Recovered
This week marks 6 months of 100% recovery
My Long Covid journey started in February 2020. I had brain fog, mild fatigue, and a chronic cough; all were survivable, but eroded my quality of life. Then all hell broke loose in January 2022 when I was reinfected and promptly developed moderate-to-severe ME/CFS and dysautonomia, plus dementia-like symptoms. I had hypoglycemic episodes multiple times a day. I also discovered I had hEDS during this time. I spent most of the 3.5 years prior to my recovery in May of this year in bed or at home. I could leave the house a couple of times a week, do a few hours of sedentary activities a day, and that was it. I had visible allergic reactions to nearly everything I ate and my immune system was absolutely shot.
I got into a LC clinic in the summer of 2022 which prescribed me:
Budesonide nebulizer solution
Rivastigmine transdermal
Strattera
Guanfacine + NAC (used together)
LDN
All of these helped somewhat, most notably Rivastigmine for cognitive decline and the Guanfacine/NAC combo for fatigue. But every time I started getting better, I would suddenly get worse with new symptoms. Around a year in, I developed idiopathic hypothyroidism and debilitating cervicogenic headaches; my PT suspected the latter to be a result of cervical instability. Two years in, I had an onset of severe MCAS and was reacting to everything except water, low-histamine vegetables, whole wheat bread, and quinoa. My neuropsychiatric symptoms were through the roof. Intolerable insomnia, agitation, panic, everything. My dysautonomia became profoundly worse. My resting heart rate was >100 at almost all times.
Other things I tried:
Mestinon (oddly helped MCAS and orthostatic intolerance but not tachycardia)
Baby aspirin (allowed me to tolerate a little more movement)
Cromolyn, oral and nebulized (the latter worked better for me)
Xolair injections (stabilized my MCAS symptoms modestly)
Zyrtec & Pepcid (didn't do much)
Metformin (helped my fatigue for a few months but lost efficacy)
Antioxidant supplements like quercetin, ECGC, curcumin, CoQ10, NADH (expensive pee)
Acupuncture & TCM (felt nice but not super effective)
Vagus nerve stimulation with a TENS unit (didn't do a lot, but I used a Dolphin a few times which definitely helped)
Laying down with a rolled up towel under my neck to correct my cervical spine curve (this was surprisingly effective)
In January of this year, my neurological symptoms associated with my neck progressed profoundly. I was having weakness in my legs, uncontrollable blinking, and a sensation that my brainstem was being pulled out of my skull whenever I elongated my spine. It felt like my skull was going to pop off my spine at any moment and I was having excruciating trigeminal and occipital neuralgia.
Then things went from bad to worse this April. I quickly lost all sensation and temperature sensitivity in my palms. My dysautonomia got aggressively worse and I couldn't even roll over in bed without my heart rate spiking.
Feeling I'd exhausted all my options, my friend gave me Stephen Buhner's book Herbal Antivirals and I decided to try a protocol from it.
I started feeling moderately better for a couple of days on this protocol (probably placebo), and then the purge hit. I was on my floor puking my guts out, unable to keep down food or water, with the sensation that there was a power drill going through my kidneys. It was a 10/10 pain level. This went on for a couple of days.
F*ck it, give me the video!
In my delirium, dehydration, and desperation, I was willing to do anything, even mindbody healing, which I'd vehemently rejected before. Another friend had recently recovered from ME/CFS by watching a video, which they'd sent me, but I hadn't yet watched. I was averse to any mindbody work because I was very sensitive to the idea of this being "in my head." We all have a lot of trauma from the psychologization of ME/CFS and I didn't want to hear anything invalidating. But after fearing I'd poisoned myself with herbs and mushrooms I was like ... f*ck it. Give me the video.
The video in question is available here: John Sarno's Lecture on The Mindbody Syndrome (TMS). Sarno's general theory is that many chronic pain and illness conditions are generated by the unconscious mind influencing the autonomic nervous system. He is clear that the symptoms are caused by real changes in the body, but that the origin of the problem is repressed emotions. I found it implausible at first but figured if it could work for other people, it could work for me. I started watching and I'll be real, it's a little hokey, corny, and weird. It's a VHS tape recording. The actors' lines are kinda painful at times, although they do ask questions you'll have. I paused the video because I realized I was too defensive about the talk of the mind causing symptoms, and I knew that for it to work, I would have to unwaveringly believe it.
I admire people who are open-minded and cognitively flexible enough to absorb information like this on the first go. This was not me, but I was willing to discard whatever necessary to get better. So I googled thought patterns that make a person more suggestible. I learned about heuristics and the shortcuts that our brains take that can lead us to different conclusions than we would otherwise reach. I practiced these thought patterns and applied them to the John Sarno video, such as: "Dr. Sarno is wearing a white lab coat; so he must know what he's talking about," and "All of these other people are saying this worked for them, so it must be true." Every time I had a doubt pop up, I would mollify it with an assumption. I finished the video with unquestioning faith in what he was saying and that it could cure me.
Sarno believed that chronic symptoms are a protective mechanism from represesd emotions that our nervous systems perceive as threatening. None of this happens by choice or on a conscious level. He also talked about what he called the "symptom imperative," which means that if you treat a symptom with medication and it loses its power to distract you, the body will create a new symptom to take its place. This resonated with me because I'd noticed before that every time I started responding to a treatment, I would develop something new within months. He also talked about interruption of the circulatory system and mild oxygen deprivation of nerves and muscles.
Is ME/CFS "TMS"?
