Long Fatigue: The exhaustion that lingers after an infection
Comments
marliechiller
david-gpu
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.
moffkalast
> Doctors have been next to useless in helping
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.
mattclarkdotnet
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.
marliechiller
Thanks for the advice - do you use melatonin every night or just nights where you know youre going to be restless?
farresito
Not OP, but I've been using melatonin every night, no exception, and it's been very helpful. I use a much lower dose (between 0.3mg and 0.5mg), and it's worked completely fine, so I would suggest that you start very low and only increase if you really need it.
diegs
+1 to 0.3mg, larger doses can lead to nightmares and other issues.
It also may take longer to have an effect than is commonly said. For me, it's ~3-4 hours. I'm a natural night owl but 0.3mg melatonin at 6pm has me falling asleep on the couch at 9:30-10pm.
farresito
That's interesting. For me it takes 30 minutes, give or take, to start to feel sleepy, and I'm also a night owl :-)
nightowl_games
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
marliechiller
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
nightowl_games
You sure you don't have sleep apnea? Try heavy doses of vitamin D? Like 4x daily recommended? Ice baths/wim Hoff breathing techniques? I feel for you, I'm just brain dumping all my tangential knowledge.
marliechiller
Possibly. I will investigate that route as why not at this stage.
My most annoying symptom is when I exercise, sleep the day after and subsequent couple of nights (not the night of, strangely), is completely compromised. Really shallow, hot sweats, waking up multiple times etc. Im trying to understand if this is dysautonomia or PEM at the moment. Most of my fatigue follows from having this disrupted sleep I think and I dont have flu like symptoms typical of PEM, but it does feel like im having an allergic reaction. Very strange
herbst
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.
grosswait
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.
Confiks
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.
[1] https://www.standinguptopots.org/resources/diagnosing-pots
omnicognate
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.
thecupisblue
It's not just testosterone.
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.
RaoulP
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.
omnicognate
[flagged]
lordnacho
It doesn't look grey to me, and I didn't vote.
If I were to guess, HN doesn't like your comment because it feels like a certain type of manosphere article. Some sort of cross between self-improvement and advertisement, offering a potential quick fix. Includes a "the masses don't know this, but here is the truth" kind of thing.
But that's just a guess.
omnicognate
I guess that's the "stigma" I referred to. It's not very rational, though. To view it as "self-improvement" would be to not take the symptoms seriously, and I would hope as a society we've moved past that. As for a "quick fix" - well, for some people (certainly not everyone) it is that. It's not without its downsides, though. I'm going to be injecting myself for the rest of my life, a commitment I underook with my first dose (as natural production ceases, so coming off it is not easy). There are major concerns for fertility too, for those to whom it matters
As for "advertising", I don't stand to gain anything from publicly and pseudo-anonymously sharing my experience of a medical treatment. If anything there are risks to doing that.
And as for "the masses don't know this", it's more "your doctor probably won't test you for this". Look up the symptoms of hypogonadism, compare them to those described in this article and observe that the article makes no mention of it. If you know someone suffering these symptoms, and most people do, see if this diagnosis has ever been considered. The answer is probably no.
It's not grey now as it's been voted back up, but it went down to -3 in a few minutes after posting, by far the strongest negative reaction I've had to a comment.
lordnacho
> It's not grey now as it's been voted back up, but it went down to -3 in a few minutes after posting, by far the strongest negative reaction I've had to a comment.
I've long suspected there's some kind of automation going on. I've written a number of inoffensive comments that shouldn't really cause a reaction from anyone, but the score goes down, then back up over a short period. Not sure why there would be an algo for that, but it feels like it.
kcplate
I doubt it’s automation, it’s just the differences in HN audience as the day wakes up. Differences in sensibilities in different parts of the world.
zusammen
The cultural left is becoming increasingly like the right in some ways and I’m not sure how I feel. On one hand, this might be helpful because the imbalance between a restrained left and an obnoxious right has been pushing the Overton Window in conservatives’ favor for decades and I’d be happy to see that stop. On the other hand, it upsets me to see other leftists be misinformed. Low T is a real health problem for a lot of men—-this isn’t manosphere bullshit.
