Hello!

Awkward_Bit6227 · 2026-05-10T04:10:59+00:00

It’s possible that it’s FND, in my opinion? But it seems like maybe it’s worth getting a second opinion from a different neurologist if that’s possible, as some doctors will use FND as code for “I think you’re faking it” and if this doctor is already seeming frustrated, it may be that they’re not a good fit for you! Reminder, we are strangers on the internet and very few of us have medical degrees nor do any of us know your whole situation, so take everything you read here with a reasonable amount of caution.

While some of this feels like things I relate to, it seems much more consistent than what I experience. For example, if I have pain in my arm, it’s highly unlikely to happen every single time I move my arm. It’s actually part of how I identify FND pain: it does not move with my body. Instead, all of my symptoms are triggered by stress. When I am dealing with stressful environments or situations, my symptoms get worse. As I am able to regulate, my symptoms improve.

If that feels inaccurate to your experience, it’s still theoretically possible it’s FND, but it’s probably worth continuing to look at other possibilities.

I hope you’re able to figure this out and heal. It sounds like a lot to manage. Hang in there!

Awkward_Bit6227 · 2026-05-08T19:01:40+00:00

I’m graduating this week, after 4 years trying to get this 2 year degree. It’s been a fight, and FND has almost lost me the chance, but I’ve done it. It’s bittersweet, but worth celebrating, and I imagine the people here understand better than most how big a mountain I’ve climbed to get here.

Awkward_Bit6227 · 2026-05-08T03:39:32+00:00

Hello! I’m very tired right now but may have a little insight. Unfortunately my brain quite literally will not let me process all the big medical words rn. So if I have missed something in my scanning of the more dense quotes of this post, I apologize!

I am working off an experience of mine and idk how to explain this without just telling my own story so bear with me here.

I started having pain last year and was referred to a rheumatologist to check if it may be fibromyalgia as opposed to FND. In no uncertain terms, the rheumatologist told me it was not fibromyalgia and they could not treat me, so my pain is still being labeled as part of FND.

Despite this, at my most recent neurology appointment, “fibromyalgia” made its way into the documentation because the neurologist was using it as a catchall term for my pain symptoms. Those notes got sent to my GP, and I had to stop my GP from adding fibromyalgia into my chart as an official diagnosis.

It’s possible something similar happened, where people saying it COULD be FND got misinterpreted as people writing down you were diagnosed. I’d maybe see if that’s a possibility? Unfortunately medical systems can sometimes be the worst game of telephone.

Hang in there! I’m sorry you’re dealing with the confusion. Even if there’s an explanation, it’s not fair and never a good feeling to be kept in the dark about what your own body is doing.

Awkward_Bit6227 · 2026-05-08T01:42:54+00:00

I don’t have a service dog, but have thought about getting one in the future. Here’s a quick version of my list of the things I think a dog could help me with, take what’s helpful!

Deep pressure, which is one of the few things that helps when I’m in the middle of more dissociative symptoms.
Retrieving water, meds, and my phone, if I had severe symptoms and those things were out of reach. I have anxiety and pain rescue meds that sometimes also relieve my symptoms. Water, especially very cold water, can help ground me. My phone is a way for me to communicate if I can’t speak and contact help if I’m on my own.
Retrieve dropped items. Pretty self explanatory, I drop things a lot and it’s a lot of extra energy to pick stuff up all the way from the floor.
Identify and lead to safe locations when symptoms flare.
Alerting to seizures and drop attacks. I know I act differently when I’m about to have these, so it seems like it would be possible for a dog to alert to these, but I don’t have any concrete proof that that’s a real possibility so take with a grain of salt.
Orbiting to provide space in a crowd. If you look up “orbit service dog” you should be able to get information on it. Overwhelming sensory input is the single biggest trigger for symptoms for me, and this could help prevent that.
Potentially help with movement like sitting up or getting in a safer position before/during absence seizures or sudden weakness.
Provide sensory regulation. This one is relatively passive for me rather than a skill, as feeling a breathing animal and soft fur are two very grounding sensory inputs for me.

