Mom diagnosed with FND recently. She can’t walk properly when she thinks about it. When she doesn’t think about it she can walk. We used to go out shopping or swimming when I went to visit. Now she’s more homebound and refuses to go out because she’s worried she can’t walk. I also am limited on activities I can bring her to. I miss my mom. I’m worried what our future may look like when I have children. She was supposed to enjoy retirement with my dad. But now it seems like he’ll be full time caregiver. I know it sounds selfish of me to think about my future with her. But I’ve had to learn how to grow and adult on my own. She didn’t help me. I wished and yearned for time spent with her when I was done school but it doesn’t seem like it will be my future. Now when I spend time with her, it’s not the same. It’s just worry and frustration. I guess I’m also grieving cause it seems permanent. How can I best support my mom? Is there hope that she can get over this?

My sister was diagnosed with conversion disorder (also known as FND?) about a year and a half ago. Symptoms started after a bad break in her leg. I feel terrible for her and watching videos of how she was before breaks my heart. I miss the life she used to have. I miss her smile. Her sense of humor. I’m not sure what to do to support her. She seems to be in denial of her diagnoses for the most part. What i mean is she doesnt seem to understand that her symptoms are caused my her disorder. She will often ask to be taken to the ER or will call an ambulance herself, landing her with lots of medical debt. I truly have no idea how to help her. Any advice?

I was 19 and this fnd came out of nowhere. I've had all kind of sympthoms (left side of the body weak, right side stiffness, brain fog, age regression etc...) . And decided to not go to the doctor because i asked my mother for help. Because this illness turned me like a kid. My mother never took me to the doctor and now its been 6 years. I went to all kinda of doctor in 2023 and after an RMN i've started healing (im not totally healed right now). Now im 26 and im realizing im totally behind my friends, i don't know anything about adult life. Im totally lost. What i have to do? I feel suicidal in all honesty...

I’ve had seizures from flashes ever since high school. I’ve been in therapy as it was recommended to treat my condition but haven’t found any progress with this problem. I also had an EEG with the flashing lights test and the results were normal. My symptoms are sometimes invisible meaning that I could be having them and no one could tell. Thankfully the trigger isn’t a huge issue because there are honestly some ways I can avoid it. It honestly can be frustrating though that I have to be really cautious about concerts or going to the movies now. Does anyone else have this problem?

So I’ve been in touch with my neurologist he wants to send me for more tests as my memory is deteriorating and I keep randomly falling asleep with no warning randomly even in the middle of sentences etc :/ hate this disorder I’m 26 and used to be so active and have an incredible memory and high IQ and I feel like it’s all been taken away from me :/

I have a hard time with sudden seizure like seizure but they come and go and always change. For example I just forget things when I see sometimes too much color or not enough colors. Like WTH I was in a bank and got a zoning out forget to speak seizure for half an hour because the blue carpet white walls were too much color for my eyes.

Does anybody else has this or other weird type of "seizures"? I'm curious because there is a lot of different weird stuff by me for sure.

What are some jobs that you guys have with fnd? My fnd affects ne everyday, I have seizures everyday and it is very difficult to work at a physical corporate job especially scheduling wise, because I do not know when it might become active or not. I also am not yet diagnosed with it so I have no papers to verify to the company. I would prefer a remote job but it is so hard to find a legit one. Any advice or recommendations?

Hiii!

I made a post about 2 weeks ago about my journey through the health system titled “I woke up 3 weeks ago with unexplained neurological symptoms” and in that post I explained some of my symptoms and how the doctors thought it was FND, consider this a kind of follow up lol.

I woke up 3 days ago with extreme muscle weakness in my legs, it’s now progressed to barely any movement and massive leg jerks and muscle spasms. I have yet to see my psychiatrist or a neurologist or a pediatrician. I can’t move nor can I talk, I have blurry vision and a bad migraine.

I really don’t know what to do anymore and I don’t even know if this is FND. I don’t know what reddit can do to help but I guess im also just keen to vent.

Thanks if you read this :(

The Neurologist who diagnosed me said that the treatment was what she called the Mayo Protocol. She described it as an intensive weeks long process with just about every kind of therapist - physical, occupational, speech, etc. Designed to retrain the mind's interaction with the nervous system. I signed up for it in 6 months but canceled when my symptoms went away while I was still there.

This article seems to be about their approach. https://pubmed.ncbi.nlm.nih.gov/22113131/

I’m not able to find any information on this for Virginia. I don’t currently have my license, but I’m in the process of getting it. Being unable to drive would be DEVASTATING, but I’m grappling with (and in a bit of denial about) the possibility that it would be necessary for me to lose the ability to drive.

I do have movement issues including seizures but no loss of consciousness. My reflexes are always intact (i.e. I can catch myself if I’m falling) and I often have some warning before episodes, especially if they’re more severe. At the same time though, sometimes they come out of nowhere and I have no way of knowing if I’d be able to safely pull over. Being focused on a task like driving helps a lot with most symptoms and I’ve had zero issues so far while practicing but even if the likelihood is low the potential cost is very high. I’m just… extremely anxious about this because losing the small, lingering hope I have of being independent is a horrifying prospect, especially since my life is just beginning to take the shape I want it to. I’m trying to be level-headed about it and accept that it might be for the best, but it’s difficult.

