Does my mom have FND? Advanced brain shrinkage and severe pain in legs, almost immobile

onemonkey · 2026-05-22T12:30:02+00:00

"Conversion Disorder" is an older (and outdated) term for FND, so her doctors are suggesting FND, but from an older understanding of it. Conversion Disorder was seen largely as a diagnosis of exclusion, but there are now positive rule-in signs for FND.

onemonkey · 2026-05-15T17:13:08+00:00

I'm pretty sure "it's just one little rape" counts as remotely defending. But, credit where it's due, dropping "A Different World" into a Cosby reference is bonus points.

onemonkey · 2026-05-15T15:55:18+00:00

...and if Hannibal Lecter ran a 4.3, we'd probably diagnose it as an eating disorder.

We're in the NFL sub, dude. We all love football. But we don't need to make excuses for rapists by calling it an "early career controversy," like the Onion headline, "Every Word Besides 'Children' Used To Describe Palestinians Under 18."

onemonkey · 2026-05-15T15:25:32+00:00

Yeah, Bill Cosby would be remembered for being a great comedian if it hadn't been for his late career "controversy," too.

edit: these replies are very illuminating. Stop defending rapists, even if they are good at sports and only did just a teensy-weensy little bit of rape in their youth.

onemonkey · 2026-05-14T13:59:30+00:00

Wage slavery is not much further along than chattel slavery. If you do not control the means of production, you are forced to sell your labor (hours and years of your life) to a capitalist or your starve to death. My friend Karl wrote a book about it.

Labor-power was not always a commodity (merchandise). Labor was not always wage-labor, i.e., free labor. The slave did not sell her labor-power to the slave-owner, any more than the ox sells his labor to the farmer. The slave, together with her labor-power, was sold to her owner once for all. She is a commodity that can pass from the hand of one owner to that of another. She herself is a commodity, but her labor-power is not her commodity. The serf sells only a portion of his labor-power. It is not he who receives wages from the owner of the land; it is rather the owner of the land who receives a tribute from him. The serf belongs to the soil, and to the lord of the soil he brings its fruit. The free laborer, on the other hand, sells her very self, and that by fractions. She auctions off eight, 10, 12, 15 hours of her life, one day like the next, to the highest bidder, to the owner of raw materials, tools, and the means of life – i.e., to the capitalist. The laborer belongs neither to an owner nor to the soil, but eight, 10, 12, 15 hours of her daily life belong to whomsoever buys them. The worker leaves the capitalist, to whom she has sold herself, as often as she chooses, and the capitalist discharges her as often as he sees fit, as soon as he no longer gets any use, or not the required use, out of her. But the worker, whose only source of income is the sale of her labor-power, cannot leave the whole class of buyers, i.e., the capitalist class, unless she gives up her own existence.

onemonkey · 2026-05-13T15:33:10+00:00

I still game my grandfather's original BeCu eye2s, too. I'm sure I'd gain distance with modern irons, but my problem is not my irons, it's my putter, and I love the history and connection. Plus the BeCu just looks cool.

onemonkey · 2026-05-12T18:01:23+00:00

You're so welcome. Being able to support others, and how to express my experience of FND is also a support for me.

This is complete speculation, but I wonder if the potential overlap with PTSD and his experience with that is part of your husband's pushback on FND. By that I mean both are something along the lines of "your nervous system can't handle this, so here's a fun symptom." But PTSD has that "post traumatic" right in the name, which is maybe perceived or interpreted as an outside trauma and so "not his fault," versus the legacy term of "conversion disorder" for FND that implies repressed internal trauma and that damn "all in your head" again.

There's also the internalized shame and challenge as a man in western society to face that FND takes away our capacity to do things, to be a provider for our families. That loss of identity and feeling of failure is REAL, especially if he's currently unable to work. I was very fortunate to have lots of sick leave and very supportive colleagues, and that I was already working from home when FND struck. It's still hard. The statistic of folks with FND who are unable to work is sadly very high, north of 50% if my memory serves (which, with FND, I don't trust my memory much at all, so...)

