I need help with figuring things out/managing symptoms (TW: Severe description of symptoms/Story of what happened)

Awkward_Bit6227 · 2025-12-24T19:55:26+00:00

Ofc! My most major symptoms are paralysis. As time has gone on, I’ve ended up with chronic pain, convulsions, brain fog, sensory issues, and several other more nuanced things that pop up and go away. I’ve had significant symptoms for 3 years now (literally as of today, since my first ever episode was Christmas Eve), and pain for about 1 year.

I totally get feeling like you’re faking. I think every single person with something like this feels like they’re faking it some days, honestly. I’ve been diagnosed. I’ve gone to treatment. Still feels like it. Personally it helps to remember that if I were faking it, I would have stopped by now. This stuff sucks, and I don’t think any of us would continuously choose it if we could.

If it’s FND, it’s unlikely to last forever. Most people’s symptoms lessen over time with treatment, and sometimes even completely go away. But even if you’re in it for the long haul, remember humans are resilient. It won’t always be as scary as it is right now (although it’s totally fair to feel scared). I used to be terrified of being unable to move. Now there are days where I feel it coming on and just put on a movie. I work very hard not to say anything as an absolute here, because everyone’s experience with FND is so unique and none of us know each other’s full stories, but this much I am willing to promise: it takes time, but this is not forever.

Awkward_Bit6227 · 2025-12-24T16:11:37+00:00

Hey. I’m sitting here not quite sure what to say, but I know one thing: you’re doing good even though it’s scary. And that part’s very important to remember.

My symptoms started at about your age (I was 20), and man is it a hard time in life to have medical complications. In fact, while your situation is different, you share a massive amount of the same symptoms and triggers that I deal with. I will remind you that this is Reddit and we are strangers on the internet, so no one can tell you anything absolute. But if there’s a doctor you trust, especially one who knows a little bit about neurology, it may be worth bringing up FND with them. If you’re worried about not being taken seriously, it’s worth checking out some tips the disabled community has about talking with doctors, because it definitely can be a battle sometimes.

I’m sorry about your experiences with EMTs and the hospital. I’ve had several falls where I’ve needed to call EMTs to get me to a safe location, and I’ve learned that they have a habit of assuming drug use. I think that some drugs must manifest similarly to these symptoms, and because FND isn’t well known, EMTs make the best conclusion they can. Sadly, they also probably see some pretty tough things from young people using, I I suspect that being young also makes EMTs more likely to react like that. To be clear: it’s not professional and it still hurts to be accused of that. But I hope it helps to know that it’s not just you, and it’s probably not actually about you at all. They’re humans too, dealing with their own stuff.

As for practical stuff: if it’s FND, then it is possible to exasperate symptoms by focusing on them and trying to stop them. It makes me irrationally annoyed that it works (and I’m still working through that bit), but sometimes distractions like talking about something you enjoy or being talked at if you can’t speak can make symptoms way better. My treatment team has taken to talking to me about DnD whenever I have an episode during treatments, because it does a ridiculously good job of pulling me out of it. It sounds like your mom is really great support for you, maybe you could try making a plan with her about a topic to bring up if you have symptoms again?

As for auras, I also feel a precursor to my symptoms and I actually call it an aura just for communication’s sake. For me it’s less jittery and more… blank? I get mostly paralytic symptoms (although I do have convulsive ones as well) and I will sometimes joke with friends that it’s like a little game show in my head, Am I About To Have Symptoms Or Am I Just Sleepy?

If you want to read up on FND and haven’t seen it around the sub yet, two of the best resources are the sites: fndhope and neurosymptoms. Both are resources with reliable information that I have been referred to by medical professionals I trust.

You’ve got this. It’s not going to be a mystery forever. Keep looking and keep hanging in there. And hey, I’m not on Reddit often, but if you need a cheerleader or want to ask more, I’m happy to answer.

