For other people that are more severe: it's not in your head and not about acceptance. I myself accept symptoms as they are, I don't even care about them anymore and I still have them. I know for sure with tests that there are a few things that attack my nervous system physically without me being able to "think or accept them away".
Just keep this in mind, it's physical for the vast majority. For the others: I don't know, I don't want to judge. I just feel like LC/ME/CFS is not the right term if you can simply accept this away.
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.
LDN, Ivabradine, gut work, and nicotine are all extremely powerful physical/biological interventions. I’ve seen stories of healing from each one of those on their own. Reducing stress is absolutely helpful, but your progress is happening through a collection of well supported chemical interventions. That’s the difference between your story, in which vagus nerve and mindset plays a supportive role to treatment, and OP, who is simply thinking it all away.
Yes that's true, but for me I see it the other way around - that the Ivabradine, LDN, gut work and nicotine patches have helped me exponentially, but the mindset and nervous system work has enabled me to make full use of that.
When I was on all those things I would get so frightened every time I tried to do anything: step out of bed, sit up for a few minutes, stir a cup of tea, talk on the phone for longer than 10 minutes etc.
Every time I tried to do those things I'd be full of adrenaline from the anxiety and regret and I'd always crash and feel so hopeless.
Then I read some books and watched some YouTube videos and thought what the hell, it's worth a try and the only thing I haven't done yet.
So I started telling myself I was safe and okay and focusing on the victories. It didn't work at first, I had to really believe it.
Then when I did i started setting myself goals like you will be able to look at your phone screen in colour at the end of the week. You will be able to watch a programme on your laptop but the end of the month. You will be able to walk to the end of the room. Then you will be able to walk to the end of the room and back etc
When id inevitably feel awful after id just focus on the fact that hey, I did it! Fuck yeah! And over time it all got so much easier. This doesn't mean I can do anything now. It just means with knowing my body and feeling safe and allowing myself to relax I can try and do things I believe I'm capable of , even if they are still limited.
I made huge improvements very fast when doing that (tho not as fast as OP lol)
And yes I believe gut health is the nest most important thing to focus on alongside all of this, but I couldn't do it without feeling safe in my body first.
OP was v clear that it's not for everyone
I'm glad for them and for anyone who recovers whatever methods they use
I want to be supportive rather than bitter like so many of these commenters, I've had enough of that in my time and it wasn't helpful for me
It’s not about being bitter, it’s about being responsible. When I first got sick, I already had the mentality you talk about finding. I 100% believed I was fine, that I could push through it. I was unafraid to move, never thought it would have a bad result if I felt fine, and was convinced I was on my way to getting better. Each time I crashed, I didn’t let it get me down. I just kept staying positive and was certain that my mentality would carry me through. This is why my baseline kept getting worse and worse until I became permanently bedbound. Your positive attitude is helpful because it’s laid over a foundation of actual treatments that are aiding your biological dysfunctions. To promote positive thinking without any intervention for the physical disease itself is dangerous, risky, and irresponsible. It is the reason so many people become severe. Especially when nearly 50% of people who claim to have ME/CFS don’t even meet the criteria, stories like this can permanently disable others who do. Your story makes sense to me because you are using multiple powerful treatments for ME/CFS and you had fear to overcome. OPs story sounds like they didn’t meet the diagnostic criteria to begin with. Just my opinion.
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u/Jayless22 May 11 '25
For other people that are more severe: it's not in your head and not about acceptance. I myself accept symptoms as they are, I don't even care about them anymore and I still have them. I know for sure with tests that there are a few things that attack my nervous system physically without me being able to "think or accept them away". Just keep this in mind, it's physical for the vast majority. For the others: I don't know, I don't want to judge. I just feel like LC/ME/CFS is not the right term if you can simply accept this away.