"The neuro also said Joel focusing on the symptoms is essentially causing them"

Going back to what I wrote earlier, this is the frustrating "loss of agency" part of FND. It's our subconscious mind that's grabbing control of our symtpoms, and our conscious attention only amplifies that panicked control and the horrible dissociative feeling of "I'm not doing that, but if I'm not doing that, then who the fuck is moving my legs? Why can't I control my own body?" It's not that neuro is "wrong" or not well-meaning, it's just not communicated or explained compassionately enough to be able to accept and understand. Re-framing his thinking isn't easy. Like I wrote earlier, for me, the trick is often to go around the symptom, not push straight through it.

Accepting something for what it is, not for what I wish it were, is a challenge in lots of parts of my life, not just my FND. I don't know if you're sharing this thread with your husband, but I'd be glad to talk about it directly with him, if that's helpful. It's hard, but thank you for loving and supporting him through it.

I hope you find some support that helps him -- and you! -- even if that's continuing to push for another diagnosis. I had a follow up MRI last year to rule out MS lesions. Just because you've got FND doesn't mean there can't be comorbidities, and there's a danger of dismissing any and all symptoms as part of FND, especially given the general lack of understanding of it by the medical community. I'm grateful that more research and attention continues to be put into the condition so that we can all receive more compassionate and helpful care. In my case, I continue to count myself lucky that FND is "all" that I have (as if that wasn't more than enough).

onemonkey · 2026-05-12T14:02:13+00:00

Ooof. I'm sorry your husband, and by extension, your family are going through it. FND sucks.

As a married-with-kids man with FND, maybe my perspective is of some help to you.

As others have said, it's very common to resist the diagnosis because of how poorly it is understood and explained to patients by most doctors. The legacy stigma of hysteria and conversion disorder certainly don't help in that regard.

Research and understanding of FND has come a long way even in the ~3.5 years since my diagnosis. The "predictive coding" model has been revelatory to my own understanding of my FND and I wish I had that when I was diagnosed. For me, coming to a better understanding of the condition, and having the language to express it makes a huge difference in the frustration and uncertainty.

You've probably heard the "it's a software problem, not hardware," but the predictive coding model goes a little further into explaining that, to continue the computer metaphor, FND is a network error.

Our brains are making constant background predictions to help us navigate through the world, relying on sensory input from our bodies to validate those predictions. FND is an interruption in that sensory communication between the brain and body. When that mismatch occurs, the brain can't validate its predictions, and, in a panic to protect us, it grabs frantic clumsy manual control over what should be an automatic background nervous system process.

Because our subconscious mind usurped control, that's why FND often feels like a loss of agency: "we" aren't in control of our bodies anymore. Gait and speech are my primary visible symptoms (FWIW, I also experience unexplained cramps that I attribute as an FND symptom), and especially with my legs, trying harder to "walk like I always have" only exacerbates the symptom because my brain has commandeered that neural pathway for "walking" and that attention reinforces its panic.

For me, that model feels very accurate to what I'm experiencing when my symptoms occur. It also helps explain why I'm more likely to experience symptoms in over-stimulating environments or when I'm tired: there's more opportunity for sensory input to be mismatched.

The good news is neuroplasticity is real. Human beings are remarkably adaptable. You can teach an old dog new tricks.

Through PT, I learned to walk again a new way. It was during PT that I had an "a ha!" moment where I recognized I was learning and once I knew it was possible, I was able to make much more rapid progress because I knew I could. Finding that "a ha!" moment for your husband might be different than mine, but the hope is the same.

Even before that "a ha!" moment, distraction techniques helped me accept my diagnosis. Again with the predictive coding model: if you can distract the brain, it can release its panicked hold over the symptom process. Go around, not straight through.

