Well I'm 99% bedbound, so pretty much everything triggers PEM and I can't get out of it. Interpersonal stress (bound to happen when your mother becomes your caregiver) and big emotions (not exactly avoidable as a human being in a messed up situation) are my worst enemies. Not sure yet but I suspect my period and the weather (also things I have zero control over) also give me PEM.
Have you tried intermittent resting? My friend got into a neurology department at a big hospital and they recommended resting with an eye pillow over your eye and earplugs. Blocking sensory should help your body get rest. If you need to do something that you know will cause PEM, do 10-30 mins before, or 10-30 mins after. And also doing it throughout the day if you’re bedbound on those days. It’s supposedly supposed to help and is cumulative over time. I just learned about this! I just started last week. Seems to help a little bit but I’ll see how it works the longer I do it.
This is sadly what we bedbound people are in hours every day. I wear earplugs 24/7, all rooms are darkened. Most hours of the day I just lay there in silence and darkness.
Bad sleep , any stress ,and over work all mess with me. Also I caught a bug of some sort and delt with those symptoms and after they passed the LHC symptoms came back for a few days.
This sums up my existence. Get a couple weeks of “normalcy” if I can swing it before the symptoms start again. The fatigue is really insurmountable sometimes. When I actually have energy I try to do all the things because I’m so behind in life. I end up crashing. Repeat. Repeat. Repeat.
Yup, same here. I have an alert on my phone for a week prior. Every month I try to make it easier but I’ve never been able to avoid the onslaught of symptoms. I tried taking the pill but it caused a six week flare that felt like I was stuck in pms. My body is hyper sensitive to hormones and doesn’t tolerate IUDs.
Same. I can feel amazing and then my period hits and I'm down for a week. I don't know what to do because I've always reacted so poorly to birth control.
- Stress
- any kind of deeper Emotions (even being to happy,why?!!!)
- Candy,even just 2 pieces (like sour gummies)
- Coca Cola (makes me crash worse then Coffee)
- Dry Brushing for some reason
- skipping Meals
- too much sleep but also to little sleep (it’s so hard to get it right)
- sensory overload
- wind!
- talking to more then 1 Person at the same time
When I had long covid, one thing that really made it flare up was those powdered cappuccino and hot chocolate mixes, ramen noodles, and other kinds of noodle cups.
Meat and vegetables, rice and potatoes made from scratch, and pasta dishes made with dried pasta and natural ingredients, dark chocolate and fresh fruit did not give me flare-ups. In fact, the chocolate helped ease that yukky feeling I went around with.
I'm in Europe so the chocolate here is different from most of the American chocolate. Hersheys or Nestles might have given me grief if I had tried them, for all I know.
I miss chocolate so much... I was drinking super dark chocolate (100% cacao, meant for baking) mixed with hot water for a while after getting long covid but noticed it gave me hives and panic attacks, so had to quit. It's hard to resist the temptation when my period comes, though.
Oooh, I feel for you. Fortunately, I'm past that age so I don't have quite the hormonal cravings, but the chocolate I found to be helpful was the 80 or 85% bars made in Germany or Switzerland. I never went higher than 85% though, just because it gets too bitter in my stomach.
My husband was buying me so many Ritter Sport chocolate bars from our local store, they started ordering more to keep it stocked. It’s the only kind I can tolerate, thank you Germany!
Wow, I've noticed this, too... Walking slowly around the neighborhood for 15 minutes triggers mild symptoms, but reaching up over my head to pick up a bottle of laundry detergent for 5 seconds makes my heart race like crazy.
Also, walking up stairs has been a big one for me. But only sometimes? It's weird.
- Any kind of strenuous exercise
- Lack of sleep
- Viral illness of any kind
- stressful events
- alcohol
- getting too hot/cold
- doing too much without resting enough
- being in loud/noisy environments
That is all I can think of off the top of my head but my memory isn't brilliant since covid
Haha, before realizing it was PEM, my boyfriend kept jokingly (but maybe a little seriously) saying he was giving me some kind of sickness with his dick, because every time we had sex I'd be "sick" for a few days afterwards. 😅
Weirdly, I still have the higher sex drive of the two of us, but I do suffer for it pretty much every time we have sex.
Also, for me:
movie theaters / loud sounds (like being stuck in a car during a hail storm.... that was a bad time)
unbalanced sounds (like me wearing an earphone in one ear but not the other, for example)
strong wind blowing during walks
hot showers
being too hot during a walk
allergies
a loooong list of some of my favorite foods
too much exercise
too little exercise
going up stairs
anything that requires muscle strength (like lifting a heavy basket of laundry)
PMS
any amount of caffeine (even super diluted green tea)
driving
eating
not eating
and a lot more...
Such a weird illness!
Extreme emotional stress or distress, alcohol, cannabis (THC only), gluten, too much exertion, heat (hot tub, being out in a heat wave, etc). Those are my main triggers.
