Really resonates with me. I was a very active (4-5x a week weightlifting & 1-2x cardio) person until about 13 months ago when I got an extremely mild cold. It was barely noticeable and I continued with exercise. 2 weeks later, I still hadnt shaken the fatigue that normally comes with a cold and in fact, it got worse. After a month I sought deeper medical investigation and eventually ended up seeing a cardiologist as I now had palpatations and could hardly walk up a flight of stairs without being out of breath.
I had myocarditis, caused by an infection, likely a covid strain but unproven as it was so mild I never thought to get tested. No exercise for at least 3 months and lots of R & R. I did this but I've never fully recovered. I still get pretty bad post exertional malaise, cant tolerate caffeine or alcohol and my sleep is terrible - especially after pushing too hard. Extremely shallow and I wake up a lot. The real nail in the coffin is something about heavy lifting really tips me over the edge. I can do some (very) light cardio infrequently on good days.
Doctors have been next to useless in helping, I guess because there isnt any real treatment for what is probably a multi factor systemic problem.
Whats been fascinating is my garmin fenix watch has been able to track how I'm feeling to a T. HRV readings have been particularly helpful in knowing whether I should be really dialling back activity on a given day or allowing myself to push a bit more. Ive fallen from a baseline of 85-95ms average to 40-60ms average which is really interesting. I'd love to see what macro analysis of their data would reveal around illnesses such as mine. The sleep functionality has also been quite illumunating. Getting 8 hours used to reset me to 100 body battery, now im lucky to get back to 80 after 11 hours sleeping.
Im not alone and I'm lucky enough to have a mild case but it still sucks and has robbed me of a big chunk of my previous life and personality. Im really hoping stories like mine begin to trigger trials and further treatments.
You are describing what has been happening to me for the past four years.
It has gotten particularly bad since a cold I got in early September. My Garmin's body battery hasn't been back to 100% since then -- typically waking up at 50% after ten hours in bed.
I blamed sleep apnea for these symptoms even though the stats from the CPAP machine look great, but after reading TFA I'm questioning it.
Any exercise more intense than walking means multiple days of recovery, which has led me to pretty much stop cycling these days -- down from 90 km/week just 18 months ago. It is a shitty experience.
There is some evidence that Omega 3s lower cardiac inflammation. If I was you I'd think about self experimenting with sauna & cold baths as well.
I think you'd want to eat an extremely clean diet to lower inflammation and get your immune system to turn off. I'm no expert, but that's the way I'd think about it
Yes - this is pretty much the exact protocol ive been following. My heart health is now largely back to normal. Lingering symptoms are now fatigue, restless sleep and occasional brain fog. I'm doing some self experimentation on how to deal with those
With the current state of medical care basically anywhere you either have some cookie cutter ailment or you're more or less completely on your own. Nobody has time to spend looking into it nor wants any liability for suggesting the wrong treatment given that they have no idea what's wrong. Even with the common well researched stuff they're making educated guesses half the time.
I feel you. It’s long covid and it sucks. Try melatonin for sleep (the dosage and timing is very personal, I do 2.5mg at bedtime then read for about an hour). And ask about Metformin for the fatigue.
Garmin really gives a look into things I couldn't quantify otherwise. I had my first covid about 2 months ago, 1 month full infection cycle and now a month later I am happy to wake up at 50 body battery total. Also every day is a exhausting day now.
I’m n the club. Prioritizing sleep has been #1 for me and taking measures to reduce general inflammation. Recently completed an organic oats test and this has been by far the most revealing. I my case this has pointed the finger at gut dysbiosis (mold and c diff) that was probably there for more than a decade, but became a root cause of years of fatigue after a viral infection 5 years ago.
Too many details to go into but I highly recommend an OATS tests. And look into the bornfree.life (website) website for a wealth of information by people doing their best to solve these complex puzzles.
I've similarly been grasping at straws to find some way that makes the fatigue go away, at least a little (although not for myself). As doctors won't prescribe any medication off-label, I've mainly looked at other methods and nutritional supplements. Here's a list (which I've been meaning to braindump for a while now anyway):
- Like you already described, monitoring heart rate variability and associated 'body battery' with a smartwatch.
- Make a log of good and bad days, note the specific symptoms. See if there are any patterns to be found that you perhaps wouldn't notice otherwise.