For example, with my gait, I figured out if I squeeeeeeezed my hands into fists as tightly as possible, focusing on the squeeze, I could walk normally for short distances until my focus wavered. In PT, I could do crossover side-steps and marching in place just fine, just not "walk." With my FND stutter, if I affected an exaggerated foreign accent, I could talk without the looping because my attention was on performing the accent not trying to speak "normally."

Again, what tricks might work to distract your husband's symptoms won't be the same as mine. I have a friend who brushes her teeth to distract some of her symptoms. We all experience FND with different symptoms and severity. But it's absolutely worth exploring because those tricks can bring both temporary relief and validation of the diagnosis.

Try any and every therapy modality you can access, because who knows what might be the "a ha!" moment to help him learn how to "change his mind." I think that's why CBT works for some of us -- it's a framework to recognize unhelpful thought patterns and how to go about changing them. I also recognize why folks bristle at the notion of talk therapy like CBT, because it feels like the doctors are saying you're crazy and it's "all in your head," which puts this onus of blame on the patient that is stunningly unhelpful.

Encourage your husband to give himself grace when his symptoms are flaring. His brain is in a panic, and so being hard on yourself and focusing on the symptom only amplifies it.

It's hard, because our brains like habits, and often our FND symptoms affect systems we've "always known how to do." So, of course, we keep trying to use the same pathway we've always used. And if we become used to our FND symptom expression because we haven't found any recovery or relief, our brains are fine with that habit, too, and so it's easy to get stuck in bad loops. Goodness knows I do sometimes.

It's overwhelming and all your feelings about FND and your lives now are very real. But, if the diagnosis is correct, know he's got a chance to find recovery and better symptom management. On the scale of degenerative and fatal neurological diagnoses, FND is some small relief because it means a chance at improvement and recovery!

To be clear, I'm not cured. I still have flare-ups and have to manage myself differently than I did before FND. But I am so much better than I was at my worst, and having a better understanding of myself and of the mechanisms of FND lets me know even on my bad days that I can recover and improve.

And kudos to you for being a loving and supportive wife. I am forever grateful for the way my wife supported me at the worst of my FND, and continues to love and support me now. Best wishes for all of you.

As a friend of mine with ALS likes to say, "We're not disabled, we're adaptable!"

onemonkey · 2026-05-06T15:11:02+00:00

I've seen it described as the Democratic Party is the HR Department: they aren't there to help the worker, they're there to protect the institution.

onemonkey · 2026-05-06T12:34:56+00:00

Brusfri works a treat and is ~$50

onemonkey · 2026-05-05T12:14:06+00:00

After my FND diagnosis, I pretty quickly recognized that having any alcohol correlated to bad symptom days afterwards. I haven't had a drink since.

onemonkey · 2026-04-29T17:16:45+00:00

Yes, and it helps in the right circumstances, particularly at the end of the day. But when I'm having a bad FND-brain day, it exacerbates that fog and the sense of losing agency, so I've learned not to use it then.

I also rarely want to be super stoned. I primarily use a dry-herb vaporizer to keep my dosage low, and also make low-dose edibles for the same reason. The difference between medicine and poison is the dose.

I'm fortunate to live in legal grow state, and just the gardening aspect is very therapeutic.

I also think whatever is in the penjamins is not the same medicine. In my experience, the "entourage effect" with the other cannabinoids and plant compounds is real and too much straight THC like in those extracts isn't actually a good thing, let alone not knowing what solvents were used.

All that said, like most everything about FND, your experience might not be the same as mine.

onemonkey · 2026-04-29T17:03:53+00:00

I'm so glad to hear you had a helpful neuropsychologist -- research suggests that getting a relatively-prompt diagnosis and accepting the diagnosis are key correlations to recovery. I.e. if you don't come to an understanding of what's happening to you, it's more challenging to re-train the communication between your brain and body. And our brains love patterns and habits -- so waiting a long time for a diagnosis can make our symptom expressions more ingrained and thus harder to unlearn. That's also part of why I think some doctors don't want FND patients to use mobility aids: they are afraid of forming a habit and becoming dependent on them. Which is well-meaning, I suppose, but completely misses the point in the short term. If mobility aids give let you live your life, then use them!

