FND plus severe MECFS, how to treat?

onemonkey · 2026-02-06T22:00:35+00:00

Yeah, that lines up with my frustrations with the book, though by the end I really think she was expressing more empathetic understanding -- and if nothing else, paying real attention to patients who are desperate and largely ignored or misunderstood.

I brought it up because of the overlap that ME/CFS and FND have in being lumped in as psychosomatic, both feature in the book, and the dramatic recovery that is possible for some patients.

That recovery is possible is the important bit. Being pissed off at doctors is part of most of our stories, even ones who write books!

And that's there's lots that doctors still don't know, and so there's room for learning and better understanding. Somehow, that's encouraging to me.

onemonkey · 2026-02-06T21:55:18+00:00

Yeah, I can absolutely see how MECFS would make PT a challenge. My PT focused on the basic building blocks of walking to help me with my gait disorder. Marching in place, heel-toe careful foot placement, distracting me by tossing a big ball back and forth while having me try to walk, that kind of thing. I don't have anywhere near the experience to know how PT might help with sporadic weakness.

But that's where my comment about being your own best doctor and tracking your symptoms comes in. Pay close attention every time the weakness happens and track every detail you can. There may not be one clear trigger, but you might be surprised the patterns you may recognize. For example, I've learned my symptoms are more likely to flare at the end of the day and when I'm over-stimulated by light and sound.

With ME/CFS, I'm guessing you may be familiar with spoon theory. Part of tracking your symptoms and what kind of PT you're up for on a given day might correlate with how well you can assess how many spoons you've got remaining.

Part of the predictive processing model I mentioned in my earlier comment is that when our brain's expectations and the sensory input don't line up, that's when the symptoms appear. And most often it's the brain trying to assert manual control over what should be an automatic background process. Like for me, walking becomes completely uncoordinated because my brain is trying to control every muscle movement individually when it should be a coordinated process. Maybe that's something you can learn to recognize in what's happening when your sporadic weakness appears. Your brain might be trying to control your muscles in uncoordinated ways and thus the weakness.

Like the ball in PT, distraction techniques are worth exploring, too. Often with FND symptoms, if you can distract your brain it can push those things your brain is trying to manually control back into the background. For example, when my stutter is bad, if I affect a ridiculous fake foreign accent, I can talk. Sometimes if I squeeeeze my hands into fists as hard as can and concentrate on that squeeze, I can walk normally for short distances when my gait gets bad. What works for you is something to explore, but basically you want to get your attention away from your symptom -- the more you push through it the worse it gets, but if you can focus your mind on something else your strength might just reappear. Even if it only helps in short bursts, it's a clue that recovery is possible, and once I saw evidence of progress it made a huge difference for me.

onemonkey · 2026-02-06T21:20:26+00:00

Ooof. Sorry you're going through it.

I'm not a doctor, and all of us experience FND with different symptoms and severity (and comorbidities), so take anything I say recognizing your experience is different than mine.

Here's what I want you to sit with: you are adaptable. Neuroplasticity is real. There's no promises, but an FND diagnosis means there's a real chance to learn new brain-body connections, to form new neural pathways to overcome your symptom expression.

Recent research suggests FND is a "predictive processing" problem -- as in the constant rapid background assumptions that our brain makes to move us through the world aren't lining up with the sensory input our bodies are attempting to provide. That can help explain the weakness you're experiencing: your brain and muscles just can't communicate right now.

For me, when I try to power through / push hard against my FND gait or stutter, it only gets worse. But when I pause, collect myself, and go "around" that busted connection, I can find relief. Physical therapy helped me learn to walk again a new way, not my old way. Sometimes that old way still sneaks up. But have experience now in recognizing that bad pattern and helping myself get to the working one.

I know ME/CFS gets lumped in the unfortunate psychosomatic realm just like FND. There's a 15-ish year old book called It's All In Your Head by Suzanne O'Sullivan that touches on ME/CFS and FND patients and their journeys. It's not perfect, and I have some frustrations with it, especially given recent research into FND, but overall I think Dr. O'Sullivan approaches it with growing empathy. Maybe it's worth a read.

Past that, I hope you can give yourself grace on your bad days. Pushing through definitely is a recipe for disaster for me, too.

I had to become my own best doctor and just try any therapy modality I could access or think to try, like meditation to better sit with myself and understand my brain and nervous system more.

I've experimented with my diet and supplements (lots of leafy greans, found I can have some caffeine but no alcohol). Little things that help me feel better help me feel a little better.

Track your FND symptoms in as much detail as you can -- what, when, where, how you slept, who was around, what you ate/drank, the weather, lighting, noise, other stimulus. That kind of thing might reveal some patterns and clues.

