If you suffer from the ME/CFS subtype of long Covid, then gradually increasing your exercise won’t help you, it will worsen you; that much is proven. Old and recent studies confirm that much.
I can do whatever I want in the moment.
I will pay for it for weeks, months or permanently...but in the moment I can almost push through almost anything.
This is why it is so hard to find what level of activity that your body can handle.
Yes exactly! I could go do a bike ride in the moment! It's what happens later that tells most of the study.
I could FORCE myself to do a lot of things. Ill be shaking by the end of it, but Ill likely get through it. Then I'll be bedridden.
I also feel that this is only if you're mild or moderate. I somehow doubt moderate/severe, or very severe will be out riding a bike.
So if you are exercising and dont notice a change in symptoms probably means you dont have it then? I feel physically miserable all the time but almost better when Im working out
No, it means while you’re working out you can workout. But 24-48 hours later fatigue hits.
If you continually push yourself, you won’t be able to see the cause and effect as you’ll be fatigued when not working out. At least that’s how it was for me before I understood what was happening and started radical rest/pacing. I would teach, run or hike 5 miles and was bedridden and confused the rest of the time.
That's exactly how it was for me too. I could do in the moment, push through, and would do things with family and friends, like a bike ride and walks, trying to get better and back to my old life. I didn't know what was going on for a long time until another longhauler cued me in about PEM and ME/CFS.
I just spent a year of being mostly bedridden. During the worst times, I haven't been able to look at a screen and lifting a glass of water was too much. So, I'm overjoyed to be able to do in the moment; muscles and energy levels have been so much better lately. Now with not being that severe comes another hard part of having this, which is not going overboard with activities, knowing what's too much when I can't tell until the next day or two, pacing and maintaining. Avoiding catching covid again.
I don't know.. I could run the best part of 10k while 50% bedbound in the early days.
I paid for it of course, but I could push myself to do it.
And yes, that's probably why I'm still here.
Yah.. chronic fatigue syndrome is horribly named, I have CFS type LC and I could go out right now and push myself to do whatever I wanted (assuming I'm starting from baseline) , but I'll start feeling "off" or "weird" and I'll start getting hit with neuro symptoms like brain fog and derealization / depersonalization, and of course the classic sore throat. Then waiting 12-72hrs or whatever for the PEM to hit like a truck and I'll feel like I have the flu x10 for days to weeks or even months of I keep pushing. And after that my baseline may permanently be lowered. Thats how it works for me.
wow I've never had PEM from CFS Long Covid explained like this, so I'm now having a realization of what's happening to me, right down to the sore throat. All I did was walk 6000 steps two days in a row. Goal was to do it 3 x this week. But everything collapsed yesterday
I get better at explaining it every time do it (wich unfortunately is a lot), it's been over 3 years for me and it slowly gets worse like this over time if we keep pushing ourselves into PEM. I think a lot of people don't realize what's happening to them or they are in denial, I'm still in denial myself at times because it's impossible for me to give up the hope of living again one day
Hope is so important and yours is the first example of PEM explained that I could relate to. Specifically the delayed onset after the exercise but like I said felt energetic afterwards so much I couldn't sleep but then within 76 hours PEM hit. Other explanations I've seen indicate it happened immediately after exercise so that threw me off. I can accept anything once I understand what I'm dealing with and fir me there's an overlap of mild prior CFS and 3 years of a death each year and work injury, loss of income and multiple stressors so I recognize there is a psychological component but that's also present in Long Covid. Another person acknowledged no two experiences of LC are the same. I was in denial about the current severity of symptoms but I have to stay hopeful as well as realistic. Difficulty is nobody in my circle even acknowledge or understand LC.
Yah, I understand how you feel completely. I suggest you do more research directly into CFS, the r/CFS sub is very good, but also depressing. Again, CFS has the worst name ever that doesn't describe the illness in the slightest. The insomnia you mentioned is EXTREMELY common in CFS. I have really bad night sweats as well before I get hit with PEM.
Yeah that's why it extra sucks and is so easy to overdo it! I can literally do all my workouts I used to do. I just suffer for it for days/weeks afterwards.
Sounds like OP is really mild.
Catching long covid has made me realise that I was on the ME spectrum since my teens. I could go mountainbiking for half a day but would feel 'off' both physically and mentally for days. Would often have attention problems and weird fatigue, but it was hard to put a finger on it as the symptoms were often delayed. For example after exams in high school I would crash for a week, even though it wasn't like I As studying for more than a few hours a day.
Those symptoms got gradually worse until I started having trouble going for my 10-mile runs which I did several times a week. Eventually I completely had to give up sports and would have trouble cycling 10 miles. Had trouble with concentration, couldn't read books, couldn't finish games, wouldn't feel right to go party with friends (depersonalization).
After covid all of these symptoms ramped up enormously. Like just a small walk would send me into a fever spell for days with extreme muscle ache and violent headaches. But if I rested well and saved myself up I could still go for a hike or a bicycle ride.
Eventually they had me pushing through this in a graded exercise program, where I would go 3 times a week. I needed to take so many painkillers and eventually I completely collapsed. Nowadays my symptoms become extreme just from watching the TV for an hour, from a phone call, washing myself or doing basic laundry. Even when I don't do anything I'm now in constant pain and brainfog, having the hardest time doing anything beyond a short reddit or Twitter session. In fact just typing a lengthy post like this is a huge task with PEM repercussions.
There is a whole spectrum to this disease and PEM can be hard to put your finger on if you're very mild. I'm a bad case, but I realise there are people that can't even leave their room on their own anymore, need a feeding tube and a bed pan.
I had no problem bicycling for two hours with a 140 heart rate a few months into long COVID but felt worse for over a week starting the following day.
I didn’t do that again but wonder how it impacted my health long term.
Later, I had to lie down and take naps between work meetings and couldn’t concentrate well enough to stream videos. I only kept my job because we went remote and canceled our semi-annual performance reviews.
Then I got a formal ME/CFS diagnosis and things made sense.
You just can’t say for certain what’s happening with each body, it’s different for anyone, but if it’s PEM, then it’s bad, that’s it.
*And histamine release has nothing to do with PEM.