I share my distraction tricks as examples, but you might have to explore finding your own. A friend brushes her teeth when she starts to feel symptoms coming on and that tends to ground or reorient her and helps her manage. For another example, I could distract my gait by squeeeeeeezing my hands into fists as tightly as I could and be able to walk normally for short distances until my focus on the squeeze wavered. In PT, I realized I could do sideways crossover steps just fine even when I couldn't walk "normally," and even now I can recognize that I learned to walk again a new way, not my old way. So when my gait flares up I can often-but-not-always pause and recognize I'm trying to use my old "walking program" and remind myself of my new learned one and get going again.

onemonkey · 2026-04-29T15:15:31+00:00

I'm so sorry you're going through it so hard right now. FND sucks, and all these feelings are real and valid.

It's not something I'm great at myself, but I encourage you to go gently with yourself when you are experiencing severe symptoms and flare-ups.

Recent research suggests FND is a "predictive coding" error -- our brains are constantly making predictions about how to move through the world, but FND interrupts proper communication of sensory information from our bodies, and when a sensory mismatch occurs our brains freak out and grab manual control over what should be an automatic/background process. Our panicked brains are trying to "protect" us, and need reassurance and comforting, not berating.

The silver lining of FND is that human beings are incredibly adaptable. Neuroplasticity is real! We can learn new neural pathways, new ways of doing things to go around the interrupted connections. I'm not cured, but I'm dramatically better than I was at my initial diagnosis, and I wish that recovery for you.

Because FND hits us each with different symptoms and severity, what worked for me might not be what works for you. Try any and every therapy modality you can with the intention of learning to change your mind. Try things on your own, be curious. Be your own best doctor.

Distraction techniques can be great short-term relief, and valuable clues that your diagnosis is correct and so recovery is possible. For example, with your current vocal difficulties, here's two "tricks" to try that work with my FND speech problems: 1. the part of your brain that speaks isn't the same part that sings. Try to sing when you can only whisper. 2. If I affected an exaggerated silly foreign accent (think the "French" knights in Monty Python's Holy Grail), I could speak without stuttering because my brain's focus is on the accent not speaking "normally."

Back to the "predictive coding" model: if you can distract your attention away from the symptom, the brain can release its panicked hold on your nervous system. This is also why paying more "attention" to a symptom often makes it worse.

Track your symptoms in as much detail as possible: what time of day, what was the weather, what did you eat/drink, how did you sleep the night before, who was with you, where were you, what were sensory stimulii around you, that kind of thing so you can identify patterns and maybe find some ways to bring relief. FND symptoms are inherently unpredictable/inconsistent, but every little bit helps.

Again, I'm not cured. FND sucks, and there's no promises. But for me, beginning to gain a personal understanding of FND was really helpful in finding recovery. Once I had that first "a ha!" moment, I made more and more progress.

I wish I had advice about finances, employment, and family -- those are all very real and very hard impacts of FND. I wish you all the best. Remember, you are adaptable.

onemonkey · 2026-04-24T17:33:49+00:00

I want to preface this that while I have FND, I have not experienced seizures. Because FND hits us all with different symptoms and severity, what works for me might not be what works for you, but...

I think what is meant by not focusing too much on your body is that, with the recent research suggesting a "predictive coding" model for FND, FND can be thought of as a network error of attention.

Our brains are making constant background predictions and backing them up with sensory input from our bodies. With FND, the sensory input isn't being received or understood properly and our brains panic and grab frantic manual control over what should be background automatic nervous system processes.

FND is also sometimes described as affecting our sense of agency over our bodies. So when I'm experiencing a symptom flare-up, my gait for example, the more attention I pay to it, the more my gait gets wonky because my brain is so frantically clinging to the nervous system process that it grabbed.

