6 ms·
Long Fatigue: The exhaustion that lingers after an infection
- encom 2y agoReadable link: https://archive.ph/isElR https://archive.ph/isElR
- s5300 2y agoAs 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.
- croes 2y agoEpstein-Barr infection has also been found as a trigger for multiple sclerosis. https://med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis.html https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...
- power 2y agoSadly 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 https://www.nature.com/articles/s41591-022-01810-6 Be well, and get your own Illness Benefit Insurance policy
- fragmede 2y agofuck that's heartbreaking. that's a fate worse than death
- dotancohen 2y agoIf you think that's a fate worse than death, then I suspect you've never actually died.
- fragmede 2y agoto 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.
- Alex-Programs 2y agoI'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.
- smallerfish 2y agoEpstein-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.
- pjerem 2y agoHonestly, 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.
- cenamus 2y agoIf you like thinking about those things, I recommend reading about CMV. https://denovo.substack.com/p/cytomegalovirus-the-worst-herpesvirus 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 2y agoI 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.
- PaulKeeble 2y agoIn 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.
- oldpersonintx 2y ago[dead]
- ggm 2y agoWasn't this discussed by Oliver Sachs? The post encephalitis sufferers?
- omnicognate 2y agoIf 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. 1. https://europepmc.org/article/pmc/pmc4190174 https://europepmc.org/article/pmc/pmc4190174 2. https://pmc.ncbi.nlm.nih.gov/articles/PMC10507138/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10507138/
- omnicognate 2y ago[flagged]
- meiraleal 2y agoHN has a tendency to frame issues like fatigue as external or systemic problems, not individual factors like lifestyle or health
- madaxe_again 2y agoI 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.
- Madmallard 2y agoTime 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 2y agocan you explain the dietary advice like cutting out gluten? is that to reduce inflammatory responses?
- sabbaticaldev 2y agoabout the appetite, have you tried weed? the munchies might bring you back some joy eating
- errnoteqnil 2y ago
- chakintosh 2y agoI'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.
- bun_terminator 2y ago[flagged]
- mglz 2y agoWhy 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 2y agoWell, 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 2y ago> 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...
- 2y ago
- marliechiller 2y agoReally 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.
- mattclarkdotnet 2y agoI 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 2y agoThanks for the advice - do you use melatonin every night or just nights where you know youre going to be restless?
- otomac 2y agoI 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/articles/10.3389/fnmol.2022.937789/full#B92 https://www.frontiersin.org/journals/molecular-neuroscience/... https://pmc.ncbi.nlm.nih.gov/articles/PMC4061860/ https://pmc.ncbi.nlm.nih.gov/articles/PMC4061860/
- tbalsam 2y agoI 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 2y agoThe 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.
- Terr_ 2y ago> "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.
- jddjdjd 2y ago[flagged]
- jddjdjd 2y ago[flagged]