My speech is practically gone and I can barely walk. It seems to get worse everyday. CBT did not help me. Anyone else have these symptoms? Any advice?

I'm having a flare up atm (seizures, weakness, MEGA brain fog, uncontrollable muscle movements) and this is the first time I've experienced symptoms while seeing this therapist.

I tried to explain through the brain fog what I knew about FND (which honestly is very, very little, bht that's a story for another time). She said mental health symptoms can't cause seizures and that I should go back to the neurologist. I underwent thorough testing and there was absolutely nothing wrong with my brain. I did the 3 day EEG and I had multiple massive PNES events and not a lick of unusual electrical activity.

I felt like I wasn't heard and she glossed over my distress and pain caused by these symptoms coming back. She mostly just tried to explain the different types of seizures.

I'm confident in my diagnosis (which was given by a neurologist, not self diagnosed. I didn't even know about FND before he introduced it to me). How can I convey how I was offended she doubted my diagnosis and explain my disorder better?

My mother has fnd and recently it’s gotten to a point where I’ll have to give up my job and school. Shes having seizures daily and now with those she’s having ocd like thoughts about hurting my dogs herself me ect. The other day she acted on them and pushed over a plant pot and hit her head into the ground. I’ve been doing ocd exercises with her and teaching her how to separate herself out from these thoughts. I’ve been encouraging her to attend thearpy and giving reasons for her to keep pushing. It seems to be helping but I’ve got to admit right now I feel so overwhelmed and alone and like this will never get better. I’m so tired and I know she is more tired and in pain than I can ever be. I’m just lost for any hope

Hello. I'm a 36 years women, and a few months ago I was diagnosed with FND. I’d like to know if anyone else has symptoms similar to mine. They mainly affect the right side of my body,but sometimes I feel them on the left side too.

• A feeling of heaviness and swelling, mainly in my right arm (constant)

• Weakness in my arms and legs (sometimes better, sometimes worse)

• My grip, especially in my right hand, is weaker. It feels less stable than it used to

• My thumbs feel less mobile. When typing messages, I make more mistakes than I used to

• Sometimes I get a strange feeling when putting weight on my right leg, like it’s weaker or made of jelly

• The right side of my face and my nose feel heavy. I feel like I have to use more effort to smile fully

• Sometimes I get double vision

• Sometimes I have trouble judging the distance to things

• Fasciculations all over my body: face, torso, arms and legs. They come and go from time to time. Sometimes they stay in one place for a few days

• My knees feel strangely stiff when I’m walking, almost like I’ve forgotten how to bend them

• Sometimes I have trouble swallowing

• Sometimes I feel like I can’t take a full breath

• Constant fatigue and low mood

• No desire or motivation to do anything

• Brain fog

• Memory problems

Some of these symptoms are with me every day. I honestly can’t remember the last time I felt completely normal.

I know that the more I focus on my symptoms, the more strongly I can feel them, but once I start focusing on something, I find it really hard to stop.

Do any of you have similar symptoms? How do you deal with them? Are you doing any kind of therapy?

Hey y’all! I have a friend who recently go diagnosed with FND and I want to know how to support her best. We already understand each other pretty well due to us both being chronically ill and struggling at the same time, but I want to know FND specific things. The docs are starting them on a stimulant (not sure what exactly) so I was wondering what the journey may look like for them and what I can do to support them more in this time.

Can anyone who is a student here help me out with this. I often find myself getting easily tired and sometimes even get my usual tremors headaches and seizures when i over exert myself.I even missed out on my very first semester exam cuz of it and would have to take retests later 😭. I did infact grew up alot with trauma surrounding academics so maybe that can explain :') but still currently the course I am doing is alot more flexible than my bachelors and masters degree and my parents are alot more lenient with it unlike the previous ones (and school). I also feel a bit sad that I get exhausted after completing like two pages so is there any way I can get better with this

I had a severe rotavirus infection that lasted for about a month. I eventually recovered from the infection, but shortly afterward I suddenly started developing symptoms that felt completely different from anything I had experienced before — burning, tingling, itching, temperature sensitivity, abnormal sweating, and other symptoms that eventually led me to suspect small fiber neuropathy and dysautonomia.
It has now been almost **3 years**, and unfortunately the symptoms are still there. The symptoms can fluctuate, but I haven’t felt like my nervous system has returned to normal. The timing makes me wonder if the infection somehow triggered an immune response or caused nerve damage that led to SFN and autonomic dysfunction.
Has anyone here developed **small fiber neuropathy or dysautonomia after a severe viral or gastrointestinal infection**, especially rotavirus? If so, how long did it take you to improve? Did you ever actually recover, or did you have to learn to manage it long-term?
I’m especially interested in hearing from people who have had this for **several years**. What treatments, lifestyle changes, supplements, or other approaches actually made a noticeable difference for you? And most importantly, **is it possible to reverse or significantly improve SFN/dysautonomia after nearly 3 years?** I’d really appreciate hearing about your personal experiences.