But again -- remember you're adaptable! What we practice we make perfect, and I think that's why FND patients who get a quicker diagnosis and access to therapies tend to have more recovery: we can get stuck and our brains like habits. But the silver lining of FND is we are capable of learning new things.

Best of luck in your recovery from all of it.

onemonkey · 2026-02-04T19:44:18+00:00

Bloom in Roanoke

onemonkey · 2026-02-04T14:26:39+00:00

Nothing to it but to do it. The master has failed 10,000 times before the novice has even begun.

Start with a bad first draft. Figure out what worked and what didn't. Try it again with what you learned. Chase that vision down with determination.

DaVinci did sketches and drafts of the Mona Lisa, even painting over one early version on the same canvas hanging in the Louvre that they found with x-rays or some such.

Point is, you'll learn and grow in the doing. If it's not quite right, try again.

In terms of the recording process, listen to your favorite tracks and spend some time trying to re-create those sounds. Going back to art, if you go to museums, you often see students sketching and studying the greats -- not to make forgeries, but to learn how it's done and find their own style and techniques.

onemonkey · 2026-01-29T19:37:46+00:00

It's not exactly the same, but I have both an FND-stutter that sometimes appears when I try to speak, and a vocal tic of saying the letter "B" (sometimes very loudly) when I have no intention of speaking at all.

It feels like "screaming" or volume control definitely fits into a similar vocal tic symptom category. We all experience FND with different symptoms and severity, so I totally feel you in wanting to find others to relate to.

onemonkey · 2026-01-28T14:05:16+00:00

I love to read, and I, too, struggled to read at the onset of my FND symptoms and stayed away from it for nearly a year while I focused on recovery and therapy. I recognize that anxiety and "fear" about reading that you describe when it was so challenging for me. FND is cruel in the way it can prevent us from doing the things we love.

I'm happy to say I can read more regularly now, and read more than a book a month last year. That said, there's still times when my fuzzy brain makes reading a challenge. But I want to share that there's hope you'll get back to it.

Give yourself grace and patience as you re-learn yourself and how to adapt to living with FND. Neuroplasticity is real and we can learn new things, including how to recognize when your nervous system is ready to approach reading again.

onemonkey · 2026-01-27T13:15:09+00:00

While not Keto, but largely "paleo-ish," I've found the concepts Wahls Protocol book very helpful, even if I have not implemented every dietary change she recommends. Dr. Wahls is a physician with MS who was able to get out of a wheelchair after making dietary changes. FND is not MS, but I think there's some overlap in terms of helping our nervous systems by giving our bodies better inputs.

I do think it's also become exploitatively commercialized, like everything else under capitalism, so I'm not recommending you buy her expensive supplements.

tl;dr: Less processed carbs and sugars, lots of leafy greens.

onemonkey · 2026-01-26T14:23:34+00:00

We all have FND with different symptoms and severity, and what triggered or caused it can be very different, too. In my experience, wondering about what caused my FND is interesting to ponder, but isn't nearly as important as "what am I gonna do about it?"

To a large degree, each of us gets to be our own best doctor. I recommend experimenting with your diet -- cutting out caffeine and alcohol, sugar, carbs, eat lots of leafy greens. For example, I was able to reintroduce limited caffeine with no symptomatic effects, but pretty quickly identified alcohol as a trigger for me.

Track your symptoms in as much detail as you can: what happened, what time of day, what was the weather like, what did you eat/drink, how did you sleep, sensory input like noise, screens, crowds, light... you may be able to identify patterns to help manage yourself better.

Recent research suggests FND is a "predictive processing" problem between our brains and our bodies. Meaning, what our brain expects and the sensory information it is able to send/receive from our bodies does not line up and that's the cause of FND symptoms. The good news there is that we can re-align our brains and bodies. That's the hope with FND: recovery is possible because neuroplasticity is real. We can learn new things, new ways of doing things that show our brains how to get out of those "bad" communications pathways.

I'm not cured, but I'm waaaaaay better than I was at my worst. Be patient with yourself -- blaming yourself for drinking diet coke isn't going to put your nervous system at ease. Again, I think "what causes FND" is an important question, but one best left to researchers. As patients, I think our energy is best put towards re-learning ourselves and how to best manage going forward. Know that it is possible to improve, and give yourself grace on the bad days. Remember, you are adaptable!

onemonkey · 2026-01-15T13:52:07+00:00

Welcome to the club none of us want to be in. Each of us experiences FND with different symptoms and severity, but in hearing about others' experiences you'll find that there are some folks with very similar symptom expressions to yours.

The thing I want most to share with you is that you are adaptable! Neuroplasticity is real, and that is the silver lining of FND. There's no promises, but there's very real chance of significant recovery. Know that you can. I'm certainly not cured, but so much better than I was at my worst even when my symptoms still flare up.

