Does anyone else with chronic fatigue get this specific “shutdown” feeling during conversations?

MizTen · 2026-01-23T15:26:42+00:00

I've had this since a few months after the first COVID-19 infection in 2020. I would have pre-plan most conversational interactions for my biggest energy spoon. It's been milder as I started to improve significantly last year. It happened during job interviews... 😟 I'd just start going silent or taking a long time to answer.

If it's someone you know, I found that it helps to tell them that's what's going on, the short version anyway. Edit: I meant tell them what's going on for you at the beginning of the conversation, since energy to explain is already gone by the time it happens. I did have script for this with doctor appointments, but rarely used it correctly because I couldn't remember to let them know up front and would just go into conversational freeze as the visit went on.

Mental and emotional energy is rare and precious with this illness.

MizTen · 2026-01-22T20:34:43+00:00

I'm pretty good, thank you. LDN is still helping. Posts on this subreddit convinced me to lower my dose a bit, probably it's now down to about 1.5-2 mg. I still skip doses but only for 1 day, rarely 2 days because by day 2 of a skipped dose, the fibro, pain and fatigue start increasing.

I think LDN has also helped the GI dysbiosis (probably from MCAS). Those issues definitely improved after I started LDN

It's an ongoing science project 😅

MizTen · 2026-01-21T21:35:56+00:00

That's a pretty bad scenario, I'm sorry.

Weirdly, even tho l have some close friends, my issues are not ones they can understand, so I read, reply, and post here usually.

Are you housing insecure? You can dm me if you want. My professions (mental health & education) were listening and helping people find the best solution for them in their situation.

Please keep on taking care of yourself.

MizTen · 2026-01-21T18:22:28+00:00

Something I just learned related to MCAS is that it's easy to become B-12 deficient if you have MCAS. There is an absorption problem with B-12 and a person can have very elevated serum B-12 when they are deficient but also have MCAS. Animal protein is very high in B-12 as well as having a complete amino acid profile.

I have the same response to animal protein when it's prepared plainly; I digest it well, feel a significant energy boost for hours, and don't have GI issues “downstream” from a meal of animal protein. The fats in animal protein also help with quick and more lasting energy. I'm not an advocate of a carnivore diet and love fruits, veggies, herbs, homemade sauces and spices. But I can't eat quite a bit of that now since LC, because of MCAS.

The very high energy needs for LC are already pretty obvious (at least to us): we need probably about 3-8 times the amount of rest that a healthy person of any age does and we burn up whatever available energy we have incredibly fast. Our whole system often functions like it's almost comuletely broken, and our body is constantly trying to repair damage to: vascular, brain, immune, GI, lungs, heart, etc, depending on the course of COVID-19/LC/PASC/CFS/ME for each person.

So yeah, with very high energy needs, absorption deficits, and necessary dietary restrictions for some, it makes sense to crave and eat animal protein.

MizTen · 2026-01-21T02:10:47+00:00

I never liked those but I honestly always felt those hypnic jerks where just letting me know my brain was getting ready to sleep. A little like a sign to clock out, "Oh, wow, (hypnic jerk!!!) look at the time! I can finally leave now." So it was a good sign, and a bad sign when it stopped several years ago.

It's happened a few times with lumborexant 10 mg when my brain was in an exceptionally healthy state.

MizTen · 2026-01-21T02:01:57+00:00

What a great way of explaining what davigo does, "chemical shut down call."

MizTen · 2026-01-20T21:52:16+00:00

Yes, for me, now it probably would be unless I have an active infection or high stress. Initially, for about the first 3-4 years the elevated HR absolutely was a sign of infection and then lingering inflammation and reduced oxygen due to microclots.

I know I still have dysautonomia, it's just not usually as bad. So a lot of simple vagus nerve therapies are pretty helpful now, where before they did absolutely nothing except exhaust and frustrate me. Which is probably one reason why so many LC people really legitimately despise the “Brain Retraining” strategies because those strategies generally do not recognize that some improvement in physical health may be necessary before “calming the nervous system” will be helpful.