- Read up about POTS / orthostatic intolerance and dysautonomia in general. The book / guide "The Dysautonomia Project" is a great read. Do a simple standing test [1] a few times (when you're feeling good and bad) to see if your heart rate increases and keeps increased, even if it does not meet the criteria for POTS.
- Do breathing exercises, humming / vocalization, ear massages and meditation to activate your vagus nerve. That might help with dysautonomia. There are lots of videos / guides to be found.
- Increase salt intake if that is not a risk factor for you. That might help with orthostatic intolerance. Find a good balance of different salts in the CFS community.
- Keep light walking and (if you can) light strength training as much as you can without triggering too much PEM.
- Be outdoors in the sunlight. There are many small studies showing a correlation between getting better from CFS and sunlight. An infrared lamp might help a bit as well, but don't buy into the fancy fads. I personally prefer a simple infrared bulb because of the warmth it gives which is great in winter on its own. It's also more similar to the sun with a continuous spectrum (although relatively low intensity). Many studies emphasize illuminating your brain.
- Be aware that food supplements will probably not help too much and cost quite a bit. But you might get lucky and find something that helps. It's hard to separate correlation from causation though. It might also feel rewarding that you're busy trying something. The placebo effect might help similarly.
- Get your ferritin levels checked, and a some other basic tests around CFS as well. See if your ferritin level has been recorded in the past as a baseline, because the one-level-fits-all approach is flawed (and especially for women). 15 (women) or 30 (men) µg / L is probably too low, even if that's considered 'normal'. Lactoferrin might help your body regulate iron levels and keep pathogens from using iron, but the scientific evidence is pretty weak.
- In case of deficiencies supplement with amino acid or organically bound metals, for example iron bisglycinate. Something like Thorne Basic Prenatal at 1/3 or the recommended dosage (1 pill per day) is quite cheap with many nutrients that might help a bit in a form that absorbs well.
- Creatine is widely used in sporting performance enhancement by facilitating ATP recyling and acting as buffer. Because it's so widely used it seems very low-risk and applicable to CFS. There are some very small scale studies reporting positive effects.
- Other things that are doubtful to help, but perhaps worth trying: wide spectrum probiotics, NAD+, D-ribose, nattokinase / lumbrokinase (but be careful and use a small dose), NAC, ALC.
If you find yourself with these symptoms (and even if you don't - see below for why), whatever your gender, get your testosterone level checked. We've known for decades that low testosterone causes fatigue and brain fog and the treatment for it has been approved for medical use for over 80 years, but you can go to doctor for "long COVID" and they'll do a blood test for a huge list of things and ignore testosterone, as does this article. If you want it checked you'll probably need to push for it and/or pay extra. There's a stigma around it and it's a controlled substance, but some people simply need it and will not feel normal without it.
There's a persistent myth that testosterone production in men falls as a natural part of aging. The truth of what happens to "normal" levels with age is more complex [1] but what is known is that in some people testosterone production falls dramatically and permanently at some point at some point in their life, sometimes after an injury or infection, sometimes for no discernible reason, and it can cause exactly the symptoms described here. When that happens it's not a "male menopause". It's not normal aging. It's pathological and it's treatable. The reason to get your level checked even if you don't have symptoms is so you know your personal baseline and can tell if a sudden change happens later.
The situation in women is more complex, and testosterone treatment carries different risks, but androgens are very much part of healthy female hormone production.
It's early days but there's been some interesting research about a possible mechanism for permanent changes in androgen production after COVID [2].
I'm not saying this is the only cause of long COVID. There's certainly more than one mechanism, and what helps one person can harm another (as with the graded exercise program mentioned in the article, which was entirely counterproductive for me). But it is one of the possibilities and if it were routinely checked for in people reporting these symptoms it would have spared me a few years of hell.
Viral infections and stress can cause multiple hormonal issues, from testosterone to insulin to thyroid, out of which a lot will be skipped or only a partial picture will be given during average blood test (i.e. just total test or TSH).