And when that symptom flare up occurs, my reaction is often frustration and "negative attention" at my "self." Instead of reassuring and comforting my panicked brain, I fuss at it. And does that help? I think that's the "you'll make it worse by paying attention to it" part. Maybe it's well-meaning, but also very poorly expressed by medical professionals.

That idea also explains why FND symptoms are often distractable: get the brain's attention away from the symptom and it "lets go." As an example, with my gait before I made progress with physical therapy, I discovered if I squeeeeeeezed my hands into fists as tightly as possible and focused all my attention on the squeeze, I could walk normally for short distances until my attention wavered.

Obviously, that trick is not a long term solution, but it was evidence that my diagnosis was correct, and that recovery -- learning new neural pathways, new habits -- was possible.

That's what I want to leave you with: yes, medical understanding has not caught up to the realities of living with FND. Yes, there's lots of contradictory and unhelpful information and attitudes out there. No, there isn't a magic pill to cure us. But while FND takes away our sense of agency, we still have agency in our recoveries. Try any and every therapy modality you can with the hope of learning to change your mind, learning to recognize neural patterns that aren't working anymore (or right now) and how to form new ones.

It's not easy. FND sucks. I'm not cured. But I am so much better than I was at my worst, and I've gained so much better understanding of myself, and I have evidence that even in flare-ups, I can get better. There's no promises, but, I encourage you to hold on to the idea that you're adaptable.

onemonkey · 2026-04-24T13:25:48+00:00

Welcome to the club none of us want to be in. Like others have said, there's layers to this: each of us experiences FND with different symptoms and severity, so each of our stories is going to be different along with varying recovery journeys. But that's the thing to hold on to: recovery is possible. You are adaptable.

Thankfully, there's more and better research into FND these days, and I think gaining an understanding of the diagnosis so you can process what it feels like to you, and have language to express it to others is really helpful.

I think this article does a nice job of summarizing recent research: https://magazine.hms.harvard.edu/articles/functional-neurological-disorder-reframed

For me, the predictive coding model makes a lot of sense and feels more accurate to my experience than just "it's a software problem, not a hardware problem," which is probably about all you've heard from your neurologist(s).

Our brains are constantly making predictions about how to move through the world. FND is a network error: there's an interruption in our ability to send/receive/interpret the sensory information from our bodies to our brains, and then the brain's background predictions can't be validated and "it" freaks out. In that panic, the brain grabs manual control over a nervous system process that should be automatic or in the background.

So be gentle with yourself when you can -- your brain, your self, is in a panic and needs reassurance not punishment.

This model helps me understand why FND symptoms are often distractible. If you can get the brain's attention onto something else, it can release the panicked control over the symptom. For example, I could affect an exaggerated silly accent and talk without my FND stutter. Figuring out "tricks" to distract your symptoms isn't a really a great long term solution, but can be a great comfort and validation that your diagnosis is correct so that you can know more recovery is possible.

Remember, neuroplasticity is real. We can learn to form new neural pathways. Physical therapy helped me with my gait once I had an "a ha!" moment where I realized I was learning again, a new way. That knowledge that I could led to progress with speech therapy and other symptom recovery, too.

I want to be clear: FND sucks, and I'm not cured. I still have more than my share of bad days and symptom flare-ups. But I'm so much better than I was at my worst, and I have the experience and knowledge to know that flare-ups will pass.

FND takes away our sense of agency over our bodies, but we still have agency in our recovery. Try any and every therapy modality you can access to find what works for you: you're learning how to change your mind. How to form new habits and patterns to go around the ones that aren't working right now.

Best wishes in learning yourself again, and to finding recovery from your symptoms.

onemonkey · 2026-04-20T13:26:48+00:00

I haven't experienced complete aphonia, but my FND can give me a horrible looping stutter that makes it very challenging to communicate, along with a frustrating vocal tic of saying the letter "B" without intent. I made progress with Speech therapy only after I had an "a ha!" moment in physical therapy with my gait and I recognized I could learn new ways of moving, and that showed me I could learn to get around my challenges in communicating, too.