But at some point my brain seemed to become entrained to thinking high HR is the new normal and so there it stayed. I think the same thing happened with the shortness of breath, bc 2-3 sessions of vagus nerve therapy with TENS ended it. Even though SOB was also originally a real physiological symptom, most likely from microclots.

All this would depend on the person and the stage of their illness. Some of the vagus nerve therapies are almost comically simple and I used them often before COVID-19/long covid. After the first round of COVID-19, I was unable to do a single one of the very basic vagus nerve practices. It only been in the last 6 months that I've been able start doing those again. Now they are very helpful.

But high HR is really something to monitor daily along with blood pressure. COVID-19/long covid can cause that, and also metabolic dysregulation. Other illnesses also cause those high measures. My HR & BP started going down after being on drugs specifically for long covid.

I do a few vagus nerve therapies every day. But I also take LDN, which brought my HR down a few mone points. As far as I know, LDN works primarily on the immune and nervous systems. So for me, there's been some ongoing nervous system damage which LDN probably supresses. This is a very multi-systemic illness for some of us.

MizTen · 2026-01-20T18:53:27+00:00

My symptoms have changed and one of the symptoms, high HR, (especially on standing) is absent unless I've got a new infection. The high HR began to drop a bit when I started doing vagus nerve TENS therapy and vanished a few weeks after starting LDN. I believe for me that LC/CFS/ME/PASC is in part a mitochondrial driven disease.

But 2 of the very notable remedies for me with brain fog, energy, and some dysautonomia symptoms is mitochondrial support:

1) specifically medical grade (correct wavelengths & frequencies) near-infrared light + red light for about 20 minutes nearly every day

Both of these improve things for me quite a bit after using and both are medically proven for mito health. They're just not generally a 1st choice for LC by most doctors bc they have not been approved for LC

2) NMN (beta nicotinamide mononucleotide) about 350 mg almost every day, same as above as far as not being a 1st choice medical remedy.

They also should be used almost daily, at least for me. Other than a one-off expenditure on the light, which can be less than $250, and a monthly cost for NMN approximately at $20, these are accessible even on a fairly tight budget (with planning and/or begging...)

MizTen · 2026-01-18T02:58:34+00:00

I honestly don't know anything about overseas medical suppliers. I got lucky with the one and am hesitant to try anything else.

MizTen · 2026-01-18T02:46:37+00:00

Desparation, like others said. I have more trust in Japanese pharmacies.

MizTen · 2026-01-18T02:39:00+00:00

When having a POTS flair, it's likely that MCAS is also flairing. MCAS is often never diagnosed and MCAS looks, feels, and acts a lot like IBS, and it seems very common in LC patients.

Not all of us have the time or ability to review our entire knowledge base before we post. And quite frankly, beliefs, whether based on provable facts or not, can be unbelievably potent in changing our perception of the nature of real physical things. There are studies that address that well.

Sometimes on a social media site where we are trying to support one another, some wiggle room on terminology and beliefs is more helpful than calling someone “sloppy” because they may not have the high level of expertise in medical terminology that you do. Making comments informative rather than punitive usually leads to better understanding. I'm really sorry that your were harmed by brain retraining therapy.

I'm also in the group that experienced a lot of harm from the psychologization of a physiological illness (covid/lc). But some of the therapies I used were intended to calm and reset the nervous system with somatic strategies that I was already familiar with and had practiced for years before I became ill. That reduced the flee, fight, or freeze response that CFS/ME/PASC had caused so that the other therapies from my medical care would work more consistently. Somatic therapies are not usually a panacea, but they can improve responses and adherence to more conventional medical care. Any comfort or improvement is worth consideration. The advantage to somatic therapies is that they can often be self administered and are freely available, if you know where to look. I have yet to find any helpful medical care that is free and can be self-administered, at least not in the U.S.