Unfortunately, most docs will just skimp over the results or tests to be done, so the things like "I'm tired a lot" just get handwaved away. (Un)Fortunately, a lot of friends brought their blood tests results to me since I've spent quite a long time biohacking, and nearly always it was the same: the doctor didnt do a full panel but just a partial one, said something is okay or mid, when it turned out that a full panel indicated a much bigger issue. Hell, one of them would even fall unconscious nearly once a month and multiple doctors said "it's just stress" when it turned out the person was hypoglycemic and their sugar and blood pressure would crash.
Would you mind sharing the full list of tests that you personally consider important (for men, in my case), or which you think constitute a "full panel"? I would like to be explicit about it when I get one.
I assume the "defaults" vary from country to country, and as you say, from clinic to clinic.
> "Viral infections may trigger long-term and persistent impairment in one's immune system," says Avik Roy, chief scientific officer at the non-profit Simmaron Research
This is also true in a very direct and literal way, where a Measles infection can make you vulnerable again to past diseases, because of the immune cells it attacks.
I have been tired for most of my life and I fall squarely into GenX. I have had a stroke, PTSD, depression, and ADHD. Who wants a job with an unicorn startup when you can have this?! Needless to say, my life has been consumed looking for a solution for this fatigue. My emergency goto used to be coffee (1-2 cups/day) for about 2 weeks followed by a zombie like fatigue for the next 3 to 4. I have tried different interventions both traditional and non traditional to combat the fatigue with some pretty out there modalities. The result was usually no effect with the with an occasional small positive net effect. In the past year, I was rereading some of my medical tests and found I was extremely low in taurine. Yes, most people can naturally synthesize this amino acid, yet it declines with age. In my case, I hypothesize that the internal biological process had never been working any better than sub nominally. As a counter to this, I have been supplementing with taurine for the past 6-8 weeks. The result has been a nominal return of energy. I have been able to switch from a 8 to 10 hour work day, all the while lowering my caffeine intake (coffee -> mud/wtr). I have considered that this might be placebo but it feels different and there is no noticeable fatigue recurrence given I maintain good habits. It might be a possible avenue for suffering people to explore who have exhausted all other avenues.
I have chronic fatigue issues and after trying thousands of dollars' worth of supplements over the years what worked best for me were blood glutamate scavengers (N-acetyl cysteine for me, I take an unnaturally high dose of up to 8g a day), which seem to help other chronic fatigue people, as well as berberine & niacinamide.
Other things help me that are specific to me but those definitely had a rather dramatic impact on me (after an initial period of feeling like I'd been hit by a train -- it tended make me experience my fatigue up front instead of as PEMS and also reduce the symptoms of it somewhat)
Taurine is great too, there's also TUDCA which is somewhat legendary in some parts of the fatigue community, very good supplement.
Hope this helps! <3 Doing the personal work of letting go of emotional stressors and ceasing all stimulant use when possible (I know it sounds horrible) was also really hard and made a big impact over the years for me.
Still not perfect but so much more functional than I used to be. <3
The article mentions low-dose rapamycin (aka sirolimus). That has recently been helping me, with my Chronic Fatigue Syndrome (CFS; overlaps or may be the same as long covid) that I have had since 2006 after a cold from which I never felt like I recovered (fatigue). I have gone from averaging maybe 1-2 hours of slow desk work if I am careful, and few to no social activities, to being able to go to church again (once so far) and do 4-5 hours/day of slow desk work, for about a month now 5-6 days a week. I'm really hoping to be employable again in the future.
The Dr. prescribed it off-label (they are also doing a study and a doctor had a very positive personal recovery experience with it). My dose is 1mg ONCE per week, then two, then three, building up to 6mg ONCE per week.
I mention this in case it is helpful to anyone else.
I've caught COVID probably 6 times since the outbreak (and I'm vaccinated, 3 shots), each one is worse than the previous one. And since the outbreak, I've been experiencing debilitating brain fog and fatigue and depression among others. Most of times at work I'm looking at colleagues right in the eye and seemingly listening intently while they're talking but I'm not catching a word of it, I'm just wandering somewhere else or thinking about my bed at home.
> Most of times at work I'm looking at colleagues right in the eye and seemingly listening intently while they're talking but I'm not catching a word of it, I'm just wandering somewhere else
It is happening to me. I thought it was some late-onset extreme ADHD.
