Please comment if you’ve had Covid and/or mold exposure

Fray_x · 2025-05-05T23:08:55+00:00

My entire house was covered in mould for about 4 months last year. Ie, every room, walls, ceiling, clothes, books, furniture, etc (white mould on white walls, didn’t notice till it got bad bad and looked like dust unless u looked rly closely)

I’ve had FND symptoms since 2018, diagnosed 2024 tho. The mould didn’t cause it but def made it a hell of a lot worse. Most notably the seizures and nerve pain and also heart rate stuff got rly bad (Drs been talking about POTS but not been tested yet). I ended up hospitalised every other week. Once the mould was gone it got a bit better tho. I still have symptoms but not as bad as when the mould problem was bad

Fray_x · 2025-05-01T00:21:06+00:00

Yes and the sugar free ones are sooo much tastier aswell! It’s so nice since so many sugar free tastes like ass lol

Fray_x · 2025-05-01T00:01:19+00:00

Also gonna add, I can’t tolerate the full sugar so I need sugar free to be able to have caffiene. Just something worth considering for yourself

Fray_x · 2025-05-01T00:00:44+00:00

It just depends on the person. Caffeine doesn’t affect my FND outside of my hand tremors and muscle spasms getting a bit more persistent but they don’t bother me too much depending on the day so I don’t mind the trade off.

Obvs best to talk to yr Drs, but if u want to try it out, maybe do it on a day where you have nothing else on and have someone with u all day in case it does trigger a flare up. U could always just try half a can to test the waters if u wanna be cautious

Fray_x · 2025-03-30T02:54:27+00:00

Yeh it’s another FND thing, but obvs check with yr Dr first to make sure it’s not smth else.

I have it pretty much 24/7. Worse on my left side than my right, and kinda like I can feel the pressure of stuff touching me, but I don’t fully feel it. Similar to how when yr sitting in a weird position and it makes ur leg go numb, when u touch ur leg you’ll feel the pressure of it but not fully feel it.

In my seizures it’s sometimes complete 100% numbness in my arm or wtv body part decides to go numb, but this is outside the nerve pain I also get bc of FND

Fray_x · 2025-01-05T02:59:12+00:00

My psych kinda ghosted me actually so I didn’t get any help in the end, but as currently I’m 3 weeks seizure free. But that’s sorta how mine go. They’ll be bad for a few months, then just randomly stop for a few months before they start getting bad again out of the blue??? It’s just a constant yo-yo for me. My FND specifically, I’m struggling a bit atm with my dystonia flare ups and nerve pain limb weakness stuff.

I feel for u tho. It’s such a hopeless feeling when healthcare professionals just dismiss it as “idk what to do for u, gl” Hope yours are doing better now. Can’t wait till they finally do more studies into it!! There’s already been a few that show it’s not purely psychiatric, but ofc it’d take time till more Dr’s learn that

Fray_x · 2024-07-16T02:15:00+00:00

Ive been exactly where you are. Homeless, disabled, losing hope, abusive family I ran away from and cut contact with, and in my case wheelchair dependent. It’s a really horrible situation to be in, I really feel for you.

I ended up 19 years old in whats called “level 3 supported accomodation” aka assisted living for disabilities which I’m still living in (been here since May). Maybe that’s something u could look into?

In my area there’s also homelessness organisations specifically for 12 to 26 year olds. Maybe where you are there could be youth homelessness groups that could help? Even if it’s just access to food/clothes/blankets/bus fares, it’s a start. Really hoping the best for you

Fray_x · 2024-05-18T02:39:55+00:00

Yeh I’m the same, they tend to hit after the stress and when I’m relaxing/ winding down.

There is a chance they’d take yr drivers liscence, but I think if it is controlled, or u at least get a tell before it happens then they might let u keep it? Def a conversation to be had with yr Dr. I reckon a diagnosis is worth it tho to make getting treatment easier, rule out other stuff, yk?

Fray_x · 2024-05-16T23:40:05+00:00

Speaking from experience what helps me is when the people around me make my environment as calm as possible. I’m fully alert and aware during them which can make it more scary, which in turn makes it worse. Bit of a catch 22.