I stopped calling myself a liberal in the 90s because I went to Europe for business a lot and liberal, funny enough, means conservative over there. I never really felt progressive fit—-too moderate, because it assumes all you have to do is sustain progress, but that speed isn’t crucial. And I am still on the far left but I feel less at home on the left since the shamefully misinformed reactions to the Simchat Torah massacre. I don’t support Israel’s far right government, but most of the people murdered didn’t either, and watching high school kids in Palo Alto chant a literal genocidal slogan was a wake-up call.
aguaviva
Watching high school kids in Palo Alto chant a literal genocidal slogan was a wake-up call.
Except most likely it wasn't. An actual, "literal" genocidal slogan, that is.
The simple, boring fact is -- whatever import along those lines (that you see in whatever they were saying) probably wasn't what they intended it to have.
Most of the ones using it are simply, as you are correctly pointing out -- grossly misinformed.
zusammen
You raise a fair point. The likelihood that the high school students knew the original context of a slogan used with very ugly intent by both sides of an even uglier conflict is… not high. It’s more of a sign that kids are poorly educated than anything else.
Etheryte
Don't whine about imaginary interet points. You say you're not complaining, but that's all your comment is.
omnicognate
It's really not. I've had a couple of replies that have helped me understand the view of those downvoting. I don't agree with it, but I have a better picture now.
pastage
I do not like to get downvoted but it is usually a failure on my part to set the right tone. I think your comment has a sleazy internet video ad vibe.
For sure medicine for hormonal levels can help a lot. Doctors miss diabetes and people die so of course you are right that testosteron is probably missed. The difference is accessibility everyone can check if they have high blood sugar by themselves, bad testosteron levels though the symptoms are not as clear there most certainly is not a 50% correlation between the symptoms and what you push.
So what would have worked for your comment is an anecdote maybe talk about it as the low possibility it is.
omnicognate
I don't mind being downvoted at all, and have never complained about it (and didn't here). I was just curious why.
I think you're right that people perceived a "sleazy" vibe. The sibling referred to "manosphere" and "advertising".
I wonder whether that reaction would have been different if the topic had been different. I.e. to what extent the reaction was due to the wording vs the subject matter. I think tesosterone treatment itself is seen as somehow sleazy, and I referred to that as a "stigma". I speculate that that perception has something to do with the fact that in 4 years I was never checked for an obvious potential cause to my symptoms. That experience is one reason I've chosen to be quite open about this treatment. I'd probably never have found it if it hadn't been for people I know talking about it.
I'm not sure it is a "low possibility", BTW. The prevalence and causes of hypogonadism aren't very well understood but it is common and may be rather more common since COVID. There are valid concerns about over-diagnosis, but under-diagnosis of this condition also carries risks.
MaxBarraclough
Can't speak for the downvoters, but your claims appear to be at odds with what Wikipedia has to say on the matter, and Wikipedia is usually a reliable source on medical consensus.
From https://en.wikipedia.org/wiki/Late-onset_hypogonadism :
> Testosterone levels are well-documented to decline with aging at about 1% per year in both men and women after a certain age; the causes are not well understood.
omnicognate
That isn't describing normal aging. It's describing late-onset hypogonadism, which occurs in a subset of men. To see what happens to testosterone levels across the population, see the graphs in the first link from my original post. Through the 40s, 50s and 60s, variance increases but average levels don't significantly decline.
The condition I have could be late-onset hypogonadism (i.e. a slow drop over time) but based on the timing and nature of the onset of symptoms (and my age) is more likely to be a sharp drop in production following COVID. The difficulty in determining the latter for sure is that my levels before COVID were not known. This is also a challenge with determining the epidemiology of such sudden changes. Levels would need to be observed across the drop in a sufficient number of cases, but people are generally only measured after symptoms appear. Nonetheless, such drops are known to occur both due to injury and infection, and idiopathically.
southernplaces7
Often, nothing at all is objectionable about a downvoted post. I've read many that are perfectly reasonable, intelligent and specific to an issue at hand, but they still get downvoted because they "went against" some particular hive mind tendency of the kinds of people who frequent this site and who were interested in that post.
It's an irrational response in many cases, and an ironic one in your case because what you wrote sounded decently reasonable, while i've seen other comments on other threads recommend all kinds of questionable nootropic and hallucinogenic drug therapies for X and Y reason, with no discernible downvoting. Those were "correct" I suppose.