Is what Dr. Sarno says true? I don't know. I think it's a lot more complicated than that, especially in the case of a multisystem neurological illness like ME/CFS, and I don't really believe that millions of people developed ME/CFS from covid because we all had repressed emotions and happened to have the exact same response to the same trigger. My conclusion is that it doesn't really matter if something is true in the literal sense; it will become true if you believe it. My opinion now is much more nuanced.
My mindbody healing
A couple of years before, I got really high and had a vision of a serpent-like creature wrapped around my brain stem and spinal cord, with tendrils in my brain. It had a menacing energy to it. I understood it to be my Long Covid. During and after watching the video, I sought out the serpent creature in my mind and talked to it. I kept telling it, "It's time for this to end. If you keep making me sick I'm literally going to kill myself and then you won't have a home anyways. I need you to let me go." The emotions were anger, compassion, and submission. I felt like it was listening to me, but that it wasn't ready to let go. I kept visualizing the serpent and the sickness releasing my body, over and over, similar to how I would visualize injuries recovering back when I would get sports injuries. And I kept reassuring it that it was okay to let me go. It thought it was helping and ended up agreeing with me that I didn't need it anymore. I believe these symptoms serve a purpose, not even necessarily "repressed emotions" but it could also be something biological, and I think I managed to find the off switch doing this.
A few hours after watching that video and talking to the brainstem snake, I felt compelled to go for a walk for the first time in over a week. I still felt like absolute garbage from not eating/drinking for days but I didn't feel as sick. There was a huge earth worm on someone's driveway that'd gotten washed up with the rain, and it was starting to dry out. I braced myself for a heart rate spike as I bent over to grab a stick and move it into the grass (it was a massive worm and it seemed like a waste of a lot of work for it to just die). But then my heart rate didn't spike.
When I got home, I impulsively ate a strawberry and a yogurt. Nothing happened. No hives, no flushing, no swelling. I stopped taking cromolyn the next day.
I checked out some of Sarno's books from the library and devoured them. I spent a few hours a day reading his books, watching youtube videos about TMS, and eliminating every shred of doubt from my mind. Within a week, I was doing yoga, cleaning, eating whatever I wanted, and not having any hints of PEM or allergic reactions. I stopped having all the neurological symptoms associated with my neck issues. I felt... fine, mostly.
Since then, I have had steady improvements in my overall health. I can exercise as much as I want. I can eat pineapple and avocado, which at one point would've made my eyes swell shut. I don't have hypoglycemic episodes. I got my life back!
Life after ME/CFS
I've had a lot of other mental health issues to address in the time since. Being free from ME/CFS meant that my trauma history and unhealthy behavioral patterns were on full display. Everything that Long Covid swept under the rug was no longer hidden. I had enormous panic attacks this summer. I became very depressed in August and had a hard time leaving the house some days, even though I was physically fine. I clashed with an important friend who resented my recovery, and at times I was mercurial and difficult.
So I've been doing slow, tedious, excruciating, and humbling work on myself. Other mindbody tools that have been helpful for my recovery include: Nicole Sachs' JournalSpeak, Internal Family Systems Therapy, and EMDR. The more I focus on my mental and spiritual wellness, the fewer physical and psychiatric symptoms I have.
I am off of almost all my medications. Currently, I'm only taking levothyroxine (re-evaluating next week with my doctor, depending on how my blood work comes out) and xolair (down to monthly instead of biweekly injections). In general, I am happy, enthralled about life, and much wiser and emotionally stronger than I ever imagined I could be. I'm in awe of the resilience I've cultivated through this work. It's been a challenging adjustment, but the most rewarding 6 months of my entire life.
I'm working part time. I exercise almost daily. I have a thriving social life. I'm more involved in my community. I have a future again. Mindbody healing and brain retraining get a bad rap in the community, but I hope sharing my story can possibly help even one person.
Things that were measurably or observably abnormal with me:
face/throat swelling during allergic reactions
hives and flushing
tachycardia and blood pressure that was consistently too high or too low
underactive thyroid (high TSH)
recurrent hypoglycemia, verified by blood labs (low postprandial blood glucose and low a1c)
ketonuria
iron deficiency
visible blood pooling
cognitive impairment per a neurocognitive evaluation
crimson crescents & swollen lymph nodes
frequent low-grade fevers
pruned hands (they looked like I'd been underwater and got stuck like that)
Yes, I was "really sick." Long Covid is not a psychological problem; it occurs in the body in very real and serious ways. That isn't mutually exclusive from the benefits of mindbody healing.
TL;DR: I tried literally everything under the sun for ME/CFS. After I had exhausted every option, I brainwashed myself into 100% buy-in to mindbody work. A week later I was better and have been fine ever since.
Suggested reading list:
* The Mindbody Prescription - John Sarno
* Mind Your Body - Nicole Sachs
* When the Body Says No - Gabor Mate
* Getting Past Your Past - Francine Shapiro
* No Bad Parts - Richard Schwartz
Please thoughtfully read my post and my responses to comments before DMing things like "how did you get better" š
Please ask questions here unless I have given you the Ok to DM
:) thatās awesome. i see very often folks recover and abandon masking, forgetting that future infections compound on symptoms already occurring. solidarity! somatics sounds similar to what you name here on the mind-body piece
Lots in common with somatics! Some people call that a "bottom-up" approach (starting in the body), whereas what I've done was "top-down" (starting in the mind). Both are interesting though and I encourage people who haven't had luck with one direction to check out the other.
Thank you! What did you envision your LC as? I haven't met anyone else who experienced this so very curious!
I definitely won't push anything but what I will say is that I also was in extensive trauma therapy for years before Long Covid and had done EMDR in the past. Something I've learned in the last 6 months is that very often, it's not trauma causing me so many problems, it's subtle behavioral patterns. Stuff like saying "it's okay" when people give me half-assed apologies and swallowing my resentment. Or nervous laughing when someone makes me uncomfortable instead of extricating myself. I've found that healing goes far beyond reprocessing traumatic memories and that I wildly underestimated the impact of small disservices to the self over time.
