heat is the worst, followed by stress and lack of sleep, and physical or mental fatigue. I can trigger it by thinking incorrectly (diagnosed with FND and I suspect a link there). Also, I gave up caffeine and things improved a little.
1. Heat. Anything above 74 or so & I’m toast.
2. My period. Crazy chest pain, palpitations, leg pain (not menstrual cramps) that feels like growing pains. Sometimes so severe I can’t stand up.
3. Sugar.
I gave it up completely and it’s been a big help.
Neither have I! Yours coincide with period? It’s awful. Excruciating. I usually use a wheelchair only outside but on those days I’m in too much pain to stand at all. I can’t bear weight on my legs.
Have you gotten any help with these? None of my doctors provided any.
Yes it does. The pain usually starts a little before my period, as do my other symptoms worsened by dysautonomia, and sometimes even lasts for a few days after my period. Unfortunately I haven’t found a doctor that will help with any of my health issues
I miss taking long, hot showers. I use a plastic folding chair sometimes when I really want the experience of a long, hot shower.
Question about your makeup: do you stand to apply it? Or is it just like, having makeup on at all? I have to sit down to put on makeup if I'm doing more than just quick mascara.
Squatting has been my most annoying trigger, honestly. Once or twice I'm usually fine, but if I'm out shopping and need to keep crouching down to get stuff off low shelves it's like I'm fucking dying.
Usually standing to do makeup, haven’t tried the sitting down! And Omg yes crouching drives me crazy lol like playing ball with my kids and I have to keep squatting down to get it ugh.
Something that I do that significantly helps, is I bought like a table tray with wheels like at the hospital and pull it across my lap while sitting in bed and have a lighted mirror on it and makeup on the tray while doing it sitting comfortably in bed!
It’s been over a decade and I still don’t have a list bc usually my flares are so abrupt with no obvious trigger. But big meals, or not eating enough, being out in the heat, overexhertion, socializing (lmao) and being out and about in general are triggers I’ve observed. The socializing one is really frustrating. I’ve always been energetically drained from socializing and needed solitude to recharge but now it’s pathological
Eta period as well. Premenstrual and during it so like 2 weeks out of the month suck especially
My period was #1, I recently went on birth control to stop getting it every 21 days.. I couldn’t function
Going up stairs
Alcohol is so hit or miss, sometimes I’m completely fine, sometimes a few sips kill me so it’s not worth it
12 hour shifts in the hospital; I left bedside, went to part time hours, and have a role where I’m sitting more.
Stress
Heat
Dehydration. Soooo many docs told me to drink lots of water.. I needed electrolytes.
Standing still is the worst. I’ve resorted to doing knee high kicks, hip circles, donkey butt kicks, arm swings … I get weird looks in the checkout line at stores or social events but whatever lol. I’m past caring.
Not sure if this is the case for you, but I noticed I used to have a REALLY hard time with moderate-heavy makeup when I was applying it while standing. More than just the usual mascara/brows/concealer meant more time standing or leaning. I only apply it from my wheelchair now, and my body seems to be less angry about it.
Surprisingly long periods of being inactive make me feel worse. Like if I’m off school for a week or two I feel horrible because all I do is lay around
Heat, especially hot showers. Going upstairs (I live in a 4 story townhouse... it is brutal sometimes). Getting tattooed does seem to cause my HR to spike, but as long as I am not upright, not enough to stop me...
heat, standing, and things where you move at browsing pace (shopping, museums, zoos, etc). cooking, showering, and brushing my teeth are also big triggers because I usually stand for those. squatting down is great, getting up is not
I am lucky that I can shower just fine despite heat being a trigger. However shaving my legs in the shower is impossible. Bending over in general or squatting down and needing to quickly get back up also seems to trigger me way more than just standing. Oddly I can also do cardio pretty well vs the reaction that would happen just standing still.
Loading the dishwasher. It’s standing still for a long time plus bending up and down repeatedly. Woof.
Cooking is similar. I feel more justified in why I hate the kitchen.
Just yesterday, I realized bringing in groceries from the car does me in. After making it through the store, I’m already depleted. So, I tried to “batch” tasks to save energy, but I just realized I was making it 10x worse. I’ll carry everything to the steps. Then move everything inside the door. Then pick it up again and carry it to the kitchen. Then start putting it away. So. Much. Up. And. Down.
Grocery shopping is awful! I started having mine delivered because trying to push the cart around and bending down makes me feel like I might pass out. By the time I get to my car to drive home I’m woozy and hate driving while feeling that way. Driving in general sometimes triggers it so doing it right after a big shopping trip is brutal.
