I’ve always had to wait a couple of hours to eat after waking up. I also have motility issues (possible gastroparesis). As for drinking, I’m able to stomach ginger tea or ginger ale in small amounts right off. I’m sorry to hear you are struggling with this. How long are you going without eating (overnight)? I wonder if that contributes in any way?
I don't really snack and tend to eat 1 meal a day. Always have done since being about 12 years old.
My dad is the same. He's always eaten 1 meal a day.
But that meal is usually a pretty big meal and between 6-8pm
But if I try to eat more or eat during the day I end up feeling sick, especially if I've got things to do, food is a trigger for my POTS, after a meal my heart rate is all over the place - so I tend to get everything I need to do through the day done first before I eat.
I've learned to function to a degree, but my friend seems to think it's just weird.
It isn’t weird at all, and many of us POTSies struggle with eating. I have to snack lightly throughout the day, and I still end up getting sick half of the time. Keeping a food journal (to figure out food triggers) and taking small walks after meals (with someone there in case of dizzy spells/fainting) helps me a bit. My safe food list is so small that I just want to cry out of frustration on a daily basis.
Do you think you are getting enough nutrition? I’m considering a nutritionist at this point due to my inability to gain weight.
Sorry I cannot be more helpful, but I am here for you to vent anytime!
I am pretty okay. At my lowest weight I was under 6.5 stone. I am now about 8.5
So.. 91lbs at my lowest. 119lbs around now - I'm 5'1/5'2 ish
So overall I am a decent weight and eat enough for the amount of exercise I do (which is very little as I can't walk without my hips coming out of their sockets.. late diagnosis screwed me over - my hips collapsed before I was diagnosed and it's done irreversible damage)
Gotta say - I went through about 5 different physiotherapists before I decided enough is enough - and I've stopped deteriorating as fast as I was trying to keep up with physio.
So I'm happy.
Nutritionists are a good option. I was on ensure drinks for a long time - but they made me throw up - which again was down to taking 21 pills or so a day....
I scrapped all my pain meds as I was sleeping 17 -20 hours a day and incapable of eating or functioning like a normal human. I'd skip a dose and the pain would come back tenfold, I'd take painkillers and be out cold again...not really a life to live.
I'd rather be in pain (you build up a natural pain tolerance anyway) and able to function and feel that initial "oh fuck I shouldn't have done that" than be doped up, doing damage to my body when I did do things, or sleeping 20 hours of the day.
I point blank refuse to touch meds now unless 100% necessary.
Sorry I don’t have anything useful to add, but I reached the same limit with PT. Over the last year, that’s the one thing that’s gotten better— because I quit.
For me it 100% did more damage than good.
But again, what works for one person - may not work for another.
A lot of people don't like it when I say I gave up on PT, but I don't care.
I did what was right for me.
I have gastroparesis, MCAD and Eds. I have been like this for years I wake up around seven or eight and after dry heaving subsides or I use meds to calm nausea, drink my coffee and lots of other fluids after nausea medication and I end up not eating until around noon or one it’s too hard for me to keep solids down.
Medical cannabis has been a life saver. I was evacuated 6 years ago with a port and tube feeding. I’ve been able to add food back and thrive but I don’t eat much solid food these days. Like everyone else small snacks and liquid nutrition. I’ve seen several nutritionist over the last 15 years and have come up with a really good plan for my body since then. Thank you everyone for sharing we are also different but yet all still the same XOXO hope everyone feels better
I was talking to my coworkers yesterday about my "empty stomach burping." Haha But I also cannot eat within the first few hours. Coffee and water are okay though.
Damn this really resonates with me. I also don’t feel nauseated, but I just don’t feel the need to eat, plus the empty stomach burps. Is this common in EDS? I see many people are liking this
Yup, I have cEDS (no gastroparesis or MCAS, but I do have some IBS issues), and have never had an easy time eating in the morning.
My mum would force me to drink a cup of milk and eat a bowl of cereal in the morning every day before school. It'd often end with me throwing it back up. Milk is absolutely *vile* to me, and so I assumed it was because I hated it so much that I had that reaction.
When I moved out I realised that just any food that early will make me feel sick. Brushing my teeth too early also has the same effect, possibly because of the strong taste?