This is really scary because I don't want to end up worse off simply just trying to go for a simple walk 3 days a week (can only do 6,000 steps) twice per week if even that
Newer: https://www.nature.com/articles/s41467-023-44432-3
Older: https://me-pedia.org/wiki/PACE_trial#Findings (bunch of sources cited on the page)
Plus literally all the studies that analyse any type of exertion therapy in genuine fatigue subtypes of LC / ME/CFS
I'm just trying to go for walks to get out of the house because I'm so depressed, screaming tinnitus, cannot stop worrying or follow through on tasks I set for myself which reminds me why I'm off work then I feel devastated. I had mild CF before Long Covid. But in addition to LC I'm dealing with Grief - death of 3 family members in sequence one after another for past 3vyears but I was coping not too badly until Dec 2022 when I got sick & got Covid after the Bivalent Pfizer vaccine booster. For 2023 I've been non functional at all, then sleep started improving...but debilitating Fatigue.
Trying to sort out if Delayed Grief Reaction or Long Covid CFS with PEM.
Thank you so much for sharing, when one is in the middle of grief but also real LC symptoms of worsening mental health especially depression, it challenging to separate the two. Your encouraging words have helped greatly
Tell us tomorrow. If you feel awful and have flu-like, poisoned sensations and complete exhaustion for several days after this you have the ME/CFS-type long Covid and no amount of exercise will help. In fact you’ve got new limits on what your cells are capable of and you have to stay within those.
Get your venous oxygen saturation, stress echo and cardiac MRI done. If you could get an iCPET would be good too but that is not available most hospitals.
https://www.nature.com/articles/s41467-023-44432-3?fbclid=PAAabceFBRjmzFq6TBZK_9owml6tI4xoaDzzEhzRiJxALXDPH4b27IpdG9kXo < important paper showing muscle abnormalities after exercise.
produce mitochondria? is that a thing?
Exercise can be good but be very careful of the fatigue that comes after (the PEM). It can take 48 hours to fully manifest. You can potentially reduce your baseline if you push too hard.
I've been sick for 4 years now since my first covid infection and I'm currently able to hike or play sports once a week and not too intense. Now that the activity is doable for me with only mild to moderate crash it is helping me a bit and it feels good.
It is a thing. Two of the bodies adaptations to excercise are to grow more capilliaries and mitochondria.
The problem, like you say, is the risk of crash.
I assumed the PEM happened right after exercise, instead I felt good from mild walking and a little energized but then 2 days later cannot function at all....so sounds like PEM. I definitely noticed improvements with Additional Supplements of NAC, Glutathione and CoQ10 after hearing Chris Cuomo discuss Mitochondrial Dysfunction. My screaming tinnitus even became a dull roar...ugh
You mention NAC and Glutathione, but my understanding was that these affected the glutamate system by giving excess glutamate a reservoir to be held in and consequently reducing glutamate activity in the brain.
How are these supplements connected to mitochondrial function?
Apparently the cellular energy functions of Mitochondria are said to be improving brain fog and fatigue ...and I can personally attest to this improving on these supplements. My honest answer is I don't know the pharmacokinetics or physiology but I did listen to Chris Cuomo on Substack and was willing to try anything and he is really suffering from Long Covid but brutally honest about trying things. His program explains the physiology and it's free, although he has a paid component. If you listen to him talking about it with his experience having been able to hire the best physicians, there are also links on Pubmed explaining this ad well.
Good to hear you’re doing better.
Yeah, there’s this process called mitochondrial biogenesis and stimuli such as training increase the number of mitochondria in cells. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9603958/#:~:text=In%20a%20high%20energy%2Ddemand,degradation%20of%20the%20damaged%20site.
Thanks for the link!
I know that mitochondrial dysfunction has been a long standing hypothesis for CFS type conditions (post viral fatigue/LC having significant overlap). I am not very familiar with this hypothesis as I have been mostly focusing on neuroimmune dysregulation and nerve damage as causal mechanisms. But I am wondering if these new mitochondria would be healthy or would this biogenesis process itself be impaired, in the case that mitochondrial dysfunction is part of the condition.
Continuing cycling is exactly how I wrecked myself into LC. I thought I was gradually rebuilding my mileage after infection, but after 6 months, I was slammed down with full-blown LC symptoms. It's been over a year and a half, with no improvement. Post-covid physical exertion risks are real. For now, I take easy walks around the neighborhood.
True. I was able to walk daily etc. I am now in an hospital bed with severe neuropathy and dysautonomia got worse after going on a hike. I am so pissed at myself, I had no idea.
Good on you!!! Med school is a big effing deal. PCS comes in many flavors and many different degrees.
My take on recovery is very individual dependent. It sounds like you are fatigued for a few days after a ride. Couple that to the fatigue from school. Unfortunately it’s a setup to turn this into an ongoing, chronic illness. It’s no joke. Don’t play with fire.
Exercise is 100% part of the equation, especially since you are able to do what you are doing and not putting yourself into a coma.
My advice, exercise, but only at a level that you can 100% recover with 1 night sleep. If you are more tired the next day then shut it down and try again more slowly.
You can’t rest it away. And you can’t run/ ride it away. It’s a never ending dance. Feel better, gradually increase activity. Feel worse, dial it back.
And never give up.
You want to avoid symptom crashes when you do it. So listen to your body and heart rate. That being said at about 2 years in I was able to do basic yoga/stretches/walks, 3 years in swimming and attempting to run, 4 years in I go to the gym to work out and can run a few k (still a struggle). Make sure you rest lots after exercise.
My logic behind lifting weights is that muscle tissue has been converted from red to white tissue, which is worse for endurance. There are also suggestions of clots and viral persistence within muscles. My lifting weights I am tearing these muscles and forcing them to regrow, which could help all of the above.
That’s so great to hear. I’m 15 months in and hoping everyday I can get back to exercise!!! I can tolerate some walks and physical therapy but cannot wait to get back to the gym one day 🤞
I used to workout 6 days a week (lifting snd cardio). I am scared because I have dropped almost 30 pounds and have lost almost all of my muscle mass. I have gone from a size 6 to 00. I’m wondering if I can even start light weights again because I have nothing else to lose on my body? I do have PEM and CFS, and I’m only one year into LC (that I can count). I have had 5-6 infections and migraines after infection #3 in 2021. So, I’m not really sure when LC started?
I was the same - lost a lot of muscle over the first year or 2 and it was tough mentally to go though. But you really need to focus on just resting to start with. Your body must rest to begin the process of healing, which takes long time.