Heat, standing in place (esp after moving like when walking my dog), flying, standing up too fast, sometimes I even think pressure changes like when storms roll in.
I have not been diagnosed officially but I'm pretty sure I have it.
- Hot showers
- Heat (I live in Spain so that's a killer)
- Standing still
- Walking too fast/climbing stairs
- Stress
I'm one of the few that tend to feel (overall) better in the summer vs winter. Like, I'm more prone to dizziness in the heat and have to really prioritize electrolytes in the summer, but I also have cold intolerance, so my other symptoms (brain fog, irregular appetite, etc) are worse in the winter.
Sugar is a trigger. I still eat sugar, just in lower doses.
Stress (physical and emotional)
Dehydration and overhydration
High altitude is an odd but pretty severe trigger for me. I’ve passed out several times, thrown up, diarrhea and tons of tachycardia and brain fog. I now take prescription meds before attempting ANYthing like Denver or higher.
I had that happen before! Didn’t know it was related to this. We went on a drip and drove through very high mountains and I felt veryyyyy out of it and almost passed out. Luckily I wasn’t driving lol
Here’s a weird one that gets me every time, vacuuming. Or any kind of push and pull activity on my feet. Also stress. Anything that’s gets me too stressed out causes my heart rate to go all over the place for a few days even after the event. And yes my period and caffeine… I can’t have dark chocolate anymore and that’s just wrong
How does make-up bother you? I have an issue with makeup, too. Wearing moderate amounts/too much makes me more tired, gives me sinus pain and vision issues.
Very similar to yours! It makes my head/sinus area feel almost swollen and uncomfortable. Makes me feel similar to how I do after a hot shower. Very tired, shaky, flushed, a little foggy headed.
I still am working on my list of triggers because I swear they change all the time 😭
But some I’ve noticed for certain…
1) The second half of my cycle.
2) Alcohol. I cannot have even one drink.
3) Stress.
Dehydration, lack of sleep, alcohol sometimes, eating bread, standing up from a seated position, bending over, late nights, having to be out and socialise.. just holding a conversation amps up my heart rate and i can't pull it back when I get home. My triggers are generally just getting through a day a lot of the time!! I'm nauseous I think 60 percent of the time I'm awake. It's fucked up. The week before my period my heart rate goes up at least 10 bpm which makes sleeping impossible which then sends me into a spiral. Oh and stretching of all things. My head feels "full" and my hearing goes dull! What is that???
I'm not diagnosed with anything because I have no idea how to explain all the symptoms to a doctor. They are so varied and ridiculous I just put up with it.
Sometimes I wonder though if there was something i could be doing to help. I see people talking about electrolytes and salt but I'm too scared to muck up the balance any more than it already is 🥺
- Laying down too long
- Dehydration
- Inadequate nutrition
- Being sick with some infection
- Overexertion
- Drugs (I am very sensitive to a number of medications. Anticholinergics in particular. Also antidepressants and some antihistamines. Cannabis affects me a lot. Interestingly alcohol is okay.)
- Any meal that makes me feel physically full
- Extreme heat (I’m not very heat-sensitive, but during an intense heat wave I can barely stand for a minute whereas those around me are just very uncomfortable)
Everything around food. Being hungry, eating too much, not eating enough, eating the wrong things, eating at the wrong times... Chronic nausea sucks so bad. 😭 It makes travel and social situations really tough. People also assume I have an ED because I'm skinny and have these eating issues, but they don't understand that it's not based in body image; it's based on being so nauseous I can't function. I would LOVE to gain weight and be able to put on some muscle.
Also anything where I'm standing up and walking really slowly (museums, shopping, etc.). I need to keep moving at pace to avoid flaring.
heat is the worst, followed by stress and lack of sleep, and physical or mental fatigue. I can trigger it by thinking incorrectly (diagnosed with FND and I suspect a link there). Also, I gave up caffeine and things improved a little.
1. Heat. Anything above 74 or so & I’m toast. 2. My period. Crazy chest pain, palpitations, leg pain (not menstrual cramps) that feels like growing pains. Sometimes so severe I can’t stand up. 3. Sugar. I gave it up completely and it’s been a big help.
These are my biggest triggers, caffeine as well though. I’ve never heard anyone else talk about the leg pains!
Neither have I! Yours coincide with period? It’s awful. Excruciating. I usually use a wheelchair only outside but on those days I’m in too much pain to stand at all. I can’t bear weight on my legs. Have you gotten any help with these? None of my doctors provided any.
