r/FND

I honestly don’t understand how people here manage to accept a life like this. I also have PSSD, a condition where sexual side effects can persist long after stopping an antidepressant. So I can’t take medication because I’m afraid of making that worse as well.
Yet on the PSSD subreddit, they have funding for research, including a study that is currently underway. Here, we have basically nothing. By far, this is the most defeatist and conformist community I’ve found on Reddit, and it really frustrates me.
I’m doing physical therapy and CBT, and my biggest problems are with my gait and legs. I can still walk, but I spend 24 hours a day terrified that I’ll eventually lose that ability.
I hate the kind of treatment we have here. In Brazil, there is basically only one physical therapist who claims to specialize in FND. She calls herself a mental health physical therapist, but her approach is heavily influenced by psychoanalysis. She gives you these strange body-awareness exercises mixed with this frustrating emphasis on acceptance. She doesn’t really give you any hope or expectation of recovery, and it feels like you’re simply being taught to live with the disorder.
My question is: how do you guys manage to accept this kind of life? I would never accept having to use a cane or a wheelchair. Never.
I’ve already written a farewell letter, and I don’t know how much longer I can keep going like this.

Hello everyone,
I’m curious to know if any of you experience a “Lhermitte’s sign” with FND.
An electric shock sensation/pain running along the spine that radiates into the legs (or not), occurring consistently and reproducibly every time the neck is bent forward?
Thank you for your responses.

Just diagnosed with FND, and all I've been given is a website, and I barely understand what any of it means ;-;

I have been diagnosed with FND for the past month. I have been looking back at the symptoms I used to have in the past that may have been a cure that I had FND a couple of years before the diagnosis. I have always had issues with falling asleep and staying asleep for 12 years. I have ran out of medicine to try to help with sleep. I have a somewhat good medicine routine now. I'm on clonidine 0.3mg and Ativan 1mg. I have been on different SSRI paroxetine, Prozac, and duloxtine.

But anyways, I have vivid dreams almost every night. And I sometimes wake up in the middle of the night and see a cat or a person at the end of my bed. I see it there for up to a minute then it goes away. I'm fully aware of what is going on. Sometimes it will talk to me and I respond thinking it's real but the thing just vanishes into thin air and doesn't walk away. I do get sleep paralysis with heavy stress and I do have some trauma surrounding sleep.

It kinda started when I started taking the clonidine I was going through more stress at the time starting the medicine, but my doctors has ruled out that the medicine is causing it. I have done an EEG which was normal. I have done a sleep study as well and the results of that was I work up to many times throughout the night ( I woke up 22 times).

Has anyone else had this issue? What did you do to help the symptom?

Hi ❤️ anyone can help or relate? Please no catastrophic comments, I’ve already had a lot of neuro testing and I’m looking for similar experiences and advice.

- Random memories/dream memories: 50–100 random memories or fragments of dreams can pop into my mind throughout the day. Sometimes triggered by a smell/color, but often completely random. Some out of nowhere. The more I think about it the more I have. Also if I got one memory while I was brushing my teeth, everytime I brush my teeth I have the same memory popping. So I don’t think it’s focal or electric.
- Music/earworms: Random songs pop into my head, sometimes songs I haven’t heard in years. My brain can also create melodies that stay as earworms.
- Sleep-related experiences: During transitions between sleep and wakefulness, I’ve experienced visual flashes, voices/sounds and smells. The smell is always something that I have been smelling the day before !! Like lemon for example.

Context: I’ve been taking Lexapro (escitalopram) for 2.5 years for very strong anxiety symptoms. 7 months ago, I started tapering very slowly. I developed chronic DPDR (since the first day I decreased the dosage) followed by these symptoms. I’m back at 10mg now.

I know a lot about focal/temporal lobe epilepsy. I don’t have major episodes and my neuros told me it was fonctionnal.

I’ve had not 1, not 2, not 3, not 4, 5 EEGs, including 3 × 24-hour video EEGs. I experienced some of these symptoms during the recordings, but everything was normal, with no epileptiform activity or abnormal background activity.
I’ve seen 5 neurologists, and all think this is psychological/sleep-related rather than epilepsy.