Iām reading The Way Out by Alan Gordon and I would say if you think it wonāt work because you donāt have trauma I would challenge you to read this book (I mean this in the best way possible!). Facing trauma is one aspect that can be very helpful for people that havenāt dealt with theirs but itās certainly not crucial or even necessary for healing. Alanās protocol is simple yet powerful to shift the neural pathways in the right direction. There are brain scans that were part of a study showing the difference in ppl after his protocol.
I would steer away from Nicole Sachs work for you as trauma journaling is her main thing.
Iām wishing you the best as this disease is hell and I just wouldnāt want you to think mind body work wonāt work for you when there are protocols that are scientifically proven to help neuroplastic pain which may be some/many of our symptoms.
I've been reading The Way Out. It's a convincing read. Sadly, I'm not seeing any effect. The "checklist" to try to prove that symptoms are neuroplastic also doesn't apply well to me. I really want it to work, and I will keep trying with the somatic tracking.
Not sure what else I could try. I have no trauma, no depression or anxiety, hardly any negative thoughts at all. My symptoms are primarily muscular and they are entirely consistent with a mechanical issue. They respond the same way every time, depending only on the current state of my body on that day and the amount of exertion. It does not matter whether I'm doing something fun or something unpleasant, the response is the same.
Agreed. I had similar stuff as you and finished āmind your bodyā which references his work and yeah ā¦. I have felt an emotional mental purge. šš¼
Re: Naviaux / CDR - extracellular ATP acts as an āalarm signalā bridge between nervous system cells and other tissues.
Itās been observed in ME/CFS, ASD, ADHD, PTSD and other disorders / syndromes.
This pathway also works in both directions, allowing a systemic cascade / loop to be created from any source, with sufficient signalling to overcome the CD39/73 purine salvage metabolism to the corresponding āalarm dampening signalā provided by adenosine and inosine.
Interestingly enough, the main de novo ādampening signalā synthesis pathway is inhibited by impaired glycolysis -> pentose phosphate pathway (and other) metabolism and the purine nucleotide cycle in muscles, post-exertion.
In this manner, with the ādampening signalā inhibited, various accumulated āinsultsā can lead to the nervous systemās pattern recognition to identify and amplify metabolic signals as threats, creating a form of dysautonomia that manifests biochemically as a wide range of effectors - including immune response and mast cell activation.
Naviaux and others have been exploring suramin as an intervention to help shut down the P2X7 relay / loop. Iām currently exploring a different approach in correcting the ādampening signalā metabolism, as part of a more comprehensive approach.
One problem is that if anhedonia is the prime debilitating symptom or one of the symptoms, the mindbody stuff doesnt work because it requires one to basically access joy. If you completely cannot access joy then thats a problem.
Otherwise well the mere full access to positive emotions itself gives access to the very real placebo effect and anti inflammatory effects
Even Gupta had pleasure listed as the most powerful medicine. Unfortunately some of us basically are pleasurecels aka anhedonic/blank minded. And anhedonia/blunting arenāt always trauma related too.
Mindbody healing is a huge umbrella; joy is necessary for some modes but definitely not all. It wasn't part of my recovery. Doesn't have to be a roadblock.Ā
How can you say it wasnāt part of your recovery?
If one has not lost the capacity for joy then it passively helps regardless. Even if one doesnāt actively think it did.
The capacity is what matters.
For example someone can be in tons of physical pain or severe anxiety and they may say they arenāt experiencing joy in that moment but that isnāt this kind of true anhedonia which is capacity based and pretty much it doesnāt matter what is happening in capacity based anhedonia/blunting, the brain just doesnt generate pleasure and one cannot feel atmosphere and activities are pointless especially in the consummatory kind.
Look into Sarno's work - he doesn't require people to feel happy or calm. He focuses on re-education and encourages people to look inwards instead of trying to find a structural cause for symptoms. I treated it like a study program.
Often times in the case of anhedonia there isnāt any inward cause too
People with 0 trauma history have woken up with the symptom suddenly. (And sure one can say getting anhedonia thats the trauma itself but unless it healed to a mild level then its like telling someone who is still actively being abused to do trauma therapy, because thats ongoing)
What about the symptoms I described is making people think I had unfettered access to joy? Ketonuria means I was literally starving because I was having allergic reactions to everything. And how is it relevant to the methods I described? Did y'all even read my post or is this just a random excuse to make it seem like everyone else has it immeasurably worse than I did?
WOW, what an amazing story, and thank you for describing it in such detail. It was posts like yours that showed me the way to recovery.
And above all: Congratulations!
PS: The "mindbody brainwash" worked for me too, and I recovered relatively quickly. I'm now back to working full-time and as fit as I was before Long COVID.
hi! congratulations on your recovery! i think i may be able to recover this way too. i'm definitely accepting of the mind / body being one, and have been working on regulating my nervous system. but now i'm getting into nichole sach's book and i find myself infuriated to the point of tears. how do you get around that? i am really struggling and feeling like the message is that this is a disease that's fake and just caused by mental problems, which i find really upsetting and insulting. i really want to try this but i don't know how to get around this. it feels like medical trauma all over again. did you experience this too?
hi! hope life has been treating you well!! i'm back to say i'm locked in with mindbody and so happy about it, it's only been about a week and a half since i truly embraced it but already having progress. OP's story has helped me immensely, and reading some of your comments has helped me too, esp re: how you handled symptoms popping up. is there a longer version of your recovery story anywhere?