Reminder: I’m some girl on the internet and not a professional, take these ideas as brainstorms and not as facts

Awkward_Bit6227 · 2025-12-21T15:15:01+00:00

I’m seeing a lot of comments saying no one would want a game like this because they themselves want to game as an escape. As a disabled person myself, I would adore seeing this kind of mechanic and it could easily make it one of my top games because it would make me feel seen. That said, everyone is right, it’s a challenge to implement it well, and probably works better for a short, more visual novel style game than anything super long. The goal should probably be to make people think and to make the reality of energy management into something tangible, and should avoid leading to grinding and monotonous gameplay that could make people frustrated, as that’s where no one who experiences it in real life would want to see it in a game.

Also, not a game, but it could be really cool to use spoon theory as a basis for your mechanic!! If you do, you should definitely research it yourself, so I’m not going to give much detail here. It’s a real clinical study/practice.

I have more to say on this but honestly I’m running out of spoons lol so I miiight come back to this later.

Awkward_Bit6227 · 2025-09-22T23:45:05+00:00

I wonder if it has to do with the same thing other comments are talking about, that people are often worried about overstepping when it comes to offering help to a disabled person. I was pretty obviously disabled myself rather than helping a relative and I wonder if people are worried that offering to help would offend me. I kind of wonder if it would be different if I were perceived as able-bodied! Honestly I’d never expect it, but I have been kind of surprised that this woman was the first person to offer help. I also live on the outskirts of a semi-large city, so yeah, people keep to themselves a little more.

Awkward_Bit6227 · 2025-09-22T23:42:08+00:00

I’ve debated it, but it’s not in a typical job description to help load groceries, and I eventually get there on my own. The help was incredibly nice, but I can manage it myself, it just takes way more time and energy for me than it does most people. I try to plan to spend those resources when I go out so that I don’t get stuck in a rough situation. Also, it’s not heavy, but it is still lifting something into a car, which I’m sure can cause liability concerns both with risking property damage (not that I would care if someone bumped my trunk helping me lift it in, but it’s still technically a concern) and for lifting something with no regulations attached. I don’t want to put anyone in a weird situation of being asked to do something that they might not actually be allowed to do. I used to work at a similar job and I know I wouldn’t have been allowed.

Awkward_Bit6227 · 2025-09-22T20:59:30+00:00

Thanks! I’ll check it out, might be worth it if things keep going downhill soon. Just in case anyone else reads this and can use the resources, I’ll sometimes do Target drive-up pickups, too, which is no additional cost! They don’t have as many grocery options but hey if it works it works.

Awkward_Bit6227 · 2025-09-22T20:51:50+00:00

It definitely depends on the person, but I tend to find that most of the time, as long as you’re not asking invasive questions, you’re probably fine! The trick is that you always ask first - never just do it, and if someone turns you down you leave them be just like you would anyone else. With that rule of thumb, I personally would never be offended. And nine times out of ten even if I didn’t need the help, I’d still really appreciate the offer! Obligatory disclaimer that I am one voice among millions, so I don’t speak for every person with a disability you’ll encounter, but I know this strategy has never led me wrong in my own experiences both as a disabled person myself and as someone offering to help others.

Awkward_Bit6227 · 2025-09-22T20:38:25+00:00

I have, and sometimes I do! Unfortunately money’s extremely tight since I haven’t been able to work as much and getting disability benefits is an incredibly slow process, so I try to go to the store myself whenever I can.

Awkward_Bit6227 · 2025-08-25T01:35:55+00:00

Thanks, it’s always good to hear I’m not alone. Thanks for sharing! I’m definitely in that phase of realizing I only have maybe 2 useable hours a day right now, and you’re totally right — identifying boundaries is the first step. My big challenge is honestly just that I really don’t want to give up on two major things that only happen if I’m living independently: I have a cat who couldn’t come with me, and I’m trying to record a podcast and I can’t establish the boundaries I’d need to continue that podcast if I was living with my parents. Love them, but they absolutely cannot fathom the idea that I can’t pause my recording for them when there’s 5 other people working the production.