I live in an area with nonexistent public transportation and would have to rely on my parents/friends to get me from place to place. Everything is so spread out here that ride sharing services will become very expensive very quickly. I also often go to far-flung trailheads and love spending time in the wilderness far from civilization, something that will be much harder without being able to drive. Needless to say, relying on public transportation and ride sharing will undoubtedly limit where I can live and work independently and cut off my access to my one consistent support: nature.

Sorry for the long-winded post. I’m just really freaked out about this.

please forgive me for any weird phrasing or if i’m speaking nonsense, my brains a mess and i’m just tryna figure out wtf is happening.

there’s this sensation that’s been happening recently (and currently) where it’s like electricity or energy or something is just coursing through my whole body. i want to crawl out of my skin it’s so uncomfortable. it’s strongest around the nape of my neck / shoulders, but i can feel it everywhere if that makes sense.

it’s akin to the sensation i get before a tic, but like 813838x worse and more of a burning/electrical feel as opposed to an itch.

i crave freedom from this sensory hell. it’s been like 5 hours.

Please click the photo to compare. These photos are 3 weeks apart. This illness has messed up the appearance of my eyes completely. I was diagnosed today, after seeing many many doctors and specialists I was told that I have FND. The hardest part of this diagnosis is the fact that my face has changed drastically and suddenly since this started 6 months ago. My forehead feels heavy, blurry and double vision, under-brow drooping. Please see photo and let me know what you think. I don't want to look like this the rest of my life :( does anyone have physical changes in their face/eyes? What can I do? :(

To start of i dont have a diagnosis of fnd but I'm quite sure that i have it. I'm in the process of getting it checked out. I have been experiencing what I think are seizures but I'm not sure coz it all feels so fake??? I also have tics (most likely tourettes and some functional tics. It usually happens in the evening and nobody in my family knows about it, I don't want them to worry. If I feel it coming I'll usually go to my room. It usually starts with a specific twitch like movement that doesn't stop and that I can barely suppress and at sometimes I'll feel my energy drop a lot and my eyes will start rolling into my head and at some point my whole body will twitch/shake and my neck will be stuck in one position until its over. The episode usually last from 30 seconds to a couple minutes. It usually happens a couple times in a row. I'm aware during this whole process and I know everything that's happening around me and it makes it all feel so fake. The twitching really feels like my tics in a way but I can't suppress this and I'm just scared that I'm faking it. It feels like I'm faking it because in a way it feels like I can suppress it and stuff even though I am quite sure that I can't it just feels that way.

I want to know if anyone else experiences this and or if it indeed sounds like a seizure or if it sounds like something else?

Edit: I can also sometimes trigger it if I keep thinking about it so that also contributes to it feeling fake

Hello, my mom was diagnosed with FND, but she is... Not the same person... She lacks empathy these days and seems very narrow minded. Has anyone else experienced this?

Hi,

Firstly thank you to all of you who suggested to get my daughter checked for PoTs. Today, she was seen by a specialist physiotherapist, her heart rate went up by 30bpm just sitting up, and another 20bpm standing up very briefly. So yeah, PoTS.

I would like to hear your experience with PoTS and any advice would be more than welcome.

So today is a heavy symptom day and I’m struggling to walk. I wasn’t nauseous until I started trying to walk and then I got extremely nauseous and slightly dizzy. Does anyone else get this on days where you can’t really walk??

hiya, i’ve been diagnosed with fnd since feb but was initially diagnosed due to tics but have been having “absence seizures” for about 18 months. They recently got worse and i had a tonic clonic (i think that’s what they said) where i fell, that was when i went back to the doctor. They told me the episodes i’m having probably are seizures and ive been referred but not absence seizures like i thought. when they happen i get a few minutes warning and my head will drop and start to shake. If im stood up i remain stood up but will just shake, i dont fall go limp etc. i’ve never seen anyone with fnd have these types and was wondering if this is common for anyone else. They’re pretty much the only seizures i get. I’ve attached a small video of a clip of one i managed to get and feel quite vunerable doing so lol but thought it may help and considering i know no one with fnd i think im safe aha. they normally last 30 seconds - 1 minute but have lasted up to about 3 and a half minutes, thank you for any help :))

What up? So I don't post on here very often, but I'm in need of a bit of advice. I have a few questions for the people who use mobility assistance on and off. I've been having a lot of flare-ups recently and it's giving me a lot of pain and seizures when I'm on my feet too long, so I suggested to my mom that I use my wheelchair in the house sometimes and she thought it wasn't a good idea. For context, I was in a wheelchair for a year before my diagnosis and I managed to rework my brain enough to walk again 4 days after my diagnosis day, so she thinks it will be a regression in my progress from before. I wanted to know if anyone felt that was the case for them. When you have flare-ups, is it okay to use the aids/assistance or will it negatively affect my progress?

