into a new pathways and lessen and calm the stress response, F/F or freeze....which will in turn lessen the symptoms. He has studies to show his program works. He is also in the U.K.
Good info and explanations. I've read a lot of resources, support groups , websites, books.. You gave some insights I hadn't considered,. The circles/rings of safe vs red zone was a new one for me. Now I'm thinking of my symptoms as a sign to slow down..... not pushing through or completely ignore it (which is the advice I read in a book). More tools for the box, thank you!
Thank you so much, I have been diagnosed with FND for about 5 months ago. Still going through the whole health care system in Canada where it is still largely misunderstood. Your video is awesome, thank you
Thank you so very much for this video. Symptoms started 25 years ago but diagnosed 3 years ago. Been to many doctors. It’s been a rough 25 years! Thank you again!
I jus came across this, I've been blamed, shames , abused, made to feel useless, unwanted, unloved and there's nothing I can do to change it , I really have tried so very hard, I've had this awful thing over a year
Thank you sooooo much for this video!!! You really did help me see a silver lining!! We can't let the hard days win!
As an Fnd Warrior.. Thanks for posting ❤
Thank you for this very informative video, every neurologist has said FND and I'm going through extensive testing to rule out other diseases. If i get diagnosed with FND this will be nearly three years with unexplained symptoms. Hope and love to all alike with FND I believe you ❤
Diagnosed today. I have had Long Covid for 3 years, not sure if there is a connection. Thank you for video. ❤
Brilliant video, thankyou for posting this.🤗
So glad you got value from it!
thank you one million times, im a newish f.n.d sufferer and trying to make sense of it all , this has helped xxxxx
Sorry to hear that. How are you managing with the fatigue side of things?
Hello.
I’m a French lady (51 years old) who has been suffering of FND for a year. I have also an auto-immun . (Hypothyroïdie congénitale in French).
So the Covid is maybe the «(déclencheur in French) » of FND.
I speak quite fluently English but I don’t know all the medical words.
Anyway, I understood all your speaking. 🙂
Thank your so much.
Friendly from France
Déclencheur: trigger. 🙂
Hello Christelle, its been a year for myself, also similar age. One of the major issues I find , is the frustration of not being able to the relate to the inconsistency of our condition. So with that problem, how can we move forward in a positive mind.
I know I've improved to where I was, but I was fit and well previously before I got very ill with fnd. There are so many variables to our condition, so maybe that might be reason of feeling so isolated. I just want to get some sort of consistency and understanding of what and why! I totally wish you get better and my heart goes out to you.
John McBride
@@johnmcbride1773
Thank you very much John for your very Nice answer.
When I was younger, I went to USA (Ohio and North Carolina) in august 1989.
These holidays were very happy days for me.
Take care of you John.
🌈🌈🌈🌈🌈🌈🌈🌈🌈
@@christellemege9479 hello christelle ,I hope you are doing well. I don't know how you feel on the issue of isolation , but I am pushing every one away, and the reason for this is because I am fed up of trying to explain our condition and the relentless questions. This was brought to my attention today from my daughter. She is so thoutful and protectful of me, and iam lucky for this. I explained the best I could about my feelings of it all, but it's so hard to express my true perspective on our condition, and how we try to work it all out.
I would like your opinion on this issue if you can please.
John McBride
@@johnmcbride1773
Hi John.
I’m back from my hairdresser. I drove 10 minutes. Now, I’m in my bed writting to you. 😂
Today is a Good day.
Yesterday, it was a very Bad day: I went to my physical therapy and I wasn’t able to do very simple exercices. I felt very down and upset not to be able to move my legs as I wanted.
Some days I accept my condition and sometimes I feel very down not to do my job as before (I was a Nanny and I loved my job…), not to be able to think or move quickly.
I think that you will understand me….
Take care of you John.
I often pray the Virgen Mary ( I’ m catholic).
This condition is very hard to live. We ´re very courageous people…
Friendly.
Chris.
🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈
what a great and in depth video, I have FND!
Thank you so much! I hope you found it useful 🙏💞
I’m on the same mission. Thanks for this video. I recently did a mind mapping test. It shows very high beta. I think there is link between brain waves and fnd.
Thank you for sharing your story! I've just been referred to the Rosa Burden Centre and I am anxious about it... can you tell me what it's like there? I guess there's a long waiting list! x
I found it very helpful and it was a turning point for me in accepting the condition. I hope you get on ok, the staff are lovely x
Thank you so much for this...I 'm gong to the Rosa Burden centre tomorrow and hope I can find a way forward. Much love x
Thank you for this video, my mum was recently diagnosed with FND and has been given anti depressant medication and just kind of left to it.. She went from working in a school kitchen to looking like a dementia patient overnight. All her scans came back fine and she was sent home and has had very little medical support other than some mental health counselling..
Does she have hypomobility it's linked
@@Truerealism747 no nothing like that thanks.