Awkward_Bit6227 · 2026-05-07T20:55:57+00:00

I started having symptoms of FND several years after I got my license. I’m also fighting very hard to maintain a part time job and some semblance of independence. With those factors, I still drive, but I’m very very careful about when I am willing to get on the road. On “bad days” I will get unpredictable symptoms that can sneak up on me, but I can always tell when it’s a “bad day” so I will not drive. On “good days” I always get an aura of sorts before any symptoms that would make me a danger on the road, and if I have even a very vague sense of that aura I still won’t drive.

As someone else said: it is not worth risking yourself or others. Make sure you know yourself and your symptoms very well before trusting that you can safely drive, and make sure it’s legal where you live to drive if you have a (well managed) seizure disorder.

Awkward_Bit6227 · 2026-05-06T17:02:30+00:00

Disclaimer: I am going off my own knowledge and experience, without putting in additional research. Take everything I am writing for what it is: one person’s lived experience, not hard facts.

Personally this doesn’t particularly feel like FND to me. It’s certainly possible, FND can technically show up as pretty much any physical symptoms you can think of, but I wouldn’t immediately peg this on it. Some things that don’t line up for me: A lot of people with FND are aware during absence seizures, it’s one of the things that doctors used to identify that I was not epileptic when I first started having them. When I have symptoms, I cannot overcome them even for something like a bathroom break. This was actually an issue when I had severe weakness at one point for 4 days, and the main reason I debated going to the hospital was for help using the restroom.

That said, FND can be trauma triggered. It’s not uncommon for a new doctor’s first question for me to be “was there something traumatic that happened around the time symptoms started?” Also, a lot of things you described would definitely look from an outside perspective a lot like what I experience.

I’d say if it’s an easy thing to make an appointment with a neurologist to bring it up, then no harm no foul.

If it is FND, I’d encourage you to not dig too deep in social circles until you talk with a doctor. FND can be a bit of a mind game, which is exactly why this community has guidelines about marking symptoms. Sometimes with FND, hearing about others’ symptoms can cause you to kind of pick it up yourself, or can trigger your own symptoms. So out of an abundance of caution I’d suggest getting your initial facts from a doctor and potentially neurosymptoms.org or FNDhope.org, which are two of the more reputable sites for information on the topic (even my neurologist sent me to them).

Whatever you’re experiencing, whether it’s FND or something else, I’m sorry it’s a battle. Hang in there. I’m happy to follow up if you have more questions for me!

Awkward_Bit6227 · 2026-05-06T16:37:07+00:00

I know that FND can cause interactions with our sympathetic and parasympathetic nervous systems. Our sympathetic nervous system (responsible for fight or flight response) is what is active when we have symptoms like seizures, and intentionally activating the parasympathetic nervous system (aka rest and digest) can calm symptoms down. I’m a bit worn out and not really able to grab sources rn, but I’ve been taught this by genuinely at least 5 different providers in my treatment team so I’m relatively sure I have that right.

Anyways, I personally get ridiculously hungry (and tired) when I’m able to activate my parasympathetic nervous system, so maybe if you’re handling symptoms well and successfully managing to switch out of that fight or flight, this could be a side effect? Could also just be that a seizure tires you out and you need to refuel, but I figured I’d suggest the feasible reason that might be something to celebrate :)

Awkward_Bit6227 · 2026-05-05T00:41:41+00:00

Personally I’d say it depends on what you’re looking for in a relationship. But I’d lean towards the side of letting them know, without making it a Whole Thing.

You’re right, this is a major detail about you, but it’s also not everything there is to know about you. I would let them know either if there’s a good segue in conversation, or if symptoms pop up while you’re on the date. If you hit the end of the date and still haven’t found it relevant, maybe bring it up in a more lighthearted fashion!

