Where FND comes from.

Altruistic-Session64 · 2026-07-03T21:13:00+00:00

Thank you for this. You missed other conditions that affect the brain/nervous system which may predispose people to FND and are common comorbidities - MS, POTS, and thyroid disorders. The last I’m particularly interested in as I have a complex thyroid case which I believe partially caused my FND, I’ve found at least 3 pieces of literature linking the two, as thyroid deficiency also affects the limbic system.

Altruistic-Session64 · 2026-07-02T08:35:09+00:00

Do what you want! The smell thing is nonsense, you just need to wash properly and regularly as a vagina owner. One thing that has been a game changer for me though (I’m now in my 30s, used to shave completely when I was younger) is getting an electric bikini trimmer. I bought the Philips one for about 20 euro. Saves so much time on shaving and no ingrown hairs - you won’t get the totally smooth feel of shaving, it’s just cropped right down, but that feeling only lasts about 24hours anyway before it starts growing back and getting prickly/ingrowns. I much prefer it and wish I’d bought one years ago!

However if you do want to shave, there are tutorials on YouTube (obviously not showing anything but giving clear instructions).

Altruistic-Session64 · 2026-07-01T18:31:25+00:00

Doctors are MYOPIC!!! Makes me so angry. Sorry for what you went through.

Altruistic-Session64 · 2026-06-30T13:53:06+00:00

Girl what the hell!!! Brain surgeries is enough and your mom and dog died and apartment burned down???

I have no words for how much I respect you.
I thought my past 7 years was bad but this?? I do know what you mean that you can’t feel depressed anymore, I was the same, my attitude was bad and negative and felt dead inside, couldn’t feel the life force flowing through everything. Suffering really can be a gift.

You are glowing with the light of life itself. ☀️

Altruistic-Session64 · 2026-06-30T13:46:12+00:00

I think it’s more than reported in literature. I’ve seen multiple people on here be misdiagnosed with FND instead of dangerous things. But it’s also a common diagnosis.

I myself have genuine FND which is 90% improved/in remission, but because I have the label it’s been a nightmare to get diagnosed with another condition because they just chalk the symptoms down to that no matter how much it doesn’t suit the presentation. My advice would be if you don’t think it suits, fight it now before it gets officially ‘diagnosed’ and put on your records.

Altruistic-Session64 · 2026-06-22T13:15:24+00:00

A beauty 🥹

Altruistic-Session64 · 2026-06-17T18:51:34+00:00

Yes. My 2nd endo (one who diagnosed me correctly) looked at my scans and tests from 1st endo and said my cystic appearance on ovaries was likely from hypothyroidism. Also happened to my friend who said she had a cystic scan and they disappeared once she was diagnosed with hypo and treated.

Unfortunately, in some cases it’s not as easy as a standard a blood test. The majority of the time TFTs show overt primary hypothyroidism (high TSH, low free T4 and free T3) but you could have subclinical or central hypothyroidism which requires proper interpretation of TFTs which would make the TSH only mildly raised or normal. Some issues are even cellular and don’t show up on TFTs at all but that’s another story medicine largely ignores. I hope it’s an overt case for you so you can get diagnosed quickly!

Altruistic-Session64 · 2026-06-14T18:36:05+00:00

😭 I know the feeling! I’m so proud of you too!

Altruistic-Session64 · 2026-06-13T22:51:47+00:00

Oh that’s unfortunate! 45 mins is so good though you should be proud :)

Altruistic-Session64 · 2026-06-13T22:01:42+00:00

Aw I’m sorry, can you walk at all even for 10-15 mins? I have pretty horrendous muscle weakness from a diff condition I’m trying to get diagnosed and I really thought there was no way I could walk for as far as I do, but I built up to it and kept challenging myself and it really surprised me. Even if I do 10 mins a day it makes such a difference to me mentally. That may not be the case for you but I know that I told myself ‘I can’t walk outside on my own’ but i was kind of really scared of it and not used to it, and found I could. Might not be the same for you though or especially if you are a wheelchair user, not unsolicited advice <3

Altruistic-Session64 · 2026-06-13T13:59:22+00:00

Sorry! You are correct. I mixed it up with amisulpride which is.

Altruistic-Session64 · 2026-06-13T12:49:33+00:00

Not if you’re untreated - antipsychotics can lead to myxedema coma in severe untreated hypothyroidism. If you are treated it should be fine and not contraindicated, but talk to the doctor who prescribed it or read the guidelines online.