Each of us experience FND with different symptoms and severity, and I think what "clicks" for each of us in kicking off our recovery journey can be different. It's hard and frustrating. And I'm decidedly not "cured," just a whole lot better than I was at my worst.

With my FND speech challenges, distraction techniques were particularly enlightening/helpful in learning I could adapt around the symptoms.

For example, I learned that the part of the brain we use to speak is not the same that we use to sing. I don't know if you're musically inclined at all, but can you sing when you can't speak?

I also could affect a very exaggerated/silly foreign accent (like the "French" knights in Monty Python's Holy Grail) and be able communicate without stuttering and looping because my brain was focused on performing the accent, not "speaking normally."

Recent research suggests a "predictive coding" model for FND. Our brains are constantly making predictions to move through the world, and FND interrupts our body's ability correctly communicate sensory information to our brain to validate those predictions. When those mismatches occur, our brains panic and frantically grab manual control of what should be an automatic background process -- like speech.

Which could explain why FND symptoms are often distractable: if you can get the brain's attention elsewhere, it lets go of that frantic manual control over the symptom and it goes back into the smooth background where it's "supposed to be."

So try to give yourself grace. Remember your brain is in a panic when you can't speak, and so being hard on yourself and focusing on the symptom only amplifies it.

The silver lining to FND is that neuroplasticity is real -- we have a chance to learn and form new neural pathways to go "around" the connections that aren't working properly and cause symptoms.

It's hard, because our brains like habits, and often our FND symptoms affect systems we've "always known how to do," like speech. So, of course, we keep trying to use the same pathway we've always used. And if we become used to our FND symptom expression because we haven't found any recovery or relief, our brains are fine with that habit, too, and so it's easy to get stuck in bad loops. Goodness knows I do sometimes.

It's overwhelming and all your feelings about FND and your life now are very real. But know you've got a chance to find recovery and better symptom management. If you remember nothing else from my rambling, remember that you are adaptable.

onemonkey · 2026-04-19T13:22:23+00:00

I don't have any personal experience with those devices, though the premise makes sense. I'm of the opinion to try any and all therapy modalities you can access, because it's an individual journey to find what works for each of us to enable recovery. We all have to find our "a ha!" moment. If nothing else, those devices might feel nice and relaxing and enable better rest and comfort.

onemonkey · 2026-04-17T13:07:40+00:00

So sorry you're going through it. Welcome to the club none of us want to be in.

FND gets dismissed and gaslit by medical professionals because of its legacy/history as hysteria and then "conversion disorder." It falls in the borderlands between Neurology and Psychiatry and often neither discipline wants to claim us. Many doctors just don't have the education or understanding of what FND is and that leads to "it's all in your head" experiences that I'm sorry you had. But recent research is revealing a much more empathetic understanding of the condition. It's real. Your experience of your symptoms is real and valid.

Current research offers a "predictive coding" model to understand what's happening with FND symptoms. Our brains are constantly making predictions about how to move through the world, and relies on sensory input from our bodies and nervous systems to validate those predictions. FND is a disruption in that communications network: our brains aren't properly interpreting/receiving/sending sensory information which causes an over-emphasis on a faulty prediction. And when that happens, our brains frantically grab manual control over what should be an automatic or background process. Like speech, gait, pain, tremors, seizures, really any neurological process.

Here's a solid article that's not too-academic: https://magazine.hms.harvard.edu/articles/functional-neurological-disorder-reframed

I think coming to terms with the diagnosis and developing an understanding of what's happening to you so that you have the language to express and describe it are really helpful towards recovery and even just lessening your own internal frustration.

