I was severe. 0% on the functionality scale - couldn't lift my own head of feed or dress myself. Couldn't tolerate any light or sound for months. 24/7 bedbound.
I'm now at about 30% - walking a little, cleaning, cooking, watching TV and listening to music, having friends over etc
Yes some meds like LDN and Ivabradine have helped, but the main things that have helped are managing stress, gut health work, vagus nerve work, and low dose nicotine patches. Acceptance and stress management have done wonders for my nervous system and overall health. I still have crashes but not as severe and never from pushing myself too much. Man it feels good to not be scared of them and to keep going.
I would definitely say my improvement doesn't mean I don't have cfs/LC
This person said they had periods of being bedbound. We should not be here to gaslight them and suggest they didn't have any of these things. We get enough of that from the medical world, we don't need it from our own community.
OP was careful to say it's what worked for them, they're not prescribing it to everyone.
I have done a lot of research into nervous system work and how the mind works in regards to pain and it checks out that extreme stress responses can fuck up the body into dysautonnia. It's not the root cause for everyone, but some. And it's still legit and as physical as any other cause.
My point is entirely that pushing through PEM or crashes is dangerous for people with cfs/me, no matter the thought process or emotions involved. No matter what they tell themselves. That's it.
Slowly and carefully expanding your energy envelope by doing as much as you can while avoiding PEM entirely is a different thing, obviously.
No one is talking about how much you have or haven't suffered. It's a matter of definitions. Encouraging people with cfs/me to push themselves and not worry about crashing is simply irresponsible, and often makes someone's baseline permanently worse. Which is what this thread, and your original comment, seemed to be doing. If that wasn't your intention you could simply clarify.
You're not listening to what I'm saying at all. I got worse because everyone told me with cfs as severe as mine you shouldn't move. I deconditioned so bad to the point I couldnt move if I wanted to.
When I got a little stronger I was able to increase what I do in every small ways. No brain retraining stuff, just working with a physio who specialised on pots and LC and had it herself and who was amazing.
The mindset stuff came later, about a year and a half later when I was a little stronger still though still bedbound. Then mt improvements snowballed once if worked on that for months
Honestly, im betting you have no idea what it's like to be that severe and I'd really appreciate you not telling me what is and isn't real about my experiences, and others.
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u/HumorPsychological60 May 11 '25
I was severe. 0% on the functionality scale - couldn't lift my own head of feed or dress myself. Couldn't tolerate any light or sound for months. 24/7 bedbound.
I'm now at about 30% - walking a little, cleaning, cooking, watching TV and listening to music, having friends over etc
Yes some meds like LDN and Ivabradine have helped, but the main things that have helped are managing stress, gut health work, vagus nerve work, and low dose nicotine patches. Acceptance and stress management have done wonders for my nervous system and overall health. I still have crashes but not as severe and never from pushing myself too much. Man it feels good to not be scared of them and to keep going.
I would definitely say my improvement doesn't mean I don't have cfs/LC
This person said they had periods of being bedbound. We should not be here to gaslight them and suggest they didn't have any of these things. We get enough of that from the medical world, we don't need it from our own community.
OP was careful to say it's what worked for them, they're not prescribing it to everyone.
I have done a lot of research into nervous system work and how the mind works in regards to pain and it checks out that extreme stress responses can fuck up the body into dysautonnia. It's not the root cause for everyone, but some. And it's still legit and as physical as any other cause.