Thank you for a very interesting video. My symptoms started a few weeks after my 1st astrazeneca jab and after 17months of testing have been diagnosed with FND. My diagnosis is that it was caused by anxiety - but I am not so sure as neurological problems have been linked to astrazeneca. Might never know as drs are being deregistered if they say anything against the covid vaccines.
I’m so sorry that has happened it’s terrible the manipulation by the big companies 😢
I'm not so ready to blame any vaccine. My daughter developed Fnd 14 months ago.
She had the az vaccine. Wifie was insistent as she worked for the NHS, I was less keen.
However, a friend of my daughter of the same age, in the same school and class, also developed Fnd, and didn't have any vaccines.
Fnd has been around FOREVER, but known as Conversion disorder, or I'm sure back in time people would have believed those likely suffering where possessed.
That was the most ,it was good .Thank you .😊 This sucks .I hope you feel better .❤
I have been ill for two years and was only recently diagnosed with F N D I can hardly walk I can’t even have a shower or a bath I can’t sit for more than a couple of minutes I honestly feel suicidal
I really understand your plight, but you can do it. Our condition is so frustrating and distrustful and is so hard to even explain what is happening. My advice to you is, listen to your body, never anticipate what is coming and try and deal with what is happening right now.
There is so many variables to our condition and we can't work it out ourselves. Engage with all the medical treatments that is available. You are not alone with this , we are all here for you.
I wish you all the luck in the world and try and stay strong.
John McBride
Thank you for being so brave and helpful
Thank you! My daughter has FND and we are trying to make sense out of it
I’m so glad this helped, even if only a little bit. FND is such a complex condition, and so often misunderstood, that finding support is so difficult. I hope your daughter knows that it isn’t her fault, it IS real and she’s not alone. ❤️
Thank you very much for this video, it’s so helpful and much needed.
Thank u so much, i feel so aline and been blaming myself😢
I just found out that i have this a few weeks ago. My symptoms are weakness and an increased rate of fatigue in my arms and legs, a distorted sense of touch, hemifacial spasms, and numbness in the "pelvic region". I also deal with depression and anxiety, and we think that's the cause but we're not sure yet.
And the more you feed the behaviours of the hysterically minded the patient the more symptoms they have! Help them understand that Functional Neurological Disorder is still considered by some to be a psychological problem.
Think about Shell Shock in WW1 and the emotional struggles those soldiers went through on the battlefield. Most men were able to recover fully and got on with life but others were always affected by mental health problems and were never quite the same again.
Think of FND in the same way and recovery is most definitely possible. X
that is me right now, my legs get so weak when I walk, I walk like a zombie, studder talking, seizures, tremors, migraine, the loud ringing in my ears. I got diagnosed with Pnes
Love this. Exactly right
Thank you I'm currently being diagnosed
I was sure it was MS because there I'd demyelation
You have lesions? I have fybromyalgia.with elements in if fnd
So you have lesions?
Thank you - identical symptoms. Which you the best❤
Thanks for this video!
You're so awesome! I love you .
I have Fnd, all the sign of narcolepsy, huge paralysis..caused by huge trauma..thank you for explanation
But good nutrition is the way out,
Lovering inflamation, cortisol, insulin
And pills calm my amigdala
I’m glad you have your recovery plan 👍
What diet are you finding best
Thanks for sharing
Background music is disturbing to hear
Thank you 💜
Think you for this video.
Does FND cause loss of vision, it has happened a few times, but my sight does come back after a few hours
Its autism ADHD causing it for lot of us lot of mcas inflammation in these conditions
The nervous systems ramped up could be physically related to the spine or viral infections harming such.
@@loveKG26 well hypomobility effects it but autism causes mcas even Charles Darwin had it with his autism
@@Truerealism747 Very interesting as well as the neural tube defects being a part of it there’s more and more to find out constantly.
Very great simple way to look at it but functional neurological disorder can mean you need a neurosurgeon. Be careful.
And what would you expect a neuro surgeon to actually DO?
@@stuartburns8657 Anything that could need surgery. For example obstructive hydrocephalus could use decompression surgery.
@@loveKG26 Hmm. I've read they're able to 'see' FND (or abnormal brains) with the newer Functional MRI scanners, but I can't see anything being acted on for decades personally
@@stuartburns8657 I just know of one lady who had tethered cord surgery, after being told it was just FND in Canada. She went over seas to Spain I think to have the surgery.
One question, whats is FND?
Functional Neurological Disorder
Thanks for the video. I have used your analogy quite a few times. It is simple for others to get their heads around. I wear a sunshine lanyard with my fnd diagnosis. This is in English and Greek for when we go there on holiday. It is probably one of the best aids I have . Best wishes to you
I believe this could also be called mind-body syndrome?
TMS Dr schubiner proves it in his study's
An auto-immun desease.
Simple as that eh?
Got any magic cure pills you can share?
#CancelMarjorieTaylorGreene, tell us you're racist without telling us you're racist😒I'm a white woman btw.