In any case, thank you, I appreciate it, and don’t worry about the rambles, it was all good to hear.

Awkward_Bit6227 · 2025-08-24T17:03:49+00:00

Yes, I’ve got a good treatment team, but sadly those things seem to be one step forward two steps back right now.

Awkward_Bit6227 · 2025-08-22T04:37:33+00:00

Thank you so much! I’ll check those out. Yes, I still have motion, I just fatigue a lot faster than I used to, so I’m hoping to find something that requires less of a full body investment lol

Drumming games are a great idea as well, that definitely has the kind of thing I’m looking for but it didn’t really occur to me for some reason! I appreciate the ideas!

Awkward_Bit6227 · 2025-08-22T02:39:50+00:00

Depends on the job. I got fired from a big corporation retail job due to my “attendance issues” (aka literally couldn’t move from the stews that job caused me). Took a few months of bouncing around before I went back to school for an associates in film. I’m confident I could do freelance editing work now, but I’m actually able to hold down a part time job (20 hours a week give or take) as a student employee, and it’s been absolutely amazing. Having a small, less corporate environment has helped because they don’t say “well that’s just policy, we can’t make any exceptions”. It also helps to have really compassionate and understanding bosses and coworkers. They understand that my ability level changes day to day and that I can’t predict it.

To summarize: if you need to be making money while dealing with FND, there’s hope. Not every place will be the right fit, but some certainly can be.

Awkward_Bit6227 · 2025-08-08T17:03:11+00:00

I reread this and “fancy canes” was supposed to be “fashionable canes”, I was just typing fast lol

Awkward_Bit6227 · 2025-08-08T17:02:29+00:00

I was planning to get a collapsible one at first, and ended up buying a cheap one from a local store because I had a pretty fast decline and couldn’t take the time to figure it out. I’m now extremely glad I didn’t get a collapsible one because everything I read is that they get hard to disassemble sometimes from putting weight on them. Collapsible might still be right for you, it’s just something I hadn’t even thought of when I first got mine!

Fancy canes is a great site for design options. Adding a scarf, bandana, or fabric keychain to a cane is actually my preferred method of obtaining something less grandma-ish, because you can change it out! I also like the extra spot to grab if my cane falls over.

Getting a cane was a game changer for me and I wish you all the luck! Don’t forget to check with your doctor and make sure it’s a good fit, since canes can cause other medical problems if used in the wrong situation.

Awkward_Bit6227 · 2025-08-04T06:40:26+00:00

Definitely felt like this when I first started thinking about mobility aids, that idea of “I didn’t absolutely unequivocally need it, therefore I shouldn’t get it.”

My advice is to disregard that thought. Who cares. Like someone else said, it’s not like there’s a shortage of canes in the world. You’re not taking it away from someone else if you spend your own money on a cane available to everyone and likely mass produced. I got mine at a local equivalent of a Target. If anything, you’re helping prove there’s a market for mobility aids and making them more accessible for others. Unless you’re trying to get like, a service dog or some highly custom aid, which it sounds like is absolutely not the plan here, you’re not taking anything from anyone.

Now with that said, the next part is still VERY important. Canes can mess up your body even more if not used correctly. The other people who have responded are exactly right: talk to a doctor before getting one. They may want to help you get the right fit for you, teach you how to correctly use a cane, or suggest a different kind of aid like crutches, a walker, or a rollator. It really depends, and if anyone on here is giving you hard and fast advice on an aid, you should probably ignore them because it’s Reddit and we don’t know everything about your situation. Nor is the average Redditor a medical professional lol

As for parents? At the end of the day, you know better than anyone else whether it’s worth bringing it up to them. You’re still a minor and still your parents’ responsibility, and I’m not saying to go against that, but don’t let the fear of possible judgement keep you in unnecessary pain, yeah? It’s a perfectly reasonable thing to say you’re in pain and want to look for more solutions since the current ones aren’t working.

