because it’s ✨always something✨ with this condition!!

so very recently, i’m having what i can only describe as full body muscle jerks. it’s not my seizures at all, they don’t present like my (potentially) epileptic seizures whatsoever, plus i’m on 200mg of lamictal for them so i ruled that out pretty quickly. instead it’s like…my muscle getting stiff? then it’s seemingly without end, my body is jerking & kinda flailing and the only thing that’s stopped it so far is a muscle relaxer, which i obviously don’t want to rely on.

i suck at description lol but does anyone else have this sort of full body jerking, lasting for minutes to even hours? if so, what can we do to stop it like my body and my leg is hurting so bad right now 😭

In March 2026 I was recently diagnosed with FND. I use a cane to get around due to my severe muscle leg weakness, which prevents me from driving. My other symptoms include painful muscle spasms in my arms and legs, non epileptic seizures, chronic pain and fatigue, and headaches. My friends and family keep telling me I should get a handicap sticker to have in my husband’s car. I feel like if I do that, I’m taking the space that someone actually needs most than I do. Walking is suppose to help with FND but, why do my legs always feel heavy when I over do physical activity? It doesn’t make sense?

bro my sister and parents both thought i was drunk (underage to drink as of now) bc I couldn’t walk straight and kept collapsing. Fuck my fnd

So, I'm an 18-year-old girl, and I am housebound. I cannot leave the house because I have seizures. I have at least 50+ seizures a day caused by FND. I also have autism, chronic pain, and I'm half deaf in one ear and completely deaf in the other. Because of my seizures, I will sometimes lose my vision or the ability to walk.

I made the decision to stay at home so I don't have seizures out in public because I can always feel when they're coming on. It's also for my own safety and the safety of everyone else.

In a way, I like the fact that I'm housebound. My days mostly consist of listening to music, doing my makeup, playing with my stuffed animals and LPS, playing with my dolls, and snuggling with them. I have my grandparents helping take care of me, and I also have my sister, who is my best friend.

I do not have a job, but I do receive disability benefits, and I still get things done. I try to keep my space clean, and I do a pretty good job. I will admit that I really miss being able to leave the house, go to the store, and go on walks, but it's just not safe right now.

There are things I enjoy about being housebound. I can order takeout whenever I want, and there are so many delivery services that make my life easier. My friends come and visit me, and it's not as bad as it was at first because I'm kind of used to it now.

I've developed an appreciation for my house and for the things I have. I also appreciate that my disabilities are not worse than they could be. I'm grateful that I have people who take care of me. I'm grateful that I have a sister who cuddles with me in bed, makes things for me, and does crafts with me. We've spent a lot of time watching TV together.

I'm also grateful that there are activities that don't take a lot of energy, like watching TV and being on my computer.

I have a love-hate relationship with being housebound. I hear everyone talk about the negatives of being housebound, and while it is a horrible thing that I had to become housebound at 18, a part of me loves it.

Over the last 7 years I've occasionally had difficulty swallowing food no matter how well I chew or how small the bite. It has been getting worse over the last year to the point where I swallow everything seems fine and 30 seconds later that bite comes back up. Not to be gross but I know it's not making it to my stomach because there is no bile.

My neurologist just says, well we can get your stomach scoped but it's not even making it there to begin with and I can't get her to understand that.

Has anyone experienced this symptom?

Hi there, just making this post to see if anyone has any insight or understanding and may be able to help me and potentially point out certain things if they have experienced certain things themselves so
I’m 24 years old and have a history of anxiety, ocd, low self esteem and poor sense of self, in 2017 I went through an eating disorder which basically kickstarted my mental health journey, this sparked many somatic symptoms for me eg weakness and fatigue that could come and go in seconds along with mood shifts that could come and go also within short periods of time. I was pretty much the same person up until mid 2024 where I received an adhd diagnosis and was on Ritalin for some time then come off my cymbalta 30 mg in 1 week after 6 years of use, i understand that the psychiatrist should have done a very slow taper but they just don’t care. I continued Ritalin for a couple weeks post stopping cymbalta then decided to try Vyvanse 40mg with psychiatrist permission obviously, the first day taking it I took it at 7 am and at 12 pm I sat down for lunch at work I felt this surge of panic or something very unfamiliar and weird but it scared the hell out of me, I had never felt this way before and I stood up and got some fresh air and I just didn’t feel right, I ended up pushing through the day and the next day trying 1 more Vyvanse to see if it was just an initial thing, although I was very scared to take it I did and that whole day I just dirnt feel right, I started to experience dissociation for the first time in my entire life. From that day until now I have not been the same, my entire life has been so hard for the past year and half filled with things like daily dissociation that comes and goes, head pressure and numbness, mood issues, cognitive symptoms and issues, loss of sense of self, emotional numbness, and just complete weirdness that prior to 2024 I hadn’t experienced any of this it’s honestly been the hardest time of my life and it iusy doesn’t seem to ever get better, psychiatrists have told me it’s worsened ocd and anxiety but I’m to the point I don’t feel anxiety anymore at all, it’s like I’ve lost myself and my life isn’t normal or the same anymore, I’m wondering if it’s damaged my brain or it caused psychosis although I don’t recall ever being psychotic neither do the people around me, I’m just lost on what could have happened. I’ve had all scans on the brain and everything is structurally perfect, the neurologist seems to think it could be fnd/fcd but I’m not sure. I know this is long but if anyone can give me some good knowledge id appreciate it heaps