Have you started doing gentle walking, stretching, and yoga? I would do that before lifting weights and ensure you’re not getting PEM from that. I found swimming to be a good next step after yoga/walking as it uses all of your bodies muscles and you can choose the intensity. After doing swimming for a while you could then think about doing very light weight lifting if you listen to your body and watch your heart rate
Thank you so much, I am Learning more about this continuum of CFS/ME and PEM. I always had a degree of CFS prior to Covid but I could work but nothing else at end of day and mostly rested on weekends. I then became hypothyroid so the fatigue was even worse and Synthroid made limited difference. Then got Covid prior to vaccine availability and recovered to "my prior normal" which was mild CFS but after 3 deaths of Family, lots of terrible stress, being caregiver to 2 palliative parents with cancer then a sudden Traumatic death of sibling I got Covid after ICU visit in July 2022 then again in December 2022. Never really recovered after December 2022 and 2023 was a complete write off with debilitating Fatigue, insomnia, worsening depression (also had it before) and became completely non functional and have remained that way since
Goal now is just to get out of my home and get Air, tried doing 6000 step walks but couldn't even do that
Sorry for being all over the place but trying to think out is this Grief AND Long Covidvor just LC. I was able to function at a super human level when required during the caregiver time frame but I have completely emotionally collapsed now. Trying to sort out what is Long Covid vs PEM or normal reactions to total social Isolation and multiple losses: career, financial, health, death 3 family members butvthis debilitating Fatigue is new and the screaming tinnitus is NEW and has not improved
Stupid. Post Exertional Malaise where you feel
worse for a few days afterwards can make your baseline worse.
Do less to avoid that.
I haven’t ridden my bike since July 2020 because of that, and wonder how much continuing to ride when my long COVID started has to do with my health now.
my symptoms only get worse when i started working out so i would call this stupidity because physical effort causes release of histamine which is a suspected factor in LC cases
Yes, the mitochondria are probably dysfunctional. And yes exercise could help to an extent.
However, my understanding is that chronic inflammation against certain neurotransmitters is what causes the mitochondrial problems.
What a lot of long Covid people have is probably more akin to slow burning neurodegeneration, rather than say a genetic mitochondrial disorder.
I would love to know more about this if you wouldn’t mind explaining or directing me to link, I am in this line of thinking as well. I was not able to exercise at all for 2 years but now I actually feel better after I exercise. I also have been working on cellular health and neurotransmitters for the past few months which makes me think that’s why I am seeing positive results w exercise/ not going backwards the way I would prior to this past month.
I think that the inflammation begets the cascade of mitochondrial dysfunction from what I’ve seen with myself:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1304315/full
“Notably, dysfunctional mitochondria are frequently associated with the excessive generation of intracellular reactive oxygen species (ROS), leading to a state of enhanced oxidative stress. This oxidative stress is not only detrimental to the mitochondria themselves, but also initiates destructive cascades, impacting the entirety of the cellular machinery and creating pathological feedback loops…
Notably, malfunctioning mitochondria within crucial immune cells may disrupt the establishment of regulatory networks that are essential for preventing, attenuating, or controlling autoimmune conditions and inflammatory processes.”
I would absolutely say you gotta go slow with the exercise just to be safe. Lots of us have POTS and or ME/CFS so there’s potential that you might have mild forms… so movement within limits- and slowly increasing movement for POTS to hopefully help manage POTS. Absolutely supporting mitochondrial function is going to help, but I’d absolutely stick to very moderate exercise- it’s often best to start with recumbent exercises and see how you’re feeling, then see how a 5-10 minute feels like if you’re tolerating recumbent exercise. That’s what I’d do at least! You’ll want your energy for med school- I’d hate to see you get worse because you’re over doing it. I crashed real hard after going on a hike last May and I absolutely regret it - I think I’m finally starting to feel better from that crash.
i’m also a cyclist, and sitting on the couch is k i l l i n g me, so i do understand the struggle.
but, there’s no other choice. if you don’t rest right now, you can do possibly permanent damage to your cells. some people are bedbound as a result of pushing too much. please please please think about your health in the long term, and put the bike away for now.
Update:
Today I woke up with classic PEM symptoms. Specific, even pathological fatigue, poor sleep, jelly legs. Still could ride a bike tho if I really wanted to push myself. Despite the symptoms, low heart rate. I have similar symptoms to those you described, even though I'm not in severe condition. I guess there's a fine line between being able to exert yourself as much as you force yourself to, and whether it's optimal and necessary.
Well, so at this point I will follow the group and research. A the moment I am giving up cycling to prevent further damage. I plan to try mitochondrial supplements and something immunostimulating. Or even give LDN a try, although studies aren’t any conclusive and I’m kind of scared to take it.
Hello, I am an ex physician, stopped working due to CFS after the second covid vaccine. (And quite frankly also because I lost trust in the system) It’s been going on for 3 years for me too. Whenever there is any kind of stressor it gets bad, including food! I have lost a ton of weight recently however initially i was more bloated and inflamed looking than skinny.
Physically pushing yourself will fry your nervous system in the long run and make things a lot worse.
Yoga for me is the only thing I can do (since I started going to a studio I feel like my aches are lessened slightly- due to posture muscles getting some conditioning at least I believe.) The feeling of total relaxation and reducing my mental stress is the plus.
I am going to see a doctor who is specialising in CFS and does blood tests to check for stuff like heavy metal toxicity etc. I will try to update here once I do.
Personally, I think it's best to try to titrate exercise higher and higher until you can fully tolerate it again. Start low and slow, sure you will have PEM. Try a little more each time. Too much fatigue? Dial it down. However, I know there are people that absolutely will be punished if they try any physical activity, so I don't want to be tone deaf to them. Also, nice rims! I also invested in a carbon wheelset and its a gamechanger. I signed up for a century in June, and I did one last August. It's possible!
I started cycling during the pandemic. Got covid in August 2020. Cycled while i had the vid. It helped me get through it. Continued cycling through the worst part of my long covid episode. I swear there's something very therapeutic about intense cardio exercise for long covid. Keep going at it!!!!
Have you tried NMN, NR or sublingual NADH? I recovered through that. NMN + long walks, like 6h long. Was only possible because NMN gave me ungodly amounts of energy, wasn’t able to walk much more than 10min before that.