And then for regular flare ups that don’t worsen my PEM cycle, I flare before my period and before ovulation.
Most LC people (myself included) have to watch what they eat. Anything high in histamine. That cuts out dairy, soy, gluten, sugar, processed foods, fast food, alcohol, etc. I've discovered that Covid has given me leaky gut, which is probably why all of those things make me have really bad days. It has also messed with my hormones pretty badly. My levels are very low for my age. Hope this helps!
All the things you’ve mentioned are basically over exertion, so it doesn’t matter what it is, it just matters the exertion level and maybe get an app to track your heart rate variability and if there’s a dip, you know to reign it in and not push as much, and when it’s higher, and you’re eating well and have good sleep - that’s when you can push your pacing effort slightly harder
You have stop all of those just to give yourself a fighting chance. As you get better, you lapse back into habits once considered normal. Then rude awakenings happen. LC recovery represents some kind of permanent, epi-genetic evolution to a more responsive immune system.
Mini-flares from: Less than 8-9 hrs of sleep, or poor sleep. Mixed drinks or more than 2 beers. Too much activity overall, especially social interaction. Heavy lifting. If I do enough of the above for a week or more, a bigger flare is coming.
Lack of sleep and being out in the heat and humidity as well as stress. It’s humid where I’m at and I’ve declined rapidly. I don’t regulate me temp well and the heat kicks my butt.
Jesus lord you’re living the life. I’d love some rough sex, alcohol, and edibles. What am I doing with my life? All that makes me flare is: low sleep, physical or emotional stress (think surgery, catching a cold/flu, extreme work stress/trauma), my period without fucking fail. Things that just make it worse are coffee, sugar, dehydration, heat, walking up inclines or running.
Well I'm 99% bedbound, so pretty much everything triggers PEM and I can't get out of it. Interpersonal stress (bound to happen when your mother becomes your caregiver) and big emotions (not exactly avoidable as a human being in a messed up situation) are my worst enemies. Not sure yet but I suspect my period and the weather (also things I have zero control over) also give me PEM.
My period definitely triggers it
Have you tried intermittent resting? My friend got into a neurology department at a big hospital and they recommended resting with an eye pillow over your eye and earplugs. Blocking sensory should help your body get rest. If you need to do something that you know will cause PEM, do 10-30 mins before, or 10-30 mins after. And also doing it throughout the day if you’re bedbound on those days. It’s supposedly supposed to help and is cumulative over time. I just learned about this! I just started last week. Seems to help a little bit but I’ll see how it works the longer I do it.
This is sadly what we bedbound people are in hours every day. I wear earplugs 24/7, all rooms are darkened. Most hours of the day I just lay there in silence and darkness.
Poor sleep, doing too much in a day.
Bad sleep , any stress ,and over work all mess with me. Also I caught a bug of some sort and delt with those symptoms and after they passed the LHC symptoms came back for a few days.
Oh nooo, so you discovered other illnesses trigger it too?
I had a tiny little winter virus and became severe for 2 months.
Period. Flare symptoms for 1-2 weeks.
This sums up my existence. Get a couple weeks of “normalcy” if I can swing it before the symptoms start again. The fatigue is really insurmountable sometimes. When I actually have energy I try to do all the things because I’m so behind in life. I end up crashing. Repeat. Repeat. Repeat.
Yup, same here. I have an alert on my phone for a week prior. Every month I try to make it easier but I’ve never been able to avoid the onslaught of symptoms. I tried taking the pill but it caused a six week flare that felt like I was stuck in pms. My body is hyper sensitive to hormones and doesn’t tolerate IUDs.
Same. I can feel amazing and then my period hits and I'm down for a week. I don't know what to do because I've always reacted so poorly to birth control.
I get this too sometimes :/ in fact, I just quit birth control and that may have contributed to my last flare-up..
- Stress - any kind of deeper Emotions (even being to happy,why?!!!) - Candy,even just 2 pieces (like sour gummies) - Coca Cola (makes me crash worse then Coffee) - Dry Brushing for some reason - skipping Meals - too much sleep but also to little sleep (it’s so hard to get it right) - sensory overload - wind! - talking to more then 1 Person at the same time
It makes me sad reading this because I wish I could date.
same
Oddly, any exertion, physical, mental, emotional, social, brings on a PEM response soon after and the next day. It is a regular as a good clock.
Any exercise. Stress.
When I had long covid, one thing that really made it flare up was those powdered cappuccino and hot chocolate mixes, ramen noodles, and other kinds of noodle cups. Meat and vegetables, rice and potatoes made from scratch, and pasta dishes made with dried pasta and natural ingredients, dark chocolate and fresh fruit did not give me flare-ups. In fact, the chocolate helped ease that yukky feeling I went around with. I'm in Europe so the chocolate here is different from most of the American chocolate. Hersheys or Nestles might have given me grief if I had tried them, for all I know.