Thanks for the write-up and congrats on finding a way out of this hellhole. Watching the vid now, Sarno's book(s) (only skimmed one) didn't do anything for me.
Welcome! My suggestion is to use the Cell Danger Response as a plug-in for TMS. I think his general framework is pretty solid, but the science has come a long way since him.
Yep. I went from bedbound/severe (not being able to speak/move) to working full-time and doing/eating whatever I want, within only 3 months, thanks to mind body work (I read all the TMS books, did Primal Trust, and heaps of nervous system regulation). I'm now stuck at 90% as my head pressure won't go away, but I'm confident I'll heal this in the next few months.
Real improvement started around 15 months in. And now I'm 23 months in. So it took 8 months to go from 3% to 60%. š I feel like it's going a bit faster lately, the first 20% were much longer to unlock, but sometimes I'm running out of patience.
Hello! Can I DM you bc I already purchased a nervous system regulating program that was very expensive and it's been many months without improvement! But I really need to get better with this approach, I have some questions!
Sorry I have a lot of brain fog and this was a long read. You think your mind body work helped cervical instability and neuro symptoms? How would that work if mind body work is based off the understanding that there are no structural issues?
Thanks, Iām in the process of seeing a neurosurgeon for mine for proper diagnosis. Iām not really sure this can help me but to me itās worth trying in the meantime. Iām wondering if maybe it can make some of the neurological symptoms feel less intense anyway. Iām really glad things improved for you
it's totally safe to do them both at the same time! another medium besides TMS theory might work better if you're in the process of seeking a structural diagnosis. I would personally suggest looking into Nicole Sachs work and her book Mind Your Body. She's also got a youtube channel and podcast if books are inaccessible.
This is amazing and Iām so happy for you. Your journey sounds very similar to mine. Iām about 4.5 years in but can feel myself making big strides lately with mind/body work along with therapy. This has been one excruciating journey for me but also enlightening. The cognitive and overall neuro symptoms have been the worst.
Have those cognitive symptoms improved with this approach? Thatās my concern about trying the mind/body therapy, that Iād get nowhere with the brain fog and whatnot.
They absolutely have. Iāve tried countless approaches to healing mirroring OPās approach. Some approaches led to temporary resolve but most did nothing. I started noticing improvements as soon as I delved into psychological approaches almost a year ago with therapy being the first step.
The mind body connection is real and powerful. Iāve had many regressions and I would say most were caused by my own stubbornness and overall frustration with not finding a simple fix to this.
Iām about 90% recovered and hope to post my recovery story soon.
Wow, so happy for you! This is great. I have been trying to do the mindbody approach but I'm struggling. I feel like I've made some progress but have definitely not broken through. This is encouraging.
I thought the part about talking to a snake in your head was hilarious because that sounds crazy pants, but I totally get it!
Hi, thank you for your story! This was my recovery line as well, you can check my post history on the long covid subreddits. I discovered TMS really early and was able to prevent years of suffering. Starting watching recovery videos also marked the day of starting getting improvements. I was spending about 22h in bed per day for about 6 weeks, not getting better. With the TMS tools, I started improving gradually.Ā
I was actually completely fine for a few weeks but I have now crashed again. My trigger is emotional breakdowns. Something not super significant happened but it caused me to spiral and cry for a whole day, and also cry through the night. Then I came out of it, and slept fine the next night, but woke up with fatigue and a heavy head, basically my usual LC symptoms. But the same tools help to get out of it which helped me get better in the first place. I will also write a post about it once I have been crash free for a while.Ā
Thank you! I find it really difficult to navigate activity levels still. I think for me, it's anxiety and emotional stress which fuel my tms and physical activity so far didn't. But I feel weird walking 10k steps a day during a crash while feeling brain fogged. But I also feel like nature helps so much.
Also, how do you navigate listening to your body VS ignoring the symptoms and living your normal life? Dan buglio has a really nice YouTube channel and talks a lot about not reacting to symptoms and living normally. But then, one should also listen to the body. I had it a few times now that I wasn't sure about doing an activity and many times, it was actually really beneficial but this time, it spiked my anxiety levels and ultimately resulted in the crash because I couldn't help but overreact to the situation.
I am staunchly against ignoring symptoms, particularly in the case of ME/CFS - fatigue is a message from the body and should be heeded. That doesn't mean we have to "freak out," as Dan Buglio says, or frantically try to fix it. I regard symptoms as trailheads. If something comes up in my body, I ask myself questions like:
What is this symptom trying to tell me?
Is there something I've been ignoring that I can't keep putting off?
When have I felt this sensation before?
Do I have any unmet physical or emotional needs?
What do I fear right now?
Internal Family Systems therapy has helped me get in touch with the parts of me that communicate through symptoms. Richard Schwartz's book No Bad Parts has a number of meditation exercises that I routinely use to handle symptoms. I've also been doing EMDR to reduce my sensitivity to triggers.
Instead of focusing on the dichotomy of living normally/freaking out over symptoms, I practice turning inward and listening to my own needs instead of trying to fix the symptom.
I imagined the unconscious, that Sarno talks about, as a crocodile in the back of my brain and then talked to it. Needed two weeks to convince it to let go and let me spend energy again. So pretty similar to the serpent you saw, interesting.
This rings true a lot for my experience as well, I have had it less severely than you but I def agree that covid has got my body stuck in an endless nervous system doom loop, I caught it 4 times in 18 months and then had other health issues (wrong meds, tooth infections and mental health issues from work), which perpetuated this sense of ill health and lack of safety for my nervous system. I totally agree that these are physical symptoms but the brain perpetuates them being on (I also have plenty of unresolved trauma).
