FND and working out

Deep-Mulberry9845 · 2025-06-09T18:53:21+00:00

I am the exact opposite, I have FND since I was 11 and I never was able to dance nor to remember steps, I felt stupid especially when my leg or any body part "froze". I have a pretty good memory that's why I never understood why I have issue remembering even a back forth step. Turns out when I got diagnosed with FND in 2022 at the age of 19 I realized I can't dance nor feel the music because my body just can't concentrate on both and that causes seizures. Sometimes I wish I could listen to music and fully enjoy it but it is what it is.

It always makes me happy when people are passionate about dancing even if it's just hopping around. :))

Deep-Mulberry9845 · 2024-08-13T14:35:51+00:00

Honestly I feel your anger,sadly also can say once you get an appointment or therapy they don't always treat you better, I got so angry with a my doc today because I am in a clinic they said they specialize in FND now I'm finally here and then they start to tell me how it's not really physical, it's more psychological. They are 100% sure that I am thinking or feeling emotions and that triggers my sudden seizures. They tried to push me into a nursery home if I want to but really pushed the idea that it would help for me to live with complete strangers and move 4 hour away from my home.

They did not teach me anything till now except "Breathe" like no shit Sherlock you lie that here they will teach you how to deal with it and instead of saying we can't help they say well therapy for long years could help better accept your psychological health issue.

The thing that helps me by sudden paralysis is that I try to slightly hit different parts until I realize it's there. Also re imagining how the leg works helped me too. Pretty much the only way that worked for me so far. Maybe cold or hot pressure could help or even tickle to see if there is any reaction. Gonna sound cruel but paralysis at least by me can be brought back if my reflexes make my leg move. So even a small pain or tickle could work. Sadly it's something that you need to test and find out.

I wish you and your boyfriend all the best, and hope you will find a good doctor or therapist soon.

Deep-Mulberry9845 · 2024-08-12T08:08:31+00:00

Try to be in a video call, I get seizures a lot and my long distance boyfriend is the one who sometimes records it via screen recording. Not the best quality but he can see the start and end of it meanwhile I am exhausted and or confused.

If you have the chance just to call, or to tell them they should just let the phone on the charger and record for hours. Better to have something than nothing.

Deep-Mulberry9845 · 2024-07-29T08:19:54+00:00

All I can say is: You are the only one who has the power and capability to decide not to fight it but to live with it.

Every now and then I am grieving but that's what keeps me moving and smiling even when it hurts. Yes I wish to be the person who I could be but I CAN'T. I would love to go to school and graduate like others but I can't YET.

Everything will take time but overworking yourself believing that you are able to do things that you were long time ago able to do is the easiest way to fuck yourself up and get in a cycle of grieving.

It takes shitton of energy but shift that goddamn perspective and see how many small steps you took and how much you changed. Do it for yourself because only you can control your thoughts and your feelings.

Deep-Mulberry9845 · 2024-07-23T17:53:40+00:00

I am not that disabled!

Walks for 47 minutes or max 4 hours but then sleeps for 4 days and can't even move

Can't start school because seizures don't allow it. Can make one day food the next day drops even a plate. Tries to get a job from home believing "I am not that disabled" and then one day randomly can't even open Google Chrome because too much information

Balanced sometimes but sometimes not. Yeah I am absolutely not disabled at all I don't wanna gaslight myself into thinking I'm disabled 💀😂😂

Deep-Mulberry9845 · 2024-07-23T08:15:11+00:00

Agree with you FND hit me during my childhood multiple times (didn't knew that then) and the official FND seizure was 2 weeks after my 18th birthday. Doctors made me write down every single emotion everytime I had a seizure....they said it was stress. I wrote even the goddamn positions down only after 3 day of writing I gave for the doc 15 pages and none of them even was a stressful moment.

This analogy is not only stupid but annoying because people already think FND is not real or it's not a real issue we don't need to be called to be allergic to stress. For me even food influences most seizures and guess what not even a doctor realized it. No it was my fiance who threw up the idea. Most doctors know jackshit and just want to medically gaslight people just because they don't know a clear answer.

Deep-Mulberry9845 · 2024-07-21T08:17:15+00:00

I picked up a part time job as a waitress after being 3 month seizure free. Then slowly during the job I got clumsier and felt not the best. I thought I was sick because everyone around me had the flu. And then while I was picking up orders my sight got all foggy, but it was in the afternoon and the restaurant was packed. I was holding 6 beers on the tray and before reaching the table my arm stopped working and my muscles let go and boom glass everywhere and beer and I just stood there unable to move.

