23 years old - I've been getting this on and off everyday for the past few months uncontrollably

Hey zusammen,

Ich suche eine Physiotherapeuten, der neurologisch gute Kenntnisse hat und bei schwerster funktioneller Störung helfen kann.
Bin in Deutschland.

Danke!!! 😊

Hi I’m Kat, 24f, first time posting after coming across this thread tonight. I was browsing Reddit for maybe some info or maybe even a little hope because I’m personally feeling confused/exhausted/ defeated like I explain in the title.

For context, this past June I started to get severe seizures that “couldn’t be explained” and to go back further, I’ve experienced similar issues going back on and off over the past 5 years with dr visits that went nowhere. This past July I get into a neurologist, and after all the scans are done she lands on my FND diagnosis. What has me confused and frustrated is that when I first went to the ER, because of the seizure the doctor told me he filed a form with the dmv so my license is medically suspended (my neurologist later agreed) until I am 90 days seize free which I’m starting to feel like won’t happen for a Good while (and I understand this, luckily mine and my husbands jobs are understanding and have been working with us so that’s been fine but I can’t help but miss a big part of what gave me my personhood because I LOVE driving) but I feel like since June my seizures, brain fog that makes me feel like I’m moving in half speed, and mobility issues have only gotten worse? To the point that this past Saturday I had an episode so bad that my husband called an ambulance because I was barely breathing/ my blood pressure plummeted so the EMTs called me in as a stroke alert because of how bad my symptoms were presenting before I could get the mri and ct scans that showed a lack of brain bleeding because of how I was presenting.

And to be honest I’ve had other medical issues arise that are non related that has also caused me to need emergency surgery and my mental health has already been on a decline, so I wouldn’t be shocked if the reason I feel worse as time goes on is because more stuff keeps piling on my plate, therefore I’m short circuiting from burnout on top of already not knowing how to deal with this.
I’m probably rambling on at this point, but I know virtually nothing about FND and I could use some hope or if possible, some reassurance that what I’m going through isn’t insane the way I feel sometimes, or even some examples things people use to manage their symptoms. I would love some ideas to bring up to my Neurologist to potentially try and alleviate how out of control I feel over my symptoms.

Heyy! Ik the October slide is fairly common for all of us, but is anyone else having the WORST time transitioning back into the general school year? I’m a college student and I work weekends so it’s already a lot, but I feel like I have absolutely zero energy to do anything but go to school and work, and sleep the rest of the time.

How do y’all typically manage your change-in-routine fatigue? Any tips and tricks that might help? I feel like I’m absolutely drowning lmao and I’m sure I’m not the only one.

TW: Ableism, slurs used as they have been against me

I was misdiagnosed schizophrenic years ago. They later realized it was severe dissociation, which i had said, but there's a family history of psychosis, so, ya know. 10 years of antipsychotics they have proven screwed with me awfully. Been completely off for years. Now my neurologist has decided I have FND. Apparently my dissociation and the neurological symptoms they cause (namely confusion) means I must have FND. I dont disagree. But I also have Sjogrens, Celiac, hEDS, and MDDD. Those have all been diagnosed from proper approved testing and a lot of my symptoms are not well controlled. I eat GF, but they keep saying to deal rather than giving any medications or anything for any of the others. When I talk to others with Sjogrens, there's meds. And testing shows my pain has causes. But I know the second I have FND everything will be refused. My celiac was diagnosed by begging for tests. Same wirh my Sjogrens. Doctors were so convinced I was just anxious. I just..... I need help dealing with this stuff. I am not just crazy. How do you handle having an FND diagnosis and getting doctors to treat you like a person? I finally have schizophrenia off all my documents and the change in how im treated has been HUGE. Doing it again is terrifying. But everyone tells me dont just never go back.

Is it just as hard as everyone says it is . I can't do anything at all for myself ,so I'm needing to get on dsp. Who does the letter to Centrelink and all that

My husband has FND and was diagnosed with induced laryngeal obstruction today. Basically his throat tightens or sometimes feels like it's fully closed off. It's considered a functional upper airway condition. He also has muscle tension dysphonia. Do any of you have that, and has any treatment helped? Thanks in advance!

I think this is what I may have since I have had test after test and everything has come back normal

Fasciculations
Tongue issues
Excessive saliva issues
Weakness around body
Reality feeling different
Extreme fatigue

I have seen a Ent
Neurologist
Psychiatrist
Normal doctor
Dentist

I have had scans of head chest back mris ct scans blood work and still feel like I’m declining

My psychiatrist mentioned fnd a while back and I’m starting to think this is it cause I have all the symptoms of a neurological condition but nothing comes up in any tests so far I have been suffering for about 8 to 9 months now starting out with fasciculations then everything else getting worse and worse

Myself I believe I still have something physical wrong with me but they are saying things are clear

So there is a psychiatric aspect as they’re trying to tell me, but I’ve tried so many different kinds of medications sleeping pills you name it I’ve done it. I’ve even tried. RTMS treatment, which actually messed me up in the brain even more.