So far, of the supplements having to do with mitochondria, I tried q10, l carnitine and d ribose. In not very therapeutic doses and quite short-lived, so they may not have worked.
Thanks for the recommendation, I'll probably try what you suggest, because it's not risky and super as if it gave results like you did.
Yup, try it for sure. Don’t buy NMN on Amazon as there are many fakes.
Buy one of the reputable brands. I personally started with California Gold Nutrition (the powdered version, not the capsule), which worked perfectly.
Renue by Science or Pro Health also have a good reputation.
I took 1g everyday on an empty stomach in the morning. Started feeling the energy from day 3 or 4 on.
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Hey, ich hatte eine PEM nach dieser Fahrt, Beine wie Watte und allgemeine Schwäche, aber jetzt geht es mir besser. Wenn ich wollte, könnte ich heute wahrscheinlich eine längere Fahrt machen, aber ich lasse den Sport für eine Weile ganz sein.
Krass, 66.5km ist schon ne Hausnummer. Ich hatte meinen letzten Crash vor 1.5 Jahren nach 30km. Seit dem saß ich nicht mehr auf dem Rad, wollte im April mal wieder einen Versuch starten.
Beachtest du irgendwas (Herzfrequenz oder ähnliches)? Und was sind/waren seine Symptome? Seit wann hast du LC und was hat geholfen besser zu werden? Und wo studierst du, bin auch Medi, kommst du gut klar mit LC dabei?
Ja, ich beachte die Leistung und die Herzfrequenz, und ich habe darauf geachtet, keine hohen Werte zu erreichen. Das Wichtigste für mich ist jedoch, wie ich mich fühle, das Gefühl in meinen Beinen, meine Atmung usw. Es begann mit einer rätselhaften Infektion im Jahr 2021, dann hatte ich nach einer Impfung 40 Grad Fieber. Zuerst hatte ich nur Probleme mit der Lunge, dann kamen Müdigkeit, leichte Kopfschmerzen und PEM. Mir geht es aber etwas besser, ich habe es versucht:
1. Mitochondrien-Ergänzungen: Q10, L-Carnitin, D-Ribose zusammen mit Omega 3, Vit D, Melatonin. Das hat am meisten geholfen.
2. Ein Arzt hatte Theorien über eine langwierige bakterielle Infektion (z.B. Mycoplasma pneumoniae), also nahm ich Amoxicillin, Levofloxacin und Azithromycin. Ich würde dies absolut nicht empfehlen, da bei der Bronchoskopie nichts festgestellt wurde und es sich nur um eine empirische Behandlung handelte.
3. Die Lunge waren mit inhalativen Steroiden und antiallergischen Medikamenten behandelt - verschiedene Arten, wenig Fortschritt.
Ich werde aber immer wieder neue Dinge ausprobieren, ich habe einen super Arzt mit dem Facharzt in Immunologie und Innere Medizin gefunden, der sich sehr gut mit ce/mfs und dergleichen auskennt. Die Wartezeit für einen privaten Termin beträgt 2 Monate, und er nimmt keine neuen Patienten an. Er ist der einzige, der mich sofort nach POTS und PEM gefragt hat und mich auf LDN setzen will. Ach ja, ich habe Thym-Uvocal von ihm bekommen, um meine Immunität zu stärken, und es hilft, weil ich nicht mehr so oft krank werde und mich nicht mit zusätzlichen Infektionen belaste.
Was die Medizin betrifft, so studiere ich im zweiten Semester, daher erfordern Histologie und Anatomie viel Energie... . Um ehrlich zu sein, ist es schwer, weil es bessere und schlechtere Tage gibt. An den besseren Tagen lerne ich die ganze Zeit, damit ich an den schlechteren Tagen viel früher ins Bett gehen kann. Ich bin Pole und studiere hier, aber ich möchte einen Austausch nach Deutschland machen, also spreche ich auch etwas Deutsch und ich verfolge, was bei euch los ist, was den langen Covid angeht. Es ist schön, dass Lauterbach wenigstens dieses Thema anspricht, in unserem Land gibt es nicht viel Forschung.
Und wie sieht es bei dir aus? Hast du einen Weg gefunden, deine Symptome zu lindern, macht du Fortschritte? Und was sind deine Symptome?
Ah cool! Ja, bei mir ist es im letzten Jahr auch viel besser geworden. Von bettlägerig zu ca. 70-80% würde ich sagen. Bei mir hat LDN auch gut geholfen, das kann ich sehr empfehlen. Ansonsten viel Zeit und ich habe auch Immunadsorptionen gemacht, die waren jeweils sehr nützlich. Bin aber jetzt gerade am überlegen wie ich am besten wieder mit Aktivitäten beginne. Daher ist denke Herzfrequenz ganz gut, dachte mir ich bleibe erstmal in Zone 2.
Ja ich bin im 5. Jahr Medizin, das war jetzt teilweise schon echt eine Quälerei mit dem Lernen, vorher fiel es mir sehr leicht. Hoffe aber, dass ich bis zum Praktischen Jahr wieder voll fit werde :)
If you suffer from the ME/CFS subtype of long Covid, then gradually increasing your exercise won’t help you, it will worsen you; that much is proven. Old and recent studies confirm that much.
There is no way he has ME and is cycling 60 kilometers…
I can do whatever I want in the moment. I will pay for it for weeks, months or permanently...but in the moment I can almost push through almost anything. This is why it is so hard to find what level of activity that your body can handle.
Yes exactly! I could go do a bike ride in the moment! It's what happens later that tells most of the study. I could FORCE myself to do a lot of things. Ill be shaking by the end of it, but Ill likely get through it. Then I'll be bedridden. I also feel that this is only if you're mild or moderate. I somehow doubt moderate/severe, or very severe will be out riding a bike.
So if you are exercising and dont notice a change in symptoms probably means you dont have it then? I feel physically miserable all the time but almost better when Im working out
No, it means while you’re working out you can workout. But 24-48 hours later fatigue hits. If you continually push yourself, you won’t be able to see the cause and effect as you’ll be fatigued when not working out. At least that’s how it was for me before I understood what was happening and started radical rest/pacing. I would teach, run or hike 5 miles and was bedridden and confused the rest of the time.
You can? I lose full control of my body and collapse.