I had some bullshit virus that the kid bought home about six months ago, and it royally fucked me up - since, I have been persistently lightheaded, get tired walking up a flight of stairs, and constantly feel like I need to sleep - but the cruellest thing is that I can’t. Since I had whatever, I haven’t been able to sleep more than 2-3 hours per day - I fall asleep, snooze groggily for ten minutes, wake up, repeat. It’s getting to the point that I’m not even bothering to try, any more, as it’s just a waste of time and energy. I find myself not having the energy to eat - it’s like trying to ram cardboard down my throat. I’ll cook for the family and by the time I’m done, sticking food in my mouth seems impossible. I’ve lost about 20% of my body mass since. I push too hard and I faint, or at least have to drop to the floor as the tunnel vision sets in lest I batter myself when I drop like a broken marionete - I’ve demolished a coffee table and a wardrobe, somewhat painfully.
Add to that that I have a toddler and live off grid and absolutely cannot get a break, and that my wife believes I am being a ridiculous hypochondriac, and… it’s hard.
I just have to believe it will get better at some point. Doctors reliably tell me there’s nothing wrong, and offer me anxiety medication. I’m not anxious - I’m just tired.
Keep in mind that POTS is specifically heart rate and not blood pressure. Blood pressure drop is orthostatic hypotension. They can both exists or one or the other, but are not the same thing and POTS is a specific term not an umbrella one.
Oh. That’s interesting. Thank you. Yeah, my BP has been abnormally low since this thing and I am often finding I have a ridiculously high and weak pulse from nothing - usually when I stand up from tying my shoes, or picking up my daughter - I often have to grab something and breathe for a few moments while I break out in a cold sweat. And the whole “heavy lower legs” thing rings very true too, along with the constipation - fun side effect is I have developed horrendous haemorrhoids.
I’ve got into the habit of changing posture slowly, as it makes it far less likely I’ll keel over.
It’s pretty distressing as at the start of this year I was the kind of guy who would scurry up and down a mountain to watch the sunrise before breakfast, and now I’m struggling to walk to the car from the house.
And I can’t fucking sleep - again, it’s my heart rate - lying flat seems to send it soaring, and I have to wedge myself at a very specific half-reclined angle that invariably results in a sore neck for it to not.
I apparently have sarcoidosis. The last flareup was bad enough to get a diagnosis. But docs think based on my history that I've had it for 20 years.
What I think is viral infections can cause low grade immune system dysregulation. Nominally there isn't anything obviously wrong. But it shows up in feeling crappy and having stress intolerance. It's a problem because medicine doesn't have any tests or treatments for that.
It's totally ass. However some people do get better after a year or two.
If you havent tried melatonin, give it a shot; but critically, use a low dose, like 3mg sublingually. In my experience, people often take too much and have counterintuative results.
Time to try a graded exercise routine on days you feel better and mitochondrial supplements and cutting out gluten and eating more dark leafy greens and vegetables in general and organ meats and praying it works lol
also do whatever you can to sleep more that's probably part of a problem that makes itself worse
Something relatively easy you can try is to get your body into ketosis, where mental clarity and energy levels are greatly improved. While I don't think it's good for most people (it's a pretty antisocial diet) I'd jump right in in your situation.
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I had myocarditis, caused by an infection, likely a covid strain but unproven as it was so mild I never thought to get tested. No exercise for at least 3 months and lots of R & R. I did this but I've never fully recovered. I still get pretty bad post exertional malaise, cant tolerate caffeine or alcohol and my sleep is terrible - especially after pushing too hard. Extremely shallow and I wake up a lot. The real nail in the coffin is something about heavy lifting really tips me over the edge. I can do some (very) light cardio infrequently on good days.
Doctors have been next to useless in helping, I guess because there isnt any real treatment for what is probably a multi factor systemic problem.
Whats been fascinating is my garmin fenix watch has been able to track how I'm feeling to a T. HRV readings have been particularly helpful in knowing whether I should be really dialling back activity on a given day or allowing myself to push a bit more. Ive fallen from a baseline of 85-95ms average to 40-60ms average which is really interesting. I'd love to see what macro analysis of their data would reveal around illnesses such as mine. The sleep functionality has also been quite illumunating. Getting 8 hours used to reset me to 100 body battery, now im lucky to get back to 80 after 11 hours sleeping.
