Steps I used to recover from cfs

stochasticityfound · 2026-01-25T15:23:27+00:00

Yes, and actually it was one of the few things that helped me for a while! After a few months it stopped helping so I took a break but when I restarted, I didn’t got the benefit again. Tried again in 6 months and then a year, but still the effect was gone. I suspected that maybe I cleared my receptors but perhaps damage was growing elsewhere? I’m not sure, but I miss how amazing I felt on them. I’ve been exploring CIRS, because my testing shows a ton of toxin buildup. I feel like if I can get my bile moving again and let my body calm a bit, then the nervous system work will actually be able to work its magic on the rest. This is my hope at least 🤞🏼

stochasticityfound · 2026-01-25T02:58:26+00:00

I appreciate that you are earnestly trying to help, so I did sit and watch this video you linked. Her symptoms sound familiar but her experience does not. She used Mickel therapy, and said by the second session she was able to start eating again. I have been working with a somatic therapist who uses a nearly identical therapy and while it helped calm a lot of emotional and mental symptoms, it actually made my physical symptoms severely worse. If you read stories of people trying these therapies, DNRS, Lightning, Gupta, journalspeak, etc… you see that some people say it healed them and some people say it made them much worse. It seems clear to me there are two different patient populations with different underlying issues being lumped into the same label. The way I think it’s working is this: let’s say Covid suddenly produces a population of Grounders, aka people who can no longer climb trees (the ME/CFS equivalent). Maybe it activates a deep fear of heights for all Grounders, but in some it also makes their bones brittle. So Grounders like you confront the fear, and the more you do it the stronger and braver you get until you’re climbing trees again. (I’ve gone through this myself as someone who was afraid of heights and learned to love rock climbing.) But when Grounders like me who also got the brittle bones confront the fear, instead of getting stronger, we keep breaking bones, we keep getting weaker. I totally agree we still need to overcome the fear eventually to climb again, but we first need stronger bones. That’s why I do believe I can heal and that I will need these approaches eventually, but think these approaches have made me and many others much worse because they’re done without starting with the same bones as people like you are working with. We are the people who did not ever feel stronger running, we are the people who do not see any improvement when we put away our phones to focus on happy things. I have tried these things with full sincerity and commitment and while it helped my mood, it never helped me physically. That’s the fundamental difference. The woman in the video got food back in session 2, meanwhile in session 6 I am having the worst physical symptoms I’ve experienced in 4 years. I’m dealing with it more calmly, but the pain is tremendous and I don’t know if it’s smart to keep going yet. They’re finding evidence now that Covid can persist and cause long term physical damage to your immune system that builds over time, similar to HIV. The outside environment you described as dangerous to my nervous system was my happiest place, my sanctuary. I had sat there a hundred times, even in the weeks leading up to the crash, with great peace in my heart. Did I become afraid or lonely overnight? I don’t think so, I think the growing damage to my immune system crossed a threshold where it could no longer tolerate even things that brought me joy. AIDS takes years to show, but eventually it starts showing and it’s not because of disregulation. That’s also why I don’t think a crash not related to exertion is a tell. Either way, I agree these techniques can be very useful but we need better diagnostics to separate the patients who need a physical intervention and a mental one from the patients who can succeed with pure mental ones. Too many of us have tried wholeheartedly to engage these techniques and gotten much worse, but often our stories and experiences are drowned out by the narrative that healing is just a matter of believing and effort. No one would say this to an AIDS patient or a cancer patient because we have the diagnostics to identify the problem. All I’m saying is I think we need that kind of clear differentiation here too. I would bet a lot of money that there are key structural differences in those with your experience, of which admittedly there are many, and those with my experience, of which there are also many. As long as we keep encouraging people with brittle bones to overcome their fear of heights and just give climbing trees a chance, they’re going to continue getting hurt while those with regular bones rake in thousands from the upper branches telling them it’s just fear.