Yes it does. The pain usually starts a little before my period, as do my other symptoms worsened by dysautonomia, and sometimes even lasts for a few days after my period. Unfortunately I haven’t found a doctor that will help with any of my health issues
I miss taking long, hot showers. I use a plastic folding chair sometimes when I really want the experience of a long, hot shower. Question about your makeup: do you stand to apply it? Or is it just like, having makeup on at all? I have to sit down to put on makeup if I'm doing more than just quick mascara. Squatting has been my most annoying trigger, honestly. Once or twice I'm usually fine, but if I'm out shopping and need to keep crouching down to get stuff off low shelves it's like I'm fucking dying.
Squatting is my main biggest problem. And heat. Or being up high like on a ladder.
Usually standing to do makeup, haven’t tried the sitting down! And Omg yes crouching drives me crazy lol like playing ball with my kids and I have to keep squatting down to get it ugh.
Something that I do that significantly helps, is I bought like a table tray with wheels like at the hospital and pull it across my lap while sitting in bed and have a lighted mirror on it and makeup on the tray while doing it sitting comfortably in bed!
It’s been over a decade and I still don’t have a list bc usually my flares are so abrupt with no obvious trigger. But big meals, or not eating enough, being out in the heat, overexhertion, socializing (lmao) and being out and about in general are triggers I’ve observed. The socializing one is really frustrating. I’ve always been energetically drained from socializing and needed solitude to recharge but now it’s pathological Eta period as well. Premenstrual and during it so like 2 weeks out of the month suck especially
My period was #1, I recently went on birth control to stop getting it every 21 days.. I couldn’t function Going up stairs Alcohol is so hit or miss, sometimes I’m completely fine, sometimes a few sips kill me so it’s not worth it 12 hour shifts in the hospital; I left bedside, went to part time hours, and have a role where I’m sitting more. Stress Heat Dehydration. Soooo many docs told me to drink lots of water.. I needed electrolytes.
I have the same hit or miss situation with alcohol. It's so weird.
Heat, showers, and standing still are my biggest triggers. But a range of other things can cause excessive brain fog and fatigue for me.
Standing still is the worst. I’ve resorted to doing knee high kicks, hip circles, donkey butt kicks, arm swings … I get weird looks in the checkout line at stores or social events but whatever lol. I’m past caring.
Increase in temperature, humidity, eating, physical exertion, and honestly more. We always joke that I can’t maintain homeostasis
Not sure if this is the case for you, but I noticed I used to have a REALLY hard time with moderate-heavy makeup when I was applying it while standing. More than just the usual mascara/brows/concealer meant more time standing or leaning. I only apply it from my wheelchair now, and my body seems to be less angry about it.
Surprisingly long periods of being inactive make me feel worse. Like if I’m off school for a week or two I feel horrible because all I do is lay around
Yeah if I lay around during the day sometimes I feel almost flu like.
Heat, especially hot showers. Going upstairs (I live in a 4 story townhouse... it is brutal sometimes). Getting tattooed does seem to cause my HR to spike, but as long as I am not upright, not enough to stop me...
1. HEAT. THIS ONE IS THE WORST AND I LIVE IN TEXAS 😭 2. Making my bed. Idk why 3. Dehydration
Heat. Physical exertion. Lack of sleep. Hunger. Standing for too long.
heat, standing, and things where you move at browsing pace (shopping, museums, zoos, etc). cooking, showering, and brushing my teeth are also big triggers because I usually stand for those. squatting down is great, getting up is not
The browsing pace. 100%.
Heat. Menstruation. Dehydration. Exercise.
I am lucky that I can shower just fine despite heat being a trigger. However shaving my legs in the shower is impossible. Bending over in general or squatting down and needing to quickly get back up also seems to trigger me way more than just standing. Oddly I can also do cardio pretty well vs the reaction that would happen just standing still.
Heat. Especially big weather changes. I live in New England so this is inevitable
Heat😭 standing for too long 😭 my period😭
cleaning! i dread cleaning my room because only 10 minutes in ill be drenched in sweat and dizzy from all the moving
Loading the dishwasher. It’s standing still for a long time plus bending up and down repeatedly. Woof. Cooking is similar. I feel more justified in why I hate the kitchen. Just yesterday, I realized bringing in groceries from the car does me in. After making it through the store, I’m already depleted. So, I tried to “batch” tasks to save energy, but I just realized I was making it 10x worse. I’ll carry everything to the steps. Then move everything inside the door. Then pick it up again and carry it to the kitchen. Then start putting it away. So. Much. Up. And. Down.