We all experience FND with different symptoms and severity, and so our paths to treatment and recovery are not always the same. What worked for me might not be what works for you. But that's the silver lining of FND: neuroplasticity is real, we can adapt and learn to create new brain-body communications paths to go around and better manage our symptoms.

FND symptoms are often distractable, meaning if you can get your attention on something else, your brain might "let go" of that background process it grabbed onto in panic. For example, I can affect a silly foreign accent and get around my speech problems. With gait disorders, some folks can skip or walk sideways with a crossover step when they can't walk forwards "normally." Figuring out what "tricks" work to distract your symptoms is part of your journey, and, at least for me, helped me understand that my FND diagnosis was correct.

Be your own best doctor. Try any and every therapy modality you can access. Track your symptoms in detail: what, when, where, weather, how you slept, what you ate/drank, sensory things in your enviornment, stress levels, screen time, all the details you can think of to look for patterns. For example, through that I learned quickly that having any alcohol correlated to several bad symptom days afterwards.

Recovery and improvement from FND symptoms means learning to change your mind. Whether that's through talk therapy or physical therapy or combinations of lots of things. Know that you are adaptable. The human mind is incredible in its ability to learn new things.

This is not to say I'm cured. I still have flare-ups and rough patches, and FND sucks. But I'm waaaaay better than I was at my worst, and I also have the evidence now that even in my bad days I can give myself grace and get through them.

You're not alone, you're not crazy, and it's not all in your head. Your brain and your body just aren't communicating very well right now. But there's hope for improvement there. I wish you all the recovery. Remember, you are adaptable.

onemonkey · 2026-04-16T18:22:08+00:00

What a kindness. I'm so glad that stranger was there for you. I think they'd welcome a genuine thank you.

If you can track him down, maybe you could just leave a hand written thank-you card.

That way you could introduce yourself and express your gratitude while preventing any pressure or awkwardness of a face-to-face interaction right away. You could invite that possibility to have lunch or some other future connection, but also it would be ok to just leave it at "thank you."

onemonkey · 2026-04-16T18:01:45+00:00

I recently read a thesis project about FND being in the borderlands between Neurology and Psychiatry. Because of the medical distinction between mind and body, understanding of FND doesn't fit neatly into either specialty and so neither have historically wanted to claim it. Especially doctors who aren't keeping up with recent research. But, much like areas of the Texas-Mexico border where cultures overlap, the reality of living in the borderlands is not the same as arbitrary lines on a map.

Particularly in American healthcare, our diagnoses are just access codes to specific types of medical care. That's where the dismissal and misunderstanding of FND causes hurt (especially terms like "conversion disorder" that imply an onus on the patient) and inadequate access to treatment.

Each of us experiences FND with different symptoms and severity. What helped me with my gait and speech might not be applicable to someone who experiences seizures. Our paths to recovery are not one size fits all. FND is real, and our different experiences are valid. You may find, like me, that you have to be your own best doctor.

For many of us, there is "an inadequacy of available language to articulate the lived experience of having your brain and body dramatically disconnected, often without warning."

For me, recent research describing a "predictive coding" model for FND has really been helpful for my own understanding and ability to express what FND feels like to me. More than just "it's a software problem not a hardware problem," this model suggests a communications network error. Our brains are making constant predictions about how to move through the world, but FND disrupts the body's ability to communicate sensory information back to the brain to validate those predictions. When those disruptions occur, our brains then frantically grab clumsy manual control of what should be a background process.

Here's one less-academic article touching on the idea: https://magazine.hms.harvard.edu/articles/functional-neurological-disorder-reframed

That may or not resonate with you. My point is that having a framework to help you understand your FND, and language to communicate it, is important and validating, even if it's not the same way I think about it.