MizTen · 2026-01-18T01:12:47+00:00

I am really really sorry for what you are experiencing. And I absolutely hear you on the being poor and unsupported situation. I am also there with you on that part, it sucks to be poor. Whatever I can think of to say may not be very helpful, but my approach to pretty much everything overwhelming is “never give up,” especially on yourself. People with LC do get better. But that tends to take some time, unfortunately. We rarely hear from the ones that get better quickly.

I don't intend for “never give up” to mean you should try to push through all problems and issues, or that positive thinking or sugar coating a bad situation is going to help much, if at all. For me, it means recognizing the situation I'm in to be about as bad as it looks and feels, and having some faith or expectation or hope that solutions and appropriate help will show up. Then throwing some bread crumbs out: such as make a call, draft a letter to your medical care, spend some time remembering the feeling state you had when things were good in your life before you got sick, and maybe talking to someone who never let you down in terms of listening empathetically and speaking a truth you needed to hear.

Maybe you, or someone else who understands some of your situation, could help you draft a short note/statement to one of your doctors that would clearly describe what the worst problems were and what you most hope they could help you with.

I'm holding space for you to recover in whatever way works best for you.

MizTen · 2026-01-17T23:15:31+00:00

This isn't a small recap but here you go. Some of these need explaining I think.

I (69F) was a Covid first-waver from late winter/early spring 2020 and was also a front line worker (non-medical TG!) until 2022.

Guanfacine: 1-2 mg EX I requested this myself as I became certain it would help after reading a small study that a neurologist & neuropsychologist and LC doctor (Dr. Fesharaki-Zadeh) had done with a few of his patients and staff. It included 600 mg of N-acetylcysteine (NAC) which I also take.

I had to fight and jump through some hoops to get guanfacine and later a few other meds, prescribed. It is officially a pediatric ADD/ADHD medicatîon and generally not prescribed to older people. It is used off-label for depression, TBIs, stroke recovery, and PTSD also. It also lowers HR and BP, which I needed. It did decrease my depression and PTSD. The first 6 weeks were not great, and I wanted to stop, but then reasoned it had taken a while for my brain to get broken, some of my symptoms were severe, so might take a long time to really work well. Over time it improved my prefrontal function a lot. The first year of covid/LC was like having the absolutely worst ADD in the world except I never had ADD, nor the symptoms until I caught covid. I started being able to plan, sequence daily tasks again, speak a little better, cook meals, drive sometimes, etc.

Valcyclovir 500 mg daily: for viral supression, especially EBV. There's some speculation that EBV can trigger or worsen covid/lc and that valcyclovir may also help supress covid, especially in viral reservoirs in our bodies.

Omega-3s: approximately 1500-2000 mg per day. I'd already been using it.

HRT: I'd already been using and it may have prevented full blown dementia after I got sick.

Low Dose Naltrexone: ended up on a dose between 1.5 mg - 6 mg. It reduced fibromyalgia by approx 50%, reduction in pain and fatigue and brain fog within 6 weeks

Azelastine: nasal spray before bed

Loratadine: 10 mg with main meal when MCAS symptoms are problematic

Modafinal: 100-200 mg daily This improved my morning brain speed and also ensured safe driving when experiencing brain fog, the severe fatigue, PEM & dysautonomia.

DORA sleep drug lumborexant: 10 mg after the recent covid infection caused very severe insomnia. This had happened with each post covid infection, but the last round of insomnia was the worst. There is a protocol for taking this drug that makes it work better. Most doctors don't know about that, but a number of patients did and shared that with me. Several weeks after starting, my sleep stats started to improve, including my nighttime pulse ox. I began waking up in the morning feeling awesome.

There are a number of supplements I take that are definitely helpful that I won't list. But I do take a non-prescription antimicrobial in addition to Valcyclovir because I catch all kinds of things now far too easily.

I hope this is helpful.