Im not alone and I'm lucky enough to have a mild case but it still sucks and has robbed me of a big chunk of my previous life and personality. Im really hoping stories like mine begin to trigger trials and further treatments.
It has gotten particularly bad since a cold I got in early September. My Garmin's body battery hasn't been back to 100% since then -- typically waking up at 50% after ten hours in bed.
I blamed sleep apnea for these symptoms even though the stats from the CPAP machine look great, but after reading TFA I'm questioning it.
Any exercise more intense than walking means multiple days of recovery, which has led me to pretty much stop cycling these days -- down from 90 km/week just 18 months ago. It is a shitty experience.
I think you'd want to eat an extremely clean diet to lower inflammation and get your immune system to turn off. I'm no expert, but that's the way I'd think about it
With the current state of medical care basically anywhere you either have some cookie cutter ailment or you're more or less completely on your own. Nobody has time to spend looking into it nor wants any liability for suggesting the wrong treatment given that they have no idea what's wrong. Even with the common well researched stuff they're making educated guesses half the time.
Too many details to go into but I highly recommend an OATS tests. And look into the bornfree.life (website) website for a wealth of information by people doing their best to solve these complex puzzles.
- Like you already described, monitoring heart rate variability and associated 'body battery' with a smartwatch.
- Make a log of good and bad days, note the specific symptoms. See if there are any patterns to be found that you perhaps wouldn't notice otherwise.
- Read up about POTS / orthostatic intolerance and dysautonomia in general. The book / guide "The Dysautonomia Project" is a great read. Do a simple standing test [1] a few times (when you're feeling good and bad) to see if your heart rate increases and keeps increased, even if it does not meet the criteria for POTS.
- Do breathing exercises, humming / vocalization, ear massages and meditation to activate your vagus nerve. That might help with dysautonomia. There are lots of videos / guides to be found.
- Increase salt intake if that is not a risk factor for you. That might help with orthostatic intolerance. Find a good balance of different salts in the CFS community.
- Keep light walking and (if you can) light strength training as much as you can without triggering too much PEM.
- Be outdoors in the sunlight. There are many small studies showing a correlation between getting better from CFS and sunlight. An infrared lamp might help a bit as well, but don't buy into the fancy fads. I personally prefer a simple infrared bulb because of the warmth it gives which is great in winter on its own. It's also more similar to the sun with a continuous spectrum (although relatively low intensity). Many studies emphasize illuminating your brain.
- Be aware that food supplements will probably not help too much and cost quite a bit. But you might get lucky and find something that helps. It's hard to separate correlation from causation though. It might also feel rewarding that you're busy trying something. The placebo effect might help similarly.
- Get your ferritin levels checked, and a some other basic tests around CFS as well. See if your ferritin level has been recorded in the past as a baseline, because the one-level-fits-all approach is flawed (and especially for women). 15 (women) or 30 (men) µg / L is probably too low, even if that's considered 'normal'. Lactoferrin might help your body regulate iron levels and keep pathogens from using iron, but the scientific evidence is pretty weak.
- In case of deficiencies supplement with amino acid or organically bound metals, for example iron bisglycinate. Something like Thorne Basic Prenatal at 1/3 or the recommended dosage (1 pill per day) is quite cheap with many nutrients that might help a bit in a form that absorbs well.
- Creatine is widely used in sporting performance enhancement by facilitating ATP recyling and acting as buffer. Because it's so widely used it seems very low-risk and applicable to CFS. There are some very small scale studies reporting positive effects.
- Other things that are doubtful to help, but perhaps worth trying: wide spectrum probiotics, NAD+, D-ribose, nattokinase / lumbrokinase (but be careful and use a small dose), NAC, ALC.
[1] https://www.standinguptopots.org/resources/diagnosing-pots
There's a persistent myth that testosterone production in men falls as a natural part of aging. The truth of what happens to "normal" levels with age is more complex [1] but what is known is that in some people testosterone production falls dramatically and permanently at some point at some point in their life, sometimes after an injury or infection, sometimes for no discernible reason, and it can cause exactly the symptoms described here. When that happens it's not a "male menopause". It's not normal aging. It's pathological and it's treatable. The reason to get your level checked even if you don't have symptoms is so you know your personal baseline and can tell if a sudden change happens later.