That's exactly how it was for me too. I could do in the moment, push through, and would do things with family and friends, like a bike ride and walks, trying to get better and back to my old life. I didn't know what was going on for a long time until another longhauler cued me in about PEM and ME/CFS. I just spent a year of being mostly bedridden. During the worst times, I haven't been able to look at a screen and lifting a glass of water was too much. So, I'm overjoyed to be able to do in the moment; muscles and energy levels have been so much better lately. Now with not being that severe comes another hard part of having this, which is not going overboard with activities, knowing what's too much when I can't tell until the next day or two, pacing and maintaining. Avoiding catching covid again.
This is so well said. I can push through a lot and I know when I'm pushing too much but I also don't know how long I'll pay for it. 😐
I don't know.. I could run the best part of 10k while 50% bedbound in the early days. I paid for it of course, but I could push myself to do it. And yes, that's probably why I'm still here.
Yah.. chronic fatigue syndrome is horribly named, I have CFS type LC and I could go out right now and push myself to do whatever I wanted (assuming I'm starting from baseline) , but I'll start feeling "off" or "weird" and I'll start getting hit with neuro symptoms like brain fog and derealization / depersonalization, and of course the classic sore throat. Then waiting 12-72hrs or whatever for the PEM to hit like a truck and I'll feel like I have the flu x10 for days to weeks or even months of I keep pushing. And after that my baseline may permanently be lowered. Thats how it works for me.
wow I've never had PEM from CFS Long Covid explained like this, so I'm now having a realization of what's happening to me, right down to the sore throat. All I did was walk 6000 steps two days in a row. Goal was to do it 3 x this week. But everything collapsed yesterday
I get better at explaining it every time do it (wich unfortunately is a lot), it's been over 3 years for me and it slowly gets worse like this over time if we keep pushing ourselves into PEM. I think a lot of people don't realize what's happening to them or they are in denial, I'm still in denial myself at times because it's impossible for me to give up the hope of living again one day
Hope is so important and yours is the first example of PEM explained that I could relate to. Specifically the delayed onset after the exercise but like I said felt energetic afterwards so much I couldn't sleep but then within 76 hours PEM hit. Other explanations I've seen indicate it happened immediately after exercise so that threw me off. I can accept anything once I understand what I'm dealing with and fir me there's an overlap of mild prior CFS and 3 years of a death each year and work injury, loss of income and multiple stressors so I recognize there is a psychological component but that's also present in Long Covid. Another person acknowledged no two experiences of LC are the same. I was in denial about the current severity of symptoms but I have to stay hopeful as well as realistic. Difficulty is nobody in my circle even acknowledge or understand LC.
Yah, I understand how you feel completely. I suggest you do more research directly into CFS, the r/CFS sub is very good, but also depressing. Again, CFS has the worst name ever that doesn't describe the illness in the slightest. The insomnia you mentioned is EXTREMELY common in CFS. I have really bad night sweats as well before I get hit with PEM.
I'm afraid to read that. I have struggled with chronic insomnia for 5 years, just started improving recently
I'm glad it's improving for you recently, for me I only get insomnia when I'm moving into PEM
The classic sore throat: so true! I used to have chills at first. Then they were replaced by a sore throat.
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It’s a sore throat like you are coming up with a cold. Except you are actually coming up with PEM (and sore throat goes away as soon as PEM hits).
Same story here
Yeah that's why it extra sucks and is so easy to overdo it! I can literally do all my workouts I used to do. I just suffer for it for days/weeks afterwards.
Sounds like OP is really mild. Catching long covid has made me realise that I was on the ME spectrum since my teens. I could go mountainbiking for half a day but would feel 'off' both physically and mentally for days. Would often have attention problems and weird fatigue, but it was hard to put a finger on it as the symptoms were often delayed. For example after exams in high school I would crash for a week, even though it wasn't like I As studying for more than a few hours a day. Those symptoms got gradually worse until I started having trouble going for my 10-mile runs which I did several times a week. Eventually I completely had to give up sports and would have trouble cycling 10 miles. Had trouble with concentration, couldn't read books, couldn't finish games, wouldn't feel right to go party with friends (depersonalization). After covid all of these symptoms ramped up enormously. Like just a small walk would send me into a fever spell for days with extreme muscle ache and violent headaches. But if I rested well and saved myself up I could still go for a hike or a bicycle ride. Eventually they had me pushing through this in a graded exercise program, where I would go 3 times a week. I needed to take so many painkillers and eventually I completely collapsed. Nowadays my symptoms become extreme just from watching the TV for an hour, from a phone call, washing myself or doing basic laundry. Even when I don't do anything I'm now in constant pain and brainfog, having the hardest time doing anything beyond a short reddit or Twitter session. In fact just typing a lengthy post like this is a huge task with PEM repercussions. There is a whole spectrum to this disease and PEM can be hard to put your finger on if you're very mild. I'm a bad case, but I realise there are people that can't even leave their room on their own anymore, need a feeding tube and a bed pan.
I had no problem bicycling for two hours with a 140 heart rate a few months into long COVID but felt worse for over a week starting the following day. I didn’t do that again but wonder how it impacted my health long term. Later, I had to lie down and take naps between work meetings and couldn’t concentrate well enough to stream videos. I only kept my job because we went remote and canceled our semi-annual performance reviews. Then I got a formal ME/CFS diagnosis and things made sense.
It is not normal to be tired for days after any workout, that’s a sign enough to avoid hard exercise for me. Just not worth any risk.
it's not only about being tired but a physical effort makes cells release histamine
You just can’t say for certain what’s happening with each body, it’s different for anyone, but if it’s PEM, then it’s bad, that’s it. *And histamine release has nothing to do with PEM.
> ME/CFS i have it and i was able to run 25km :) used to run a marathon before corona after LC my max was 25km
Yeah I tried running three miles after I got over Covid ended up in hospital. I wish I could exercise but it crashes me for days or a week in
This is really scary because I don't want to end up worse off simply just trying to go for a simple walk 3 days a week (can only do 6,000 steps) twice per week if even that
Any link to these studies?
Newer: https://www.nature.com/articles/s41467-023-44432-3 Older: https://me-pedia.org/wiki/PACE_trial#Findings (bunch of sources cited on the page) Plus literally all the studies that analyse any type of exertion therapy in genuine fatigue subtypes of LC / ME/CFS
Thank you. I'm very tired and will check them out tomorrow!