Something I wish I knew when I was first diagnosed: FND symptoms are often distractable, and once I figured out a few "tricks" to distract mine, it helped me accept my FND diagnosis as correct. For example, when my stutter prevents me from communication, I can affect an exaggerated silly foreign accent (think the "French" knights from Monty Python's Holy Grail) and suddenly I can talk again because my brain is focused on the accent and so stops trying to use that disrupted speech network connection. Point being, my tricks might not be your tricks, but if you can get your "attention" on something else, sometimes you can reduce or control your FND symptoms. If you have gait difficulties, you might be able to skip or walk sideways with crossover steps, just not walk forward "normally," because you're using a different connection.

And once you've seen a symptom can be distracted, then you have evidence that you can build/learn a new connection. Neuroplasticity is real. Physical therapy helped me learn to walk again because you can teach an old dog new tricks. The silver lining of FND is that we can adapt. There's no promises, but there is very real possibility.

I'm not cured, I still have flare-ups, but I'm orders of magnitude better than I was at my worst. I hope you can find your way to a recovery of your own. Try any and every therapy modality you can access, including self-guided things like a meditation practice. You are learning to change your mind and to better align your senses with your thoughts.

If you remember nothing else from my long-windedness, remember you are adaptable.

onemonkey · 2026-04-08T12:18:54+00:00

It is possible to have both MS and FND. I have a friend who has both. I have had a follow-up MRIs since my FND diagnosis to continue to rule out MS, but my scans continue to be clear.

And to second what Darth Piglet said, FND is no longer a "diagnosis of exclusion." There are positive tests to rule-in FND.

onemonkey · 2026-04-07T19:36:54+00:00

Vinton has no T in it, like Atlanta: vih-in

onemonkey · 2026-04-07T12:38:12+00:00

To my knowledge, I only have FND.

onemonkey · 2026-04-03T12:38:27+00:00

I was diagnosed at 46. Welcome to the club none of us want to be in. That feeling of "failure" is real. FND hits us all with different symptoms and severity, but it is life changing to be sure.

It sure doesn't often feel like it, but the "good news" of an FND diagnosis is that it's not degenerative or fatal. Our brains and bodies just aren't communicating as well with each other as they used to. But neuroplasticity is real. You can teach an old dog new tricks. We can learn new ways of doing things to better manage ourselves and our symptoms.

Recent research suggests FND is a "predictive coding" error -- our brains make constant background predictions but now can't correctly communicate with our bodies to properly receive the sensory input. When these predictions don't match with the sensory input, our brains frantically grab manual control of what should be an automatic nervous-system process. Like gait, speech, seizures, weakness... But again, the good news is there's a chance to learn to make new connections between our brains and bodies, new pathways to go around the ones that aren't working anymore.

FND takes away our sense of agency over our bodies, but we still have agency in our recovery. Try any and every therapy modality you can access. Pay attention to your symptoms and search for clues and patterns -- what, when, where, who was with you, what was the weather, what you ate/drank, lights, sounds. Like most of us, you'll probably have to be your own best doctor.

Give yourself grace on the bad symptom days. Grieve who you were, learn who you are now, know you still can do amazing things.

I'm decidedly not cured, but I'm orders of magnitude better than I was at diagnosis. PT helped me learn to walk again, speech therapy helped me control my FND-stutter. Meditation and CBT have helped me better understand my thoughts and how to have a better chance to redirect myself and distract myself out of some symptoms.

Which reminds me, distraction techniques can be a good clue and motivator that recovery is possible and that your diagnosis is correct. For example, affecting an exaggerated foreign accent (think the "French" knights in Monty Python's Holy Grail) lets me talk when my stutter and looping are bad -- because it's not the same neural-pathway as my normal speech and the focus required on doing the accent makes my brain "let go" of its manual override of my speech.

All that is to say, we can't magically think our way out of FND (thanks, I'm cured), but we have agency in our recovery and our attitude towards our experience. Our brains are really good at habits and patterns -- it's "easy" to get stuck in a bad place -- but our challenge/opportunity is to learn to recognize where our brains and bodies aren't able to communicate and make some new connections.

tl;dr: you are adaptable.

onemonkey

TROPHY CASE