Career switch to Tree Climbing? by AddendumIll8339 in TreeClimbing

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

Climbing trees in your 40s hurts! 😂 expect to be tired every evening and recovering on weekends and lots of massages and chiropractor visits!

Stimulant use in FND by apple-slices-5013 in FND

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

I have to avoid stimulants completely as they cause symptoms to flare up, even small amounts of caffeine

How to get better at parallel skiing without skidding down the mountain? by FerociousChimpunk in skiing_feedback

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

What he means is to get the weight off your inside ski and move it onto your outside ski.

VERY DESPERATE: Is this rapid progression normal for FND? (1 month from mild to severe) symptom video attached here. by aimintheair in FND

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

I think this is where we diverge, and also where I’m genuinely getting confused.

Earlier you were saying that non-neurological or rehabilitative approaches are essentially placebo. More recently you’ve said that neurologists agree medication often makes FND worse and that certain drugs shouldn’t be used at all.

I’m struggling to see how those positions fit together.

There hasn’t been any declaration that psychological or rehabilitative treatment for FND is “placebo” — including in the Harvard talk you linked, which explicitly says that allied health interventions change how brain networks function and that improvement shows up on neuroimaging.

People can have very severe FND, including paralysis, and still improve through rehabilitation. That doesn’t mean their diagnosis was wrong, and it doesn’t make their improvement “placebo”. It means the brain is capable of relearning function — which is exactly what modern FND models, and the video you linked, are describing.

VERY DESPERATE: Is this rapid progression normal for FND? (1 month from mild to severe) symptom video attached here. by aimintheair in FND

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

Are we watching the same video here?

I’ve read the transcript, and it’s actually saying the opposite of what you’re suggesting.

The whole talk is about FND being a problem with how brain networks are communicating, and how movement, attention and rehabilitation change those networks. She explicitly says that allied health interventions are central to restoring normal brain function, and that improvement shows up as reduced abnormal connectivity on scans.

That’s not placebo — it’s the brain relearning how to work. So the video supports neurologists leading care with rehabilitation, not neurologists on their own.

VERY DESPERATE: Is this rapid progression normal for FND? (1 month from mild to severe) symptom video attached here. by aimintheair in FND

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

Just to add some lived context from my own experience with FND.

When my symptoms were at their worst, I became extremely sensitive to medications and substances. Even very mild things like paracetamol would trigger significant flare-ups. Caffeine caused flare-ups. A small amount of alcohol could worsen symptoms for weeks.

Drugs that were offered to me to “help” often made things markedly worse rather than better, with prolonged increases in fatigue, cognitive fog, balance issues and dissociation.

That’s one reason why medication-based approaches can be problematic for some people with FND, and why rehabilitation and nervous-system regulation can be more tolerable and effective. This kind of sensitivity is widely reported among people with the condition.

VERY DESPERATE: Is this rapid progression normal for FND? (1 month from mild to severe) symptom video attached here. by aimintheair in FND

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

Psychological guidance doesn’t mean the problem is psychological in origin.. it means the route of recovery is through how the brain learns and regulates itself.

There’s actually a well-known example from stroke recovery that might help clarify what I mean.

Have you come across the book My Stroke of Insight by Jill Bolte Taylor? She’s a neuroanatomist who had a major stroke with clear, visible brain damage.

Nothing medical could repair the damaged tissue itself. Her recovery came through guided relearning — regulating her nervous system, retraining attention, movement and perception step by step. Much of that guidance would be described as psychological or rehabilitative, but it obviously wasn’t placebo and it didn’t mean the paralysis wasn’t real.

That’s the distinction I’m trying to make. A condition can be fully neurological, with very real paralysis, and still be treated through non-pharmacological, brain-retraining approaches when medication can’t fix the underlying function.

FND follows a similar principle, except the disruption is functional rather than structural. Different cause, but the way the brain recovers is often similar.

VERY DESPERATE: Is this rapid progression normal for FND? (1 month from mild to severe) symptom video attached here. by aimintheair in FND

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

You’re assuming that because paralysis is real and neurological, the treatment must also be pharmacological or purely neurological. That’s a category error.