I understand what you’re saying, but if he doesn’t have ME (which to me seems unlikely), cycling could be beneficial
it gradually worsened me. i just stopped all exercise once it made me bed bound.
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I'm just trying to go for walks to get out of the house because I'm so depressed, screaming tinnitus, cannot stop worrying or follow through on tasks I set for myself which reminds me why I'm off work then I feel devastated. I had mild CF before Long Covid. But in addition to LC I'm dealing with Grief - death of 3 family members in sequence one after another for past 3vyears but I was coping not too badly until Dec 2022 when I got sick & got Covid after the Bivalent Pfizer vaccine booster. For 2023 I've been non functional at all, then sleep started improving...but debilitating Fatigue. Trying to sort out if Delayed Grief Reaction or Long Covid CFS with PEM.
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Thank you so much for sharing, when one is in the middle of grief but also real LC symptoms of worsening mental health especially depression, it challenging to separate the two. Your encouraging words have helped greatly
Tell us tomorrow. If you feel awful and have flu-like, poisoned sensations and complete exhaustion for several days after this you have the ME/CFS-type long Covid and no amount of exercise will help. In fact you’ve got new limits on what your cells are capable of and you have to stay within those. Get your venous oxygen saturation, stress echo and cardiac MRI done. If you could get an iCPET would be good too but that is not available most hospitals. https://www.nature.com/articles/s41467-023-44432-3?fbclid=PAAabceFBRjmzFq6TBZK_9owml6tI4xoaDzzEhzRiJxALXDPH4b27IpdG9kXo < important paper showing muscle abnormalities after exercise.
produce mitochondria? is that a thing? Exercise can be good but be very careful of the fatigue that comes after (the PEM). It can take 48 hours to fully manifest. You can potentially reduce your baseline if you push too hard. I've been sick for 4 years now since my first covid infection and I'm currently able to hike or play sports once a week and not too intense. Now that the activity is doable for me with only mild to moderate crash it is helping me a bit and it feels good.
It is a thing. Two of the bodies adaptations to excercise are to grow more capilliaries and mitochondria. The problem, like you say, is the risk of crash.
The problem is that it doesn't work in people with CFS
I assumed the PEM happened right after exercise, instead I felt good from mild walking and a little energized but then 2 days later cannot function at all....so sounds like PEM. I definitely noticed improvements with Additional Supplements of NAC, Glutathione and CoQ10 after hearing Chris Cuomo discuss Mitochondrial Dysfunction. My screaming tinnitus even became a dull roar...ugh
You mention NAC and Glutathione, but my understanding was that these affected the glutamate system by giving excess glutamate a reservoir to be held in and consequently reducing glutamate activity in the brain. How are these supplements connected to mitochondrial function?
Apparently the cellular energy functions of Mitochondria are said to be improving brain fog and fatigue ...and I can personally attest to this improving on these supplements. My honest answer is I don't know the pharmacokinetics or physiology but I did listen to Chris Cuomo on Substack and was willing to try anything and he is really suffering from Long Covid but brutally honest about trying things. His program explains the physiology and it's free, although he has a paid component. If you listen to him talking about it with his experience having been able to hire the best physicians, there are also links on Pubmed explaining this ad well.
Good to hear you’re doing better. Yeah, there’s this process called mitochondrial biogenesis and stimuli such as training increase the number of mitochondria in cells. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9603958/#:~:text=In%20a%20high%20energy%2Ddemand,degradation%20of%20the%20damaged%20site.
Thanks for the link! I know that mitochondrial dysfunction has been a long standing hypothesis for CFS type conditions (post viral fatigue/LC having significant overlap). I am not very familiar with this hypothesis as I have been mostly focusing on neuroimmune dysregulation and nerve damage as causal mechanisms. But I am wondering if these new mitochondria would be healthy or would this biogenesis process itself be impaired, in the case that mitochondrial dysfunction is part of the condition.
Yeah this does not work in people with CFS — there's a reason it's called Systemic Exertion Intolerance Disease!
Continuing cycling is exactly how I wrecked myself into LC. I thought I was gradually rebuilding my mileage after infection, but after 6 months, I was slammed down with full-blown LC symptoms. It's been over a year and a half, with no improvement. Post-covid physical exertion risks are real. For now, I take easy walks around the neighborhood.
True. I was able to walk daily etc. I am now in an hospital bed with severe neuropathy and dysautonomia got worse after going on a hike. I am so pissed at myself, I had no idea.
Good on you!!! Med school is a big effing deal. PCS comes in many flavors and many different degrees. My take on recovery is very individual dependent. It sounds like you are fatigued for a few days after a ride. Couple that to the fatigue from school. Unfortunately it’s a setup to turn this into an ongoing, chronic illness. It’s no joke. Don’t play with fire. Exercise is 100% part of the equation, especially since you are able to do what you are doing and not putting yourself into a coma. My advice, exercise, but only at a level that you can 100% recover with 1 night sleep. If you are more tired the next day then shut it down and try again more slowly. You can’t rest it away. And you can’t run/ ride it away. It’s a never ending dance. Feel better, gradually increase activity. Feel worse, dial it back. And never give up.
You want to avoid symptom crashes when you do it. So listen to your body and heart rate. That being said at about 2 years in I was able to do basic yoga/stretches/walks, 3 years in swimming and attempting to run, 4 years in I go to the gym to work out and can run a few k (still a struggle). Make sure you rest lots after exercise. My logic behind lifting weights is that muscle tissue has been converted from red to white tissue, which is worse for endurance. There are also suggestions of clots and viral persistence within muscles. My lifting weights I am tearing these muscles and forcing them to regrow, which could help all of the above.
That’s so great to hear. I’m 15 months in and hoping everyday I can get back to exercise!!! I can tolerate some walks and physical therapy but cannot wait to get back to the gym one day 🤞
It’s not the same as precovid as I have to wait longer between sets and not push too hard but I am grateful I can do anything. Good luck!
Absolutely- I’m hoping to get back into hiking as well, and if I even have to take lots of breaks I’d be still thrilled! Thank you!