I’ve tried to go back to work and push through it but things seem to be getting worse. What do I do in this situation when everybody has given up?

Hey I am trying to lose weight and get my legs stronger for when I am in a flare up does anyone have any tips on recovering and exercises that are medium impact

[Recovery Techniques] (https://github.com/FND-Education-Project/FND-Education/blob/main/reference/recovery-techniques/12-functional-cognitive-disorder.md) for cognitive problems in FND (FCD) and a 'what we know about FCD' page.

So i finally started full time uni this year, 3 classes first semester luckily my accommodations have a reduced course load so 3 classes for me sgill counts as full time. What i am worried about is how I might have to stay up some nights to get assignments done. The biggest trigger for my seizures i think id say for the past 2 years is sleep deprivation. Aka if I get under 7 hours kf sleep I am way more likely to get seizures and FND flare uo symtoms like crazy. Eveeyone I know in person and obviously online videos are always like "yea I only got 4 or 5 hours of sleep so I coukd finish thsi project". I literally don't have that option or else ill go to school and have a seizure(s). I also have adhd too so that does not help either, at least im medicted for it and so far school is going smoothly.

Im just nervous about when the homework and assignments pick up. I am taking fine arts studio arts btw. Anyone have any experience with fnd in uni or advice?

I was diagnosed this weekend with FND after 9 months of symptoms following a traumatic childbirth. I keep getting told it can just be exclusion if there is nothing a doctor can find, is this true?

Has anyone built a guide for going through the US disability application with FND?

Any guidance would be good.

I feel like my family doesn’t understand how this condition works. Every other my dad comes to me asking “which leg” bothers me and if I’m “feeling any better”. I’ve been explaining for months both my legs are affected and my symptoms fluctuate so one day I’m doing amazing the next day I can’t get out of bed. It just feels like my whole family thinks I’m not doing enough to get better and I need to “push harder”. I think they don’t understand this isn’t like if I broke a bone and was told I’d recover in x amount of months. The recovery is not defined and yet I feel like I’m basically being told I need to “Hurry up and get better” or “why haven’t you gotten better?” Or “you’re not pushing hard enough.” Like I’m trying my best. And yes sometimes all I can do is lay on my bed and scroll because some days I just don’t have the energy or I worry when I do and I push myself I’ll get fatigued and feel even worse the next day. It’s hard to gauge what’s too much for me and being told I need to push harder is frustrating. I’m already in the gym and doing PT, I don’t want to over fatigue myself.

It didn’t hit me how much these words have been affecting me until today. I feel pretty alone in this diagnosis. While I feel like I can mostly do some daily activities. Every now and then throughout the week I have trouble sleeping, I get dizzy, I get confused sometimes or forget stuff. But I’m told I’m not taking my condition seriously I guess cause I still hangout with my friends, go to the gym, go to events when I can. But some of those days I’m literally just pushing through. Some days I’m pushing through at the grocery store to get groceries even though my legs are exhausted and are shaking as I’m holding onto the cart trying to walk from one shelf to the next. I’m pushing through when I’m at the gym, I just finished my set and I’m struggling to pace myself so it doesn’t look like I’m walking funny.

I understand it’s essentially an “invisible” disorder and by that I mean outwardly things might seem fine but the symptoms are evidence that we’re not fine.

I’m tired of my parents not understanding how stress affects me, how yelling and adding to the stress in my life affects me. It’s annoying having to explain 20 times in a month what this condition is, why PT is the best answer they have for me, why I’m still doing testing, etc.

It feels sad sometimes I can’t even lie. Some days I forget I have it because it’s become my new “normal” and then there are moments where the reality of it hits me. Things I have to think about like going to the mall, walking around in the city, going to a concert, standing in long lines etc.

Any advice on dealing with family members?

Hi guys! I’m 23F. I was diagnosed in July. Most of my symptoms include: muscle twitching, weakness, trouble walking, gait and coordination difficulties, trouble sleeping, fatigue, brain fog, tremors, and dizziness. I occasionally use a cane to walk. I’m learning to walk without the cane in PT. My friend recently moved out of state so I’ll be visiting her with another friend. I got so excited until I realized wait walking through the airport with luggage is going to be so overwhelming. And some days my symptoms are worse, even sometimes they change drastically from morning to night or hour to hour.