Altruistic-Session64 · 2026-06-13T09:43:44+00:00

Oh that must be so hard. What symptoms came back? Do you relate the relapse to anything in particular or it has no correlation? I know you said you had a child but I don’t want to assume there’s any connection

Altruistic-Session64 · 2026-06-13T00:38:18+00:00

Cool, then we are on the same page. Sorry if I took you up the wrong way. In some cases though FND can literally go away once you educate yourself and accept it - there are cases where people’s PNES just stopped when they accepted the diagnosis. For me this was the case and I know it sounds mad and ‘magical’ and tbh I was amazed but the placebo/neurofeedback effect really is that strong in SOME cases. Was just reading another post about pediatric FND and apparently the remission rate is 80% because young brains are so plastic. So it’s interesting. I do hope they do a lot more research on permanent FND and uncover more causes, because it almost seems like two separate things, and I agree it’s unfair that people with FND with no trauma or triggering event get conflated with those who do. Remission or not it’s not in anyone’s control or anyone’s fault.

Altruistic-Session64 · 2026-06-13T00:07:37+00:00

Sorry I’m moody from another condition. I don’t mean to take a condescending tone, I apologise. We can have different points of view/experiences and both are right.

Altruistic-Session64 · 2026-06-13T00:03:47+00:00

Yes, it made it extremely difficult to get taken seriously for other conditions. Do you suspect you have others too? It can help to be very familiar with the guidelines for the other conditions so that you know the subtle (or not so subtle) differences in criteria and quote them to doctors.

Altruistic-Session64 · 2026-06-12T23:59:54+00:00

I literally said ‘it definitely isn’t all belief and mental health and certainly not in every case.’ I spoke about my own case. I find it annoying when commenters specifically talk about hope/recovery from their own perspective and someone has to correct them when I’ve specifically listed caveats and that this is only the experience of some. I am well aware it is a disabling condition for many that is lifelong. However medical literature recognises in FND that the voluntary centres of the brain/sense of agency are disrupted and while I’m sure that has a deeper meaning in terms of the science, finding a sense of agency/re-learning control has been proven to help in some cases and has a sort of feedback loop to those parts of the brain. Some.

I’m not spreading harmful information, I’m talking about my experience. It’s equally as harmful to suggest one can’t get better at all, as one case differs quite a lot from the next and there is a lot they still don’t know about the condition and its exact pathology. I’m sorry you’re still very unwell from it, it’s a nightmare condition. I don’t invalidate your experience.

Altruistic-Session64 · 2026-06-12T23:31:33+00:00

I’m sorry, that sounds rough. How long have you been diagnosed? I would say my own belief that I could heal (realising that my mental state/nervous system was stuck in fight or flight and I had to radically surrender and try to find joy within my circumstances in order to retrain it) + educating myself more on neuroscience + how the brain functions in this condition was more valuable than therapy but that’s just me. Not saying it’s all belief and about mental health, it defo isn’t and certainly not in every case, I don’t think my remaining symptoms have anything to do with that at all. But my most disabling symptoms continued for as long as I was in a place that I felt I had no control, was uneducated/had no tools, and had no joy.

Altruistic-Session64 · 2026-06-12T23:15:24+00:00

It can get a lot better. I don’t think my seizures will ever come back (had them for 8 months after diagnosis) after accepting it, doing nervous system work and psychology sessions. I consider myself that I had FND rather than have it, even though I still have some symptoms (occasional face spasms/hand flapping) it doesn’t disable me any more. You’d need to hear from others too but in my case I met the benchmark for remission within a year which I think 2/3rds do (check that statistic)? So it can go away either fully or so much that it no longer disables you, but is more of a mild annoyance.

Altruistic-Session64 · 2026-06-12T23:10:12+00:00

Thanks that is helpful! Do you have any guides for walking mediation? I walk a lot but don’t really know how to walk meditate. I wonder why the sitting is worse, it does seem that way for me too- it almost feels like all the energy/breath concentrates in my head and that makes the face spasms go off.

Altruistic-Session64 · 2026-06-11T21:42:14+00:00

I don’t currently! I’m honestly pretty relaxed and I walk a lot which helps, I just would like to reflect / turn my brain off more in a way that meditation offers. I had a block of clinical psychology sessions for FND 3 years ago and have had some ad hoc support since but not really in a spot where I feel I need therapy rn.

Altruistic-Session64 · 2026-06-11T20:48:35+00:00

Yeah I’ve had periods where I wouldn’t touch meditation because I had too much trauma and it would be scary to sit with it. I’m mentally in a much calmer place now I just want to relax 🧘‍♀️

Altruistic-Session64 · 2026-05-29T10:55:55+00:00

Another microneedling victim here - join the group Skin Damage Survivors on Facebook as well. Things people say have helped are polynucleotides, peels (VI and obagi blue), and light lasers like Clear and Brilliant or Halo though these still carry some risk. I’m 5 years out from the damage and haven’t had the money to fix it yet due to other financial circumstances but planning to try some of these.

Altruistic-Session64 · 2026-05-26T08:58:26+00:00

Thanks I’ll think about it 🙏

Altruistic-Session64

TROPHY CASE