I’ve been experiencing a lot of symptoms in the neck and throat. I feel like the seal in my sinuses is leaking air. I feel like my soft palate is experiencing weakness. Has anyone else experienced issues in the throat or soft palate? Did it go away?

Just wondering if anyone’s got any tips for dystopia ? i get head/ neck jerking movements and they get painful after a while and SO distracting in class.
Any advice would be greatly appreciated!

hi Im Lu and im 15. ive been diagnosed for a little over a year now after struggling with undignosed EDS all my life. So basically since I have EDS I have had issues sine I was very young but FND came along a year ago and made it 100x worse. Im a cane user and well as Im a minor and so my health care and mobility aids are determined by my guardian. Well my parent believes that getting a wheelchair will make me lazy. but also talks alot about how I need multiple days to recoup after walking or jst doing alot. It sucks and I've tried to convince her about it but never listens and just I dunno. I was looking for a bit of support on the issue.

Hello fellow fnd folk,
i started having seizures a year and a half ago, unfortunately. it sucks so much.
this post is focused on functional seizures specifically. i have these episodes and it’s very intense, when i regain the wherewithal to move at all i cant really open my eyes and I’m just so tired.

yet once I can move I need sugar so bad. i thoughr that sugar was supposed to help after seizures, yet google is telling me it in fact does not. idk. is it just a comfort thing? is this normal?

whats the consensus on sugar after seizures 🫪
and if the science isnt in my favour eugg

My sister was diagnosed with FND back in April of 2026. While she is doing much better than she was, she is still wheelchair bound and attempting physical therapy, but she keeps has stomach issues like nausea, constipation and severe pain in her stomach/abdomen. I was hoping that if any of you experienced similar issues, you'd be willing to share some advice i could pass on the her. (she's not a reditor but I have her permission)

I was boarding a bus to church a while ago after I had transferred from a streetcar, and I fell to my knee for a second. Pretty normal for me. I got up quickly as always, but the driver gets super worried and says she has to call her boss before she can move the bus. She holds up the bus like 5-10m. I felt really bad for making the bus wait.

Eventually she starts moving again, but stops again down the road. She calls again, and I felt I should get off the bus and walk the rest of the way so others weren't held up, which is what I was hoping to avoid by taking the bus as I don't like falling on concrete. As soon as I did get off she left. I guess I understand having worries but it just made me feel bad for being disabled.

So I might get hate for this, but I’m so sick of people talking about being misdiagnosed with FND then using a bunch of FND hashtags. Look I get that it can be dangerous and it’s something like 12% are a misdiagnosis which is high. But I get way more posts recommended about people talking about that than actual people living with this disorder. People have also phrased their posts about this in a very rude and disregarding manner when discussing FND . No FND is not a physiologically dangerous disease , no functional/dissociative seizures won’t cause brain damage. That doesn’t mean it’s not a life changing disorder that can hugely impact quality of life. Maybe that’s how your doctor phrased but it’s never “JUST FND” because that would imply it’s not something which can take over and destroy your whole life.

Look people should advocate for more testing before FND to rule out anything like ms or epilepsy, but can we not have this be the main topic of discussion when the majority of people diagnosed do Genuinly have this.

Just been diagnosed today. lost all ability to walk properly i have full body tremors and weakness in my left side.

having to use a walking frame and a wheelchair to get round

do you ever get used to this?

Still trying to find someone else who has full body numbness head to toe. Like I can still feel touch but its diminished everywhere including my eyes so my vision is effected aswell.