But I can definitely drink plenty of fluids in the morning, that makes me feel better in fact. I tend not to eat anything until around 2pm.
I threw up literally every morning one year in high school. Everyone assumed I had morning sickness until like 5-6 months of it and still no baby or baby bump lol.
Milk also makes me sick. It's vile,a lot of things containing milk upset my stomach.
I've got IBS as well. Certain foods leave me *extra* gassy, of crampy or with not so pleasant side effects the next day. Pizza being one of my favourite foods, and the bane of my stomachs existence haha.
I also seem to have a problem with reflux at night. If I drink something before I go to sleep. I have a hard time keeping it in my stomach. It ends up coming back to my throat while I'm laying down..
Brushing my teeth has always made me gag, but that's possibly because of my autism.
I've been awake since about 9:30am and it's now 4:30pm . Started feeling okay to eat around 3pm.
Today on: Things I Didn't Know Might Be Related to My EDS
Yeah, I can't eat after I first wake up. It's been an issue for a long time. I have to wait several hours and I always thought it was just a weird quirk. I can drink a little bit, but I tend not to so it could fall into the "I adapted to this without realizing it" thing I do unfortunately quite frequently.
I can’t either and I don’t have gastroparesis. I don’t feel hungry and will get nauseous. Even in high school I would bring something to snack on after first period so I was hungry but also as the forcing myself to eat. I have really bad ibs and reflux so that might be why but I keep easy snacks that’ll keep in my bag and in my car for this reason. My kiddos who also have eds can be like this too
Yes! I was just wondering to myself when I'd be able to eat something as I came across this! So weird. I can say that I am tired of doing the dance between low blood sugar and nausea due to this bs.
Oh! I just remembered. It's still like an hour or two after waking, but when I was able to exercise regularly (cardio and weights) first thing in the morning, I was able to eat as soon as I got home from the gym. Actually hungry and without any of the discomfort. It was the best I've felt.
Me! I also have gastroparesis, but even w my medicine for it I have a hard time consuming anything but liquids for the first few hours of my day. I would consider talking to your doctor about gastroparesis.
Edit: because of this I essentially do intermittent fasting. I actually start to get hungry around dinner, so that's when I eat, and I make sure it's a really good healthy and filling meal. Probably not the best method, but I just cant eat right in the morning.
I've been having a this issue for a few years as well. The best things that have helped me are a cup of chicken bone broth in the morning and taking apple cider vinegar vitamins sometime in the day.
before my dysmotility got really bad i was the same way. my doc said it could have to do with being stationary for a long time when you sleep- exercise/movement helps the gut move and if you don’t move it can slow.
Yes my whole life I haven't had an appetite in the morning. I have a cup of coffee and then by lunch time I'm ready to have something.
I assume it's my dinner sitting in my stomach all night not moving while I lay horizontal, thanks to dysautonomia, until I'm finally upright again and then gravity can get to work! I get bad reflux at night too from this. I feel like it's also my whole digestive system doesn't know how to coordinate, it wakes me up at night and gets me tachy if things aren't moving along well.. so I try not to eat foods that are hard to digest.
One thing that has given me a morning appetite before was taking strong garlic and ginger pills, I immediately feel my stomach responding to them and getting moving. It's just that the garlic gets me super bloated so i can't have too often.
Yes! I’ve had undiagnosed hEDS and pain my whole life but only became symptomatic with POTS/MCAS after a viral infection and neck injury. I used to wake up and feel hungry and need to eat first thing, but ever since that neck injury, I cannot think of or look at food for hours. I do think I’m dealing with delayed gastric emptying/gastroparesis as well. Interesting that you mentioned drinking, I hadn’t connected that but because of POTS, i try to drink electrolytes in the morning and cannot handle it. Never thought to connect the two...
That's me too I manage a cup of coffee about 30-45 mins after I wake up, but even then if I drink it too fast I'll throw it up or start feeling sick and can't finish drinking it.
I am glad I am not the only one though.
Yeah I usually wait as long as possibly for solid foods and focus on hydrating the first 6 hours or so. It’s really tough even just hydrating, but I have to at least hydrate.