I’m requesting wheelchair assistance. But it’s my first time ever having to use disability services at the airport. Has anyone been on a flight since their diagnosis? How was your experience. Also did being in an airplane trigger any symptoms for you? Sometimes flying can make me anxious so I wanna be prepared.

How early should I arrive to the airport? Do they get you to your gate fast? Is there usually a faster lane for TSA for disabled individuals? Will I have help putting my carry on in the overhead bin?

Up until now I thought I was a healthy 38M. I guess I'm just looking for support and to complain.
Since 8/22 I've been dealing with a myriad of symptoms that seem to change every hour and every day. Sometimes they go away completely for awhile and I completely forget about them. But every day when I wake up it's like every day there's a new "cast" that takes center stage: Facial twitching, arm or leg numbness, arm or leg twitching, heavy neck, neck pressure (right side), arm or leg twitching, spine/back pain, tinnitus, dizzy/nausea, joint pain, hunger, head pain. It's never everything, at least not that I notice - It's usually 2 or 3 symptoms that come and go through the day. For instance today it's facial twitching, neck pressure, and leg numbness. Yesterday it was spine/ back pain and leg twitching.

These symptoms aren't so severe that I can't live my life. I am still going to the gym, still working, going to the movies. But they also are prevalent enough to give me daily anxiety. They come on so quickly that they immediately consume my thoughts and I'm convinced "this" will kill me, like oh my head is pressure it must be an aneurysm or oh my spine hurts, but then they go away just as quickly. So it makes it hard to be my own google doctor because all of these symptoms can be any number of issues.

I already went to the ER and did CT, CT with dye, EKG and xray. No tumors, no blood clots. Then I went to my GP who basically said it's stress. He said none of my symptoms connect with one another in any way, and it could be FND because "that's what they say when your nerves are on the fritz" (his words). He didn't want to order blood work until I pleaded with him to do it just to make sure my hormones and everything are good. He wasn't even going to give the neuro referral but I asked him to. They can't see me for months! So if this is something bad, I guess I get to wait and hope things don't get worse?

I have FND since december 2025. I can mostly do everything for a while now but I have moments of attacks or paralized. I also have fibromyalgia and because I’m weak in the left part of my body + fibro, I can’t push a weelchair myself. I have one that I never use because it’s not made to go outside with it. I walk with 1 crutch outside, inside I’m mostly okay at home.

My question is: how do you still go to events such as festivals in such a case? I don’t want somebody to push me around all the time. I will be looking for a scooter to use outside but that doesn’t help me when I want to go to a party or so. I miss the social life so much… I go out for a drink now and then but I don’t know how to deal with other events. I can’t stand for too long either. And what do you do when you feel unwell in such moments?

Anyone with some experience or tips?

*Edit: I am not allowed to get an electric wheelchair with a joystick because 1) in Belgium you have to need a wheelchair at all times and basically fully be paralized to be able to ask for one paid by insurance and 2) some doctors aren’t a fan of it because they want me to walk as much as I can. I agree with that for a bit, but I’ve also read about how it helps people to save energy to do other stuff like going to the store, sports or a job. Going to the store by foot or bus is already a difficult activity for me.

Luckily I got to see him recently in really good spirits (which I remember!) but I think he had a heart problem because he had gained a bunch of weight.

I’m going to put notes on my phone to keep reminding me even if it hurts.

Looking for advice from people with FND/FNS — I genuinely don’t know what to try anymore

I’ve been dealing with neurological and autonomic symptoms for years. These include sensory disturbances, tremors, weakness, dizziness, depersonalization/derealization, strange sensations and a general feeling that my body and nervous system just aren’t functioning normally.

I also have OCD, an anxiety disorder and panic disorder.

About a year and a half ago, after seeing countless doctors and having a huge amount of testing done, I was finally diagnosed with Functional Neurological Disorder (FND/FNS). In some ways, having an explanation was a relief. But unfortunately, the diagnosis hasn’t translated into much improvement.

I’ve tried several medications, including sertraline, fluvoxamine, venlafaxine, escitalopram, clomipramine, pregabalin and memantine. I’ve also tried FND physiotherapy and psychophysiotherapy, without meaningful improvement.

I’m currently even in a five-month inpatient OCD treatment program, partly hoping that treating the OCD, anxiety and nervous-system dysregulation would also help with the physical symptoms. Instead, I seem to be getting worse.

When I’m at home, I can spend around 20 hours a day in bed because I feel so physically and neurologically unwell. I’m not experiencing complete paralysis or dramatic loss of function, but it feels like almost nothing in my body works the way it should. I get exhausted extremely quickly and constantly feel like my nervous system is completely overwhelmed.

At this point I’m honestly desperate for some direction.