I still have doubts. My neuro said that the combination of developing both epilepsy and hypnagogic/hypnopompic experiences in the same months would be unusual.

Has anyone experienced something similar? Especially random childhood memories, dream memories, random songs + these experiences during sleep transitions?

Even if it were focal awareness epilepsy, I know many people with it who live completely normal lives with treatment and don’t let it stop them from enjoying life.

I’m looking for similar experiences and positive/practical advice ❤️ I think I already did all the testing I could including 2 MRI. Now I am just thinking about reducing or not lexapro.

So my symptoms have been escalating rather aggressively. I feel high all the time. Like physically. In my body. It’s like a buzzing energy in my stomach and back. And I say long sentences I don’t mean and do things I can’t control. Has anyone ever experienced this? Especially the high feeling I’m concerned

Does anyone experience full body shaking (almost like a seizure) but conscious in a way? Lots of crying, babbling and somewhat making sense when speaking? Words are clear but the context of the words isn’t always relevant. Mood swings, very weepy and confused. Doctors are saying they’re not seizures but there is NO WAY this is a panic attack??

What are the best ways to exercise with FND? I hear swimming is good? Maybe?

Hi everyone I have a new neurology appointment with a new doctor on the 27 of this month. 3 months ago I had a twitch that started in my thumb that lasted 4 hours and left, few days later it happened again, a few days after that I had a full body twitching at night that lasted 8 hours. This caused me to see a neurologist since my only symptom was twitching which went back to only my thumb they thought bfs. I had a clean emg, eeg, and brain mri so the doctor again and explained I had what I felt was muscle weakness in my arms and very quick muscle fatigue. They tested some strength and reflex stuff but ultimately said its bfs but they did more blood work to test MG, which came back fine. My arms issue lasted weeks and I finally went to a pcp who said try pt for a stiff neck/shoulders.

Today I had the pt appointment mentioned the weakness issues and he had my hold a 8 pound weight straight out and my arm was shaking not necessarily a fnd issue but I then did a grip strength test 3 times in a row and he didn't tell me the results. This got me thinking the muscle weakness was real despite a clean emg which led me to FND. So im wondering has anyone thought they had bfs only to figure out it was fnd? My hands and feet are always cold but there is no change in color my sleeping has been worse can't fall asleep and even if I do I wake up 6-8 times. Even with trazodone I had bad sleep. Everything im seeing leads me here. I know FND has a very wide net of issues but I was hoping to get some input before this new neurology appointment with a new doctor. I will not be telling him I think it is fnd but instead telling everything from the start and seeing if he also believes its bfs. I just can't figure out a reason for this tension and fatigue in my neck shoulders and arms that lasted for almost 2 months. Thank you.

Hey, this is my first post here as said by the title, my diagnosis was like 1 and half years ago but I had this when I was 16/17 now nearly 20 so around 3 years I had this for, causing me to miss my last year of school from constant flare ups and seen many doctors. I have no medication or anything just been to recommended treatment after recommended treatment, nothing has changed. I left high school early essentially and have never moved pasted that because i can't get past this and now anxiety causes flare ups that sets off a chain reaction around my body, i try to get better but it all feels for nothing. I want to give up and rot away. I want to fade away. I am ruled by my own mind and stuck.

hey i’m a 17 years old and really struggling to help my mum with her health condition! she has three conditions that all affect her body and brain. the miswiring in her brain causes her to have over 200 symptoms for all three conditions and was wondering if anyone knows any support she could get as we are struggling to find some atm. the NHS emergency surgery and GP practice are not being helpful and she is being judged for her seizures while in A&E constantly being laughed at or being told she cant get any help such as MRI scans or to see a specialist! if anyone knows what i could do to help her or anyone who could help her please let me know.
Thank you!

Hi everyone.

My wife is sufering with FND and now its becoming a major issue.

Her seizures started last year again after not having them for some time and they went to one a day to two and more.

She cant walk now as her legs are weak.

She also have pcos

She was on different medications for depresion and anxiety and now the doctor put her on lithium.

I am trying my best to cope with situation and to give support but i am becoming desperate.