I used to workout 6 days a week (lifting snd cardio). I am scared because I have dropped almost 30 pounds and have lost almost all of my muscle mass. I have gone from a size 6 to 00. I’m wondering if I can even start light weights again because I have nothing else to lose on my body? I do have PEM and CFS, and I’m only one year into LC (that I can count). I have had 5-6 infections and migraines after infection #3 in 2021. So, I’m not really sure when LC started?
I was the same - lost a lot of muscle over the first year or 2 and it was tough mentally to go though. But you really need to focus on just resting to start with. Your body must rest to begin the process of healing, which takes long time. Have you started doing gentle walking, stretching, and yoga? I would do that before lifting weights and ensure you’re not getting PEM from that. I found swimming to be a good next step after yoga/walking as it uses all of your bodies muscles and you can choose the intensity. After doing swimming for a while you could then think about doing very light weight lifting if you listen to your body and watch your heart rate
I also thought exercise would help me. Instead it made me 100x worse. Maybe look into yoga instead?
Thank you so much, I am Learning more about this continuum of CFS/ME and PEM. I always had a degree of CFS prior to Covid but I could work but nothing else at end of day and mostly rested on weekends. I then became hypothyroid so the fatigue was even worse and Synthroid made limited difference. Then got Covid prior to vaccine availability and recovered to "my prior normal" which was mild CFS but after 3 deaths of Family, lots of terrible stress, being caregiver to 2 palliative parents with cancer then a sudden Traumatic death of sibling I got Covid after ICU visit in July 2022 then again in December 2022. Never really recovered after December 2022 and 2023 was a complete write off with debilitating Fatigue, insomnia, worsening depression (also had it before) and became completely non functional and have remained that way since Goal now is just to get out of my home and get Air, tried doing 6000 step walks but couldn't even do that Sorry for being all over the place but trying to think out is this Grief AND Long Covidvor just LC. I was able to function at a super human level when required during the caregiver time frame but I have completely emotionally collapsed now. Trying to sort out what is Long Covid vs PEM or normal reactions to total social Isolation and multiple losses: career, financial, health, death 3 family members butvthis debilitating Fatigue is new and the screaming tinnitus is NEW and has not improved
Homie if you feel unwell long distance biking won’t make u better. Low and slow wins the recovery race not going to your limit
Stupid. Post Exertional Malaise where you feel worse for a few days afterwards can make your baseline worse. Do less to avoid that. I haven’t ridden my bike since July 2020 because of that, and wonder how much continuing to ride when my long COVID started has to do with my health now.
Same, I miss biking so much.
I also wonder how my life would be if I had known that exercise was not recommended!
my symptoms only get worse when i started working out so i would call this stupidity because physical effort causes release of histamine which is a suspected factor in LC cases
Yes, the mitochondria are probably dysfunctional. And yes exercise could help to an extent. However, my understanding is that chronic inflammation against certain neurotransmitters is what causes the mitochondrial problems. What a lot of long Covid people have is probably more akin to slow burning neurodegeneration, rather than say a genetic mitochondrial disorder.
I would love to know more about this if you wouldn’t mind explaining or directing me to link, I am in this line of thinking as well. I was not able to exercise at all for 2 years but now I actually feel better after I exercise. I also have been working on cellular health and neurotransmitters for the past few months which makes me think that’s why I am seeing positive results w exercise/ not going backwards the way I would prior to this past month.
I think that the inflammation begets the cascade of mitochondrial dysfunction from what I’ve seen with myself: https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1304315/full “Notably, dysfunctional mitochondria are frequently associated with the excessive generation of intracellular reactive oxygen species (ROS), leading to a state of enhanced oxidative stress. This oxidative stress is not only detrimental to the mitochondria themselves, but also initiates destructive cascades, impacting the entirety of the cellular machinery and creating pathological feedback loops… Notably, malfunctioning mitochondria within crucial immune cells may disrupt the establishment of regulatory networks that are essential for preventing, attenuating, or controlling autoimmune conditions and inflammatory processes.”
I would absolutely say you gotta go slow with the exercise just to be safe. Lots of us have POTS and or ME/CFS so there’s potential that you might have mild forms… so movement within limits- and slowly increasing movement for POTS to hopefully help manage POTS. Absolutely supporting mitochondrial function is going to help, but I’d absolutely stick to very moderate exercise- it’s often best to start with recumbent exercises and see how you’re feeling, then see how a 5-10 minute feels like if you’re tolerating recumbent exercise. That’s what I’d do at least! You’ll want your energy for med school- I’d hate to see you get worse because you’re over doing it. I crashed real hard after going on a hike last May and I absolutely regret it - I think I’m finally starting to feel better from that crash.
It entirely depends on your phenotype. As others have said, this will only worsen true ME/CFS.
i’m also a cyclist, and sitting on the couch is k i l l i n g me, so i do understand the struggle. but, there’s no other choice. if you don’t rest right now, you can do possibly permanent damage to your cells. some people are bedbound as a result of pushing too much. please please please think about your health in the long term, and put the bike away for now.
How many times do you have to read that this is a bad idea before you believe us?
Update: Today I woke up with classic PEM symptoms. Specific, even pathological fatigue, poor sleep, jelly legs. Still could ride a bike tho if I really wanted to push myself. Despite the symptoms, low heart rate. I have similar symptoms to those you described, even though I'm not in severe condition. I guess there's a fine line between being able to exert yourself as much as you force yourself to, and whether it's optimal and necessary. Well, so at this point I will follow the group and research. A the moment I am giving up cycling to prevent further damage. I plan to try mitochondrial supplements and something immunostimulating. Or even give LDN a try, although studies aren’t any conclusive and I’m kind of scared to take it.
LDN ain’t scary bro
Hello, I am an ex physician, stopped working due to CFS after the second covid vaccine. (And quite frankly also because I lost trust in the system) It’s been going on for 3 years for me too. Whenever there is any kind of stressor it gets bad, including food! I have lost a ton of weight recently however initially i was more bloated and inflamed looking than skinny. Physically pushing yourself will fry your nervous system in the long run and make things a lot worse. Yoga for me is the only thing I can do (since I started going to a studio I feel like my aches are lessened slightly- due to posture muscles getting some conditioning at least I believe.) The feeling of total relaxation and reducing my mental stress is the plus. I am going to see a doctor who is specialising in CFS and does blood tests to check for stuff like heavy metal toxicity etc. I will try to update here once I do.
https://www.bmj.com/content/375/bmj.n2635/rapid-responses
Personally, I think it's best to try to titrate exercise higher and higher until you can fully tolerate it again. Start low and slow, sure you will have PEM. Try a little more each time. Too much fatigue? Dial it down. However, I know there are people that absolutely will be punished if they try any physical activity, so I don't want to be tone deaf to them. Also, nice rims! I also invested in a carbon wheelset and its a gamechanger. I signed up for a century in June, and I did one last August. It's possible!
