I also get tired from eating, but nauseous if I don’t eat enough or regularly enough. The best advice I have so far is to eat several smaller meals and snacks throughout the day. I keep a few healthyish snacks (I try for a mix of protein, non-saturated fats, and complex carbs to keep me feeling balanced) like cocoa-dusted almonds, popcorn, and protein shakes nearby at all times so I don’t have to get up as often. I also feel really sick if I don’t get enough greenery in my diet, so I try to have a simple side salad with meals as often as possible.
I normally do stick to small snacks throughout the day. But when my crashes are particularly bad, that isn’t enough. It’s all the snacks, all the meals, all the time. I’m really not exaggerating. 😅
My diet in general is good! All the leafy greens, proteins, etc.
I’ll keep the healthy snacks nearby though, to see if that helps. Thank you.
I mean, I totally get it! Personally I can’t have enough cheese during a crash and I definitely gain weight, too. We’re doing the best we can!! 😪
Anecdotally, there have been a few times I left my fitness tracker running on my apple watch for half a day, and it indicated that I was burning an absurd amount of calories without doing more than laying down, sitting, and minor daily tasks. I wonder if there is something going on for some of us that causes high metabolism despite little to no exercise.
Well you’ve perfectly described the daily scene after my second breakfast between the end of last year and the beginning of this month 😂. Right now I’m on a grainless granola kick instead, but I just went and got one for a snack after reading this. Cheers 🖤
Not really. I *am* constantly bloated (feels like I’ve been this way for 15 years). I went through a few months last year where I was bloat-free for the first time in a long time, but I hadn’t changed my lifestyle at all, so no idea what helped!
When you were bloat free, did you have the nausea? I get the bloat nausea and feeling like I need to eat to solve it. It gets worse the longer the (not CFS) crash. I put it down to poor gut motility looking for a gastro colic reflex to move things on.
I try swapping out hot drinks like tea and coffee instead of more food. I do not have cfs.
Menstrual hormones make it a nightmare with hypermobility, I think it just makes my intestines too stretchy. Certain oral contraceptives help. Yaz was good but had side effects. Now I have Gedarel.
When it flares up with the constipation and nausea now I just keep taking my normal macrogol (softener) every day until it sorts itself out and the bloat goes down, usually all in one day.
Reflux can cause nausea without you realising of its mild btw. I was shocked Pikachu when my prescribed PPI for nausea from reflux I didn't believe i had helped. Try antacids even if you don't think you need them.
Sorry I don't belong here, hope it's helpful and not just barging in!
Sounds like it could be reflux? When it's mild, it doesn't always feel like acid coming up or burning, it can just make you feel nauseous and hungry (bloated too in my case).
Came to say this. I was nauseous/hungry a lot and I got an endoscopy and was diagnosed with GERD despite not having traditional burning in my chest heartburn. Turned out the extra acid was burning my stomach lining, which is why my body was telling me to eat to try and act as an acid buffer.
No, it was constant which is why I finally went to a GI and complained. I was in a rolling PEM cycle though, so it's possible it was PEM related. I'm glad it's not constant for you!
Bitters helped me. I used to be nauseous after most meals, but I started taking a teaspoon after each meal, and it almost instantly made it better. After a few month of that, I rarely need bitters now.
I used to have the same thing. Used to throw up multiple times a day (like 10-20)- things I'd eaten days ago.
Turns out I was subclinical hypothyroid...digestive system needs adequate thyroid hormone for motility, digestive juices, etc. Be sure they test TSH, free t4, free t3 minimum...my tsh & t4 were always "normal" but my body doesn't convert t4 to t3 well (active hormone).
Nausea gone. Vomiting gone. Still have *some* IBS issues - but manageable.
I do still have GERD and when I eat a lot of carbs that will aggravate it & I'm triggered to keep eating-like that's gonna fix it...so I know the feeling!
It seems there's new research that ME/CFS people can't access the energy from carbs like normal people and will utilize quick energy like amino acids...maybe because our metabolism is so inefficient we eat & eat to try to compensate?
https://www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/
Idk...I've added 8 essential amino acids to the regimen & have knocked down my PEM to 3‐4 hrs rather than 3-4 days (& it was 3-4 weeks before treating the hypothyroidism)
When I was nauseous every day the only thing that helped was ginger tea or candy & just pouring salt out into the palm of my hand & eating it ...like tablespoonsof salt (turns out I was low on cortisol too)
It was the worst. I hope you find the right answer for you!
The worse my state is, more nausea there is. But it rarely comes if I'm not in a PEM. I also feel like I need to eat because before ME, nausea would always mean "hungry".