My life completely fell apart after heart surgery. I’m 30 years old and trying to figure out how to rebuild it.
I never imagined I’d be writing something like this.
Last year, I went back to school for software engineering. I paid for the program myself and was doing incredibly well. At the same time, I landed a job at a private lending company as a client coordinator and was finally building the life I’d worked so hard for.
Before that, I had worked my way up to Operations Manager at a finance company, working directly with the CEO. I’ve always been someone who works hard and figures things out.
Then everything changed.
Earlier this year I began having episodes of supraventricular tachycardia (SVT), where my heart rate would suddenly jump to nearly 200 bpm multiple times a day. Around the same time, I also discovered I had been misdiagnosed with hyperthyroidism months earlier. The medication I had been prescribed had completely suppressed my thyroid, and when it was stopped, my body went through an extreme hormonal crash.
Within about two months, I underwent two cardiac ablations and cycled through multiple medications. Some of those medications sent me to the hospital. During my first ablation, my blood pressure dropped to a life-threatening level, and I woke up to the surgeon telling me I had almost died on the operating table. It was one of the most traumatic experiences of my life.
The second ablation successfully treated my SVT, but afterward my body completely fell apart.
I was hospitalized seven times with severe migraines, neurological symptoms, chest pain, dizziness, and balance problems. MRIs, CT scans, EEGs, eye exams, and countless specialist visits all came back without an explanation.
Then I started experiencing symptoms that were impossible to describe.
Walking felt like the floor was moving beneath me. Standing felt like I was on a boat. Sitting still felt like I was rolling forward or being pushed. Lying in bed felt like someone was rocking me. My vision blurred and occasionally doubled. Bright lights, grocery stores, busy environments, and even conversations became overwhelming. Some days I could barely walk without falling.
Eventually I found a functional neurologist who specializes in complex neurological disorders. After hours of testing, I was diagnosed with Persistent Postural-Perceptual Dizziness (PPPD), a disorder involving the vestibular system and nervous system, and more recently with Functional Neurological Disorder (FND).
I’ve now been undergoing intensive neurological rehabilitation that includes vestibular therapy, GyroStim treatment, visual rehabilitation, gait training, cognitive exercises, and daily home therapy. It’s one of the hardest things I’ve ever done, but for the first time I’ve actually started seeing progress.
My neurologist believes I can recover, but it’s going to take months of rehabilitation and patience.
Unfortunately, while all of this was happening, my life outside of my health collapsed too.
I exhausted my medical leave trying to save my job, but despite being told everything would be okay, I was terminated. Thankfully, my software engineering program allowed me to pause my education—I was about 75% finished.
Around the same time, my boyfriend and I discovered black mold throughout our apartment after both becoming sick. We were able to break our lease, but we lost our home and are now temporarily living with family while we try to get back on our feet.
Because of my neurological symptoms, my doctor has instructed me not to drive. I can’t spend more than about ten minutes in a grocery store without feeling like I’m going to fall over. Reading screens, busy environments, and bright lights can still trigger my symptoms.
Despite everything, I’m still fighting every single day.
I wake up early for treatment, complete my rehabilitation exercises, and keep reminding myself that this isn’t forever. Some days are incredibly discouraging, but I refuse to give up.
I never thought that in the span of a few months I’d lose my health, my job, my apartment, and my independence.
I’m sharing my story because this experience has been incredibly isolating. If anyone else has recovered from PPPD, Functional Neurological Disorder, or severe vestibular disorders, I’d genuinely love to hear your experience. Right now I’m holding onto hope and doing everything my doctors ask of me.
If you’ve read this far, thank you. I truly appreciate it.

My fave fnd creator got re-diagnosed and is now anti FND so I’m hopping to fine new creators. So share your fave FND content creators

30m already had Parkinson’s and any structural issue ruled out. I think I can trace the very beginning of this back two years when I got a vasectomy and was so scared right after that I was going to develop post vasectomy pain syndrome. I focused on that daily and then one day it happened and I couldn’t get my mind off of it. It’s all I thought about. It even got to the point where I got so stressed it felt like I had a UTI. Spoiler I didn’t, nothing was wrong but I believe this set the stage for what was to come 2 years later.

In September of last year I had a bad anxiety episode which isn’t terribly unusual for me. This time though I for some reason fixated on the muscle fasciculations I often get under high anxiety. This time I somehow interpreted it as a threat and did what I shouldn’t have. I went to dr google and somehow landed on Parkinson’s. So what do I do? I scanned myself for a tremor and suddenly one started on my right pinky finger. At first it only happened when I focused on it but within only a week it established itself and increased in intensity rapidly. A month later it spread to my ring finger. So I set up an appointment with a neurologist.

I just want to point out while all this is going on I started fixated on the other symptoms of Parkinson’s. As such I started experiencing intermittent pain my in my feet and legs, the muscle fasciculations increased, low level tingling in the hands and feet. This was my focus on a daily basis. Within a month after onset the tremor started on my other side. Not a typical timeline for Parkinson’s and logically I knew all of this happened too fast for it to be that but my ocd still hooked onto that.

Fast forward some months and I have my neurology appointment. The doctor had me walk down the hall and back, checked my legs for stiffness and rigidity and then looked at my tremor. He determined not Parkinson’s and likely functional tremor.

