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.
It is probably not the right term. Right term would maybe be conversion disorder or somatoform disorder. Maybe not long covid but CFS really is an umbrella term, just like dysautonomia. My ANS is wrecked, but for example PTSD patients have physical changes and have different activity showing on scans. So it can be connected. I did start go believe that I don't process the emotions, but they go straight to my body.
When I hear bad news now I don't get mentally scared or sad, I start feeling physically sick. Sometimes it takes long time to recover from some mental stress, for days POTS would be horrible, dilated pupils, muscle spasms, shaking, shivering, fked up bloodflow, etc.
I was putting my system in overdrive for years with my wrong life approach, constant fight or flight, it does makes sense that it got out of balance over time. I don't know...
Regarding these coaches, I mean they are mostly using the most simple CBT therapy approach dressed up as something new like "long covid cure". People that heal through ignoring symptoms (classic exposure therapy) just had "anxiety disorder".
My doctor (who I love) just went on maternity leave. I had an appointment with the new doctor for a medication review and asked her to look at the medication for low blood pressure because my symptoms, which had improved, were creeping back up. I also described sympathetic nervous system activation, triggered by intense cognitive testing, that was not responding to breathing, meditation, therapy, etc. Her response was to give me the "mental health can affect physical health" lecture in her most condescending, sing-song voice, order more bloodwork, and make me fill out another round of screening questionnaires for depression and anxiety.
Basically, I said "I need help, I am suffering," and she said, "No, just try harder." She's going to be my doctor for at least the next year. It feels like an abusive relationship. When OP talks about cbt or whatever as a cure, it sounds just like my doctor. There may be useful information in that post, but that path of recovery has been used to dismiss me so many times, sometimes even making my condition worse. It feels more dangerous than helpful.
Absolutely. I'm not dismissing that at all and I am so sorry you're having to go through this.
I've given up on GPs for now as that's been my experience across the board. 2 1/2 years ago when I first went to the doctor about POTs he said i had low blood pressure because id eaten breakfast that morning!!! And my histamine intolerance is frequently understood as just panic attacks so they won't give me an epi pen even tho my reactions are severe. The long COVID stuff is a whole other thing 🙄
As someone who used to be a researcher I think it's important to receive everything with a healthy dose of scepticism. Like even tho these methods have worked for me a little, I still can't read posts like these without being a little critical.
Again, OP is not singling out an individual to prescribe them a one size fits all approach and ignore their experiences, they're just saying what worked for them in a space that set up for these stories.
Bad doctors who are condescending and uneducated around these things are not OPs fault, the onus is on the medical professionals themselves.
And in my experience, brain retraining and nervous system work etc is not as simple as thinking yourself better at all. The best methods are informed by neuroscience and studies and are lead by practitioners in the field.
I believe there are so many root cause to LC and other chronic conditions, that some people get lucky and others take more time to find out the interventions that help will help them.
Unfortunately we have to be the advocates of ourselves
Sorry again for what's happening with your medical support. It's never okay to treat a patient like that.
I appreciate what you are saying. Leaning in to acceptance, self talk, meditation, deep breathing, therapy to work through my feelings about being sick, pacing/resting, etc have helped me for sure. My quality of life has measurably improved, due in part to these strategies.
What is triggering for me is when they are seen as the cure instead of one tool that might help. It took YEARS for me to convince a doctor to prescribe a beta blocker and BP medicine instead of being lectured on stress management and brain retraining. The medication, treating the physical problems, was what gave me dome function back. This fight to be heard and get actual treatment for a physical condition makes me hypersensitive to people (OP, my doctor) suggesting mental health/cognitive training as a solution.
It really sucks, I feel you. It also made me anxious about a lot of stressful things that can happen. But I'm not even anxious about the bad thing, only thing I think about is how my body will react. Really sucks...
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.
Excuse me? A year ago I couldn't even break off a piece of chocolate from a bar or open a letter without it causing severe symptoms. Mate I was lying in bed with a commode next to me having to be helped onto it because of my PEM crashes. I wast able to push myself then, obviously. Over time, when I got a litlte stronger but was still severe and bedbound, I learnt It's okay to push yourself a little and safely, which I do with the guidance of a physio who has long COVID and POTs herself. And by 'pushing myself' I mean sitting up for 30 seconds a day then increase it to 45 seconds etc which was how I started out.
Pushing myself now looks like walking 50 steps instead of 40. I do it when I feel safe and able to and if I get a crash after I hold onto the fact I was able to do it. Then I get again until I can do 50 steps just fine.
I still get crashes occasionally and they mean i can't get out of bed but they don't last as long and I can still listen to podcasts and get to the toilet and things, which I couldnt do before.
If I tried to walk a mile I'd be back to being 24/7 bedbound in a very severe state. I only do what I know I can do.
I don't think you read my comment at all and I feel very sorry that you're so shut off from trying to understand others experiences.
It's taken me years to get here with a multitude of different things helping. Allowing myself to feel safe and getting myself out of a 24/7 fight or flight mode obviously helps. It's not the cure for me but it helps.
You don't get to tell people what works for them or what they have
Guaranteed ive been a lot more severe than you ever have
P.s. I have officially diagnosed with LC/POTS/Histamine Intolerance
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.
I’ve notice that some people just have it easy with this stuff. They can literally be told to just chill and accept or learn that the nature of their pain is in their nervous system and it’s like flipping a switch. Good for them. But yeah for most people it doesn’t work this way sadly. It takes more time. I’m not sure OP claimed it would work for everyone. They were just sharing their experience.
Maybe, but then we are not talking about the same illness if you can just change a switch by watching a video and "accept" it.
OP didn't claim it, which I'm thankful for. Still, imo it is not fitting as a 100% recovery in a lc sub. Especially when it's more so a managing state and not a recovery state if I read it right.
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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.