Good idea: Don't write a comment with potential downvotes in mind. Use reasoned thinking, but also just say what you feel needs to be said and fuck the nitpicking you might get from pedantic idiots.
kcplate
> Often, nothing at all is objectionable about a downvoted post. I've read many that are perfectly reasonable, intelligent and specific to an issue at hand, but they still get downvoted because they "went against" some particular hive mind tendency of the kinds of people who frequent this site and who were interested in that post
For me, I simply refuse to trade in the comment karma currency here. It’s so wishy-washy. I may post a comment or opinion that HN hates, but I am not going to self-censor an opinion on a topic I want to share just because I think might be HN controversial and receive downvotes. Also, I specifically want to read a heavily downvoted comment because often there are sometimes interesting takes in there. Also the dimming to me is annoying, it’s akin to shouting down a speaker rather than using reasonable debate and conversation to explore a topic.
Finally…I refuse to downvote any comment. Who am I to contribute to censoring a speaker for other people?
southernplaces7
Agreed on all points, particularly about making a point to read downvoted comments because they might be unique takes. Because arbitrarily downvoted comments can become invisible or near invisible, on general principles i've never once downvoted one, even those whose opinions I absolutely hate, though I do sometimes upvote, like in the case of your reply, or, especially, comments that give me a good laugh or food for thought.
meiraleal
HN has a tendency to frame issues like fatigue as external or systemic problems, not individual factors like lifestyle or health
omnicognate
You're suggesting my fatigue would have been better treated by lifestyle changes? Thing is, I tried that. I tried graded exercise as prescribed by a consultant. I saw a psychiatrist. I worked on diet and stress management. I tried supplements and probiotics. For 4 years I tried, in good faith, everything suggested. Then, at my own instigation, I was tested, diagnosed hypogonadic and prescribed testosterone, and now I am fully cured.
Some things are systemic.
sabbaticaldev
lower testosterone is a lifestyle issue that can be fixed easier with prescribed testosterone but that’s a shortcut that has its own perils
omnicognate
There's a certain frustration to being told your condition is a "lifestyle issue" by someone with absolutely no knowledge of your lifestyle. In my original post I linked an Imperial College paper about a potential mechanism for permanent testestorone reduction after COVID due to death of GnRH system neurons. What lifestyle change do you propose that would cause these to regrow?
snikeris
Like infertility.
Retric
Infertility shows up with both low and high levels of testosterone. So for some people taking testosterone actually increases sperm production while it harms others.
The issue with these kinds of discussions is people talk about “low T” without defining a specific number as low and normal.
omnicognate
Very true about the lack of a number, but that's part of the problem domain. A number that is healthy for one person is associated with symptoms of hypgonadism (that respond to treatment) in another. Complex dynamic systems are involved, and serum testosterone level is a single, crude measurement.
That's why I'd recommend anybody to get their levels of testosterone and other hormones checked periodically, so that any sudden change can be identified (and perhaps we can collect data to better understand the epidemiology of such sudden changes).
omnicognate
Yes, this is absolutely a risk. Not one that matters to me, but something anybody considering it should be aware of.
Terr_
> "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.
otomac
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.
https://www.frontiersin.org/journals/molecular-neuroscience/... https://pmc.ncbi.nlm.nih.gov/articles/PMC4061860/
tbalsam
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
lcall
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.
madaxe_again
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.
errnoteqnil
This sounds like POTS (Postural Orthostatic Tachycardia Syndrome).
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.
jhogendorn
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.
errnoteqnil
Fair enough! My original comment was more brief than precise...
If it helps the original commenter, and anyone else reading who's suffering from similar issues:
The umbrella term for syncope and fatigue when sitting up or standing is orthostatic intolerance (OI), and it's commonly seen in Long Covid and other post-viral illnesses. Both POTS and orthostatic hypotension can cause OI.
To the original commenter, there's a good chance you've already been tested for irregularities on a CBC and CMP, but a thorough doctor would generally also order tests for your thyroid, testosterone, iron, B12, and Vitamin D levels. You should probably also get screened for diabetes, autoimmune, and adrenal issues. These labs could help identify simpler, treatable causes of your OI and other issues.
But if all that is normal, testing for orthostatic issues like POTS and orthostatic hypotension would be extremely warranted for you as well. And it really can be as simple as an at-home test! A lot of doctors will only diagnose POTS or orthostatic hypotension with an official tilt-table test, but with the rise of Long Covid many specialists are willing to diagnose and treat patients based on simpler and cheaper at-home testing. And the initial treatments are often as simple as drinking additional fluids and electrolytes and wearing compression garments.