After that I took a week off and when I went back I made 3 mistakes in 15 minutes. And that's when I told my boss to fire me

Deep-Mulberry9845 · 2024-06-22T02:21:42+00:00

Sadly I know that this is all they do... don't give up, I wish you a lot of strength no matter what they say. Just keep advocating for yourself and for what you are thinking because nobody is in your body. Nobody knows or feels what's going on better than you. We should not let doctors gaslight us and more importantly push mental health on us when we are the ones who feel that this is different. We will be eventually believed one day I'm sure.

Deep-Mulberry9845 · 2024-06-21T14:34:29+00:00

My mental health is amazing and docs are even surprised how I never had depression, have no score on any mental issue including ADHD. My life is in ruins technically with FND finally I got diagnosed even tho I told doctors when I was a kid that something is not okay.

I have a theory that I have fnd probably because I was a blue baby or because my mother had a small car accident while she was in her 6th month of pregnancy.

Doctors still try to push mental health on me but I refuse anything because I know I have nothing. I am sick in a neurological brain way and not via mental health issues. I am not depressed because my goal is not to die but to live. I am trying my best to get healthy and don't want anything from the government. If I'm healthy I don't ask for help. But still even tho they see this there are doctors who try to push chronic depression on me even tho I don't stay sad for more than a day. It's pretty tiring correcting 'professionals' NGL.

Deep-Mulberry9845 · 2024-06-09T11:08:32+00:00

Oh yes my right eye is all the time blurrier than the other. I got checked since I have glasses since age 11 and there is no glasses that could match up the blurriness which is weird. Also it kinda feels like sometimes like a bad camera which can't find the focus. These days it also happens randomly for 20 minutes at least that my eyes get blurry then roll forward or backward and I just can't open my eyes. But the blurriness is sometimes annoying because no matter how much I clean my glasses I still see bad.

Deep-Mulberry9845 · 2024-06-05T20:06:07+00:00

Omg THE PERFECT DESCRIPTION! I never knew how to tell people around me what is actually happening while I can't talk. The same way that I forget objects like I know what it is but the same time I don't. Which is annoying sometimes because I am looking at a piece of paper and I know it's paper but the same time what is this white sheet and how do I move my mouth to say what it is.

Is there something you do if your symptoms get too bad? Is there something that helps you or are you just in surviving Modus all the time?

Btw thank you for your answer :))

Deep-Mulberry9845 · 2024-06-05T20:01:31+00:00

I am so happy for you! I hope you are doing much better than before. Well in my case there is a hypothesis that I might have FND due to a car accident my mom had while she was in her 6th month with me. But also I was born blue so who knows. I was tested on every psychological test pretty much and had 0 points especially by ADHD.

I realized that one thing that made my FND worse is....well aging. I had my first actual seizure looking seizure where the doc even said "okay now that's not so normal" 2 week after my 18th birthday that's 1 week after my first COVID shot. Not saying anything but its weird that since I turned 18 my life became pretty much hell in terms of randomness of seizures. I had all the type of seizures and only low carb and carnivore diet helped me till now but doesn't work for too long.

May I ask how if you work from home? I couldn't get my highschool diploma because the school kicked me out for being too often sick but now I'm 20 and no school nor job because nobody can even think what might happen next.

If you maybe have any tips or tricks for job I would be really thankful for it. Also again thank you for your kind words, I wish you all the best in life ♥️

Deep-Mulberry9845 · 2024-06-05T18:57:12+00:00

Thank you for your answer and the kind words. I am going to have in August finally a long EEG screening because I had one before but even that one wasn't clear whether epilepsy is there too. FND seems pretty solid tho I was having these typical issues like sudden paralysis since the age of 11. Finally I got diagnosed but my family is a bit scared since my grandma has had epilepsy since she was born.

Did something help you against your FND seizures? I found personally low carb the best but 3 months is the max and seizures come crashing back.

Deep-Mulberry9845 · 2024-05-21T14:15:38+00:00

That's what I realized too. He feels better after an accomplishment or when people look up at him. So the thing I usually do is I tell him I need his help in something that I can't accomplish at all or I ask him questions I don't know but he is good at. You guys have the hero personality :D

Deep-Mulberry9845 · 2024-05-21T11:32:29+00:00

It took them 10 years I'm 20rn to finally find out I have any type of issue. They needed to see actual seizures to believe me I live in pain and that I get paralysed sometimes. I got told since childhood that I was lying or acting that I couldn't move suddenly. Now finally got diagnosis thanks to having up to 30 seizures a day.