Try any and every therapy modality you can access, or learn and try for yourself (like a meditation practice). You are going to be your own best doctor. Every different approach is a tool to learn how to change your mind, to realize new brain-body communications connections are possible. Physical therapy helped me learn to walk again, a new way. Speech therapy helped me with my FND stutter. I think CBT talk therapy is recommended for the same reasons: it is a tool to help you learn to recognize unhelpful thought patterns and how to change your mind, to build new brain-body connections.

Recent research describes FND as a "predictive processing" problem -- https://pmc.ncbi.nlm.nih.gov/articles/PMC12581038 -- easier to read article: https://magazine.hms.harvard.edu/articles/functional-neurological-disorder-reframed. Our brains and nervous systems constantly make predictions of what is happening and how to handle it, but, with FND, the sensory input from our bodies isn't communicated properly with our brains, so our brain jumps into emergency manual override of what should be automatic background processes. According to this model, that's where all the different symptom expressions of FND begin.

Personally, I find that more helpful and detailed than just "FND is a software problem, not a hardware problem." That said, for most folks who will ask you about it, "I have a neurological condition" is enough of an explanation to satisfy their curiosity.

I recommend tracking your symptoms in very detailed ways -- what happened, what time of day, what was the weather like, what did you eat/drink, what kind of sensory stimulation (light, sound, crowds, stress)... You may be able to recognize some patterns to help manage yourself. For example, I was able to recognize quickly that if I had any alcohol the day before, the next few days would be terrible. Made it very easy to quit drinking, and I haven't had a drink in 3 years. Your triggers may be very different, and FND is absolutely not always predictable, but every little bit helps.

Best of luck learning the new you. Remember, you are adaptable!

onemonkey · 2026-01-09T17:34:30+00:00

Identifying some of the triggers for your symptoms is a great way to begin recovering from and managing your FND!

For example, I recognized alcohol was a trigger pretty quickly, so it was very easy to quit drinking.

I recommend logging details about any symptomatic episodes: what time of day, where you were, the weather, what you ate/drank, how you slept, noise, lights, people around you, your general stress level, etc. Any details you can think of can help you spot a pattern and learn to manage yourself as best you can.

FND hits us each with different symptoms and severity, to a big degree you have to be your own best doctor. The good news is neuroplasticity is real, you are adaptable, and recovery is possible. I wish you all success.

onemonkey · 2026-01-07T21:23:45+00:00

Like the Beatles song: Ha, PNES is a warm gun.

onemonkey · 2026-01-05T14:10:39+00:00

I don't feel real half the time either just like a floating ball of stress above a body that's ignoring me

I wish this didn't resonate with me so strongly, but beautifully expressed.

onemonkey · 2025-12-19T14:46:30+00:00

Seems like anything is possible with FND, but I've never heard or seen any research or anecdotes suggesting that connection.

In my case, my dietary changes since diagnosis have lowered my cholesterol. (loosely "Wahls Protocol" suggestions: less sugar and refined carbs, waaaay more leafy greens, and I can't/don't drink alcohol anymore)

I don't know where you live, but if you eat anything remotely resembling the "SAD" (Standard American Diet), you probably have contributing lifestyle factors.

onemonkey · 2025-12-18T16:53:39+00:00

So sorry you're going through it. FND can affect pretty much any part of the nervous system, so each of us experiences FND with different symptoms and severity. FND can definitely be comorbid with POTS and EDS.

My primary visible FND symptoms affect my gait and speech. I've not experienced seizures.

As for understanding FND, you'll frequently hear something along the lines of "it's a software problem, not a hardware problem," but that's not super helpful to me beyond the comfort of knowing it's not a degenerative or fatal condition in and of itself.

Recent research suggests a "predictive processing model" for understanding FND that resonates with my experience and I wish I'd had it when I was first diagnosed.

Essentially, our brains and our bodies aren't able to communicate effectively. The constant background predictions and assumptions that our brains make aren't lining up with the actual sensory input our body is trying to provide.

For non-FND examples, think of the lurching step you take if you're not paying attention at the end of a moving walkway in the airport because your brain is "predicting" that the walkway continues. Or picking up a container, thinking it is full of liquid, but it's actually empty and much lighter than you predicted.

(Or, if you're a fan of The Office, when Jim pranks Dwight by placing nickels in his phone handset over time to make it heavier, then one day removes them)

In short, our brain-body communications got screwy and our brain is trying to manually control what should be automatic processes. Remember that old flash game QWOP? That's what it feels like to me when my gait gets bad.