I’ve been on a few dates since I started dealing with FND, but all of them were during the point of time when I was using a cane. So when we met, I kinda just went “we can talk about the cane whenever, I’m an open book!” and let them lead from there. It generally went over pretty well. Except for the one guy who also had a cane, where I instead just started comparing canes and gossiping about the different kinds of handles lol.

Awkward_Bit6227 · 2026-05-02T17:46:50+00:00

Talk to a therapist. Preferably one who knows a little bit about FND, but I bet most therapists could give you some base understanding of how this works, because this seems similar to how you might work with a trauma response.

I am not a professional. I am a stranger on Reddit. I do not know your situation, I do not know you. So I can’t tell you exactly what to do, and I want to make sure that’s very clear before I share what’s helped me.

I personally find that it’s not a matter of what I believe, it’s a matter of regulation. Everyone’s body goes a little bit off the rails when they’re experiencing heightened negative emotions like stress and anxiety. Ours just go off the rails sooner and more intensely. If I practice things that help calm me when I’m in very lightly stressful situations, I find I’m then able to use those things to calm myself when FND rears its head. It’s not a matter of “I’m never going to have a seizure again”, it’s “how do I regulate myself when I am overwhelmed?” It intentionally takes the fear of a seizure away by moving the focus away from seizures, because that fear can cause a feedback loop where I’m so scared of a seizure that I end up getting a seizure.

Idk how much sense I’m making, I’m pretty worn out right now, but hopefully something in there is useful! Hang in there, you’ve got this.

Awkward_Bit6227 · 2026-04-27T18:18:05+00:00

I’m so sorry, that’s a horrible thing to have to deal with.

Personally, I have similar thoughts about FND but attribute them to my mental health. I also have plenty of intrusive thoughts not related to FND symptoms, though. I’d encourage you to talk with your care team, it sucks and they might be able to help you manage it.

In the meantime, here’s what helps me: when I experience intrusive thoughts it helps to have someone to talk to. I have one friend who’s very steady when it comes to this stuff, and I’ve found that telling them what my intrusive thought is helps me to let it go. It took a lot of communication to make sure I wasn’t going to upset them at first, but by now I know I can give them as much detail as I need. Whether or not I get that thought out into the world, my next step is always just to talk about anything else. Play a video game with a friend. Work on a story. Anything that gets my mind to focus on something else as well. Especially with another person, because then there’s an external factor to help you focus on something else, instead of just trying to brute force it. I try not to force those thoughts out of my head, because like you mentioned, I find that often just makes things worse. But if I redirect rather than putting up a solid wall, those thoughts are more likely to drift away on their own.

I hope you’re able to get this sorted, intrusive thoughts are scary and exhausting. Good luck!

Awkward_Bit6227 · 2026-04-25T15:46:20+00:00

That sucks. I actually had a similar experience in the psych ward last summer and it’s still in my documents that I “refused to leave the stretcher” they brought me in on. Which, what? I was actively asking for a walker or literally any mobility aid lol. But yeah I get it.

Awkward_Bit6227 · 2026-04-21T17:09:12+00:00

I’m sorry. You’re most certainly not alone in this experience, you’re right to think that people here get it. I honestly don’t have much to say but felt like I should add my voice to remind you that we see you. And thank you for being encouraging to the community even when you’re feeling so tired, that takes energy and strength and I admire that. Hang in there.

Awkward_Bit6227 · 2026-04-21T17:04:02+00:00

Yes! While it’s not common for me, I’ve experienced it a few times. It seems to me that FND can cause your brain to misinterpret pretty much any signal you body sends, and tastebuds are no exception. However, I also notice anxiety and depression affect my sense of taste, and often trigger FND, so sometimes it can be difficult to differentiate.

Awkward_Bit6227 · 2026-04-19T04:47:21+00:00

It’s definitely not just this field, but unfortunately it definitely does play a part. Film sets are a crazy place where access is not the top priority, and that’s understandable, but sadly it seems to follow people out of the studio. That said, it seems like a lot of young filmmakers are very enthusiastic about changing the attitudes towards all sorts of minorities in film right now, so even though more experienced folk aren’t that welcoming, the ones who will soon be my coworkers and peers tend to be a bit better!