The situation in women is more complex, and testosterone treatment carries different risks, but androgens are very much part of healthy female hormone production.
It's early days but there's been some interesting research about a possible mechanism for permanent changes in androgen production after COVID [2].
I'm not saying this is the only cause of long COVID. There's certainly more than one mechanism, and what helps one person can harm another (as with the graded exercise program mentioned in the article, which was entirely counterproductive for me). But it is one of the possibilities and if it were routinely checked for in people reporting these symptoms it would have spared me a few years of hell.
1. https://europepmc.org/article/pmc/pmc4190174
2. https://pmc.ncbi.nlm.nih.gov/articles/PMC10507138/
Viral infections and stress can cause multiple hormonal issues, from testosterone to insulin to thyroid, out of which a lot will be skipped or only a partial picture will be given during average blood test (i.e. just total test or TSH).
Unfortunately, most docs will just skimp over the results or tests to be done, so the things like "I'm tired a lot" just get handwaved away. (Un)Fortunately, a lot of friends brought their blood tests results to me since I've spent quite a long time biohacking, and nearly always it was the same: the doctor didnt do a full panel but just a partial one, said something is okay or mid, when it turned out that a full panel indicated a much bigger issue. Hell, one of them would even fall unconscious nearly once a month and multiple doctors said "it's just stress" when it turned out the person was hypoglycemic and their sugar and blood pressure would crash.
I assume the "defaults" vary from country to country, and as you say, from clinic to clinic.
Dead Comment
This is also true in a very direct and literal way, where a Measles infection can make you vulnerable again to past diseases, because of the immune cells it attacks.
https://www.frontiersin.org/journals/molecular-neuroscience/...https://pmc.ncbi.nlm.nih.gov/articles/PMC4061860/
Other things help me that are specific to me but those definitely had a rather dramatic impact on me (after an initial period of feeling like I'd been hit by a train -- it tended make me experience my fatigue up front instead of as PEMS and also reduce the symptoms of it somewhat)
Taurine is great too, there's also TUDCA which is somewhat legendary in some parts of the fatigue community, very good supplement.
Hope this helps! <3 Doing the personal work of letting go of emotional stressors and ceasing all stimulant use when possible (I know it sounds horrible) was also really hard and made a big impact over the years for me.
Still not perfect but so much more functional than I used to be. <3
The Dr. prescribed it off-label (they are also doing a study and a doctor had a very positive personal recovery experience with it). My dose is 1mg ONCE per week, then two, then three, building up to 6mg ONCE per week.
I mention this in case it is helpful to anyone else.
It is happening to me. I thought it was some late-onset extreme ADHD.
Dead Comment
Add to that that I have a toddler and live off grid and absolutely cannot get a break, and that my wife believes I am being a ridiculous hypochondriac, and… it’s hard.
I just have to believe it will get better at some point. Doctors reliably tell me there’s nothing wrong, and offer me anxiety medication. I’m not anxious - I’m just tired.
All these are common symptoms of POTS/dysautonomia, but the one that stands out for a potential POTS diagnosis is the persistent syncope.
You can confirm this diagnosis in 25 minutes with a simple home blood pressure cuff: https://www.amazon.com/Clinically-Validated-Unlimited-Pre-Fo...
Test instructions here: https://batemanhornecenter.org/wp-content/uploads/2016/09/NA...
There's no surefire cure, but POTS is very treatable. I made an account just to leave this comment.
I’ve got into the habit of changing posture slowly, as it makes it far less likely I’ll keel over.
It’s pretty distressing as at the start of this year I was the kind of guy who would scurry up and down a mountain to watch the sunrise before breakfast, and now I’m struggling to walk to the car from the house.
And I can’t fucking sleep - again, it’s my heart rate - lying flat seems to send it soaring, and I have to wedge myself at a very specific half-reclined angle that invariably results in a sore neck for it to not.
Thank you. I’ll look into this.
What I think is viral infections can cause low grade immune system dysregulation. Nominally there isn't anything obviously wrong. But it shows up in feeling crappy and having stress intolerance. It's a problem because medicine doesn't have any tests or treatments for that.
It's totally ass. However some people do get better after a year or two.
also do whatever you can to sleep more that's probably part of a problem that makes itself worse