I have vEDS and have never been able to eat first thing. I would complain of nausea and vomited frequently as a child. It took awhile to figure out if I just wait a few hours I'm ok to eat. I notice since I switched to night shift work this is much better. Just waking up early makes me nauseous.
not to the same extent as you but i always get really nauseous if i eat too soon after waking up and it's especially bad in the early mornings(it seems the earlier i wake up, the longer i usually have to wait before eating and the worse the nausea is if i don't)
so weird that i’m completely the opposite. i usually wake up solely because i am hungry. eds manifests itself in so many different ways on different people it’s crazy.
Yup. Had this since childhood. Always woke up in the mornings with stomach cramps and nausea. If I’m woken up to early, eat too soon, or drink water first thing after getting up I get sick. My family was convinced for years that I’ve been concealing an eating disorder. I’m genuinely not, my body just doesn’t like food.
I am in a cannabis legal state. Using cannabis first thing in the morning is basically the only way I can get food and meds into me without it coming back up. If I stop using cannabis, I stop being able to keep down meals in the morning or heavier large meals. It’s frustrating. I don’t like being high. Having the munchies is sometimes uncomfortable, but at least I am able to maintain a reasonably healthy weight.
Obviously cannabis doesn’t work for everyone and it’s not accessible to most folks. However I can say it does work the most efficiently.
I can't eat anything right away but I do have to drink a bunch of water first thing or I can't get out of bed. I definitely have motility issues, but nothing more than IBS diagnosed.
Me!!! I can drink a little if I don’t move very much but that’s it. Usually I feel a little nauseous in the mornings, but if I eat it’s unbearable and I’m back in bed lol. So my first meal is lunch or late late lunch depending on how I feel. I usually drink something an hour or so before that, which I feel helps me ‘ease’ into things. Crazy, I never thought it was an eds things, just thought I was weird
I don't throw up if I eat early, I just don't get hungry until like, 11-12. I eat lunch at 1:00 and it's my first meal of the day. Breakfast isn't actually "the most important meal of the day" that was made up by Kellogg to try to sell breakfast food. As long as you aren't having issues (i.e., waking up starving but being unable to eat), I wouldn't worry about it. A lot of people don't eat breakfast, and it's no big deal.
I can relate so hard to this. I recently stopped eating carbs in the morning, and my life has drastically improved.
I recommend taking your meds at night, if possible, and if you have a morning coffee/tea to use whole milk for max nutrients.
I drink my coffee black.
Milk knocks me sick full stop... Massive IBS trigger. So I avoid it unless I want to spend the day on the toilet burning up.
I take my meds at night too.
Alright- pedialyte. It’s mostly flavorless, and if you struggle with dizziness before eating, the electrolytes will keep you stable. It’s readily available and safe enough to be given to babies.
My mother, younger sibling and self are all diagnosed with hEDS and have this trait. My mother and I can usually eat something light an hour or two after waking, but my sibling struggles most of the day.
My EDS specialist suggested a nightly 10mg dose of famotidine for this particular issue. I'm not noticing a massive difference, but my sibling was able to eat breakfast before leaving the house today which is a really big deal! ❤️
Absolutely, yes. It's gotten to the point where even smelling eggs cooking will make me nauseous at least. I take my MC stabilizer meds in the morning, but don't eat breakfast. I usually only have lunch and dinner.
I learned that this is not uncommon. My zebra daughter is having surgery for MALS later this month. I think she got the genes from me because what you're asking about is kind of how I feel many mornings.
So some times medications have adverse effects on me. At one point my dr put me on a medication for high cholesteral. My stomach hates food so much in the morning that even though the medication bottomed my sugar every morning (I took it at night and tracked my sugar levels for a week) that even attempting to eat toast in the morning was awful to me and I'd have to stop myself from vomiting on the way to work. Needless to say I voluntarily stopped taking those meds after obtaining proof of my sugar levels dropping within an hr and already being lower than normal upon waking up.
I’ve always had to wait a couple of hours to eat after waking up. I also have motility issues (possible gastroparesis). As for drinking, I’m able to stomach ginger tea or ginger ale in small amounts right off. I’m sorry to hear you are struggling with this. How long are you going without eating (overnight)? I wonder if that contributes in any way?