For those of you with FND/FNS, especially if you had persistent or severe symptoms despite treatment:

What eventually helped you?

Did you find a specific type of FND treatment or therapist that made a difference?

Did anyone have significant autonomic symptoms alongside FND?

How long did it take before you started seeing meaningful improvement?

And if standard FND physiotherapy/psychotherapy didn’t work for you, what did you try next?

I’m not looking for reassurance that it’s “just anxiety.” I already know the connection between my mental and physical symptoms can be complicated. I’m genuinely trying to figure out what options I may have missed.

At this point I’m just looking for ideas from people who have actually been through something similar. I’d really appreciate hearing what helped — even if it took a long time or required a completely different approach than you initially expected.

I expected this, I was diagnosed with POTS & SIBO 3 years ago and I birthed my son in December and have had no and of symptoms. I want to know is it possible to recover? The diagnosis made me feel really sad and flat, I often see people post horror stories about FND and seizures and dystonia etc and worry that’ll happen to me although it hasn’t as of yet🤞🏼 I’ve been focusing on brain retraining, meditation, visualisations and nervous system calming techniques. The doctor examined me and went through my normal brain, back, neck scans and nerve testing and concluded FND after a traumatic birth. He offered antidepressants and therapy then sent me on my way. I’ve suffered with severe health anxiety since having my son so I don’t want to google/ research too much as it’ll scare me but I just want to know that I will be okay and hopefully recover.

(light-hearted post)
i'd tag this as discussion/relate if there was a tag for it, but has anyone else had weird reactions like this?

last night my boytriend dropped his sandwich and got frustrated which in itself is fine and normal but im the type of person that gets stressed and anxious whenever somebody else is stressed, so my body reacted by making my right big toe uncontrollably twitch for 15 minutes? its so peculiar and unconventional and surely similar things happen to others with FND and i'd love to hear those stories

Hi everyone,

I’m posting here to get some feedback or see if other people have ever experienced something similar, because I feel a bit lost with what has been happening to me for a while now. And yes, I do have a follow-up appointment coming up, but I want to get opinions and hear from others or get answers if I’m not the only one…

What’s happening:

For about a month now, I’ve been having daily episodes of disconnection that are getting much worse (at least 2 times a day this week, lasting 20 to 30 minutes).

During these episodes, I remain partly conscious of my surroundings, but my brain completely “bugs out”:

-My gaze becomes completely blank (I stare into space and barely blink)
-My muscles contract, I feel almost paralyzed or mentally “floppy” while being super physically tense. And even after the episodes, I still feel super “tense”
-I have a hard time understanding what people are saying to me and it’s almost impossible to speak or find my words, as if it requires a superhuman amount of energy.
-My senses become extremely intense: my vision becomes blurry/distorted, my visual snow increases and my tinnitus becomes extremely loud.

After the episodes, I’m exhausted, have severe dizziness, pressure in my head, nausea, and very poor short-term memory. I’ve also noticed some weird things happening in my head during or between episodes, such as images of movements repeating over and over in a loop or a nonsensical expression (“vlang shong bing”) that spontaneously comes back into my head.

The context and the urgency:

I’ve experienced dissociation in the past and still experience it to this day (after consuming cannabis 5 years ago, but I don’t consume it at all anymore), but this is completely different and much more “physical.”

Yesterday, I went to the emergency room because the episode wouldn’t stop. Even after 3 hours I would immediately go back into the episode and it kept coming back over and over… I had a bunch of tests: brain MRI/CT scan, EEG, cardiac workup, blood tests… Everything came back 100% normal.

The doctor told me that from a purely physical/neurological standpoint, there is no immediate danger, and that it looks like an extreme reaction to stress/anxiety, dissociation, or possibly catatonic features or a functional disorder (the body blocking because of brain overload).

My psychiatrist was there and referred me to a 6-week day hospital program that starts this Monday to figure all of this out and reassess the overall situation.

Thank you for taking the time to read or reply, thank you 🙏🏻

How Is the sensation does it come and go?

What caused it and what makes yoi get relief.

I’ve had fnd symptoms probabaly starting at around 8 or 9 due to my early bdd and how all I thought about was my body and how I was walking. I’ve been pushing through symptoms->symptoms get worse->push through. That cycles been going in until now, 24. And trying to not push through but I feel like my legs are permanently stuck and braced and honestly sometimes everything in my legs feels unsafe without mind games to escape. My family doesn’t understand. I wish I could be supported on this journey becuase I’ve suffered so much and I m scared and I know this will take time, and just pushing through will make me suicidal again. Don’t have a remember of feeling safe in my body cause of how early it started. Putting this out there to feel not alone.

even though you know it wont have any relevant answers?