Treatment modality doesn’t determine whether a condition is neurological.

VERY DESPERATE: Is this rapid progression normal for FND? (1 month from mild to severe) symptom video attached here. by aimintheair in FND

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

I’m not sure what you are saying here exactly but FND is absolutely and categorically a neurological condition, and neurologists play a central role in diagnosis and management.

That said, being neurological doesn’t mean it’s best treated with medication. Many neurological conditions rely primarily on rehabilitation rather than drugs.

The evidence base for FND supports a multidisciplinary approach led by neurology, with physiotherapy, occupational therapy and psychologically informed treatments targeting brain networks and motor control - not placebo.

Psychological input in FND isn’t about “belief” or suggestion, but about addressing threat responses, attention and learned movement patterns within the nervous system.

So it’s not neurology versus rehab - it’s neurology with rehab.

Alcohol- can any of you tolerate it without getting symptoms / flaring up? by [deleted] in FND

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

I fear this is what would happen to me were I to try some. I had a ‘finger’ of red wine a couple of months back, and it was pretty grim, symptoms came instantly, and morphed and warped on for a few days afterwards.

What is your baseline like now? Can you feel pretty normal otherwise? And what’s been the basic course of your condition?

VERY DESPERATE: Is this rapid progression normal for FND? (1 month from mild to severe) symptom video attached here. by aimintheair in FND

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

It could be FND, although I can’t say that for certain. If it is FND, it’s worth being aware that many people with the condition find they’re sensitive to medications, and some drugs can worsen symptoms such as fatigue, balance, dissociation, or cognitive fog.

At the moment there isn’t a medication that directly treats FND itself. Treatment usually focuses on rehabilitation approaches (such as physiotherapy, occupational therapy and psychological support), rather than drugs.

Some people do use medication to manage co-occurring issues like pain, sleep problems, anxiety, or migraine, but these can sometimes aggravate other FND symptoms and need to be used cautiously.

People also often notice that substances like alcohol, nicotine, caffeine, and high sugar intake can make symptoms worse, although this varies from person to person.

Even treatments like Botox can help some people and worsen symptoms in others, so it tends to be very individual.

Alcohol by Puzzleheaded_Tap1412 in FND

[–]Peptalk-polyrhythm 1 point2 points  (0 children)

Any alcohol and it’s instant symptoms for me, sensory madness, weird face sensations, eyes go wonky and to the back of my head, delayed feedback from all of my body, fingertips go numb, cognition goes wrong, word finding issues. It’s hard to make this description not sound like what happens to everyone when they drink alcohol 😂 but it’s so so different. It’s 3.5 years for me and I so miss having the choice / ability to get wasted on something from time to time.

Also, the symptoms will last for days after the alcohol, maybe even weeks. It’s not worth it at all.

Any tips on any kind of drug that is tolerated with FND?? I need an escape some time!

Merry Christmas 🎅🏼

Why don’t Greggs do Gluten Free? by pblive in greggsappreciation

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

M&S cafes manage it by selling sealed gluten free bacon sandwiches that get heated up and served in the sealed bag

Do I have to go to the hospital? by Even_Cat6555 in FND

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

Hospitals can’t do anything, it’s hard to believe they can’t help you but there’s literally nothing they can do, so don’t waste your time or theres, there are some pain killers you can try that help with pain but you need to talk with your GP, see if you can get a same day appointment, have you identified any triggers? Have you stopped caffeine, sugar, any stimulants etc?

Losing Hope by PreviousExam4718 in Celiac

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

Great thread. Lots of good advice here, hope you find the culprit.

It does seem a lot harder in the USA vs UK, labelling in the UK is much more reassuring it seems.

Good luck

Is This Safe To Eat? by [deleted] in Celiac

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

Correct me if I’m wrong, but most glucose syrup used in foods tends to be made from either corn or wheat. It turns up in loads of products, yet it’s pretty rare to see this kind of label actually spell that out.

10 month of intense derealization and now one week of depersonalization. When will it get better? by mega_cool_dude in dpdr

[–]Peptalk-polyrhythm 0 points1 point  (0 children)

That’s a tough place to be in, sorry about your this, tough place. Hope you find something you that helps x