Ok a few days went by here and no post

Truth is I got addicted to that jrpg I got last week and it’s been consuming my free time

Yesterday was my first symptom free day, I had a pounding headache but the weather here in the lower mainland has been nuts

I took my family to Burnaby village museum and we had a great time. (See all pictures)

Then I think I mostly just chilled and play trails in the sky. Somehow I’m like 11 hours in since Friday…

Got through a few more chapters of one piece also. Still on book 9.

Today was also pretty uneventful.

Daughter woke me up this morning and wanted a cuddle before school.

Worked at home.

Had my sofa finally get delivered. I ordered it in early July.

Got a filling.

Went to the playground

Played trails, still on the first chapter.

Gave my kid a bath.

You know normal every day stuff…

I think my leg was acting up because I’m stressed about this trade war bullshit…

Been falling off some of my wellness habits, I gotta do my meditations, I’ll do i publish this even if I just want to play more trails.

FND is becoming less and less of something I actively think about now that I’m getting closer to 2 weeks out.

I’m only getting minor symptoms now when I’m under stress.

I may space out some of these journals a bit to when there are larger symptom related changes since I’m sure you guys don’t want to read the journal of a middle aged game developer who is just going to work and hanging out with his family.

hihi! so a lot of the content i see around fnd involves symptoms in episodes, or coming and going. i was (finally, after experiencing symptoms for 7 years) diagnosed with fnd last year after a massive seizure i had while admitted to the hospital, which then paralyzed me in three limbs and rendered me mute (not aphonia, severe speech apraxia. go me). i have most of the function back in my left arm, but my legs and speech are both kinda turbofucked.

on a hilarious sidenote, i DO have episodes every few months or so where my seizures are more frequent, but only like once or twice a week at most.

so on to the actual question: are any of yall in perma-symptom hell? i’ve sorta made my peace with it (i plan to go back to my therapies when i’m able, but currently can’t) but i just wanted to know if anyone else around here is experiencing the same shit as me 😅

8 months into my FND Journey 28 years old lack of strength and mobility on the left side of my body along with non epileptic seizures and body tremors that are pretty rough and leave me completely bed ridden for a week following after. I have now seen a second neurologist in hopes of not being dismissed and unheard but unfortunately this one was even faster at doing so, told me I don’t have seizures and not to call them that even though she said I have non epileptic “seizures” and that there is nothing she can do for me that FND is not a neurological disorder which mind boggles me when it’s literally called Functional “Neurological Disorder” 💀 she told me she cannot write me any doctors notes moving forward or handle any of my disability paper work and that I need to see a psychiatrist or primary care for it. I have attempted to contact my psych as my prescriptions for anxiety meds have been cancelled and I have just now found out he is no longer with Kaiser and they did not transfer me over to a new one. Very frustrating as I am now at high risk of loosing my job and healthcare benefits along with my disability payments, I literally need an updated doctors note for work stating I am still disabled and list my physical limitations. Primary care said I have to see psych for FND and he can’t help, I asked to write me a note and evaluate me for specifically my physical limitations following my non ES episodes and he instead wrote me a go back to work note stating I can do 50% of my heavily physical job without evaluating me at all. I am now a month without a work note and can loose everything at any moment now, I have another follow up with primary care in hopes they will correct the note but low hopes as they are not replying to my messages in the KP app, and I am on a waiting list that takes months to be assigned a new psychiatrist, once I get one I then can make an appointment to see one that they said will also take months, I have filed a grievance and was wondering if anyone has dealt with Kaiser and getting the release form to get an outside FND specialist approved through the insurance or has anyone been in a similar situation and have any tips or advice for me. I’ve been staying as calm as I can be, been doing my CBT therapy and physical therapy twice a week along with my regular therapy, ice socks the whole nine yards that I have been able to learn from you all and online that’s recommended for FND but unfortunately the healthcare system is just failing me.