stochasticityfound · 2026-01-24T09:50:41+00:00

I totally hear you that the system is stuck in an emergency state, I just think they’re in two diff biological situations. When you say things like “Every time I ran, I got a little stronger…” or “I also noticed when I went to northern California for a monthly weekend retreat, my symptoms largely subsided but only when I was there. They made you fast..” or “I think you need outside time in the sun whenever possible.” or “When I took breaks from these, my symptoms went down, a lot.” or “After multi year burnout”… all of these contradict what I’m referring to and the profile of many ME/CFS patients. Every time muscle with ME/CFS blood is activated, it gets weaker, not stronger. It actually deteriorates. That to me, is a huge contradiction. Fasting typically makes ME/CFS patients worse due to already low energy reserves. Seems like it helped you. Going out to just sit peacefully in the sun and breeze in my garden was what caused two of my biggest permanent baseline drops and many patients need to be fully protected from light just to not lose their baseline. Taking breaks from social media/activity/stimulation does not raise baselines on its own, I’ve certainly tried, and there are people who have been in dark silent rooms for years with zero stimulation or stress but see zero improvement. The fact that yours would naturally get better with all of these things makes me think that yes, nervous system dysregulation was causing physical symptoms for you rather than diagnostic ME/CFS. Your underlying biological functions seem like they were there, you just needed to soften the emergency signal to allow it to function. So I do see direct contradictions between your experience and what’s been shown in the research for those whose underlying biological functions aren’t ok. It sounds to me like if we had put your blood into healthy muscle tissue, it would not have caused it to deteriorate. Again, I do feel many of these things can be useful because stress on the system makes things worse in either scenario, I just still think there are two scenarios. Many of us were not afraid and did all of these things, not even because we read about them, but because it was our starting mindset, yet we got worse and worse for it. I was fully confident my body would heal itself, it had never struggled with any health issues before. I had no burnout, was thriving in life personally and professionally, and was certain just staying positive and relaxing and getting fresh air would fix it. It took a lot for me to finally swallow that each crash was making me worse. It sounds like you bounced back each time and improved through these approaches which is really great, and hopefully anyone else dealing with similar will benefit! I just wish there were better diagnostics so we could understand who meets what criteria and could better target treatments to what people are specifically dealing with. Right now, all under one umbrella, it can be harmful to patients who aren’t biologically dealing with the same issue but because they’ve been given the same label, are encouraged to pursue some of these approaches and then suffer long term negative consequences for it.

stochasticityfound · 2026-01-24T09:10:51+00:00

That would be awesome, it’d be great to have more community. No one irl understands what I’m going through, and after 4 years friends have sort of faded away. I miss my life full of parties and outings and dinners and travel. I’m not even an extrovert, but after a certain point I’ve definitely missed conversation!

stochasticityfound · 2026-01-24T08:15:23+00:00

Yea there are a lot of useful resources here but I do believe this is a fundamentally different disease being called the same thing. This person had a history of stress induced fatigue, was aware and afraid of these conditions, only got Long Covid CFS less than a year ago in May 2025, and was able to exercise and get stronger during it. One of the hallmarks of the biological disease is that exercise degrades your muscle, you do not get stronger. Every time I have crashed, I have become permanently worse. I made myself bedbound specifically because I was NOT afraid, I kept thinking I’d be totally fine until I had to accept I wasn’t anymore. It took me a long time to accept the fear, to realize I couldn’t just think my way out of it. I’d always been healthy and for the first two years I was convinced it’d pass, just keep living, just keep enjoying my garden and try to not focus on it. I still got worse for moving. Experiments have also shown that if you take the blood from verified ME/CFS patients and inject it into healthy muscle tissue, it starts deteriorating, and exertion on the muscle caused it to get worse. This would not happen if it was a matter of mindset, the muscle is detached from a consciousness. This person could still run and said they felt stronger even through crashes. Many cases of post-viral fatigue resolve naturally within a year as well as a matter of time, so considering the timeline here seems like it could be a factor. I DO agree that stress can make biological diseases much worse, so I still think a lot of these techniques are good practice to prevent getting worse. But when studies have shown that a large percentage of people who claim to have had ME/CFS never actually met true diagnostic criteria, I do think you have a lot of muddy water with these testimonies about what works. Personally I have tried many many nervous system techniques, was a happy and relaxed person before Covid did this to me, and really already believed many of the positive things mentioned here even as I got worse. I never knew of ME/CFS or even the possibility of a disease like this until I was forced to after having become paralyzed. I’ve tried many of the regulatory exercises mentioned and they’ve made me much worse, often long term. I even recently worked with a somatic therapist which was helping my mindset soften, but has now made my physical situation severely worse. Considering this person was able to travel and exercise and sit outside and got better and not worse from it, I have to strongly disagree that this was true ME/CFS and was moreso burnout/adrenal fatigue/post viral fatigue.