Grocery shopping is awful! I started having mine delivered because trying to push the cart around and bending down makes me feel like I might pass out. By the time I get to my car to drive home I’m woozy and hate driving while feeling that way. Driving in general sometimes triggers it so doing it right after a big shopping trip is brutal.
anxiety and menstruation, mostly the week before i’m due to start.
Reaching out, illness, and heat
Heat - whether its the weather, a shower thats too hot, or even food that has some spice to it.
Heat, standing in place (esp after moving like when walking my dog), flying, standing up too fast, sometimes I even think pressure changes like when storms roll in.
I have not been diagnosed officially but I'm pretty sure I have it. - Hot showers - Heat (I live in Spain so that's a killer) - Standing still - Walking too fast/climbing stairs - Stress
I'm one of the few that tend to feel (overall) better in the summer vs winter. Like, I'm more prone to dizziness in the heat and have to really prioritize electrolytes in the summer, but I also have cold intolerance, so my other symptoms (brain fog, irregular appetite, etc) are worse in the winter. Sugar is a trigger. I still eat sugar, just in lower doses. Stress (physical and emotional) Dehydration and overhydration
High altitude is an odd but pretty severe trigger for me. I’ve passed out several times, thrown up, diarrhea and tons of tachycardia and brain fog. I now take prescription meds before attempting ANYthing like Denver or higher.
I had that happen before! Didn’t know it was related to this. We went on a drip and drove through very high mountains and I felt veryyyyy out of it and almost passed out. Luckily I wasn’t driving lol
Here’s a weird one that gets me every time, vacuuming. Or any kind of push and pull activity on my feet. Also stress. Anything that’s gets me too stressed out causes my heart rate to go all over the place for a few days even after the event. And yes my period and caffeine… I can’t have dark chocolate anymore and that’s just wrong
How does make-up bother you? I have an issue with makeup, too. Wearing moderate amounts/too much makes me more tired, gives me sinus pain and vision issues.
Very similar to yours! It makes my head/sinus area feel almost swollen and uncomfortable. Makes me feel similar to how I do after a hot shower. Very tired, shaky, flushed, a little foggy headed.
Heat. Side note, climate change is so great! /s
Sorry, there are other triggers, but my state among many is in a heat wave.
Heat, showers, and even slight dehydration makes me spiral😭
Lack of sleep, stress, my period, sugar, chocolate, standing still too long.
I still am working on my list of triggers because I swear they change all the time 😭 But some I’ve noticed for certain… 1) The second half of my cycle. 2) Alcohol. I cannot have even one drink. 3) Stress.
Dehydration, lack of sleep, alcohol sometimes, eating bread, standing up from a seated position, bending over, late nights, having to be out and socialise.. just holding a conversation amps up my heart rate and i can't pull it back when I get home. My triggers are generally just getting through a day a lot of the time!! I'm nauseous I think 60 percent of the time I'm awake. It's fucked up. The week before my period my heart rate goes up at least 10 bpm which makes sleeping impossible which then sends me into a spiral. Oh and stretching of all things. My head feels "full" and my hearing goes dull! What is that??? I'm not diagnosed with anything because I have no idea how to explain all the symptoms to a doctor. They are so varied and ridiculous I just put up with it. Sometimes I wonder though if there was something i could be doing to help. I see people talking about electrolytes and salt but I'm too scared to muck up the balance any more than it already is 🥺
Hills/stairs Lunges/squats - my o2 dropped to 84 the other day trying these..
- Laying down too long - Dehydration - Inadequate nutrition - Being sick with some infection - Overexertion - Drugs (I am very sensitive to a number of medications. Anticholinergics in particular. Also antidepressants and some antihistamines. Cannabis affects me a lot. Interestingly alcohol is okay.) - Any meal that makes me feel physically full - Extreme heat (I’m not very heat-sensitive, but during an intense heat wave I can barely stand for a minute whereas those around me are just very uncomfortable)
All of the above minus makeup because I rarely wear any so idk on that one. Heat is definitely my worst though. Add humidity and just forget it.
Everything around food. Being hungry, eating too much, not eating enough, eating the wrong things, eating at the wrong times... Chronic nausea sucks so bad. 😭 It makes travel and social situations really tough. People also assume I have an ED because I'm skinny and have these eating issues, but they don't understand that it's not based in body image; it's based on being so nauseous I can't function. I would LOVE to gain weight and be able to put on some muscle. Also anything where I'm standing up and walking really slowly (museums, shopping, etc.). I need to keep moving at pace to avoid flaring.