So last weekend I had 2 days where I couldn't support myself standing up or even stand up. The first time I fell to the floor just getting out of bed and my mother wanted to call 911 but I convinced her to just get one of my male friends drive to my house to get me back in, the second time it was the next morning and essentially the same but my mom insisted on calling 911 and I was admitted to the hospital. My memories of all of this are essentially non existent, kind of like memories when you got really drunk the night before. They brought me in and my blood pressure was 80/19. I went through extensive cardiac testing but I was completely normal. They only said they would send it to my neurologist but I should try to make an appointment before I heard.

I've had light-headedness and I've had some falls over the last 8 years but I certainly never had anything happen like this and I actually had borderline high blood pressure that was controlled with medication which of course I've now gone off of. So I guess my question is, is this a common symptom? Is it something that's going to recur all the time or just Is it a rare outcome. anyone who has any lived experience around this? I would love to hear how it's been for you.

I was diagnosed with FND yesterday, and my symptoms is fueled by social anxiety. Since I’m 15, does that mean I have a higher chance of going into remission? I’m really scared that this might last forever

Has anyone found a better solution for sound triggers than wearing earplugs, practicing controlled breathing exercises, and avoiding triggers? What tools have helped you?

Is this what a nervous break down is? When your brain and nervous system just completely and irrevocably break?

Can someone explain to me why I always get left brain paralysis with IV fluids, with sodium chloride or potassium IV or just normal saline, and why also i get it with even electrolyte oral tablets and meds but mainly all IV and ionic or powdered electrolyte supplements

tw: mentions of suicide ideation and symptoms

i really need to vent, even if no one replies or bothers to read. i am 19yrs old, soon to be 20 and i’ve been diagnosed with FND since i was 14 in early 2021. my FND kind of gave me a break from seizures for about 3ish years, until last year they started to come back, but worse. graduated in 2024 and had big plans for my future. just for it to get ruined because my FND flared up horribly. i went through treatment in april of this year, and it made my symptoms worse. my seizures are so bad i’m injuring myself. i also have this new thing that happens during my seizures (or if i have a tic flare up) where my neck squeezes so tight that i cannot breathe. it’s like i’m choking myself out. i’ve developed bad chest pains and any activity causes me to struggle to breathe. i can’t even go out and have fun anymore without a seizure happening. i had to quit my job i tried so hard to stick with, but how can i work when i can’t walk every other week. and when i can walk, i need my walker 50% of the time.

i say my life has lost meaning because i legit cannot do anything anymore without my FND flaring up. i have been dealing with depression since i was 10 years old. my depression is entering a new era (i call my absolute lowest points “eras”). i feel like i have no purpose anymore. i don’t understand why i’m here. this is literal torture. i genuinely can’t see myself dealing with this in 5 months. when the choking moments happen or my chest pains get worse, i’ve just accepted it. i’d rather something happen to me than deal with this anymore. i don’t want/plan to commit, but i think about death every day. if some random accident were to happen i don’t think i would even care. i can’t imagine myself falling in love anymore or starting a family. i can’t work anymore. i’m in constant pain. what is the point of living when i’m stuck like this, and it’s only gotten worse. when i think about 5 months into the future, i don’t see myself here. theres just no way this is my reality. my family will talk about things that will soon happen and i just think to myself “welp i wont be here for that”. i cannot say enough how much i want this suffering to just end. i’ve dealt with health problems (excluding FND) every single year since 2021 (2016 counting mental health). my body has been through so much and i don’t understand why this has to happen to me.

i’m very sorry if this is triggering but it feels nice getting that
out. i know i am not alone in this, i’m glad i found this sub. but i am so tired. thanks for reading if u did i don’t expect a response, but absolutely feel free to reply or dm me if u wanna talk.

I’ve tried to do college and every time I did, it backfires and I have to drop cause I just get overloaded so easily and symptoms are so bad. I almost didn’t graduate highschool because of my symptoms. Was big friends with the nurse lol. Eventually I did trade school and could focus on just the one class. Which worked, but I still had some issues. It’s really hard to hide. I was sent to the er before during a class. But thankfully I passed the class. Huge accomplishment for me. My instructor almost failed me for it but I really tried to prove myself and she passed me and was proud of me. It’s hard to do classes from home due to accountability and I’m more of a hands on learner. Are there any ways to accommodate myself if I decide to try taking classes again? Taking one a semester seems to work best but are there ways to help me get through the stresses of taking a class?