Can people who are going tru same situation have any advice?

I told her many times that OT,Emdr, and psyhytrhrist are must thing to do but for now she is only talking with her psyhytrist.

Im trying everything in my power to lift her and help her in any way possible but sometimes i do not see the light of end of the tunnel.

Have anyone tried the tms therapy with fnd?

Did it help if you did?

Any reccomndation that help you in your recovery would be helpful for me to know.

Thank you

Hi

I’ve been refered here (UK) after my psychiatrist told me nothing could improve my symptoms- so not sure why I’ve been referred tbh.

I don’t have typical (Sorry I know there’s really no such thing but I don’t have seizures or movement problem) FND and apparently this place does a lot of physio etc which wont help me.

Mibe affects my digestive system and I have to have a very limited special diet which I doubt they can accommodate.

I am baffled at what theyf can do for me - I’ve been over my traumatic childhood in therapy many times and they can’t treat the autism out of me. Plus the useless psych ( who after reliving my trauma for 4 separate professionals with no help or therapy offered said “but didn’t you find it helpful ?” - no I damn well did not) said nothing can help me so maybe it’s just about learning to live with the terror and trauma its caused.

Im on a fourth - yes now a fourth- wait list for therapy but its only CBT which Won’t help as my fear and distress are not from disordered thinking but from something real - the threat from my illness which is genuinely dangerous and life threatening unlike most FND ( another battle I keep having with the ignorant medics who say “oh but it’s not life threatening“ - mine is as if I don’t treat it and it went on long enough I would die of starvation as it means i can’t eat).

And I have to pay for all my treatment- hundreds a month which I can’t get the nhs to take over although I am refered to a Gastro but not until October!

Question is basically the title? I'd like to hear from those who are young adults or how someone navigated through their marriage. I don't know how to even start when I barely have the answers myself to the cause of my diagnosis or why I have specific symptoms. It feels really unmotivating and I wonder if it is best to just not date at all. Male in late 20s.

I see on here a lot (and have also been told in person by doctors and therapists) that FND is caused or triggered by psychological conditions and trauma.

I have some mental health conditions, but I also have a lot of physical health conditions, and my FND symptoms seem far more tied to my physical rather than mental state.

(I have tourettes, POTS, and a traumatic brain injury. I also have diagnosed OCD and ADHD and suspected autism.)

My most common symptom is what I call "body shutdowns" where I lose tone in my body, am unable to move, will stare off into the distance with nystagmus, and I will have a hard time thinking or processing what people are saying or what's going on around me.

They almost always happen after a long day of either suppressing my tics, walking around and being too hot, not eating enough, or a significant amount of cognitive or sensory stimulation (commonly a big trigger for brain injuries). I also pop back up pretty quickly with electrolytes and sugar.

It has never been (at least in recent memory) tied to anxiety or my OCD. It hasn't gotten consistently better or worse with stress (sometimes higher stress increases the duration and frequency, sometimes it decreases it).

Has anyone else had this experience of FND almost exclusively caused by physical health triggers?

Me again, the ED doc attempting to learn more regarding FND.

Where do you all stand / think regarding the ED need for objective testing in the ED.

What I mean by this is objectively testing and proving patient symptoms, examples:

- patient states unable to swallow food so we give a trial of food to watch for obvious swallowing issues/gagging etc.

- patient states cannot walk so we get them to stand and mobilise.

- patient states pain so we trial analgesia and monitor response.

The reason I ask is I've had a patient recently complain of nausea and vomiting but no vomiting seen in the ED and refusing to try eating / oral fluids entirely to the point of mild hypoglycaemia. When I have had a strong / difficult discussion we finally came to agreement to try oral glucose which they tolerated well and sugars stabilised but then refused any thing further and even refused IV hydration / port access unless we gave them what they wanted.

There was no objective / clinical need to provide said treatment as objectively we had proven the alternative therapy worked but patient subjectively was stating extreme nausea.

I am well aware a patient has a right to decline treatment and respect it and would monitor until a deterioration prompted a need to intervene.

But as a clinician I cannot justify providing or escalating treatment based off subjective complaints.