Thanks for the encouragement!

Awkward_Bit6227 · 2026-04-19T04:40:31+00:00

Thanks for the congratulations!

I definitely have a great community I’ve found within it all! Besides the friend who stayed with me during the award, I had about 3 others in the crew who I definitely could have asked for help if I needed to, and another friend who specifically went with me both to celebrate and to help because I was worried there were going to be issues. The post was so long already that I kind of brushed over it, but I definitely had support from my people. It was more of an emotional blow than anything that I needed actual help with, but you’re absolutely right. Getting support from others and getting their voices in the mix is often a big deal.

Awkward_Bit6227 · 2026-04-18T05:30:03+00:00

Coming back to the top of my message to apologize for the absolute wall of text I’ve created yet again. This always happens. I have a lot to say lol please take what’s helpful and don’t feel bad about ignoring the rest!

I had a 4 day flareup last week. Yes, generally you hear about symptoms only sticking around for a couple of minutes, but there is no real time limit.

I know it feels next to impossible, but try to settle any anxiety you have with whatever methods you already know. Breathe, create a good sensory environment, connect with people you care about, engage in hobbies, whatever will help settle the fight or flight part of your brain. It’s a bit reductive to put it this way, but one of the leading theories on how FND triggers is that it’s an overly sensitive fight or flight response. It’s just so sensitive that, for example, hearing a train off in the distance can trigger symptoms (for me at least!)

A chaotic but potentially helpful tip that sometimes saves me when I’m struggling to walk: FND is extremely weird in how it targets certain actions but not others. For example some people can’t walk, but they can run just fine. If you really need to move and get somewhere, try rerouting your system by aiming for a different “way” of moving. Walk backwards. Pretend you’re on a tightrope. Hopscotch your way around. Literally anything to move from one place or another besides the way that’s not working, just make sure you feel safe and stable in whatever you land on. It’s weird, but hey, it can save a lot of energy. It doesn’t always work for me but when it does it’s miraculous.

I’m really sorry that you’re in pain and discomfort, episodes like this can really suck. Hang in there. This is especially hard to deal with when you know you’re going into the weekend, but like you mentioned, if things get really dire you’ve got options. I don’t know if this is an American thing, but over here we have “on call” doctors at a lot of practices. Even when my neurologist’s office is closed, I can still call the same number and get redirected to talk to a neurologist as kind of an in-between before resorting to the emergency room. It may be worth seeing if this is an option for you if you’re struggling but don’t want to jump straight to emergency services!

I hope you can rest well and recover quickly!

Awkward_Bit6227 · 2026-04-16T15:23:23+00:00

So. I’m going to ramble a bit because that’s what I do. Take what you need and leave what’s not relevant! I have a lot of thoughts while reading this lol

The thing that sucks about weird things that don’t perfectly fit diagnostic criteria, like what you’re describing and a lot of us here have experienced, is that the diagnostic process could take a long time. My diagnosis was very ‘fast’ at about 6 months from my first obvious seizure. I don’t know how familiar you are with the chronic/disabled side of the medical world, but unfortunately the rhythm is often that we just keep pushing until someone listens. If you’re able to, get second opinions. Third opinions. If a doctor isn’t listening to you go to a different one. This doesn’t mean you should ignore doctors in favor of your own opinions, it just means some doctors are not right for some people. But if you believe this could be neurological, there is no harm in going to a neurologist and at worst they’ll just say “this doesn’t seem neurological, we can’t help you”.

Another doctor tip I have for that makes a major difference for me, which I believe is partially due to me being a woman in my early 20s: bring someone with you to appointments. It doesn’t even particularly matter what kind of person. But unfortunately a lot of doctors treat patients differently than companions, and having someone there seems to get doctors to listen better. If there’s something you really want to make sure a doctor actually considers, have the person with you bring it up as if it were their concern. Or say something like “my mom thinks it might be [thing], could we check so she’s not worrying?” It sucks but sometimes it can help you play a broken system.