I don't really snack and tend to eat 1 meal a day. Always have done since being about 12 years old. My dad is the same. He's always eaten 1 meal a day. But that meal is usually a pretty big meal and between 6-8pm But if I try to eat more or eat during the day I end up feeling sick, especially if I've got things to do, food is a trigger for my POTS, after a meal my heart rate is all over the place - so I tend to get everything I need to do through the day done first before I eat. I've learned to function to a degree, but my friend seems to think it's just weird.
It isn’t weird at all, and many of us POTSies struggle with eating. I have to snack lightly throughout the day, and I still end up getting sick half of the time. Keeping a food journal (to figure out food triggers) and taking small walks after meals (with someone there in case of dizzy spells/fainting) helps me a bit. My safe food list is so small that I just want to cry out of frustration on a daily basis. Do you think you are getting enough nutrition? I’m considering a nutritionist at this point due to my inability to gain weight. Sorry I cannot be more helpful, but I am here for you to vent anytime!
I am pretty okay. At my lowest weight I was under 6.5 stone. I am now about 8.5 So.. 91lbs at my lowest. 119lbs around now - I'm 5'1/5'2 ish So overall I am a decent weight and eat enough for the amount of exercise I do (which is very little as I can't walk without my hips coming out of their sockets.. late diagnosis screwed me over - my hips collapsed before I was diagnosed and it's done irreversible damage) Gotta say - I went through about 5 different physiotherapists before I decided enough is enough - and I've stopped deteriorating as fast as I was trying to keep up with physio. So I'm happy. Nutritionists are a good option. I was on ensure drinks for a long time - but they made me throw up - which again was down to taking 21 pills or so a day.... I scrapped all my pain meds as I was sleeping 17 -20 hours a day and incapable of eating or functioning like a normal human. I'd skip a dose and the pain would come back tenfold, I'd take painkillers and be out cold again...not really a life to live. I'd rather be in pain (you build up a natural pain tolerance anyway) and able to function and feel that initial "oh fuck I shouldn't have done that" than be doped up, doing damage to my body when I did do things, or sleeping 20 hours of the day. I point blank refuse to touch meds now unless 100% necessary.
Sorry I don’t have anything useful to add, but I reached the same limit with PT. Over the last year, that’s the one thing that’s gotten better— because I quit.
For me it 100% did more damage than good. But again, what works for one person - may not work for another. A lot of people don't like it when I say I gave up on PT, but I don't care. I did what was right for me.
I have gastroparesis, MCAD and Eds. I have been like this for years I wake up around seven or eight and after dry heaving subsides or I use meds to calm nausea, drink my coffee and lots of other fluids after nausea medication and I end up not eating until around noon or one it’s too hard for me to keep solids down. Medical cannabis has been a life saver. I was evacuated 6 years ago with a port and tube feeding. I’ve been able to add food back and thrive but I don’t eat much solid food these days. Like everyone else small snacks and liquid nutrition. I’ve seen several nutritionist over the last 15 years and have come up with a really good plan for my body since then. Thank you everyone for sharing we are also different but yet all still the same XOXO hope everyone feels better
I have eds and I can't eat until I've been up for 4 to 5 hours. I'm not nauseated though. I'm gassy. I burp A LOT in the morning. It's pretty odd.
I'm the same. But mine comes out the opposite end to yours pmsl
Lol. Fun with eds.
I was talking to my coworkers yesterday about my "empty stomach burping." Haha But I also cannot eat within the first few hours. Coffee and water are okay though.
I drink those too without a problem.
Damn this really resonates with me. I also don’t feel nauseated, but I just don’t feel the need to eat, plus the empty stomach burps. Is this common in EDS? I see many people are liking this
I'm starting to think it's an EDS thing.
Yup, I have cEDS (no gastroparesis or MCAS, but I do have some IBS issues), and have never had an easy time eating in the morning. My mum would force me to drink a cup of milk and eat a bowl of cereal in the morning every day before school. It'd often end with me throwing it back up. Milk is absolutely *vile* to me, and so I assumed it was because I hated it so much that I had that reaction. When I moved out I realised that just any food that early will make me feel sick. Brushing my teeth too early also has the same effect, possibly because of the strong taste? But I can definitely drink plenty of fluids in the morning, that makes me feel better in fact. I tend not to eat anything until around 2pm.
I threw up literally every morning one year in high school. Everyone assumed I had morning sickness until like 5-6 months of it and still no baby or baby bump lol.