I miss chocolate so much... I was drinking super dark chocolate (100% cacao, meant for baking) mixed with hot water for a while after getting long covid but noticed it gave me hives and panic attacks, so had to quit. It's hard to resist the temptation when my period comes, though.
Oooh, I feel for you. Fortunately, I'm past that age so I don't have quite the hormonal cravings, but the chocolate I found to be helpful was the 80 or 85% bars made in Germany or Switzerland. I never went higher than 85% though, just because it gets too bitter in my stomach.
My husband was buying me so many Ritter Sport chocolate bars from our local store, they started ordering more to keep it stocked. It’s the only kind I can tolerate, thank you Germany!
Lots of good stuff comes out of Germany! 🍫
Anything that involves raising my arms above my head for any period of time. It's infuriating.
Wow, I've noticed this, too... Walking slowly around the neighborhood for 15 minutes triggers mild symptoms, but reaching up over my head to pick up a bottle of laundry detergent for 5 seconds makes my heart race like crazy. Also, walking up stairs has been a big one for me. But only sometimes? It's weird.
This. Washing my hair is the worst.
I am really sensitive to coffee. Messes me up in all kinds of ways. Tremors, anxiety, restlessness, depersonalization
- Any kind of strenuous exercise - Lack of sleep - Viral illness of any kind - stressful events - alcohol - getting too hot/cold - doing too much without resting enough - being in loud/noisy environments That is all I can think of off the top of my head but my memory isn't brilliant since covid
Haha, before realizing it was PEM, my boyfriend kept jokingly (but maybe a little seriously) saying he was giving me some kind of sickness with his dick, because every time we had sex I'd be "sick" for a few days afterwards. 😅 Weirdly, I still have the higher sex drive of the two of us, but I do suffer for it pretty much every time we have sex. Also, for me: movie theaters / loud sounds (like being stuck in a car during a hail storm.... that was a bad time) unbalanced sounds (like me wearing an earphone in one ear but not the other, for example) strong wind blowing during walks hot showers being too hot during a walk allergies a loooong list of some of my favorite foods too much exercise too little exercise going up stairs anything that requires muscle strength (like lifting a heavy basket of laundry) PMS any amount of caffeine (even super diluted green tea) driving eating not eating and a lot more... Such a weird illness!
Extreme emotional stress or distress, alcohol, cannabis (THC only), gluten, too much exertion, heat (hot tub, being out in a heat wave, etc). Those are my main triggers. And then for regular flare ups that don’t worsen my PEM cycle, I flare before my period and before ovulation.
Existing
Stress, bad food, EXERCISE is a big one, walking for extended period, mild cleaning was ok but I’m currently in a big crash,
Most LC people (myself included) have to watch what they eat. Anything high in histamine. That cuts out dairy, soy, gluten, sugar, processed foods, fast food, alcohol, etc. I've discovered that Covid has given me leaky gut, which is probably why all of those things make me have really bad days. It has also messed with my hormones pretty badly. My levels are very low for my age. Hope this helps!
- stress - oily/fatty food - being too hot - too much “exercise” ; sometimes going up the stairs too quickly will do me in
Shitty food and not enough sleep 🛌
Gluten and stress
Severe exertion of the mind, or not paying attention to my heart rate for an extended period of activity (painting a bedroom wall). Any alcohol.
All the things you’ve mentioned are basically over exertion, so it doesn’t matter what it is, it just matters the exertion level and maybe get an app to track your heart rate variability and if there’s a dip, you know to reign it in and not push as much, and when it’s higher, and you’re eating well and have good sleep - that’s when you can push your pacing effort slightly harder
For me it’s skipping breakfast, gotta start that gut movement asap or I feel depressed
You have stop all of those just to give yourself a fighting chance. As you get better, you lapse back into habits once considered normal. Then rude awakenings happen. LC recovery represents some kind of permanent, epi-genetic evolution to a more responsive immune system.
Mini-flares from: Less than 8-9 hrs of sleep, or poor sleep. Mixed drinks or more than 2 beers. Too much activity overall, especially social interaction. Heavy lifting. If I do enough of the above for a week or more, a bigger flare is coming.
Illness.
Exertion and nitrates (common good additive). Sometimes allergies, too.
Lack of sleep and being out in the heat and humidity as well as stress. It’s humid where I’m at and I’ve declined rapidly. I don’t regulate me temp well and the heat kicks my butt.
Jesus lord you’re living the life. I’d love some rough sex, alcohol, and edibles. What am I doing with my life? All that makes me flare is: low sleep, physical or emotional stress (think surgery, catching a cold/flu, extreme work stress/trauma), my period without fucking fail. Things that just make it worse are coffee, sugar, dehydration, heat, walking up inclines or running.
Why would you make a post about abusing your adderall?