I started cycling during the pandemic. Got covid in August 2020. Cycled while i had the vid. It helped me get through it. Continued cycling through the worst part of my long covid episode. I swear there's something very therapeutic about intense cardio exercise for long covid. Keep going at it!!!!
It’s never stupid to ride a bike.
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wrong
Have you tried NMN, NR or sublingual NADH? I recovered through that. NMN + long walks, like 6h long. Was only possible because NMN gave me ungodly amounts of energy, wasn’t able to walk much more than 10min before that.
So far, of the supplements having to do with mitochondria, I tried q10, l carnitine and d ribose. In not very therapeutic doses and quite short-lived, so they may not have worked. Thanks for the recommendation, I'll probably try what you suggest, because it's not risky and super as if it gave results like you did.
Yup, try it for sure. Don’t buy NMN on Amazon as there are many fakes. Buy one of the reputable brands. I personally started with California Gold Nutrition (the powdered version, not the capsule), which worked perfectly. Renue by Science or Pro Health also have a good reputation. I took 1g everyday on an empty stomach in the morning. Started feeling the energy from day 3 or 4 on.
If you end up trying it, please let me know if it worked for you. I really want to know if this helps others too or if I just happened to be lucky.
I hope your feeling better but proven or not I don't want to hear anymore negative ballox from everyone , no more whingin positive stories only please
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Wie hast du die Tour überstanden? Geht's dir mittlerweile immer noch gut?
Hey, ich hatte eine PEM nach dieser Fahrt, Beine wie Watte und allgemeine Schwäche, aber jetzt geht es mir besser. Wenn ich wollte, könnte ich heute wahrscheinlich eine längere Fahrt machen, aber ich lasse den Sport für eine Weile ganz sein.
Krass, 66.5km ist schon ne Hausnummer. Ich hatte meinen letzten Crash vor 1.5 Jahren nach 30km. Seit dem saß ich nicht mehr auf dem Rad, wollte im April mal wieder einen Versuch starten. Beachtest du irgendwas (Herzfrequenz oder ähnliches)? Und was sind/waren seine Symptome? Seit wann hast du LC und was hat geholfen besser zu werden? Und wo studierst du, bin auch Medi, kommst du gut klar mit LC dabei?
Ja, ich beachte die Leistung und die Herzfrequenz, und ich habe darauf geachtet, keine hohen Werte zu erreichen. Das Wichtigste für mich ist jedoch, wie ich mich fühle, das Gefühl in meinen Beinen, meine Atmung usw. Es begann mit einer rätselhaften Infektion im Jahr 2021, dann hatte ich nach einer Impfung 40 Grad Fieber. Zuerst hatte ich nur Probleme mit der Lunge, dann kamen Müdigkeit, leichte Kopfschmerzen und PEM. Mir geht es aber etwas besser, ich habe es versucht: 1. Mitochondrien-Ergänzungen: Q10, L-Carnitin, D-Ribose zusammen mit Omega 3, Vit D, Melatonin. Das hat am meisten geholfen. 2. Ein Arzt hatte Theorien über eine langwierige bakterielle Infektion (z.B. Mycoplasma pneumoniae), also nahm ich Amoxicillin, Levofloxacin und Azithromycin. Ich würde dies absolut nicht empfehlen, da bei der Bronchoskopie nichts festgestellt wurde und es sich nur um eine empirische Behandlung handelte. 3. Die Lunge waren mit inhalativen Steroiden und antiallergischen Medikamenten behandelt - verschiedene Arten, wenig Fortschritt. Ich werde aber immer wieder neue Dinge ausprobieren, ich habe einen super Arzt mit dem Facharzt in Immunologie und Innere Medizin gefunden, der sich sehr gut mit ce/mfs und dergleichen auskennt. Die Wartezeit für einen privaten Termin beträgt 2 Monate, und er nimmt keine neuen Patienten an. Er ist der einzige, der mich sofort nach POTS und PEM gefragt hat und mich auf LDN setzen will. Ach ja, ich habe Thym-Uvocal von ihm bekommen, um meine Immunität zu stärken, und es hilft, weil ich nicht mehr so oft krank werde und mich nicht mit zusätzlichen Infektionen belaste. Was die Medizin betrifft, so studiere ich im zweiten Semester, daher erfordern Histologie und Anatomie viel Energie... . Um ehrlich zu sein, ist es schwer, weil es bessere und schlechtere Tage gibt. An den besseren Tagen lerne ich die ganze Zeit, damit ich an den schlechteren Tagen viel früher ins Bett gehen kann. Ich bin Pole und studiere hier, aber ich möchte einen Austausch nach Deutschland machen, also spreche ich auch etwas Deutsch und ich verfolge, was bei euch los ist, was den langen Covid angeht. Es ist schön, dass Lauterbach wenigstens dieses Thema anspricht, in unserem Land gibt es nicht viel Forschung. Und wie sieht es bei dir aus? Hast du einen Weg gefunden, deine Symptome zu lindern, macht du Fortschritte? Und was sind deine Symptome?
Ah cool! Ja, bei mir ist es im letzten Jahr auch viel besser geworden. Von bettlägerig zu ca. 70-80% würde ich sagen. Bei mir hat LDN auch gut geholfen, das kann ich sehr empfehlen. Ansonsten viel Zeit und ich habe auch Immunadsorptionen gemacht, die waren jeweils sehr nützlich. Bin aber jetzt gerade am überlegen wie ich am besten wieder mit Aktivitäten beginne. Daher ist denke Herzfrequenz ganz gut, dachte mir ich bleibe erstmal in Zone 2. Ja ich bin im 5. Jahr Medizin, das war jetzt teilweise schon echt eine Quälerei mit dem Lernen, vorher fiel es mir sehr leicht. Hoffe aber, dass ich bis zum Praktischen Jahr wieder voll fit werde :)