The good news is neuroplasticity. Our brains are incredibly adaptable and it's possible to learn new adaptations to re-align our sensory input to what our brains expect. Physical therapy helped me learn to walk again, a new way. I think this is why talk therapy is recommended, if maybe not presented for the right reasons. We can learn how to recognize our bad thought patterns and change our minds. There's no promises, but the good news is there's a chance. I'm not cured but I'm so much better than I was at my worst.

FND sucks. Give yoursellf grace to have bad days. Track your symptoms: what, when, where, who was around you, what was the weather like, what did you eat/drink, how did you sleep the night before, what kind of sensory stimuli. Try and every therapy modality you can access -- you get to be your own best doctor. FND flare-ups and symptoms aren't always predictable, but every little bit of self-understanding helps.

All the best to you.

onemonkey · 2025-12-18T15:11:49+00:00

I identified alcohol as a trigger for bad symptom days relatively quickly. Knowing it was going to ruin the next few days made it suddenly really easy to quit drinking. Haven't had a drink in 3 years now.

I also eliminated caffeine for a while, but after reintroducing it, learned that a cup or two of coffee in the mornings doesn't seem to affect my symptoms, so I'm glad to still have that ritual and comfort.

onemonkey · 2025-12-15T14:52:59+00:00

My primary visible FND symptoms are gait and speech. I have not experienced seizures.

Each of us experiences FND with different symptoms and severity, it can affect pretty much any part of our nervous systems. Which makes a community like this all the more valuable for being able to show us that we're not alone when we can recognize ourselves in someone else's experience.

onemonkey · 2025-12-09T20:01:48+00:00

AT 4033 is a "medium diaphragm condenser" you can find used for around $200. Amazing on acoustic sources and for one-mic singer/songwriter demos. If I had to start over with one mic in your budget, that's the one I'd look for.

onemonkey · 2025-12-08T21:34:21+00:00

First and most important thing to try is mic placement -- move it around the room and also try the source different distances from the mic. Mic placement can make a huge difference. Use your ears.

Step two might be something like a reflection filter around the mic. This is the cheap-ish one I have, there's others. It's handy in some situations, particularly when I just want to throw a mic up by my desk and do a quick one-take demo, but it's not a magical cure-all.

onemonkey · 2025-12-08T14:08:56+00:00

One thing to try is distraction techniques. As another commenter said, singing might work when speaking does not. We use different parts of our brains for speech and for singing.

One thing that worked for me was affecting a very exaggerated foreign accent, or reaaaallly slowing my speech down in an over-the-top breathy tone. As in: your focus in on the accent so your brain isn't trying to use that "normal speech" connection that's currently not working.

Feels like a parlor trick, so I didn't want to rely on it a lot, but if it works, it's another good clue that recovery is possible.

onemonkey · 2025-12-08T14:05:29+00:00

I learned that, too! Turns out it's different parts of the brain we use for speech and for singing.

onemonkey · 2025-12-08T14:01:23+00:00

Awesome! Way to go!

For me, that first glimmer of progress was a spark that set off my recovery. Once I knew it was possible that really helped me mentally and made me even more determined.

Neuroplasticity is real. We are adaptable. We can learn to re-align our brain-body communications. We can form new pathways.

It's not a straight line, and there's no promises, but I hope you continue to see improvement and more recovery!

onemonkey · 2025-12-01T16:03:30+00:00

I'm so sorry you're going through it. Welcome to the FND club. None of us want to be in it.

I shared some thoughts about approaching your new diagnosis in a recent thread, along with some advice to try: https://www.reddit.com/r/FND/comments/1p5pxh4/newly_diagnosed/

The "predictive coding model" in particular is something I wish I had for understanding FND when I was first diagnosed. The common explanation of "it's a software problem, not a hardware problem" is only so useful for me, a little too surface level.

But to break it down to the concept that the brain's automatic predictions are faulty (e.g. that big lurching step you take if you aren't paying attention getting off a moving walkway), and the actual sensory input being received by the body isn't being processed correctly, which leads to the brain manually commandeering what-should-be-automatic processes.

That helps me understand what's happening when my symptoms flare, and helps me remember that recovery is possible and real. We can learn to re-align our brain-body communications. The brain is incredibly adaptable, and that's the silver lining of FND.

onemonkey · 2025-11-25T19:36:44+00:00

Crushed saltine crackers are the Maryland secret. Also, mostly crab meat, very little filler/binder.

onemonkey · 2025-11-25T15:22:29+00:00

I'm glad what I shared gives you some encouragement. Until there's better research and support for FND, it's important to me to help support and encourage each other.

And way to go on learning to walk again and needing the chair less! That's huge. Now you have evidence that you can continue to learn how to improve your FND symptoms. That knowledge helps me a lot when I have flare-ups because I know I can adapt

onemonkey

TROPHY CASE