It took me several debilitating years and at least a dozen doctors to get diagnosed with POTS and orthostatic hypotension, and if any of them had suggested I buy a BP cuff and spend 30 minutes doing a lean test it would have saved me an awful lot of trouble...
madaxe_again
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.
Thank you. I’ll look into this.
errnoteqnil
You're welcome, I'm sorry for what you're going through. You probably will eventually need to find a specialist who works with patients with dysautonomia or Long Covid but there's plenty of stuff you can do on your own or with a friendly PCP (or maybe more realistically, with a PCP who you can persuade to order the appropriate testing).
This does all sound like POTS and orthostatic hypotension though, maybe with other issues mixed in, but that's a good place to start.
Hopefully my other comment in this thread is helpful!
Gibbon1
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.
jakeogh
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.
Madmallard
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
marliechiller
can you explain the dietary advice like cutting out gluten? is that to reduce inflammatory responses?
totallywrong
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.
sabbaticaldev
about the appetite, have you tried weed? the munchies might bring you back some joy eating
chakintosh
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.
profsummergig
> 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.
bun_terminator
[flagged]
mglz
Why do you focus on the vaccine and not the novel, highly virulent virus which has killed tens of millions and disabled hundreds of millions? What makes it more likel for you that the vaccine causes this and not the virus?
southernplaces7
Well, there's also the anecdotal problem here of someone having taken all the proper vaccine steps here, and still getting multiple bouts of increasingly severe COVID.
Doesn't peak so well of the vaccines and all the insistence they received.
piva00
> Doesn't peak so well of the vaccines and all the insistence they received.
It's one anecdote, the vaccines were never touted as 100% effective, statistically some people would not have the complete benefits, some others would have adverse reactions. That's how it works, that's how it was talked about. People were encouraged to take it because statistically it was proven to be effective, and studies done post-facto confirmed it.
Is it 100% effective? No, absolutely not, no medicine is and I have no idea why people still create this straw man...
ripe
I read it as the parent poster is addressing a likely comment asking if they had not taken the Covid vaccine.
They're not blaming the vaccines, as you seem to be implying. The Covid vaccines developed were effective and highly recommended for very good reasons. No one ever claimed that they would be symptom-free for all people.
sabbaticaldev
logically speaking, 3 shots might have caused the post COVID effect
bregma
Funny, I read it as "I've caught COVID even though I was fully vaccinated, and these problems stemmed from COVID" rather than "vaccines caused these symptoms!!1!eleven!".
Mordisquitos
I'm vaccinated, 5 shots. I had COVID once, it was very mild. I'm fine.
pjerem
Honestly, I feel like It’s pretty frightening that we may now have 5 to 15% (I didn’t find a consensus on this number but it seems that’s in this range) of humanity concerned with this exhaustion. This goes from making us "permanently" impaired and, maybe worse, more "stupid" (say, less clear mentally).
I really don’t think our societies are ready to handle that.
Though, I’m glad their research seems to go in the right direction. Then having a "solution" would be a huge step forward but we may also need a solid and simple way to diagnose the condition beforehand.
PaulKeeble
In the UK a recent survey of medical staff has 35% of them suffering Long Covid, those are the ones still employed there are many who have been fired as their Long Covid is too severe to work. It's notable only 10% have been diagnosed by their colleagues, a substantially higher percentage the for non medical Long haulers.
We are at about 20% in the countries still bothering to count and the front line roles like teachers and medicine are getting hit faster. Most of this is since 2022 and overwhelming Omicron onwards. In the past year for example the number of kids with Long Covid doubled.
It's not just fatigue either despite what the BBC is presenting, it's completely systemic in every organ including the brain. PEM and the crashes it causes can permently reduce how much energy you have and if you keep doing that you can die as your gastrointestinal system looses the ability to digest food.
There are no treatments, there is no research money now either. You get Long Covid you are on your own there is no medical help to be had and no government acknowledgement there is a problem and your chance of a diagnosis from healthcare is very small.
teractiveodular
Those are some pretty extraordinary numbers. Do you have any cites to back them up?
PaulKeeble
This is the NHS questionnaire study https://pubmed.ncbi.nlm.nih.gov/39358009/
This on 10-20% of infections leading to long Covid https://www.thelancet.com/journals/lancet/article/PIIS0140-6...