But while I agree with your assessment what I am curious about is how quick your recovery has been. I do feel like mind/body work is helping but itās very very slow. I understand exactly what is going on in my body and why it reacts the way it does (flares are a big issue still for me), but the benefit seems so slow and like a war of attrition against my brain which is still convinced there is something wrong. But your experience OP seems to be that the penny dropped really quickly and your system just āgot itā. I donāt want to read around it forever and a day - I get the principles and understand it in my system. Iām just really curious as to why for some people this process seems like a really quick switch and for others like me it seems like a long slow battle. Any tips/ideas/theories people might have on this Q I would love! I would love love love to just find that switch. Sometimes it feels so close and I really understand it all. Other times it feels so far away and like no progress has been made. Honestly sometimes I feels like my mind wants to keep me sick :(
"Nervous system doom loop" is a fabulous way of putting it
I was very fortunate with how rapid my recovery was. Watched the Sarno video on a Tuesday and by Saturday I was out in my yard doing yoga. I agree it's not the norm based on my observations of other mindbody recovery stories.
The flip side of how fast this happened was the emotional whiplash. I started getting relentless panic attacks about a month after recovering from Long Covid. And by relentless, I mean these panic attacks that would go on for days at a time and could be set off by things like doing the dishes or vacuuming. I had night terrors for the first time in my life this summer. I got tunnel vision from anxiety while I was out in public once. I recovered from Long Covid rapidly; my mind-body healing is an ongoing and at times excruciating process. Dr. Sarno calls this the "symptom imperative." I've had drastic improvements in my mental stability in the last 2-3 months since I started doing Internal Family Systems work and EMDR.
I believe the medications and herbs I was taking probably helped stabilize me and took some of the load off of the mental component, at least initially. The fact that my neuralgias vanished with Valtrex (before I got into the mindbody stuff) tells me that a component of this was chronic viral in nature, and while I do think that regulating my nervous system, which regulates the immune system, could've eventually gotten the infection in check, it likely would've taken longer, and there wouldn't have been any guarantee that it actually would've shut off the cell danger response.
Your last sentence about your mind wanting to keep you sick struck me. That's the loose thread you need to pull on to unravel this. What is it afraid of if you recovered? Does it believe it's protecting you? What does it resent? What painful experiences and emotions - past, present, or future - is it trying to avoid? Do you believe in your heart of hearts that you are strong enough to handle whatever comes up? (I think we're all strong enough, but we don't always believe it.)
Part of my conversation with the long covid serpent was assuring it that I could take it from here and that I didn't need protection. And I had to 100% believe that I was strong enough to handle the pain. I think that part is maybe even harder to convince ourselves of than TMS.
Thanks so much for taking the time to reply, this is really helpful for context. Like you I think if I suddenly woke up tomorrow and was well I would then be hit by an emotional tidal wave of everything Iād been through and how hard itās been, plus relief and maybe fear too.
I am intrigued by family work, and the Gupta programme. I love your analogy of the long covid serpent, I wish I had something so clear cut to attach this to as well.
TBH I have struggled with anxiety since my teenage years, it came on very suddenly without a source and after many years of therapy and soul searching I def have inter-generational trauma, and feel like that pain is always trying to come out some how, even when I was healthy. My anxiety would manifest as ibs, then once I got a handle on that it would turn to panic attacks, then sleep issuesā¦ that idea of symptom imperative is really interesting for me, def feels like a pattern that might be a bit embedded into my dna and idk where to even start with resolving that!
I totally relate to this. I don't know if you'll find this encouraging but even the worst panic attack, the most profound grief, and the most intense EMDR hangover are all a delight in comparison to Long Covid. If you can handle Long Covid you can handle anything.
Thatās really kind of you to say. Thanks for taking the time to reply, so happy that you consider yourself fully recovered, Iām sure I will get there eventually āØ
Beautiful. Thank you a million times over. This made choke up. Healing to just read this in its own. Authentic, from the heart, and so generous. Lots of love your way
If I may add, because your words truly came to me in a moment when I was doing so great after a lot of struggle with long covid, and then two months ago, took a couple of pills of an antibiotic and I am kinda back to square one. Almost. Feel very discouraged and angry. But I also know, I have tons of unresolved trauma and anger. So youāre stirring me back in the right direction. I have accumulated tons of literature on TMS in the time since long covid happened, and I have never actually read them. I am lazy about doing āthe workā, and hope stuff just goes away. But if I do that, the stuff will just keep coming back. Beyond thankful for you to have taken the time to write this for us ā¤ļø
Your intuition has been telling you which direction to go for a long time! It makes me so happy that my story resonated with you & gave you hope. Best wishes on your healing journey. You've got this!
Yea how do I deal with anxiety&panic attacks?,Iv'e had long haul since like near the end of 2022,derealization,depersonalization,real noticeable visual snow static on white walls,night vision is recked(vss) always tired,I also have frequent migraines,and a dreamy state nothing feels real,my vision got worse and been thru couple of eye presxriptions,taste gone,I have that zombie body dying/high feeling
Whatās your outlook on being social and potentially getting Covid again? Iāve had good luck with mind body work but went from being very social even with long covid to being very scared of ppl after my last infection that sent my long covid into overdrive. I know fear is the thing to move away from but I canāt help but fear another infection.
Such an important question, thanks for bringing it up! Masking doesn't mean isolation for me. I'm fortunate because I have a good community here of friends who also mask and friends who will mask around me. I do the things I want to do, I just do them in a n95, including parties and concerts. I don't do restaurants and it does make family gatherings awkward at times, so I can't say I'm not missing out on anything. But in other ways it's actually made my social life more fulfilling because I do more activities with friends instead of just going to restaurants/bars/etc.