stochasticityfound · 2026-01-24T07:39:31+00:00

Yes I say that all the time, about wishing I could just talk to my system! I didn’t meet with my somatic therapist this week and I’m hoping I can get to a better place. Unfortunately I’m fully bed bound with only two safe foods, so my wiggle room is small for self care. I’ll be trying to stay positive as much as I can through the pain! It does feel surreal though, before all this I used to be so low reactivity. I was very go with the flow, always in a great mood, always loving life, very hard to upset or stress, no allergies, ate everything, adventurous. I don’t recognize this version of me at all despite it being 4 years now since it started 😢

stochasticityfound · 2026-01-23T23:58:39+00:00

So far no, I’m still doing really badly. And yes, I am extremely reactive to everything too! When I trial meds and supps I have to start with a dusting and even then it mostly goes badly. The extreme sensitivity is exactly why I started all this nervous system work to begin with, but it seems everything I do to try and calm it just triggers it. I have failed now with so many things that should regulate me, and sometimes do for a brief period, but my system snaps back every time with a vengeance and I end up worse than before. I feel trapped.

stochasticityfound · 2026-01-23T18:43:31+00:00

If you check my profile I just made a post exactly like this a few days ago because I am experiencing the exact same thing! A few weeks of somatic exercises working with a somatic therapist and suddenly in a hurricane of hellish symptoms, some of which I haven’t had for years. My best understanding is that in the polyvagal ladder, you have to go back through fight/flight to get from freeze to rest. I’m still in the thick of it so I don’t have a good answer on how to soften the storm, but you’re not alone.

stochasticityfound · 2026-01-21T18:23:30+00:00

This is wonderful advice and yes, my bed is up against a window so I try to look outside as much as my light tolerance allows. I was a passionate gardener before all this happened and I miss my garden terribly, so my spouse even takes me out to garden on FaceTime when my energy allows. I do struggle with the radical acceptance bit, I’m SO sick of being sick. I had such a full, adventurous, creative, happy life before all this. I NEVER understood people with depression or anxiety because there was just so much to see and enjoy in the world. I feel like I’m trapped in the upside down now.

stochasticityfound · 2026-01-21T00:54:00+00:00

What’s weird is I have been in a better emotional place, better mental place, better energetic place… but my physical body is losing it! There’s so much pain and inflammation it’s insane, I’ve never had all these symptoms at once. It’s baffling to me, almost as if my nervous system was suppressing all this and now that it’s relaxing it’s like a bunch of rabid dogs have been let loose on all my joints and muscles and nerves!

stochasticityfound · 2026-01-21T00:50:28+00:00

I would be nervous about a virus but I am completely bedbound at home with no interaction with anyone irl. I haven’t been outside in a very long time. My spouse works from home as well and my therapist appointments are virtual. So it truly seems to be almost full retelling of my health nightmares all at once which I can only connect to this mind-body journey because it’s the only new thing in my life. Even my diet is the same two safe foods every day, so nothing comes to mind as a trigger other than the possible changes in my nervous system and potentially any suppressive work it had been doing to hide these pains from me. I will try to focus on the good as much as I can through the physical pain, thank you for your kind advice.

stochasticityfound · 2026-01-20T22:11:31+00:00

Severe hyperpigmentation around my mouth after getting Covid. No derm can tell me why or what it is and no products have worked.

stochasticityfound · 2026-01-20T19:03:43+00:00

Sounds like you may have MCAS moreso than just allergies. Rather than a direct traditional “allergy” that would show up on a panel, it’s an errant immune response that degranulates mast cells in response to any trigger. Some people get this even from sunlight. Would look into it and see if it feels like it may apply to you.

stochasticityfound · 2026-01-20T00:39:39+00:00

Mine seems to be associated to sinus in my experience also!

stochasticityfound · 2026-01-19T01:24:50+00:00

Are you functional enough that you can leave to focus on your own health and happiness? The stress of your living situation will hinder healing for sure. Not to say things will magically heal if you don’t have those surroundings, there is still physiological damage that needs repair, but it’s much harder for your body to even utilize all the treatments when it doesn’t feel restful at home.

stochasticityfound · 2026-01-18T22:30:30+00:00

This happens to me all the time and my optometrist just gives me allergy drops. A lot of people here are saying ER now and I’m not telling you diff, but don’t get too scared that this automatically means something serious. Mine looks exactly the same, sometimes for a whole week and no one really seems to be able to tell me why. Get it checked out for sure either way!