Here is one prevalence study from Australia. There are loads of these https://onlinelibrary.wiley.com/doi/10.5694/mja2.52473
Then there is the global estimate of about 400million https://www.nature.com/articles/s41591-024-03173-6
meiraleal
> In the UK a recent survey of medical staff has 35% of them suffering Long Covid
Did they also ask how many people felt tired and in need of vacations? Love me some capitalism, re-framing labor exploitation again.
purplethinking
I probably have a milder version of post-infection fatigue, it's not as bad as mentioned in the article (like having run a marathon), but it means that I never feel fully well slept no matter how many hours I've slept, maybe once or twice a month. Those days I almost cry from joy and don't really want to waste them by working, just want to exist and take in the moment. I can still work fairly well when I'm tired and I'm not physically exhausted, but this is enough to have essentially caused my divorce, because I don't have the mental energy to put into fixing and maintaining our relationship after a workday, and on top of taking care of our kid.
It's sad to see my productivity drop as well compared to my past self, and I'm very worried that I won't be able to handle the grueling interviewing process when I need a new job. Self conscious that they will see the dark rings under my eyes and realize I won't be able to pull the hours they need.
marliechiller
Sorry to hear about your divorce. I found the brain fog to be one of the worst factors in day to day life, especially with work. Thoughts of "did I miss this bug because of brain fog or was this something anyone would have missed" often run through my mind. Its hard to get people that havent experienced anything like this to really understand and the self doubt can cause a lot of stress. Sometimes its akin to early signs of dementia.
I cant offer much support but youre not alone in suffering this
purplethinking
I'm thankful it's not worse, I have a friend who gets a fever from taking a short walk. In fact, since opening up it seems that many people are battling some form of fatigue or sleep issue.
It does feel like dementia, you're right. In the past year I've lost my reading tablet, a $300 pair of head phones, a jacket, two pairs of gloves and a hat, two towels at the gym etc. I just keep losing stuff. What's weird is I can still solve complex programming problems, but it's definitely impacting my memory.
cenamus
If you like thinking about those things, I recommend reading about CMV.
https://denovo.substack.com/p/cytomegalovirus-the-worst-herp...
These non-fatal (or even close to unoticeable at all without statistics) diseases that still have massive world-wide effects are fascinating
dotancohen
I had an CMV and EBV related sickness in 2017, it wasn't until 2021 or 2022, well into COVID, that I returned to anything near my previous ability to run, work late, or concentrate.
jmyeet
We will be grappling with the impacts for at least a generation. To name a few:
1. For a time we had the largest impact seen on reducing poverty than we've seen in decades [1] but it was temporary. This goes against particularly American dogma against a social safety net. Another example of this was Bolsa Familia [2]. So we can no longer ignore that we, as a society, are choosing for people to be poor with all the negative externalities that comes from that;
2. Over a million Americans died from Covid yet we have a significant percentage of the population who think that Covid isn't real;
3. mRNA vaccines are a medical miracle that have been in the works for decades [3] and quite literally saved tens of millions of lives worldwide [4] yet antivaxxer sentiment persists [5], even with people who have a college science education;
4. We essentially returned to work to make the wealthy even wealthier and ditched our masks, which cost lives particularly for those who are immunocompromised and/or cannot take a vaccine for medical reasons. This starkly highlights how we, as a society, make a calculation as to how much inconvenience we're willing to tolerate over people dying.. This isn't new. For example, tens of thousands of Americans die every year in road accidents, many of which are preventable (eg excessive speeding, DUIs) and we just accept that's going to happen; and
5. Additionally, and this goes to your point, Covid was a mass disabling event. How our society treats the disabled was already disgraceful and it doesn't get much attention. A disability largely means society wants to discard you, or at least sweep you under the rug so other people don't have to think about you. I am of course talking about the so-called "ugly laws" [6]. While we largely don't have them now, it still exemplifies how we treat disabled people.
[1]: https://www.cbpp.org/research/poverty-and-inequality/expirat...
[2]: https://www.worldbank.org/en/news/feature/2010/05/27/br-bols...
[3]: https://www.nature.com/articles/d41586-021-02483-w
[4]: https://www.thelancet.com/journals/laninf/article/PIIS1473-3...
[5]: https://www.cidrap.umn.edu/anti-science/us-survey-reveals-gr...