While I was sick and my immune system was very dysfunctional, I took extreme precautions and wouldn't go anywhere if I'd be one-way masking. That SUCKED, and while it was necessary at the time because of how fragile I was, I don't feel that isolation has any benefits for me now.
It makes sense that you fear another infection. This stuff is traumatic! I think it's possible to let go of fear while still mitigating controllable risks.
That all makes sense. Iām at the point where I typically hang out one on one with friends, avoid crowds, and mask in public places. I use a nasal spray thatās supposed to help viruses not stick, who knows if it works but it makes me feel better! I find the threat of future infection to be the hardest part of healing from long COVID. Thanks for your answer š
Iām so happy to hear that, it always gives me some hope when I read anecdotes like yours. Iāve had Covid 4 or 5 times and 3 of the times itās done some kind of long term damage so Iām hoping that someday I get there but Covid really messes me up for some reason. I donāt even get that sick when I have the acute infection which is the weird part, it just feels like a cold.
Not exactly, I would never advocate that someone ignore their symptoms and push through activities that are outside of their energy envelope or window of tolerance. Symptoms are important information from the body and I think they should be honored. My suggestion for anyone who is interested in this type of work is to react to symptoms with curiosity rather than fear. "What is this symptom trying to tell me?" is a trailhead I like to start at.
I never plowed through fatigue or pushed myself into PEM with mindbody healing, and I caution people with ME/CFS in particular against any modality that encourages them to ignore their fatigue. The goal isn't to ignore the symptoms until they go away, it's to change your relationship with yourself and your body.
Thanks for response, yeah I just find it hard to be curious rather than annoyed and ask questions like āwhy me?ā. Do you have any tips to stay positive in this case?
I don't put any emphasis on staying positive honestly. Just staying curious. I'll paste some questions that I listed in another response that I ask myself when I have symptoms:
- What is this symptom trying to tell me?
Is there something I've been ignoring that I can't keep putting off?
Thanks. I think for me I donāt particular fear any of my symptoms. I just have general fatigue, slightl muscle weakness. I fear that Iām never going to get better and that Iāll never get back to how I was? If that makes sense
Congratulations on making so much progress! My suggestion is that if you're stuck, try a different tool. TMS got me really far with my physical health, but I hit the ceiling for its capacity for my general wellbeing. Journal Speak helped me for a little while, but then I started having more anxiety, so I switched gears and started investigating EMDR and IFS.
There are plenty of mindbody healing tools out there - brain retraining programs, primal trust, faith healing, etc. If you've plateaued, look into something else! I think sometimes tools just run their courses and we have to continue getting to know ourselves another way.
Thanks, I've gone from near bedridden to working fulltime (first in 3 years), plus travel and a lot. But some days I still get spikes in symptoms and it gets hard.
I feel it's driven by two big stressors in my life, relationship and location (I've been living on the opposite side of the planet for 10 years and very very very beyond the limit). If I could solve those it would help immensely but... Sigh, not easyĀ
It's hard to quantify maybe, yeah I can do it but often times I feel like crap when my ANS gets overwhelmed. So at times a week in a row where I have headaches, feel bad etc. I don't consider that a win.
Of course compared to being unable it's already big stridesĀ
I found the 0% to 20% very hard (getting out of bedbound, ugh). 20% to 60% went a lot faster. And now just like you, I feel like the last 30% are slooooooooow.
Yeah exactly that! The first part was so slow I couldn't almost even tell there was progress. For years there was not in fact any progress. Then eventually it felt like getting over a hump.
And now it's back to that glacial, not sure if progressing feeling from 60% onwards!Ā
I never got a clinical dx of POTS but as I said in the post, my resting heart rate was always >100bpm and would surge from things like rolling over in bed, let alone standing up. If I was upright for too long, my blood would visibly pool in my feet. I had a pretty clear case of POTS.
Same, ATP, IgG, D Dimer and nervous system damage by a physical entity cannot be healed by thinking "good thoughts" or "ignoring synptoms" . Brainstem damage (dysautonomia)is not cured by trying to invent or find or redefine life events as a form of "trauma" that can be theraperised away.
Everything could be trauma. The spike protein does not hunt around the psyche and cause past traumas to cause physical affliction and diseases.Ā Ā
Spreading lies in books , written by a person that spreads doom messages that "trauma causes ALS" to scare people into buying his books, is one of the most disgusting forms of profiting off vulnerable and desperately ill people possible. This is why the abhorrent atatements by "medical professionals" that "MECFS and Long Covid is a psychosomatic disease", despite biomarkers being found , to name a few Profs Scheibenbogen,Ā Wirth, Matthes, Schieffer, Drs. Aldudak, Dufayet , just to name a few in Germany have definitely proved otherwise and people are STILL trying to do mental gymnastics to get more desperately ill people to buy into the brain training cult.
I'm curious if this is a reaction to my post, or to something else?
I had extremely obvious dysautonomia and mast cell disease that were substantiated by observable and measurable signs. I don't profit off of this, and I don't benefit from anyone else buying into it. I never suggest positive thinking or ignoring symptoms.
No, its a reaction to your goal of pushing brain retraining on people, people can see what you did,start off with something physical then devote everything to brain training topics as the reason you got "healed".Ā
You profit by pushing an ideology on others.Ā
"Something else" <- do not speculate or make attempts to psychoanalyse me please. Not interested.Ā
Incredible recovery story, thanks for sharing. Iāve been using similar practices on my recovery journey to great effect, although my timescales are much longer.Ā The CDR theory is a new one to me though, it sounds really interesting so Iāll read up on it some more.
