Long Fatigue: The exhaustion that lingers after an infection
bbc.com
bbc.com
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
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
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.
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.
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.
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.
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.
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.
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...
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.
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!
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
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.
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.
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
Did they also ask how many people felt tired and in need of vacations? Love me some capitalism, re-framing labor exploitation again.
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.
I cant offer much support but youre not alone in suffering this
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.
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
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...
https://time.com/5107984/hospitals-handling-burden-flu-patie...
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.
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.
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
https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...
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.
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.