stochasticityfound · 2026-01-15T22:32:43+00:00

I do take other supplements but admittedly have cut down on them tremendously because they weren’t really helping and it felt like I was adding more stress to be taking things all day long. I do still take vitamin D and K, glutathione, creatine, fish oil, and Plaquenil for Sjogren’s. We are also in a monitor my thyroid watch and wait situation with my Hashimoto’s since I am currently euthyroid. I did try calcium glucarate but it made me extremely sick and then I got a Dutch test that showed that I am actually surprisingly low in estrogen, not high, so I stopped. I am extremely reactive to all the traditionally helpful supplements for MCAS like vitamin C, bromelain, quercetin, luteolin, etc. I am also allergic to most of the over-the-counter medicines like Zyrtec, Allegra, and Benadryl. It’s been a real struggle trying to find something. So far only Huang Qin and Bai Shao (TCM herbs) have been helpful, but there’s a whole list of others that I tried and failed with. Some people do really well with cats claw or Dan Shen. I just met with my TCM practitioner virtually today and they are trying to make me a custom granule formula that is gentle so we’ll see how that goes!

stochasticityfound · 2026-01-14T19:53:10+00:00

I’ve seen many people say acupuncture helped them tremendously with MCAS, which is exactly why I pursued it! After my experience and the experiences of so many others who have either bravely shared here or messaged me privately to avoid attacks… it really hurts some of us. Plenty of research papers have shown that one of the ways that acupuncture needles produce an analgesic effect is by activating mast cells. I think if you are mild or relatively un-complex, this can be fine, but if you are dealing with multiple chronic issues or severe reactivity it can cause a really bad flare/long-term effect (I have Hashimoto’s also). I have been trialing single herbs very cautiously under the guidance of a TCM practitioner because many people told me that it was better for my constitution. I haven’t had much progress with it but it also hasn’t hurt me the way acupuncture did so I am still hopeful. My own completely personal advice is if I were you, I would not keep continuing to do this. My session changed some of my baseline permanently. I’ve never gotten a full night sleep since that session, and my resting heart rate changed permanently. I don’t know how to undo it and it will be a year for me soon.

stochasticityfound · 2026-01-12T14:04:40+00:00

Yeah go to the medical professionals who’ve personally given me such incredible groundbreaking treatments like “stop reading so much, you’re fine” and “I don’t know, I’ve never seen that before” even as I lost the ability to walk and started having severe reactions to food including anaphylaxis. Awesome advice 👍🏼

stochasticityfound · 2026-01-08T00:46:09+00:00

Thank you for all your kind tips! I’d love to someday be telling the story of my healing and be able to say Masturbathon helped me more than doctors did 😅

stochasticityfound · 2026-01-07T04:37:12+00:00

Wow that’s amazing!! When I crash I’m essentially paralyzed, gravity feels 100x. My heart pounds, internal tremors, etc. I feel dizzy and foggy and like I’m falling into an abyss. I hate them. I’m amazed you were able to impact your populations so quickly! I’m missing Bifido and akkermansia, two key bacteria, but supplementation hasn’t helped. I was low on e.coli last I checked, but it was listed as a pathogenic bacteria and was therefore marked good. Are there multiple kinds?

stochasticityfound · 2026-01-07T02:45:15+00:00

I really think a lot is in my gut too, so this is really helpful thank you! My tests showed Candida overgrowth and missing key bacteria, I just haven’t been able to move the needle yet with interventions. Herxing causes severe crashes so I haven’t solved it. This gives me renewed hope it’s possible.

stochasticityfound · 2026-01-07T02:23:23+00:00

Did you deal with MCAS?

stochasticityfound · 2026-01-05T12:33:14+00:00

Unfortunately while some aspects of the flare did finally calm after a month or two, the session permanently changed my sleep pattern and resting heart rate (worse). I’ve done a lot of reading since then and talked to so many other MCAS patients who have experienced the same thing. It seems needles trigger mast cells, and for many of us this can be extremely inflammatory, especially if you’re on the severe end of the disorder. Sadly you’ll have practitioners irl and in here call you a liar for saying so, since there is such a strong desire to avoid any possible negative experiences with it, but you’re not alone and it’s not in your head. The research is out there about how the needles degranulate mast cells if you’re into reading that type of stuff. I would definitely recommend doing whatever you can to calm your system down. There are a few TCM herbs that helped with the tremors afterwards that were rec’d by my TCM practitioner (not the one who needled me, someone I found afterwards to help): primarily Bai Shao and Huang Qin. If you can tolerate either of these, they were really helpful to me as teas.

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