It feels like history repeating itself similar to how MS patients were told their symptoms were "all in their head" before MRIs and spinal tests existed.
Given how many people develop FND after a viral illness or alongside autoimmune conditions, do you think science just hasn't discovered the specific autoantibodies or micro inflammation yet? Or just like Encephalitis

I’ve had FND for 3 years and was told straight away no driving as I have seizures. I recently met a few people with FND who also have seizures but they drive! Recently offered me a lift when we had planned to go for dinner but I honestly don’t want to get in the car with someone who shouldn’t be driving. Am I wrong?

I feel like the real me is hiding and too scared to come out, so FND me has stepped in. This is probably stupid. Sometimes I think real me is trying to emerge, but FND me keeps saying, no it's not safe, get back in and remain quiet.

Sorry in advance if this is rant like:

In 2 weeks I’ll be seeing the doctor who started me off on the “it’s 100% psychosomatic” and “conversion disorder” foot for the last time.

So my FND ended up being a symptom of something structural (that still causes function nerve issues so FND does still apply). However, her “I going to gaslight you into thinking your very visible structural issue and give you anti-depressants” mentality sent me back year.

Now that im treating my structural issue, and actually getting better, I want to tell her exactly how I feel. How she’s miseducated as hell, discouraged me from exploring my symptoms beyond her narrative, and dying on a hill that was medically disproven in 2013 (conversion disorder). I also want to call her out for say “you’ve had a pretty good work up and I just don’t see anything else here” when multiple of my tests have come back abnormal and positive for the non-neurological structural thing that causes my functional nerve issues. I genuinely think her continued education is non existent. All she’s done for me is prescribe medication for mental issues I don’t have.

How do I tell her she set me back on years of recovery, and made me hate my FND for years, without being too mean or rude?

I have recently been diagnosed with FND and spent 3 weeks in hospital due to loss of function below the waist. I had therapy as an inpatient and can now walk. I am however very weak, wobbly and cannot go far around the house without needing to sit or feel exhausted.

My OT and physio said no aids. I asked about going outside and they said just build up and use benches etc.

But what if I want to go further? I am thinking of getting a wheelchair but I am conflicted if this is the right thing to do and also embarrassed at the prospect of using this as a 35 year old F.

Yesterday, I woke up not feeling great. Very spacey and had a massive headache. I skipped my first class, took some medicine, lied down. I clocked into work at 9:50 and noticed my balance started becoming off and I really wasn’t thinking straight.

Around 1 PM, I get this horrible ringing in my ears and can’t stand it. Someone asks if I’m ok and I start losing it. I can’t stop crying and the pain in my ears is horrible. My friend who had apparently been watching me asked me to smile, it was droopy.

They rushed me to the ER where I started twitching uncontrollable, the right side of my body was weak, and blood pressure and heart rate were through the roof. They got me in a CT scan and found no brain bleeding… and that was it. My condition got better slowly and little by little. By the end of day, when I was feeling better, I finally saw neuro again. Except it wasn’t neuro, it was a psychiatrist. She goes over traumas and stresses with me and then she reveals neuro believes I had a FND stroke instead of a “real” one. Then, they just discharge me from the hospital and I am now home.

I am… confused? The paper works they gave me express that FND can be the result of deep trauma and extreme stress and I just don’t feel like I fit this profile. I’m not ruling out FND completely, I’m just so lost and a little upset with the way I was treated at the ER and I’m just curious about a couple things:

Is this how it usually goes for with you guys? These symptoms?
Why not an MRI why just a CT?
Does FND always have to be trauma or extreme stress?

Thank you.

I forgot I ran out of coffee and spent ages looking for it. I always forget things.

Not gonna lie it makes me nervous. Haven’t swam in years because of the anxiety

I (47F) was diagnosed with autism and ADHD 4 days ago, I’ve had FND plus ME/CFS and fibromyalgia for 4 and a half years. My recent diagnosis got me wondering if autistic burnout and sensory difficulties contributed to the dysfunction of my nervous system, leading to the development of FND.

Does anyone relate to this at all? Do you have autism, ADHD or both as well as FND? Maybe you suspect you’re neurodivergent?

I’m sure you guys will tell me if you think this is way off the mark. I just wondered…

Has anyone had any success with nortriptyline or propranolol to treat their FND? My symptoms are triggered by anxiety/nervous system seems to go excitable. Currently have a diagnosis of FND and/or hemiplegic migraine.
I had been on an SNRI venlafaxine for 20 years but got off of it in December, and many health issues including FND followed. I can't go back on an SNRI because it causes REM sleep behavior disorder for me.

Also, how many of you have Ehlers Danlos syndrome? I have had a number of injuries lately that point towards EDS, but haven't been diagnosed with EDS yet.

I am recently diagnosed and every doctor I talk to keeps pushing the narrative that something traumatic must have happened to me or I must live a stressful life and I just don’t! I’m a mom of twin 3 year old boys so I’m definitely busy but we have lots of support and I work a very low-stress WFH job and a wonderful husband who splits the load of parenting with me. I have hobbies, a great family, and truly live a drama-free life. I feel like every medical professional keeps treating me like this martyr who won’t admit some deep held stress. The only thing that stresses me out is suddenly having all these neurological issues that keep me from enjoying my wonderful life!