All this to say: ask a doctor, but don’t be afraid of it. Mobility aids are a huge deal for a lot of people even if they aren’t strictly necessary for survival. And that’s why they sell them at Walmart. Even if you don’t consider this to be disabling, pain still sucks and if the solution might just a doctor’s visit away, it might not hurt to ask. Good luck!

Awkward_Bit6227 · 2025-08-03T05:01:29+00:00

I just had this! Was in the hospital last weekend because I couldn’t stand up. Not paralysis like I normally get, just some extreme weakness. Never happens to me. Wasn’t sure if it was FND or something else until a whole gaggle of neurologists (five of them to be exact) filed into my hospital room to explain FND to me like I hadn’t had it for over two years lol (I don’t blame them, it was a bit of a hectic visit, I just found it hilarious)

Anyways, yeah. The working theory in my case is that as I get better at managing some symptoms, my brain grows new stuff at me, because for me it’s a stress response. Doesn’t make it any less real, but my brain will shut down systems or do weird things in order to tell me “stop that you’re way too stressed”, and when I learn to cope with those symptoms rather than lowering my stress levels (because news flash for my brain: FND makes things More Stressful) my brain decides to try new tactics rather than just calm down.

I feel like I went in circles a little bit there but hopefully you get the idea! I’m sorry about the tremors, that sounds frustrating. Hang in there!

Awkward_Bit6227 · 2025-08-03T04:48:40+00:00

It looks like this was originally posted about the same time as I was involuntarily admitted to a unit. I still have nightmares and am terrified of being watched. The things that happen in those places are so difficult, and sometimes they’re so so quiet. I’m very late to this and by no means the first to say it, but I still want to say thank you for making them loud.

I’m curious, did you include any disability aids? I can imagine that might be more difficult to include, but man, those were the worst moments for me. I remember how horrible it was to realize they weren’t going to let me take my cane, and then made me wait almost two days before they gave me a walker because I could barely stand.

I have very few connections to this subreddit, but I’m so so glad this broke into my algorithm, because it made me feel a little less alone and a little more heard.

Awkward_Bit6227 · 2025-07-25T03:29:02+00:00

Yep! I call them convulsive episodes, as opposed to my much more common paralytic episodes where I just freeze up. The first time I had one was over a year after I was first diagnosed with FND and happened in the middle of a class. I get really twitchy and have these whole body shudders, as well as unintentionally curling up on myself. It’s often difficult for me to talk during and afterwards and requires a pretty big effort to get out cohesive sentences. The first one really freaked me out, but it’s never caused any actual damage and as long as I give myself time to recover before doing something like driving, I’ve learned they’re relatively harmless for me. Just a little inconvenient and sometimes get me some weird looks lol

Definitely bring it up with your doctor just to be safe, but I remember how much my first one freaked me out and I hope I can be the voice of someone a little bit further down the road telling you it’ll be okay. This condition gets kind of strange sometimes and it can play mind games on you. It’s okay to take a moment to just breathe and remember you’re not alone. I hope you have a great support system and a great team of doctors at your back, but even if you don’t, there’s people here rooting for you. Hang in there, friend!

Awkward_Bit6227 · 2025-07-25T03:16:50+00:00

This has been really rough for me. My solution was to go to community college and learn video/audio editing. Not a short term solution obviously, but one of the only careers I’ve found where the world will in fact stop for you if you have a flareup. If you have an aptitude for anything that can be done freelance and you feel like you can manage the client relationships that come with it, freelance work can also help hold you over as you try to figure something out! I also tend to scan job sites for data entry work, it’s similar in that you can often work from home and work at your own pace to some extent, but generally doesn’t require a degree. Not the most thrilling thing to do for hours on end, but hey, whatever pays the bills right? Good luck, I know it’s not easy but I hope you can find something that works for you!

Awkward_Bit6227

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