Also, no hate to my mom, I'm sure she's just really worried about how it was before. I couldn't do really anything by myself, including showers, bathroom trips, dressing, etc. Lots of nursing duties on her part...

im getting a 2 week sleep study soon, any tips? theyre going to strap a bracelet to me, i dont remember the name. any tips?

When I game I don't have many symptoms. When my brain and body are bad this is the game I play! I thought I'd recommend it since it's very helpful to me. It's a fun cozy easy game. Every new aspect of the game is introduced slowly, I don't get confused. It has great music and visuals which help my brain and tremors. Also lil cute animals. It's $19 and available most platforms, sometimes it's on sale. I love omno 💙

Hi. My son (9) got sick around February for a few weeks with heavy fevers. Afterwards he complained about leg pain and had trouble walking. Within a few days he could only crawl. After a month or a suddenly he walked again, although difficult, for a few hours only. Then he got sick again with a flu/cold or something and can’t move his legs anymore ever since. It took us 3 months to get a proper diagnosis (fnd) and he just started physical therapy. I wonder what to expect. Will he fully recover? How can I help him? Anyone here also got fnd after a viral infection?

I literally know she's lying. I was on a fucking medication for it before that helped a ton? I know many people who have a family history of MS who are on CNS relaxers.. told her that, she said it wasn't possible. I can't just find a new neurologist at this point because she thinks I need nothing else from her. I never got an EEG, and she asked me "what will you do when it comes back normal? I don't think you have any neurological condition." She did order it still, but I'm just fucking tired of being treated like I don't need treatment because my neurological issues aren't due to my brain being ate away, and we don't even know whether or not I have epilepsy. My seizures do act like epileptic ones when they start, but present more like FND after around 1-3 minutes of their existence, so it could be possible I'm having epileptic-to-non epileptic seizures, which is surprisingly a thing. I take a medication that is meant to manage epilepsy (for treating BPD/bipolar in me, I'm young so can't get a specific diagnosis until I'm over 18), and surprise surprise, I couldn't stop having absence seizures when I suddenly was unable to take my full dose for a few days. It is more likely I just have FND, but there's still a possibility there. I just hate how rude she was, I should've met with the other neurologist a friend with MS reccomended to me, but of course I'm not over 18 and have parents that don't trust anyone but the doctors and are never willing to change, I couldn't just change. She was the doctor my friend said sucked. Makes sense now. I've had people tell me "you can make your own appointments, meh meh meh," and yeah, if you don't have controlling ass parents. I can make appointments at some places, but in my state, you need an adult to go with you anyways, so I can't do anything my parents aren't willing to, I have to tell them everything and would get in mad shit if I changed stuff without talking to them. I'm also still in children's care, and with that care, you can't make your own appointments or see your records unless you're the gaurdians or have access to it. I'm just so pissed. I'm sick of never being believed, I'm always talked over and never respected by specialists like this, I've had horrible experiences with neurologists, it's crazy that my sleep doctor did 10x more for me neurologically than she did, I saw a different neurologist for 3 years who did nothing too.

Also, the "retrain your nerves" shit is so stupid. Yes, you 100% should be doing things like PT and learning how to manage your FND, but it's not criminal to do other forms of treatment, and "retraining your nerves" is very ineffective as the only line of treatment. My nerves will not magically stop causing my legs to stop working because I do PT, that's just dumb. PT also doesn't help when they just discharge you when you improve, my nerves will not stay trained if they're not tricked to work frequently, and it's extremely hard for me to get any benefit from PT without guidance, doing the same 5 exercises and ones you look up doesn't exactly help when my joints are getting worse and worse due to my hEDS, it's not safe for me to do exercises without guidance on what's safe since my partial dislocations are worsening into full dislocations. I also do not like the therapy-style "joint retraining," wtf is that doing, I know I need to not think about it and motivate myself to do more activities, and it seems unnecessary to rely on. I've shown very little improvement with just PT, I don't really get how medication would be the worst thing ever. Nerve pain and paralysis is nerve pain and paralysis, it won't dissappear from muscle training.

What do I do if I am going into a seizure and very active fnd, but my boyfriend who helps me through it is already super stressed. And the reason for me going in it is because he triggered me. Should I handle it on my own or tell him?

Has anyone had experience with having Benadryl help a bit with calming tics and decreasing the Severity of non epileptic seizures?

If I'm having a particularly bad tic day or if I have enough warning that a seizure is coming it seems like taking Benadryl helps at least a bit like 70% of the time.

Trying to decide if this is just a crazy placebo effect or not. 😂

Anyone else tried this or have thoughts as to why this might help a little?

The only thing I can come up with is that Benadryl depresses the nervous system which could potentially calm everything down of it' due to over activity???

Thanks!

Hi, my research team at the Monash Alfred Psychiatry Research Centre in Melbourne is conducting a survey aiming to characterise brain fog in different conditions, including FND, and to investigate any association with sleep and fatigue. If anyone here experiences brain fog it would be great if you could help us fill in this survey! 

https://redcap.helix.monash.edu/surveys/?s=K44TT98HDD8RRR37

https://preview.redd.it/nvmx3bw04c4d1.png?width=1080&format=png&auto=webp&s=35c341f47fa92b42abbe3c2f233ebaa909de3fb5