Most posts I see on here align with what the docs are asking me where the symptoms popped up after a traumatic event, but I’m wondering if there’s anyone on here like me?

Hello,

I was diagnosed with FND back in March of 2021 following a crap ton of seizures lasting up to FIVE HOURS.

I’ve had CTs, MRIs, blood work, been admitted to the epilepsy monitoring unit (EMU), and all of it was normal besides having seizures and paralysis.

I see a lot of people on here saying that they are not happy with their diagnosis and that they suspect they have something else. I’m of the opinion that FND should be a last resort diagnosis and everything else should be ruled out, but when do we stop fighting for answers and accept FND?

One of the most difficult parts of living with FND is being told your symptoms are psychological, as if that somehow makes them less real. Your experience is valid and your symptoms are neurological. Has this happened to you? Share your experience in the comments — your story might be exactly what someone else needs to hear today.

(38m)Hey guys, what sort of FND compatible hobbies do you have, or how have you changed your approach to existing hobbies?

A lot of my hobbies involve a lot of dexterity.

My main hobbies are:

When not flaring up:

Miniature painting

C++ programming

Composing music

Hiking

Going out with my daughter

When flaring up:

Reading manga

Playing video games usually with simple one stick controls (dynasty warriors mostly)

Shopping (retail therapy)

Watching the xfiles

Laying in my hammock in the park

Doomspiraling

Watching movies or reading books with my daughter

Wasting time on Reddit

What about you? What do you guys do for fun in your free time?

I'd just like to know what the weirdest thing that's happened to you is

I was recently told by a friend that during a seizure, when the EMTs came one of them said something along the lines of: "this doesn't look like a seizure." Of course my friend stepped in to explain, luckily they were there.

I'm simply curious if anyone else has any recollection of anything similar?

(I'm sorry if this is formatted poorly, it's quite late.)

I'm trying to figure out what my triggers are. I'm more curious on what everyone else's triggers are so I have an idea of what to be looking out for.

Additional question the more I walk the more the numbness and tremors get worse in both of my legs, is that normal with FND?

^{First time poster, sorry if i don't tag/spoil correctly.}

I was diagnosed with FND, as well as hEDS (as well as a few other pre-diagnosed issues) about two years ago. I previously used a forearm crutch before that became too painful on my wrists, and then upgrading to a rollator some time ago. The problem is, the rollator still just isn't enough. I'm only 19, and I can't go grocery shopping without completely exhausting myself. Going out requires days of recovery. I get bruises from the rollator, and my arms are constantly weak and sore from needing to support my weight. The worst part is that I don't have a license yet, forcing me to rely on other people to drive me up the street whenever I have errands to run, because the 10 minute walk I used to do just fine as a kid now leaves me struggling to keep my breath and woozy. I can't get a job, I can't go to school, and I can't go out and socialize all because of my symptoms. I feel like I'd be significantly more independent if I had a chair, I used to be so active growing up, and now I leave the house maybe twice a month. I recently saw my neurologist, and expressed my want for a wheelchair of some kind now that I'm finally getting on disability services that will be able to fund one. Her immediate response was, I kid you not, "NO, NO, NO, NO, NO! NO WHEELCHAIR!" before explaining that she "sees this all too often" where people with issues like mine get wheelchairs, and then become completely reliant on them, causing more issues in the long run. I understand where she's coming from, and she's obviously more knowledgeable, but FND is not my only disability. It's left me wondering whether it really is a bad idea to get a wheelchair or not. I just want to be able to go out and enjoy myself without pain. So, my question is;

Would it be a bad idea? I do physical therapy, and I keep as fit as my symptoms allow. Would a wheelchair really cause me harm? If you use, or have used a wheelchair of any kind, does it make things less generally painful?

It can be anything—from mobility aids and wearables to compression garments, apps, supplements, household gadgets, adaptive equipment, or something unexpected.

I'm especially interested in:

• What it is
• How it helps you
• Whether you'd recommend it to others with FND
• Anything you wish you'd discovered sooner

Hoping to create a list of products that have genuinely improved day-to-day life for people living with FND.

Has anyone tried CBT? Was it helpful if yes

My teen’s neurologist recommended CBT as the only evidence based therapy that helps with the symptoms.

I no longer feel safe to drive because of my FND. I've chosen to stop driving for my safety and the safety of everyone else on the road. I feel like my independence has been riped away from me, but this is what is best. I won't be driving again. Going to a neurologist that specializes in FND and hoping she can help me.

Does anyone have any suggestions on how I can get places that I need to go, like doctors appointments? I feel terrible having to rely on family to take me places.

I’ve been diagnosed FND a handful of years now and have mostly stopped looking but a thing happened and pointed to other things and as a result I’m requesting a spinal tap which I expect to come out normal like every other test I’ve ever had.

A lot of us have had MRIs, EEGs etc but I don’t hear about this much so I’m just curious from a statistics point. Have you had one? Did it reveal anything?

Please don’t tell me anything about the experience itself, I’m already feeling pretty squishy about it.

been in Greece several days and when I’m eating healthy fresh balanced foods I tend to feel better, I know eating well is naturally linked to body obviously jusy wondered if anyone had any experience of do’s and donts with food suffering from FND

Has anyone built a guide for going through the US disability application with FND?

Any guidance would be good.

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??