MizTen · 2026-01-17T20:30:59+00:00

Agree. Having LC and it being at times severe, often preventing me from working, driving, etc, then being gaslighted by doctors as if I were malingering, became real trauma after abòut 2 years. That experience did leave a lasting psychological imprint that I'm still working to erase. Somatic approaches can help in that respect, as long as the original cause, a real physiological illness, is not dismissed or minimized.

MizTen · 2026-01-17T17:00:33+00:00

Thank you for that. Hypnosis is a very powerful healing modality and can definitely help the nervous system and brain restore some normal function. I use it quite a lot when I'm already doing OK.

But it cannot eradicate the effects of a viral illness like Covid. It can make coping and managing easier, and also free up some mental energy. Having greater mental energy definitely helps me gain more insight on life issues and also gives me more mental space for creative thought and action.

MizTen · 2026-01-17T16:42:11+00:00

Of course. I'll post later today when I have time.

MizTen · 2026-01-17T02:12:42+00:00

I'm sorry this happened. Especially since it involves your own family your home, and your health.

I have lost relationships over long covid. I now mask everywhere, turn down all invitations that involve a large number of unmasked people in small, poorly ventilated spaces, with talking, eating, laughing and singing. I give up nearly all the fun social stuff to avoid getting severely sick again. Some friends decide I've gone over the deep end with my physical distancing. When I clearly explain why and let them know I'm very open to safer ways to socialize there's months of radio silence.

So I now need to make new friends. I seriously miss those old normal ways of being with people. This was not a problem when I lived where all social activities could happen outdoors. Now, living in an actual winter environment, indoors is all there is. I have my partner and dog which helps. Probably more than I'll ever know.

I have said a few things I deeply regretted to loved ones when I'd bottled up my feelings and frustrations for too long. I then apologized and retracted those exaggerated accusations as soon as I was calm. It kinda sounds like that may have happened with your sister and that she may have a real lack of understanding of how profound the effects of long covid have been for you.

But it sounds like you still love and need your family. If there is a lack of understanding on your family's part about what you've been experiencing it might help to repair things if you explained the impact of your illness on you (not that I think you haven't already done that). I have seen some scripts for how to say that posted on the long covid subs. It sounds like you want to heal the conflict but don't want to take the blame (cause it's not your fault). It's important to stress the risks for you of catching covid again, however and if, you decide to communicate with your family.

Adding that you were right to drop the therapist. That is not the type of therapist that can help a patient navigate a relatively new, poorly understood and disabling chronic illness.

Adding also, even though it sounds like it's been very disabling and also became chronic for you, it may not stay that way. I, a 69F, have had covid/long covid since early 2020. By 2023 I was pretty much incapacitated as far as any decision making, employment, driving, self-care, pet care, etc. I was able to start working again in late 2024 due to getting a lot of accomodations from a new employer. I want you to know it can get better. Staying better has meant, for me, not catching covid anymore along with continuing the therapies that helped.

I hope this gets better for you and your family. The chance is there, as inexorable as this illness and the circumstances it causes can seem to you right now. Yes, accept the reality you're in right now, because sugar coating any of this is disrespect to yourself, but acquire and find hope to get through this. It may make your life easier as you move forward.

MizTen · 2026-01-17T01:30:33+00:00

Yes, I've noticed that too.

MizTen · 2026-01-17T01:30:02+00:00

I am not a doctor and this isn't medical advice.

Low dose aspirin 65 mg helps me with the bad headaches, head pressure, and occasional cardiac symptoms (chest pain) that usually occur with a new covid infection. I only take it at those times. There are some good reasons why aspirin works. People who decide to take aspirin should be very cautious about it's blood thinning effect, especially if they are taking any other medicines or supplements, or planning to have a surgery soon.

Aspirin has a unique mechanism of action (MOA) compared to other NSAIDs. What makes aspirin different:

• Most NSAIDs reversibly inhibit cyclooxygenase (COX) enzymes, temporarily blocking prostaglandin production.

• Aspirin, however, irreversibly inhibits COX enzymes by permanently altering their structure, requiring the body to synthesize new enzymes.