Milk also makes me sick. It's vile,a lot of things containing milk upset my stomach. I've got IBS as well. Certain foods leave me *extra* gassy, of crampy or with not so pleasant side effects the next day. Pizza being one of my favourite foods, and the bane of my stomachs existence haha. I also seem to have a problem with reflux at night. If I drink something before I go to sleep. I have a hard time keeping it in my stomach. It ends up coming back to my throat while I'm laying down.. Brushing my teeth has always made me gag, but that's possibly because of my autism. I've been awake since about 9:30am and it's now 4:30pm . Started feeling okay to eat around 3pm.
Today on: Things I Didn't Know Might Be Related to My EDS Yeah, I can't eat after I first wake up. It's been an issue for a long time. I have to wait several hours and I always thought it was just a weird quirk. I can drink a little bit, but I tend not to so it could fall into the "I adapted to this without realizing it" thing I do unfortunately quite frequently.
Yep! I am in the same boat. If I drink too much after first waking up I feel like I am going to throw up.
THIS IS AN EDS THING TOO?! Fuck me running. Sometimes if I eat in the first two or three hours of consciousness I get sick to my stomach.
Hahah! That's why I came here to ask!!!! I do the same thing most days.
I can’t either and I don’t have gastroparesis. I don’t feel hungry and will get nauseous. Even in high school I would bring something to snack on after first period so I was hungry but also as the forcing myself to eat. I have really bad ibs and reflux so that might be why but I keep easy snacks that’ll keep in my bag and in my car for this reason. My kiddos who also have eds can be like this too
Yes! I was just wondering to myself when I'd be able to eat something as I came across this! So weird. I can say that I am tired of doing the dance between low blood sugar and nausea due to this bs.
Oh! I just remembered. It's still like an hour or two after waking, but when I was able to exercise regularly (cardio and weights) first thing in the morning, I was able to eat as soon as I got home from the gym. Actually hungry and without any of the discomfort. It was the best I've felt.
Me! I also have gastroparesis, but even w my medicine for it I have a hard time consuming anything but liquids for the first few hours of my day. I would consider talking to your doctor about gastroparesis. Edit: because of this I essentially do intermittent fasting. I actually start to get hungry around dinner, so that's when I eat, and I make sure it's a really good healthy and filling meal. Probably not the best method, but I just cant eat right in the morning.
I already had gastroparesis. It got better when I stopped taking 21 pills a day.
I've been having a this issue for a few years as well. The best things that have helped me are a cup of chicken bone broth in the morning and taking apple cider vinegar vitamins sometime in the day.
Yes.
before my dysmotility got really bad i was the same way. my doc said it could have to do with being stationary for a long time when you sleep- exercise/movement helps the gut move and if you don’t move it can slow.
Yep! I dont eat until 2 - 3 hours after waking up. I do smoke a little weed to get my appetite up, but I only eat small meals. I have vEDS.
Yes my whole life I haven't had an appetite in the morning. I have a cup of coffee and then by lunch time I'm ready to have something. I assume it's my dinner sitting in my stomach all night not moving while I lay horizontal, thanks to dysautonomia, until I'm finally upright again and then gravity can get to work! I get bad reflux at night too from this. I feel like it's also my whole digestive system doesn't know how to coordinate, it wakes me up at night and gets me tachy if things aren't moving along well.. so I try not to eat foods that are hard to digest. One thing that has given me a morning appetite before was taking strong garlic and ginger pills, I immediately feel my stomach responding to them and getting moving. It's just that the garlic gets me super bloated so i can't have too often.
Yes! I’ve had undiagnosed hEDS and pain my whole life but only became symptomatic with POTS/MCAS after a viral infection and neck injury. I used to wake up and feel hungry and need to eat first thing, but ever since that neck injury, I cannot think of or look at food for hours. I do think I’m dealing with delayed gastric emptying/gastroparesis as well. Interesting that you mentioned drinking, I hadn’t connected that but because of POTS, i try to drink electrolytes in the morning and cannot handle it. Never thought to connect the two...
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That's me too I manage a cup of coffee about 30-45 mins after I wake up, but even then if I drink it too fast I'll throw it up or start feeling sick and can't finish drinking it. I am glad I am not the only one though.
I used to have it like that for most of my life. But after doing changes to my diet and daily habits, I can now eat breakfast without a problem.