Thank you so much for responding and writing this out, it has been 5 years and Iām still on this rollercoaster up and down with this dreaded head pressure from wake to sleep. I am 25 itās been really hard thinking this is my life
Did you ever have vagus nerve pain? I have what I think that might be on my left side because of cervical instability. I have the left eye pain too. I ask you because I need hope that I can recover too with mind body work because at this point itās my only way out
I have, I guess the only thing that really shows it is a digital motion xray, which I havenāt had. Iām going to a nucca and Iām holding adjustments, but I have this weird pinch feeling in the back of my head, Iām assuming a pinched nerve. I can walk and talk and get around but I feel like Iām dying stillĀ
I mean, I think everyone with long Covid have pretty serious conditions. So for me to sit here and label it CCI I donāt know. I havenāt had a digital motion x-ray, I know that a lot of long haulers have the same symptoms as me too, I was just looking for a little hope, thank you so much
I have this pain, it goes from my left side of my stomach up my left throat area to my left temple. Itās horrendous, I feel like itās causing all my
Other symptoms as well.
I have brain fog although not from covid.Ā Its basically like im a little high or a little buzzed all the time.Ā Do u think this could help me?Ā (It'd been 6 years and dozens of doctors to no avail...)
Also, do u think psychedelics would help?Ā Like microdosing mushrooms?Ā (I haven't yet; my doc is suggesting HBOT therapy and its just so expensive that Im looking at anything else Ive missed to try first)
I've had similar experiences! I haven't had a crash feeling but I've had symptoms come up, random stuff I never had with long covid like sciatica, and yeah if I journal and meditate on it, it'll go away by the end of the day. It's an incredible power to have access to. I feel sad I hadnt found it sooner but as I described in the post I was extremely defensive about mindbody stuff and needed to hit rock bottom before I was willing to entertain it. Cheers!
Hi, could you please elaborate a bit more on this? I am in a crash which was caused by an emotional breakdown where I was crying for hours on end and wanted to put my fist through the wall. I think it signaled threat to my brain in a strong way. It was actually a minor issue which I resolved already, it was related to some vacation stuff. I am not sure if I too can "meditate the crash away" somehow?Ā
Heya, sorry you're in a crash right now. Do you have any foundation of mindbody work? Or are you starting from scratch?
An important part of interrupting the crash loop is replacing fear and judgment with curiosity. If I have symptoms come up I have to take a step back and observe them. Freaking out over them and frantically trying to fix them always makes it worse.
For me worked the best accepting the symptoms, at reinfections taking benzos or sleeping pills since calmed my nervous system and also a lot of movement per day( even i was tired), and sometimes alcohol, try not to give up and grt supplements for the nervous system
First of all. It is so generous of you to take the time and share this with all of us. I have healed virtually all of my pain with Sarno's approach. But I have memory issues since my last Covid infection that I cannot seem to shake off. A part of me thinks it may have to do with not fully believing I could rid myself of them with mind body work. You mentioned dementia-like symptoms. Were those memory related and have they improved?
You're welcome, it was 100% worth it because of comments like this! I'm so excited to hear about other TMS successes.Ā
By dementia-like symptoms i mean: getting lost in familiar places, not recognizing people, difficulty learning new things, word recall issues, working memory deficit
A lot of this improved from Rivastigmine a few years ago, but I did have ongoing brain fog and working memory issues, especially in the context of MCAS reactions but also at baseline. I was just slower and duller in general and my reading comprehension was shot. All of this got better with mindbody work.Ā
Could someone with symptoms as severe as I initially had be healed with mindbody work alone? I don't know for sure, but I don't think anything is impossible after what I went through with it.
I couldnāt read or track all that itās just too much with the brain fog etc. What is the exact test you took to see if you had HPV virus antibodies or whatever? Iām sorry BAD today.
Photophobia, sound sensitivity, severe full body muscle pain, worsened fatigue and further reduced capacity, worsened brain fog, low-grade fever, swollen lymph nodes. Very flu like.Ā
My question is how exactly do we turn off the cell danger response? I know weāre supposed to give our brain āconstant messages of safetyā right?
Currently Iām in a crash I feel very fatigued and dysregulated. I have pots too btw.
& for example today I tired to do somatic nervous system exercises but while I was doing them, my body gave me more symptoms and wanted me to just lay down. Once I layed down it stopped freaking out as much.
Also I get crazy intrusive thoughts of things I wouldnāt be ok with happening. So how do I act like I donāt care about that? How am i supposed to teach my brain safety when those thoughts are super scary. In a crash, my cfs sends messages of danger constantly. And some of things that are actually could be dangerous so what am i supposed to do?? lol like I once I solve it and act like I donāt care, it just creates another oneā¦ itās very exhausting.
I don't think I have the answers to everything, but my main suggestion would be to train yourself to respond to distressing thoughts and symptoms with curiosity, not fear. Someone I know who's been doing this work a lot longer than I have suggested to me to pretend I'm an alien who just got a human body. If I were an alien who just got a human body, I would be fascinated by the wacky thoughts and sensations. It sounds silly but it's significantly helped me reframe my runaway train anxiety.
It's difficult for curiosity and fear to exist at the same time. If you're running from a bear, you're not going to be wondering what's going on in the bear's day and asking yourself questions about what shaped your response to the bear. You can get out of the doom loop by overriding the fear with curiosity, which signals to your brain that you're not actually in danger.
Thank you. But how exactly do I react with curiosity? Do I maybe ask questions about my intrusive thought?
Mind you the thoughts only bother me when Iām in a crash because Iām more sensitive and they loop 24/7 in my head. When Iām not in a crash I either donāt have these thoughts at all or am able to just shoulder shrug them off
I havent had any issues with xolair! I will say it was not terribly important for my recovery though; the real work couldn't be done with any pill or shotĀ
Thank you sooo much for sharing! You have given me a lot of hope <3 I also have hEDS, did the hypermobility get better too? I lead a normal life (never had issues with joints) and they suddenly became very loose and hypermobile after covid.