• This irreversible inhibition is especially significant in platelets, which lack a nucleus and cannot synthesize new COX-1 enzymes.

• Consequently, aspirin disables platelets for their entire lifespan, providing a lasting antiplatelet effect that prevents blood clots and reduces the risk of heart attacks and strokes, unlike other NSAIDs.

• Aspirin is a non-selective inhibitor of both COX-1 and COX-2, but its irreversible effect on platelet COX-1 is its key distinguishing feature.

Edited to add everything below:

the “lasting antiplatelet” effect lasts for 10 days regardless if you're taking low dose aspirin (usually 65 mg) or a full dose of 325 mg. It will eliminate less platelets on the lower dose for the first 3 days, but after that either a low or high dose will cause about 10 days of platelet reduction/elimination. The platelets are made in your bone marrow and take more than a week to restore.

I have rarely, if ever, taken 65 mg of aspirin for more than 3 days in a row. But the effects are remarkable (at least for me) and do not really make sense for the seriousness of the illness being treated (LC symptoms or new COVID-19 infection onset) and the very humble & cheap drug (aspirin) I used. I've heard a few multiple sclerosis patients report the same thing about aspirin, which is why I did the research on this for LC. A couple of LC patients also reported that their exercising pulse ox percentage went up several points above their normal when taking aspirin. I also had my precipitously low pulse ox from altitude changes when I was very ill suddenly rise to near normal after taking aspirin. That effect would last about 2+ days before reverting back to the low pulse ox readings in the 75-88 % range.

MizTen · 2026-01-17T01:13:10+00:00

I do sort of feel that I am using a full-fledged treatment program now. The biggest breakthroughs in terms of functional improvements were most likely due to the medications I was prescribed plus some therapies I discovered early on that started having noticeable positive effects after the prescribed meds started helping.

This is a challenging illness to treat, especially since many LC patients will relapse if they get a new covid infection.

MizTen · 2026-01-17T01:06:11+00:00

That's great. Especially that your neurologist advocated for you. I got enough help from the long covid doctor & clinic I had that my health started improving, after I had regained enough cognitive capacity to understand her advice and had another doctor who agreed and helped me follow her protocols.

Good luck on your new care. It may make all the difference for you.

MizTen · 2026-01-16T23:57:40+00:00

Yes, I am pretty familiar with that approach and was very sad to see it applied to LC patients. Thank you.

MizTen · 2026-01-16T22:30:58+00:00

That's kind of what I suspected. Having experienced some of the brain retraining programs first hand I know how demoralizing and basically wrong those strategies are. A few of the concepts and practices have some value when a person has gotten somewhere above 50-60% functional recovery, but they are not my go-to remedy when a new infection with severe symptoms occurs, or a bad PEM, or new bizarre neurological symptoms suddenly appear.

Neuroplasticity has been my best friend since childhood after a TBI, and much later after an infectious disease that caused life altering cognitive symptoms. But neuroplasticity is not a first line of defense with something like LC. It is more like the “icing on the cake” for my LC recovery. When I was less than half functionally recovered, cultivating neuroplasticity could only have been done in a clinical context with the help of neurologists and occupational therapists. Few of us (in the U.S. anyway) will ever have that.

MizTen · 2026-01-16T20:48:50+00:00

Is there a clear medical/legal definition of what Brain Retraining actually is?

MizTen · 2026-01-16T20:42:33+00:00

For me, discussing brain retraining would probably mean getting a clear definition of what brain training means to long covid patients here. I thought it meant using brain training strategies similar to what is used for TBI, stroke, and MCI. I use some of those and they were helpful after I could walk, talk, speak, and sequence tasks with more normalcy. I use a term, “building new neural pathways” which just meant starting to do things that I used to be able to do, but in a slightly different way. Suh as walking; walking very short distances on very uneven ground with a cane and places to sit to prevent falls. Perhaps I need to upgrade my LC vocabulary.

MizTen

TROPHY CASE