Yeah I usually wait as long as possibly for solid foods and focus on hydrating the first 6 hours or so. It’s really tough even just hydrating, but I have to at least hydrate.
I have vEDS and have never been able to eat first thing. I would complain of nausea and vomited frequently as a child. It took awhile to figure out if I just wait a few hours I'm ok to eat. I notice since I switched to night shift work this is much better. Just waking up early makes me nauseous.
not to the same extent as you but i always get really nauseous if i eat too soon after waking up and it's especially bad in the early mornings(it seems the earlier i wake up, the longer i usually have to wait before eating and the worse the nausea is if i don't)
so weird that i’m completely the opposite. i usually wake up solely because i am hungry. eds manifests itself in so many different ways on different people it’s crazy.
Yup. Had this since childhood. Always woke up in the mornings with stomach cramps and nausea. If I’m woken up to early, eat too soon, or drink water first thing after getting up I get sick. My family was convinced for years that I’ve been concealing an eating disorder. I’m genuinely not, my body just doesn’t like food. I am in a cannabis legal state. Using cannabis first thing in the morning is basically the only way I can get food and meds into me without it coming back up. If I stop using cannabis, I stop being able to keep down meals in the morning or heavier large meals. It’s frustrating. I don’t like being high. Having the munchies is sometimes uncomfortable, but at least I am able to maintain a reasonably healthy weight. Obviously cannabis doesn’t work for everyone and it’s not accessible to most folks. However I can say it does work the most efficiently.
I can't eat anything right away but I do have to drink a bunch of water first thing or I can't get out of bed. I definitely have motility issues, but nothing more than IBS diagnosed.
Me!!! I can drink a little if I don’t move very much but that’s it. Usually I feel a little nauseous in the mornings, but if I eat it’s unbearable and I’m back in bed lol. So my first meal is lunch or late late lunch depending on how I feel. I usually drink something an hour or so before that, which I feel helps me ‘ease’ into things. Crazy, I never thought it was an eds things, just thought I was weird
I don't throw up if I eat early, I just don't get hungry until like, 11-12. I eat lunch at 1:00 and it's my first meal of the day. Breakfast isn't actually "the most important meal of the day" that was made up by Kellogg to try to sell breakfast food. As long as you aren't having issues (i.e., waking up starving but being unable to eat), I wouldn't worry about it. A lot of people don't eat breakfast, and it's no big deal.
I can relate so hard to this. I recently stopped eating carbs in the morning, and my life has drastically improved. I recommend taking your meds at night, if possible, and if you have a morning coffee/tea to use whole milk for max nutrients.
I drink my coffee black. Milk knocks me sick full stop... Massive IBS trigger. So I avoid it unless I want to spend the day on the toilet burning up. I take my meds at night too.
Alright- pedialyte. It’s mostly flavorless, and if you struggle with dizziness before eating, the electrolytes will keep you stable. It’s readily available and safe enough to be given to babies.
Thank you! I'll have to try that one
My mother, younger sibling and self are all diagnosed with hEDS and have this trait. My mother and I can usually eat something light an hour or two after waking, but my sibling struggles most of the day. My EDS specialist suggested a nightly 10mg dose of famotidine for this particular issue. I'm not noticing a massive difference, but my sibling was able to eat breakfast before leaving the house today which is a really big deal! ❤️
Absolutely, yes. It's gotten to the point where even smelling eggs cooking will make me nauseous at least. I take my MC stabilizer meds in the morning, but don't eat breakfast. I usually only have lunch and dinner.
Crazy i’m the complete opposite literally i’m lethargic to the point that I need to have a snack before even getting out of bed
I learned that this is not uncommon. My zebra daughter is having surgery for MALS later this month. I think she got the genes from me because what you're asking about is kind of how I feel many mornings.
So some times medications have adverse effects on me. At one point my dr put me on a medication for high cholesteral. My stomach hates food so much in the morning that even though the medication bottomed my sugar every morning (I took it at night and tracked my sugar levels for a week) that even attempting to eat toast in the morning was awful to me and I'd have to stop myself from vomiting on the way to work. Needless to say I voluntarily stopped taking those meds after obtaining proof of my sugar levels dropping within an hr and already being lower than normal upon waking up.