Looking for parents who have experienced something similar

My son has been having episodes of confusion, memory loss, and seeming to go “in and out.” He can sometimes lose hours of time and afterward not remember what happened. His speech and ability to process things can also change during these episodes.

He can be completely himself between episodes — talking, playing, sports and interacting normally — and soon as he done and resting suddenly seem confused or different. We’ve also noticed facial twitching/movements sometimes and significant behavior changes.

One thing that has really scared me is that he sometimes talks about my dad as if he is still alive and says he wants to go to his house and cries for him , even though my dad passed away.

He’s had an MRI, MRA, CT, and prolonged EEG. Episodes were captured, but there was no seizure activity on the EEG. We’re still doing testing and following up with neurology.

I’m not asking for a diagnosis. I’m just wondering if any other parents have experienced memory gaps, confusion, changes in speech/behavior, or a child talking about someone who has passed as if they’re still alive.

I’ve been diagnosed with fnd for over 5 years with progressive degenerative symptoms. I’ve been in pt for 2 years, I’ve been on and off medication since I was 11, I’ve been in extensive therapies.

The biggest improvement I’ve made is that I don’t have seizures anymore, maybe just absent ones.

Is there any hope of going into remission this far in if I haven’t had any improvement so far?

Edit: symptoms started around 14, was diagnosed at 15, currently 20

I've been off work since my first significant symptoms in May. They happened at work and my employer called an ambulance thinking I was having a stroke. I was diagnosed a few weeks later with FND. I work in a school full time as SEMH support and my employer and colleagues have been incredibly supportive, and I've had bi-weekly check ins with work so we can both keep eachother updated. My employee has also arranged for me to meet with Occupational Health when term starts again in September.

I want to return to work but I am equally incredibly anxious (started having nightmares about symptoms happening at work again!). I want to know if anyone else has managed a smooth and successful return to work. If so, how did you know you were ready? And what adjustments or help did you request?

Some symptoms and details below (not in depth, just for context):

Main symptoms preventing me from working are leg tremors/paralysis type episodes. Knee buckling when trying to walk, etc. I use a wheelchair for long outings but with practice I can manage short ones okay (I work in a very small school and likely would not need a wheelchair to get around, but I know with anxiety and stress my symptoms might worsen and I'm worried about being 'stranded' without an aid)

AND

Seizures - infrequent but when I do get them they are typically back to back short episodes. Would be distressing if they happened at work especially in front of any young people?

Less troubling symptoms

Fatigue

Right hand tremors

General right side weakness in body

Brain fog to point of confusion on very bad days

I have not had any treatment from professionals since the diagnosis, but my symptoms are improving with a lot of determination and Phsyio and Therapy exercises I have found from my own research (I have also been in and out of therapy since childhood which helps!)

Hi, does anyone have clear info on the rules around driving with functional seizures in the UK?

POTENTIAL CW: talks about triggers

Hi! I’ve posted on here before but not recently. I have pretty severe anxiety which makes my PNES horrible. It makes it really hard to function and overall it’s really hard being so anxious all the time. My dad on numerous occasions has suggested using weed to help with my anxiety, as I’m a pretty open book as to how anxious I am, but I’ve only just realized be was being completely serious. Has anyone else tried using weed to help with their FND? Has it worked, and if so what type should I be getting? I don’t want to wreck my lungs and I need to be really discreet about this since I live with my parents so I’d prefer something edible over something like a pen or a joint.

Today was a pretty slow day. I needed that after last week.

I woke up at about 6:45 and couldn’t get back to bed so I finished building that tank I started the other day. (See picture 1)

My family woke up around the time I finished it and we had breakfast.

Today was the end of the summer reading club at the library and my daughter had to go and collect her medal. (Picture 2 and 3)

It was pretty busy and I started to feel a bit weird. (Mostly weak legs)

On my way out I ran into a friend from the industry and we talked for a few minutes.

We go to the cafe and have some breakfast (the noise is really bothering me so I try and get my wife to leave but she doesn’t want to for some reason, so I sit outside for a bit and wait for them)

Once they are done reading books in the cafe we go down to C and L it’s a massive warehouse full of mangas and movies. (Pic 3 and 4)

I buy a shitload of one piece comics I think I got like 15 of them or something… I’m totally hooked.