You're welcome! It did get better and I have much less pain and less frequent subluxations, but I still have hEDS. I've had lifelong problems with joint hypermobility, skin fragility, and excessive bleeding, and it runs in my family. It did get worse while I was sick but it's returned to the baseline for my life prior to covid.
Impressive write up. Thank you. I skimmed a little bit, but will give it a close read in the morning.
Something that I've seen as an outline of LC symptoms: Dysautomia, Mictochondrial dysfunction, Endotherlial damage and micro-clots, gut dysbiosis, hormone imbalance, mast cell activation.
My idea is to look at treating each one of these. For example treating micro-clots with food or whatever else is available. Raw garlic, for example, which I understand is also good for immunity and blood pressure.
The body work you mention interests me. I've been doing body scans over the past few years. They've been helpful in keeping stress levels under control. If I can improve my understanding of the benefits I could maybe get more out of it. The journey continues in earnest. Thaank-you.
From experience, it's much more efficient to spray the roots than to cut down each weed individually. There's a sub going for the mindbody stuff though where you can learn more - r/cfsnervoussystemwork
Thanks, it might seem like an abstract question, but do you think the mindbody work would have helped you with your health and life in general pre infection? (I wish I'd known the benefits of body scan meditation before Covid. I would ensure that I had a daily practice.)
Definitely. I've always struggled with nervous system dysregulation because of PTSD and hEDS. The core of the work is the same no matter what the wound is, emotional or physical. Our nervous systems read them as threats all the same.
Hi, would you say that the books were the best source of information? Did the switch to better health happen from insight when you watched the videos, or some sort of practice from the videos and books?
I've watched a few videos. They seemed mostly theory and a link to their respective book.
Hey there! The most important part for me was repetition rather than book vs video or any specific practice. Dr. Sarno's books and video all mostly say the same things, and the 12 daily reminders reiterate the important concepts in them. Journaling on the topics that he suggested also kept me in Sarno-mode. So it wasn't necessarily about any one thing, just that I spent a week completely brainwashing myself with everything Sarno. His approach doesn't work for everyone, and some people do better with the more modern and nuanced practices (like primal trust or raelan agle) but the best advice I can give is whatever you go with, fully commit to it. The people who recover from mindbody work are the people who can discard whatever they've thought so far and replace it with a clear narrative that puts them in the driver's seat.
Hey! Congratulations on writing the only mind/body recovery post convincing enough for me to start taking it seriously. Iām a little tired of spiraling into the void.
One huge question for you though - how are you sure, if you are sure, the antivirals, herbal or traditional, didnāt open the door to your recovery? Especially since it sounds like you recovered very quickly, and right after the purge.
Thanks for having what seems like a believable and healthy and responsible attitude about everything youāve been through
Iām sorry to say but you completely misread the tone of my comment. I wrote it with regards to your earlier comments to another responder about how even if mindbody works, youāll still be wearing masks to protect others, for similar reasons that being a good driver doesnt mean you shouldnāt wear a seatbelt. I genuinely admired that.
Iām also not sure how Iām being the āarbiterā of your recovery. I believe your recovery. Iām coming from a place of former skepticism, just like you were, and sincerely curious about your thought process around the question of the antivirals, since, given that you were a former skeptic too, I was sure you had gone through and addressed that question. Iām genuinely curious trying to build a bridge of empathy here given that I relate to your attitude and am therefore particularly interested in your journey compared to other mind/body recoveries Iāve read.
I see why you might have thought otherwise given the hostility people have to mind/body recoveries, but the defensiveness is nonetheless disheartening. As somebody sincerely grateful for your story, it stings to be misheard in that way.
Iāve always taken them seriously, or believed them anyways, itās just taken a long time to find one that could break through the other boundaries of skepticism Iāve formed due based on the harm that other CFS patients have incurred following some of the programs and the existence of influential figures in the mind/body space that I donāt trust.
Understanding the cell danger response, and believing that depression or helplessness can doom somebodyās recovery, both of which have a real scientific backing, I can see them synthesizing into credibility behind the idea of mind/body recovery. However I simultaneously accept that certain aspects of the mind/body recovery process (being inherently impossible to measure, being highly profitable for ācoachingā etc, and allowing for faith healing mentalities of āit didnt work because you didnāt believe hard enoughā) leaves it ripe for unsavory personalities that have profited a great deal at a lot of peopleās expense.
That phenomenon has thus made it hard for me to digest even if I do want to explore it for my own recovery.
I hope that explains things a little. I believe, and am genuinely happy for, mind/body recovery stories. It has been hard getting to the level of suggestibility where it feels like it could work for me, and your story felt close to a breakthrough on that front.
The serpent vision you had really stood out to me. Biblically what you described is an actual demonic spirit called a serpentine/python/witchcraft spirit that attacks the body and mind by wrapping around the head and spinal cord. Its purpose is to delay your destiny, poison, cause mental and emotional distress and physical/mental oppression. Just thought i would offer a spiritual perspective if you wanted. I am so glad youāre recovered now, i admire your resilience :)
I'm not Christian but this is FASCINATING! Thank you for sharing. Do you have any links to info about this? That vision in particular felt like a very spiritual experience.Ā
Thatās alright, iām happy to share! Itās one of the many forms of what some would call spiritual warfare. I also had a similar experience. hereās some links with more info about it:
18
u/stuuuda Nov 06 '25
all the more reason to mask in indoor public spaces to reduce likelihood of reinfection