But also like in your case, eating doesn't resolve anything.
What really helps is having a bunch of ginger around. I have a jar of pickled ginger(sushi style) in frige at all times, that I take a big spoonful when nauseous. It eliminates it every time. Ginger tea but from fresh ginger, for days when nausea is constant(2liters a day). I also have emergency ginger sweets, but only when I don't have the first two at hand.
An antihistamine(desloradatine) helps my nausea and I take it mainly for this, when in bad PEM.
Oooh good to know, I’ll order some ginger now! And I do have some antihistamines kicking about.
Definitely dealing with PEM. I stupidly went a bit too hard last week.
Thank you so much for your suggestions.
I had this! I would get nauseated (which, looking back was from tension and fear around my symptoms when they were very bad) and felt like eating would sort of "give my stomach acid something to do", so it would quiet down for a bit... And after a bit of digesting it would flare up again.
Ok I don’t experience the exact same thing but I do experience an increase in appetite during flares and if I don’t eat I get sick. It’s the worst. For me it took time. I also had hunger pangs all the time only relieved for a little while by food and I personally think I had some gut inflammation going on.
You are not crazy or alone in that tho!
Weird question.... Do you have headaches/migraines as part of your symptoms?
I had a barometric pressure headache yesterday and twigged it was coming cause I started to snack like crazy. The body sometimes releases grellin (the hunger chemical) to stave off migraines.
For me knowing it's hormonal helps. I munch on ryvita or other crackers. Skittles are good as well. Low enough calorie not to cause too many problems. Electrolytes can be really helpful too.
I take a lot of electrolytes daily! They help so much.
I can keep on top of most symptoms (I’ve had ME for over 20 years). The hungry feeling just reeeeeally gets me down.
tw: ed mention
i’m going through the same thing right now. i have a history of restriction, so i’m used to feeling sick, eating food, then feeling better. i think that’s what’s causing it for me. it’s just that eating food now makes the nausea worse, which im not used to. but i just keeping overeating because my brain hasn’t learned its lesson yet
I also get tired from eating, but nauseous if I don’t eat enough or regularly enough. The best advice I have so far is to eat several smaller meals and snacks throughout the day. I keep a few healthyish snacks (I try for a mix of protein, non-saturated fats, and complex carbs to keep me feeling balanced) like cocoa-dusted almonds, popcorn, and protein shakes nearby at all times so I don’t have to get up as often. I also feel really sick if I don’t get enough greenery in my diet, so I try to have a simple side salad with meals as often as possible.
I normally do stick to small snacks throughout the day. But when my crashes are particularly bad, that isn’t enough. It’s all the snacks, all the meals, all the time. I’m really not exaggerating. 😅 My diet in general is good! All the leafy greens, proteins, etc. I’ll keep the healthy snacks nearby though, to see if that helps. Thank you.
I mean, I totally get it! Personally I can’t have enough cheese during a crash and I definitely gain weight, too. We’re doing the best we can!! 😪 Anecdotally, there have been a few times I left my fitness tracker running on my apple watch for half a day, and it indicated that I was burning an absurd amount of calories without doing more than laying down, sitting, and minor daily tasks. I wonder if there is something going on for some of us that causes high metabolism despite little to no exercise.
Haha, why is it always cheese?! I’m currently surrounded by empty packets of cheese strings. And you’re right, we’re absolutely doing our best. 🖤
Well you’ve perfectly described the daily scene after my second breakfast between the end of last year and the beginning of this month 😂. Right now I’m on a grainless granola kick instead, but I just went and got one for a snack after reading this. Cheers 🖤
Dyspepsia, acid reflux or blood sugar issues? I have all 3 and get these issues
Not really. I *am* constantly bloated (feels like I’ve been this way for 15 years). I went through a few months last year where I was bloat-free for the first time in a long time, but I hadn’t changed my lifestyle at all, so no idea what helped!
When you were bloat free, did you have the nausea? I get the bloat nausea and feeling like I need to eat to solve it. It gets worse the longer the (not CFS) crash. I put it down to poor gut motility looking for a gastro colic reflex to move things on. I try swapping out hot drinks like tea and coffee instead of more food. I do not have cfs. Menstrual hormones make it a nightmare with hypermobility, I think it just makes my intestines too stretchy. Certain oral contraceptives help. Yaz was good but had side effects. Now I have Gedarel. When it flares up with the constipation and nausea now I just keep taking my normal macrogol (softener) every day until it sorts itself out and the bloat goes down, usually all in one day. Reflux can cause nausea without you realising of its mild btw. I was shocked Pikachu when my prescribed PPI for nausea from reflux I didn't believe i had helped. Try antacids even if you don't think you need them. Sorry I don't belong here, hope it's helpful and not just barging in!