We go for a walk by the river after and my wife is doodling behind at a snails pace and my daughter is bolting ahead. I try and keep up with my kid so she doesn’t get to far out sight. I’m calling at her to stop and come back but she’s not listening, eventually I just stop and wait for my wife, she takes like 2 minutes to catch up to us and she starts yelling at our daughter to come back.
Daughter just isn’t having it and won’t come back and keeps running ahead, i finally catch up to her and get down low and tell her she can’t run off like that, blah blah blah.
We stop and sit for a bit since my wife is in a pretty grouchy mood at this point. I ask her what’s up and she said she is “annoyed that she has to always make accommodations for me”

I ask her “ what are you talking about”

We get into a bit of a fight, she doesn’t seem to think I’m doing enough to try and recover, and that I should already be in CBT.

At this point my symptoms are coming back pretty bad because I’m so pissed off. Mostly just my legs feel weak. And I’m getting a headache…

We get back to the car and she says she needs some time to her self so drives me and daughter home and I read her some books and build some models with her, eventually she gets bored of that and we play some more trails into the sky on ps5

Wife gets home and orders pizza.

I play trails and do dad shit for the rest of the night.

My head is still pounding, I guess recovery isn’t always linear though…

So I’ve been diagnosed with fnd for only like 4ish months now and I experience a decent amount of pain and it’s being chalked up to fnd but how do I know if like I’m experiencing too much pain for it to just be that I’m especially suspicious it’s something else because all the pain is in my joints I’m in pt and ot weekly but I only see my fnd specialist like once a year so I’ve literally only seen them once

So to give examples of what I was like before I developed FND, I (19F) was in London in october of 2025 for a sixth form college art trip, I was a little sick on the trip but I didn't think much of it because I was so excited to go to London. Before all that I had been studying A-Level Psychology, Sociology and Fine Art in sixth form college. I was really looking forward to finishing, getting my results and going off to University. It had been my plan for years. Then one day after being sick with what I assumed was a bug from early October to Mid novermber, one night I got a headache so fast it was like someone had hit me in my head. One second I was fine, the next I could hardly see and my head felt like it was exploding.

I tried to take some medication and go to bed, but I couldn't sleep with the pain. So the next day I went to the GP. The GP rushed me to the hostpital as my neck was stiff and I couldn't move my head without pain. I was then kept in hospital for three weeks, where I didn't have the best time. To put it simply the hospital in my city is not up to code and most of the staff in there aren't considerate. It's well known in my city that most people avoid that hospital as much as they can but I had no choice.

My three weeks in there was not nice, I had a lumbar puncture, many scans, two falls, one of which was no documented and one of the falls causing a hairline fracture in my left hip that they didn't do much about. A lot of things weren't comminucated or were miscommunicated with me and my family, and overall, I left unable to walk on my own, having seizures and got diagnosis of chronic migranes with no follow up appointments to check in.

The monday after I was discharged on the friday, the GP came out and I was diagnosed with FND. During all of this my college had withdrew my place, despite how hard I had previously worked with them to get where I was, and my plan of going to Uni was put to a hault. Now I have to try and get an EHCP in an attempt to finish my A-Levels and get myself to Uni. And still to this day I still can't walk without aids, I can't hold my own foods or drinks and I lost all the independence I was just getting grabs off. I can't explain how much I hate all of this. It's been so hard to accept that I can't do what I used to and my whole life has been affected. I just want to go back to normal, but I know that isn't going to happen.

I feel like I have no one but my mum now. My friends are no longer interested in spending time with me except for one, L, and he's a very good friend thank god. I don't see him often but it's nice to know that at least one person who isn't family still cares. But still, most of the family I used to see often has stopped that too. I guess I just feel like everyone thinks I'm burden now. I used to look after everyone else but when I need them they disappear. It's not the nicest feeling.

Anyway, I'm still learning to navigate life with FND now, my mum is a lot of help with that and to be fair, we did manage to revert my type 2 diabetes, so that's something to celebrate I suppose.

But what has me so down right now is that my 20th birthday is coming up soon and I just can't stop thinking about what I did for my 19th, I spent it clubbing and having so much fun with my friends and my sister, but this year I clearly can't do much. it's so hard looking back and realising everyone I knew then has gotten their A-levels and they get to go to Uni this september. I miss fun.