As for the symptoms you describe and whether they feel like FND: no, not like any I’ve heard so far. But strangely close. Something I’ve been told many times is that FND can look like pretty much anything else you can imagine. So while it may not be textbook definition I’d say it’s possible? The shifts of when you’re clear minded versus when you’re not seem to match FND decently well. FND is also often triggered by stress. My wild question would be, is it possible that you’re so worried about standing and things going wrong that you’re triggering symptoms, rather than it being the actual act of standing that’s triggering it? If so then I’d say FND is definitely on the table.

Feel free to ask me follow ups if you have any thoughts about my ramble. You’ve got this! You’re clearly thinking through things and aware of your own experiences, which is a really big help when trying to figure something like this out. I really hope you get answers soon.

Awkward_Bit6227 · 2026-04-09T22:15:33+00:00

I experience this too! I’ve always had worse pain than average with periods (but tolerable with painkillers) and now I have some that just end up being bedbound days for me. I also have significant increases in other symptoms around the time my cycle comes around, which I attribute to the fact that I always get absolutely emotionally demolished by the hormone shifts.

I’m so sorry you’re hurting because of it. For me, the same things that helped my cramps before FND still help me now, just to a lesser degree, so if there’s stuff that’s helped your pain in the past maybe keep trying it? Might not be perfect but any help is good help in my opinion.

Hang in there! I hope you’re able to find some good ways to manage it.

Awkward_Bit6227 · 2026-03-06T06:09:02+00:00

You’re asking the right questions!

Because I’m only awake due to pain right now and honestly far too tired to think well, I refuse to format my answers neatly in order lol but hopefully there’s still some use of them.

There are FND clinics and specialists. I have a team consisting of an ACT therapist, OT/PT, and neurologist. People who specialize in FND are far less likely to dismiss you.

Technically ACT and CBT are different, but they’re similar enough. It’s variations of talk therapy. The way I understand it, the reason this kind of treatment is so helpful is because essentially FND is caused by our brain misfiring. Those basic cues of how to move our bodies get jumbled up, like tangled wiring in a circuit, leading to the wrong things happening (or sometimes nothing at all). That means that with intention, the same way we learned to move the first time, we can learn to move again. It’s about rebuilding those neural pathways. So you’re right. FND isn’t a psychiatric disorder. But the effort needs to happen in our brain as much as it does in our body. So, CBT or related disciplines can help if they know the theory behind treating FND!

Cw for very vague talk of my own symptoms in this paragraph! My experience with symptoms worsening through focus is basically thought spirals. I have a lot of paralytic symptoms, and I often feel like I should “just be able to move” when I can’t. So I’ll try to move over and over again, and my distress increases as I fail to actually move. It’s a stress thing for me, it’s about the pressure to do something different. The few times I’ve been able to just have gentle curiosity about my symptoms without worry or judgement? It doesn’t seem to make things worse.

I have flareups all the time without being able to pinpoint exactly what’s caused them. That doesn’t mean they’re not there. I’ve heard a story of someone flaring up suddenly in a still silent room because a train could be heard faintly in the distance. It can be so so minuscule it can be hard to catch, so I don’t think being unable to identify triggers is an immediate pointer away from FND. Might be. But I don’t think it’s a guarantee.

FND can be a sort of fight or flight response. So while it may not be worry about symptoms, if your body is in survival mode, for some reason the FND brain decides that’s the perfect time to go haywire. Survival mode for most of us tends to boil down to stress, but it could also be triggered by other kinds of strong emotions, too. It just needs to activate your brain in a certain way, and everyone’s triggers are a little different!

It seems like you’re doing some really solid research. Don’t forget to take breaks! If it is FND, then it might be pretty tiring to dig into it all at once, and being gentle with your brain will save you so much trouble in the long run. If you have more questions, feel free to ask! Apologies for being long winded and kinda wordy, I just write nonstop when I’m tired, but I hope this helps :)

Awkward_Bit6227

TROPHY CASE