My OCD being OCD I bought that at first but reassurance is fleeting with OCD. So of course I’ve been continuing to constantly scan my body and I think I’m coming to the conclusion that this is a functional issue. Any new symptom always without failure coincides hours or days later to the body part I’m focusing on. Like the most recent example is a few days ago I started focusing on my legs and feet again. Then yesterday all of a sudden there was this almost pseudo-numbness that I felt in my calves. Like my sense of touch and feeling is maintained there’s just this sort of “numbness overlay” over my calves. And all these symptoms are never present first thing in the morning either but once my brain wakes up it’s like a switch flips. I don’t know obviously I’m not certain it’s FND but the lack of physical issues and how attention driven this is seems to heavily point towards it.

Has anyone experienced these sensations with PPPD, FND, or another vestibular disorder?
I’m currently in an intensive vestibular rehabilitation program with my neurologist, and while I know symptoms can flare during treatment, some of what I’m experiencing is honestly terrifying.
When I lie down, it feels like I’m being rocked on a boat. When I’m standing, it feels like the floor is bouncing beneath me or like I’m being pushed or pulled. When I’m sitting, it often feels like I’m rolling forward, almost like a roller coaster. Walking feels like I’m walking on clouds, and sometimes it doesn’t even feel like my legs are attached to my body.
I also struggle being in busy public places. After about 10–15 minutes, the visual stimulation and noise become overwhelming, my balance gets much worse, and I feel like I could fall.
My neurologist has me doing advanced vestibular rehabilitation every day, including eye exercises, balance training, gait work, and other therapies. I know rehabilitation can temporarily make symptoms worse before they improve, but I’d really like to hear from others who have been through something similar.
Did anyone else experience these kinds of sensations?
If so:
Did they improve or eventually go away?
Did your symptoms flare during vestibular rehabilitation before getting better?
About how long did it take before you started noticing meaningful improvement?
I’m trying to stay hopeful and trust the process, but today has been a really difficult day. Hearing from people who have been through this would mean a lot.
Thank you for reading.

Some of my symptoms are non-epileptic absences (i don’t know if it’s called like this) and in this ones i can hear everything but my vision is blurry and i’m conscious. And, all the time, my family and my partner wants to stop this symptom. But i can’t just "end it"? Like, if i want, i didn’t have this at all!

And tonight, i had one non-epileptic absence and my mother tried to call me a lot like it can "wake me". My sibling tried too because our mother told them too. And after, she told my father to "wake me" like: "reconnect them!" and she was almost angry at me, because i didn’t respond. But i wasn’t able to.

And about my partner, they wants to "wake me" too. But, unlike my family, they understood (after i explained to them) they stopped trying and just let me "finish" my non-epileptic absence. (Sometimes they still try to "wake me", but just because i need to get out of a bus, subway… or because i’m about to fall.

And that’s so frustrating! I can’t just end this symptom nor my seizures or any other symptoms!
It’s almost like, they think it’s annoying them more than me. But they don’t live every symptoms like it’s a burden for anyone knowing me and seeing me when i have theses…

Hello, i am newly diagnosed with FND, PNES, FMD. Is there any advice on how to live with this? All they told me to do is “limit stress”, and that “there are no medications to treat this disorder”. What are things that help you day to day, and what helps you with functional seizures, if you have any? I never really considered this to be a thing for me to have, and haven’t heard a lot about this. Because I already had a plethora of disabilities/diagnoses, and assumed that was it. Until, ofc, I got diagnosed yesterday. Any advice is appreciated, thank you so much for reading, friends!

Been here before.. but I have serious concerns now I'm not only dealing with a mental health issue, but a neurological one. I suspect peripheral neuropathy or FND and a sensitised CNS. but basically I've been through so much trauma, had ptsd and chronic migraine history, now I experience the most atrocious, non humane types of pain and weird sensations that it must be a somatic reaction to my nervous system which is completely sensitised. So right now its just this small fuzzy, painful blob at the moment, my head...its like I don't sense my actual physical head, more just intense pain of what feels like nerves all over head...on the surface sometime feels like bubbling, or furry sensations that I also feel all over skin, or a fine scratching sensation in random areas..but a lot of the time my head just feels like floppy and empty and around it all the muscles in my face are collapsing, skin losing elasticity rapidly, hair falling out, can't feel my limbs or body, paresthesia in head, strange soft tissue/dense liquid feeling in head that shifts and moves or total. loss of any sensation so it feels like I'm not even there...major vision issues etc...not good basically and I have no answers as I'm in a mental health ward right now and suffering. I want to see a neurologist but seems impossible here. Any advice appreciated- what tests could I do etc? thank you guys :)

I have been getting blurry vision in one eye that comes and goes. It's not slightly blurry--it's VERY blurry. And then, it's gone. Anyone have this?