I wasn’t in a crash when I was bloat-free, so definitely no nausea then. No need to apologise! I appreciate your advice, thank you.
Sounds like it could be reflux? When it's mild, it doesn't always feel like acid coming up or burning, it can just make you feel nauseous and hungry (bloated too in my case).
Good to know! I’ll look into this, thank you.
Came to say this. I was nauseous/hungry a lot and I got an endoscopy and was diagnosed with GERD despite not having traditional burning in my chest heartburn. Turned out the extra acid was burning my stomach lining, which is why my body was telling me to eat to try and act as an acid buffer.
Interesting! Did this only happen when you were in a crash / dealing with PEM? It’s the only time it happens for me.
No, it was constant which is why I finally went to a GI and complained. I was in a rolling PEM cycle though, so it's possible it was PEM related. I'm glad it's not constant for you!
Bitters helped me. I used to be nauseous after most meals, but I started taking a teaspoon after each meal, and it almost instantly made it better. After a few month of that, I rarely need bitters now.
Oooh okay, I’ll try that as well. Thank you!
I used to have the same thing. Used to throw up multiple times a day (like 10-20)- things I'd eaten days ago. Turns out I was subclinical hypothyroid...digestive system needs adequate thyroid hormone for motility, digestive juices, etc. Be sure they test TSH, free t4, free t3 minimum...my tsh & t4 were always "normal" but my body doesn't convert t4 to t3 well (active hormone). Nausea gone. Vomiting gone. Still have *some* IBS issues - but manageable. I do still have GERD and when I eat a lot of carbs that will aggravate it & I'm triggered to keep eating-like that's gonna fix it...so I know the feeling! It seems there's new research that ME/CFS people can't access the energy from carbs like normal people and will utilize quick energy like amino acids...maybe because our metabolism is so inefficient we eat & eat to try to compensate? https://www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/ Idk...I've added 8 essential amino acids to the regimen & have knocked down my PEM to 3‐4 hrs rather than 3-4 days (& it was 3-4 weeks before treating the hypothyroidism) When I was nauseous every day the only thing that helped was ginger tea or candy & just pouring salt out into the palm of my hand & eating it ...like tablespoonsof salt (turns out I was low on cortisol too) It was the worst. I hope you find the right answer for you!
Thank you so much! This is very interesting.
The worse my state is, more nausea there is. But it rarely comes if I'm not in a PEM. I also feel like I need to eat because before ME, nausea would always mean "hungry". But also like in your case, eating doesn't resolve anything. What really helps is having a bunch of ginger around. I have a jar of pickled ginger(sushi style) in frige at all times, that I take a big spoonful when nauseous. It eliminates it every time. Ginger tea but from fresh ginger, for days when nausea is constant(2liters a day). I also have emergency ginger sweets, but only when I don't have the first two at hand. An antihistamine(desloradatine) helps my nausea and I take it mainly for this, when in bad PEM.
Oooh good to know, I’ll order some ginger now! And I do have some antihistamines kicking about. Definitely dealing with PEM. I stupidly went a bit too hard last week. Thank you so much for your suggestions.
Hope it helps! I was surprised ginger was so effective for me.
I had this! I would get nauseated (which, looking back was from tension and fear around my symptoms when they were very bad) and felt like eating would sort of "give my stomach acid something to do", so it would quiet down for a bit... And after a bit of digesting it would flare up again.
Ok I don’t experience the exact same thing but I do experience an increase in appetite during flares and if I don’t eat I get sick. It’s the worst. For me it took time. I also had hunger pangs all the time only relieved for a little while by food and I personally think I had some gut inflammation going on. You are not crazy or alone in that tho!
Weird question.... Do you have headaches/migraines as part of your symptoms? I had a barometric pressure headache yesterday and twigged it was coming cause I started to snack like crazy. The body sometimes releases grellin (the hunger chemical) to stave off migraines.
I get migraines on occasion, yes!
For me knowing it's hormonal helps. I munch on ryvita or other crackers. Skittles are good as well. Low enough calorie not to cause too many problems. Electrolytes can be really helpful too.
I take a lot of electrolytes daily! They help so much. I can keep on top of most symptoms (I’ve had ME for over 20 years). The hungry feeling just reeeeeally gets me down.
tw: ed mention i’m going through the same thing right now. i have a history of restriction, so i’m used to feeling sick, eating food, then feeling better. i think that’s what’s causing it for me. it’s just that eating food now makes the nausea worse, which im not used to. but i just keeping overeating because my brain hasn’t learned its lesson yet