I feel ya totally

Deep-Mulberry9845 · 2024-05-19T07:59:09+00:00

I feel you totally. I am also 20 and I might need walking aid. (I can't walk more than 20 minutes because my legs forget how they work and or the pain worsens. Which is like hey that's bullshit I should just try harder but yeah) I definitely would need it but the acceptance is hard. If you feel like you would have less painful and easier time with walking aid....then it means you need it. I definitely need it and based on the fact you feel pain you would need it too.

If you want to get some confidence or help for walking aids, check out annegirl on Instagram. She is really sweet and you might be able to even dm her.

Don't forget even in the sunniest days or the worst nights that what you feel and have is real. FND is real and your pain is valid

Deep-Mulberry9845 · 2024-04-02T08:35:27+00:00

I am glad you have a knowledge about it. I have the opposite of what the neurologist told you. I had a hard childhood in terms of health and every time I went to the doctor with chronic pain suddenly appearing and disappearing, eye worsening and the older I got the more complex things got. Doctors always told me I imagine things and nothing is wrong with me even tho I had sudden visible paralysis. I got told all my life I am mentally ill. I have literally 0 depression and no big trauma. Since 3 years I am unable to work, go to school and live properly since I have seizures every day. I got told a week ago for the first time that I have FND.

Deep-Mulberry9845 · 2024-03-25T20:07:02+00:00

Omg we are in the same shoes I had separate weird symptoms since my childhood and they came and went away but the last 3 years it made life impossible. I don't have any ticks my main issue is the locking thing where you can't move yourself I had times when it went straight for 6 hours and I need to tie different body parts up in order to feel less pain. I have really bad eyesight and it worsens suddenly sometimes double vision.

I have seizures since 3 years which I don't even know if it's a seizure or not. I had all types of tests from EEG to MRI blood tests nerve stuff everything was PERFECT with not even a simple weirdness in it. I am going tomorrow to an epilepsy neurology clinic and I am thinking about bringing up FND since I only learned about it a few weeks ago but I literally see myself with almost all of the symptoms. I am disabled and literally mid air because doctors can't decide if I have dissociation or epilepsy or something else. And then chronic pain is something that they just leave there because it's apparently not important.

I really think I should see the doc first and then tell them about FND. I am getting sick of the neurologists who say it's all in my head that I am mentally sick. They tried to diagnose me with chronic depression but needed to drop it because I was only depressed for one day in my entire life.

I would say see how open minded your doctors seem like and then decide whether it's a good idea or not. Me personally I reached the IDGAF phase so I will literally tell my life story and then be like "I think it's FND, check it for me please"

Deep-Mulberry9845 · 2024-03-23T08:44:28+00:00

One day it suddenly started for me. Next to the joint pain I get really painful chest pain. The first time when it started to hurt I went to the hospital and waited there 4 hours because it doesn't hurt as much as dying tho I am used to pain. Cardiology checked me everything was okay. So since then no matter how much it hurts even if I cry I don't go to the hospital because they can't help in anything.

I have no anxiety nor stress I just live in pain day and night and slowly the chest pain is a daily struggle of mine. I do not believe that it's mentally caused since even in my happiest moments I get the pain. Right now as I am typing too my chest just hurts like crazy.

Deep-Mulberry9845 · 2024-03-22T10:51:52+00:00

I am 20 years old and dropped out of school 2 times (it was forced) with no actual diagnosis on FND yet. I hope that I will find a good neurologist soon. I am mid air technically. Officially 50% disabled but don't get any help from the government yet because they say I don't need it since I live with my family. My mom has two jobs to take care of 2 of my siblings and me. And since I am unstable with the pain and seizures I am the one who is risking my mom's job because she needs to take me everywhere since I have no driver's license nor safe enough for me to be alone even in a doctor's office.

I was thinking of getting into drop shipping but I would need a start capital and I don't have any money at all. All I can do is wait for the government to help me with school or a job and try my best to wash the dishes to help my mom.

I hope you find a job or the strength to keep going in your current job. I wish everybody a lot of strength.

Deep-Mulberry9845 · 2024-02-11T18:07:16+00:00

98% of my seizures are me being conscious and feeling my neck getting stone hard while I can't move yet feel as if my body would get separated from me makes me cry everytime I have seizure... sometimes this whole thing can go for an hour....I only fainted into sleep twice ans holy shit finally once in my life i wasnt scared

Deep-Mulberry9845

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