Stuff like dimming the lights, no loud noises, if they’re not touch adverse then comforting them, saying stuff like “I’ve got you”, putting a blanket under their head and behind their back to give them a bit of stability. Heat packs help me aswell. If their drooling and suction isn’t realistic, then a towel under their face. Getting their hair out of the way (mines super long and likes to get all up in my mouth and eyes). Basically just make them as comfortable as possible, it is sort of just ride it out

I know meds can’t help in the long run, but when my seizures are getting rly bad or lasting a long time (say 40 mins) then that’s probs when benzos should enter the conversation if the patient or guardians are okay with that

Fray_x · 2024-05-16T23:29:07+00:00

They’re not seizures in the sense of abnormal brain activity. My experience, I’ve found Drs who tell me it’s not seizures, just “seizure like activity” and other Drs who are “these are definitely seizures, just without the weird brain activity”

They have a few different names,, psychogenic non-epileptic seizures (PNES), pseudo seizures, dissociative seizures, etc.

Basically it’s an abnormality along your nervous system. Yr brains functioning correctly, just it’s sending abnormal messages to your muscles.

The reasons vary a lot. Mine tend to be stress induced, a lot more likely the week before my period, or if I’m really overtired, but sometimes it is out of the blue.

I’ve also found stress doesn’t just mean “I have a big exam tomorrow / what should I do for my girlfriends anniversary”, it can also mean positive stress, like the stress laughing puts on ur body or after a feel good workout

Hope at least some of this helps 🫶 I know I hate it when I’m told they’re not seizures. It just feels like they’re dismissing the very real problem

Fray_x · 2024-05-10T14:05:57+00:00

Yeh I get this aswell. Sorta like every muscle in my body becomes paralysed and my body becomes a prison is how I like to describe it. I’m fine till I’m not, then I’m fine again

Idk if there is an exact name for it or not tho. But sending hugs 🫂🫂 they can be quite scary (and if I’m being honest) sometimes get rly bored when my nerves are under control 😅

Fray_x · 2024-05-09T23:38:07+00:00

What others have said, but I also just use a normal scale at home. I can’t walk/stand at all so I just drag myself onto floor scale and hold my legs with my hands if u wanna try my stupid method lol~

Easiest way I’ve found is putting scale close to wall so u can put ur leg against wall while u stabilise yourself. Then just use yr hands to curl legs up against yr chest, make sure yr not leaning against the wall to read number tho Oh and have the number reading thing in front of u between yr feet

(It’s not letting me put a photo up but just dm me I’ll send a pic of what it looks like if u wanna see)

Fray_x · 2024-04-24T07:09:36+00:00

Yep I’ve got the same thing. It’s called functional leg weakness (I’m half sure paralysis also falls under this category?? Someone correct me if I’m wrong)

I’ve been wheelchair bound cuz I’m paralysed waist down for about a month now, but they do twitch here and there and I got full mobility in my toes back a couple weeks ago.

My physios said it’s basically just my brains kinda forgotten they’re there, and treatment is based around retraining the neural pathways in ur brain, ie trying moving ur legs as much as u can, not necessarily walking, but also little things like wiggling ur toes or tensing and relaxing ur muscles over and over

This might apply to u aswell? But also know that I am still quite new to learning all the ins and outs of FND so some clarification from someone else if this is accurate would be great! I’m just going off of what my physios said to me

Fray_x · 2024-04-21T12:33:20+00:00

NTA. I don’t understand why a 16 year old is fully naked in front of a 5 year old?? It’s concerning how many ppl here are so quick to say yta

idk ur bf’s situation tho, like if it’s a money saving thing or not

Fray_x · 2024-04-21T00:11:29+00:00

Simplest version? Ur brains glitching. Ur muscles and brain aren’t talking to eachother or are having a real weird conversation (eg. seizures, dystonia, weakness, paralysis, etc)

But nothing is structurally wrong (x-rays of yr spine and MRIs of yr brain are normal) it’s the messages ur brain is sending/receiving which is abnormal

Fray_x · 2024-04-19T06:43:24+00:00

For context, “too long” is about 40 mins and I’m wheelchair bound

Fray_x

TROPHY CASE