[6]: https://www.nationalgeographic.com/history/article/history-o...
nradov
It's so weird how some irrational germaphobes fetishized masks over a minor respiratory disease with a >99% survival rate. Masks are marginally effective in preventing transmission, if at all. And since SARS-CoV-2 was always destinated to become endemic the masks were totally pointless anyway. All of us are going to occasionally get infected no matter what we do.
Tarq0n
Lowering the transmission rate is an intervention aimed at lowering the immediate burden on hospitals and emergency medical services. At the time that was completely necessary.
nradov
It was never "necessary". That's just an opinion. There have been other times when hospitals were overwhelmed by respiratory viruses but mandates weren't imposed on the public. And there is no reliable evidence that face masks actually reduced the burden on hospitals.
https://time.com/5107984/hospitals-handling-burden-flu-patie...
marcosdumay
> mRNA vaccines are a medical miracle that have been in the works for decades
Yes. The next time something like COVID happens we will have the capacity to mass-vaccinate people on a time-frame equivalent to April 2020 for COVID-19.
Whether we will is not clear, but they are this incredible.
ggm
Wasn't this discussed by Oliver Sachs? The post encephalitis sufferers?
s5300
As the article somewhat gets into, fatigue is a terrible descriptor for the litany of issues that can ravage one post-infection.
Seemingly mild mono (Epstein-Barr) absolutely ruined the brain of one of the most talented dual-major Mechanical/Electrical engineers at my university in his last year. Saw him crying in more than one of our professors offices after he tried to come back because he couldn’t think straight enough to do 8th grade math anymore. Never recovered to my knowledge of a few years after, but it’s been a few years since I’ve heard anything of him. Medical imaging, at that time, purportedly showed nothing wrong with his brain. No help to be had.
power
Sadly I'm in the same boat, for years now. Fatigue is such an inadequate term. Can't even sit up for long without getting exhausted. Still trying treatments but to no avail so far. The impact of Long Covid seems to be drawing a lot of eyeballs to this though so I'm hopeful something will be found.
It's taught me patience and empathy. I used to teach others how to program and when people couldn't get something I presumed they weren't trying hard enough. I get it now. Now I read the requirements or exercise or puzzle or whatever and there's just nothing where once there was a bubbling and filtering of ideas or whatever we call thinking.
There was a recent survey paper in Nature covering this syndrome that can triggered by various infections https://www.nature.com/articles/s41591-022-01810-6
Be well, and get your own Illness Benefit Insurance policy
smallerfish
Epstein-Barr is widespread - it sits latent in the human body, occasionally and opportunistically reactivating. It's detectable in 90% of humans, though most people don't have symptoms. According to functional medicine doctors I've talked to, it's a significant factor in a lot of what is understood to be long covid. I've had two reactivations in the past 3 years, each of which lasted ~6 weeks. The immune system does eventually get on top of it (assuming no other conditions keeping your immune system under siege) but while it's running rampant, you really are operating at just a fraction of your capabilities.
croes
Epstein-Barr infection has also been found as a trigger for multiple sclerosis.
https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...
fragmede
fuck that's heartbreaking. that's a fate worse than death
dotancohen
If you think that's a fate worse than death, then I suspect you've never actually died.
Alex-Programs
I've had something similar (post-concussion syndrome) that's slowly improving, though I'll never quite be the same.
You live a life where you're intelligent and capable and happy and then it's torn away from you. You remember when you were capable, but you can't do it anymore. Somehow the things you learnt on a whim before it happened become your defining knowledge. What was trivial becomes incredibly difficult; what was difficult becomes impossible.
I'm mostly over that now, fortunately. But if it were permanent I'd see it as a fate worse than death.
fragmede
to be left alive, a shell of your former self, know that you used to be capable of, but no longer are. not being able to hold a thought in your head when previously, your were one of the smartest in the room. being so exhausted all the time that just leaving the house is an accomplishment, when previously a day of snowboarding would be a blast. the absolute impotence of it. is life even worth living, knowing your former glory has been robbed by a virus that some people think was a fuss over nothing?
can you imagine what it's like to need other people to do basic life shit for you, because you're now a disabled invalid, incapable of being self sufficient. needing to be waited on, hand and foot. the worst cases aren't too far off from polio needing an iron lung just to breath.
the sweet release of death would be less cruel.
oldpersonintx
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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.