Increased Caloric Needs in Crash?

[wabi-sabi]

I've had a bad couple of weeks (not totally sure why) and I've accidentally lost some weight, even though I'm not aware of eating less. Has anyone else had this experience? I feel like I need more calories when I'm in a bad place and that eating lots of sugar helps me with crashing and PEM..

Has anyone else noticed increased calorie needs in a flare up? Or dietary changes casing a flare?

 

[BrightCandle]

I crave sugar when I crash and when my brain is struggling with running close to the edge and I often gain weight while I am worse. Usually I loose weight when I am improved, I eat less sugar and move more. However I have been past that point of sugar and into the can't eat solid food stage and then I loose weight very fast.

 

[southwestforests]

Hmm, Can't recall ever pondering that connection.
This question is one place it would be nice to not live alone, to have a good partner who might have observed whether there is a connection, because while living the crash I'm likely not good for taking notes on the details of said crash.

 

[bradipa]

I've had a bad couple of weeks (not totally sure why) and I've accidentally lost some weight, even though I'm not aware of eating less. Has anyone else had this experience? I feel like I need more calories when I'm in a bad place and that eating lots of sugar helps me with crashing and PEM..

Has anyone else noticed increased calorie needs in a flare up? Or dietary changes casing a flare?

Are you better now, wabi-sabi?
Definitively yes. When in a crash, I crave simple carbohydrates, noodles for example*. And I have to eat tons of them in order to prevent massive weight loss.
* That is to say as long as my autonomic system plays along. Sometimes, when I am at my worse and other autonomic functions also go extremely out of order, I don't feel hunger at all, everything tastes gross, and when I eat I feel like I had a gastric band and I am full with ridiculously little portions.

 

[wabi-sabi]

Are you better now, wabi-sabi?

Not yet, but I'm working on it. Not entirely sure what caused the crash, but eating more carbohydrates definitely helps, so I'm doing that.

 

[bradipa]

Not yet, but I'm working on it. Not entirely sure what caused the crash, but eating more carbohydrates definitely helps, so I'm doing that.

Hang in there, hope you feel better soon .

How do you manage nutrition when you're in this state? Is there someone to do the shopping and cooking? A whole lot of energy goes to waste when you have to do this complex activity on your own...
Do you still like eating?

 

[bradipa]

Hmm, Can't recall ever pondering that connection.
This question is one place it would be nice to not live alone, to have a good partner who might have observed whether there is a connection, because while living the crash I'm likely not good for taking notes on the details of said crash.

Hi southwestforests.
For me, this is so clear I don't need my partner to get that. All it needs is a look in the kitchen closet, when I'm through crashing: noodles - gone, potatoes - gone, bread - gone, cookies - gone. It's like I'm on a whole other diet.
This may be a way for you to explore that, check your stock once in a while when you're ok. If you check again after a crash and you state that you ran out of sweets while the cauliflower has gone to waste, this might be a hint.

There are upsides and downsides in having a relationship with ME. As for me, I am glad to have my husband and daughter, I wouldn't miss them, but it sure isn't easy. A lot of energy goes into relationship stuff and organization, plus overstimulation is always around the corner, when they are at home. Do you have someone who comes in regularly to help you in some things?

 

[southwestforests]

This may be a way for you to explore that, check your stock once in a while when you're ok. If you check again after a crash and you state that you ran out of sweets while the cauliflower has gone to waste, this might be a hint.

Well now there's an idea.

A lot of energy goes into relationship stuff and organization, plus overstimulation is always around the corner, when they are at home.

Point noted. Was married six years from early 40s to late 40s. (am 61 now) Had adult stepchildren and a few stepgrandkids.

Overstimulation very much is a thing with having ME/CFS, fibromyalgia, and autism, all in play.

And because of how overstimulating the thing is, only for a couple short times have I had a TV since getting out on my own, just had to watch Star Trek, Babylon 5, and some railway shows on PBS.
Have lived at this location for 16 years now and for those 16 years there has been no television in here.
The cable company who I get internet and telephone from doesn't quite know what to do with me!

I very much enjoy being able to find non-hyperactive content on YouTube & love a few certain browser extensions which reduce what I'll call extraneous video content that is on a mission to seize your attention.

Overstimulation is also part of why I'm not on Facebook, Twitter, TikTok, Instagraph, and whatever else there might be of that nature.

Do you have someone who comes in regularly to help you in some things?

No. Like so much of my adult life, is just me, with some financial assistance from parents.
Friends and acquaintances are so busy with their jobs and family and extended family, they can only very rarely take time to help.

Now, there is some help with some things sometimes in the last 5 years or so. Parents will write the check to pay for having helpers from an outfit in our region which is named Hometown Homecare. They offer a service where someone can help with things like housework, grocery shopping, driving to the nearby city for appointments.

Living in this county seat farm burg where I've lived over a decade now, driving to the city something like 30 miles away for appointments has become an issue, only very rarely now can I do that myself. And so has driving to see my parents 100 miles away who can't drive at all any more. So, sometimes we'll schedule with Hometown Homecare for each of those.

There are about 1/3 of the days in a month where I know I have no business driving at all that day, or at least no business driving at highway speeds.
And that is one reason I very much like this little town instead of the city or the 'burbs.
Have both grocery shopping and health care very close to home.

Yesterday and day before, even the radio was overstimulating, both the music and the Cardinals ballgame.

Well, there's a longer answer than what was in mind at the start.
Apparently something in me needed to say all those things.

 

[linusbert]

same for me.
since my first crash i eat every 2-3 hours, also mostly carbs. right now i am on 2000-2500 calories / day , 30-60g fat , maybe 60g protein and most of calories from carbs. noodles, rice bread, potatoes.
and i need those, if i switch same calories of carbs with fats, i am much worse the next day. also it must be rather easy carbs.
i found that insulin spiking foods somehow are the best.
so proteins and carbs.

i am also loosing weight the last year, dont know exactly why. i am basically on same calories since 5 years. switched some foods in and out. now i am loosing weight. since i am loosing weight the last month my blood pressure went from 140/150 - 90/100 to 120/80 and my resting heart rate from 88 to 70'ish.
but when i add more fats again, i seam to gain weight. not feeling better though. its like body does not know what to do with fat and only stores it in stead of energy.

 

[Wishful]

This isn't a "This is absolutely the answer!", but do consider the possibility that your microbiome is involved, and changes during a crash ... or maybe is part of the crash. Shift a few strain ratios, and maybe the carb-consumers explode their population and send feedback to the brain in the form of carb-craving. I suppose you could experiment with probiotics, prebiotics and fibre both in an out of a crash to see whether that makes any difference.

My ME definitely responds differently to simple carbs vs complex carbs and fibre. I bought some more probiotics yesterday, so I'm hoping that will stop the brainfog and lethargy I've suffered over the past week or two after a digestive incident. I also picked up a couple of gut books while at the library. Maybe I'll learn something new and hopefully useful.

 

[bradipa]

This isn't a "This is absolutely the answer!", but do consider the possibility that your microbiome is involved,

Sounds plausible to me, wishful.

I suppose you could experiment with probiotics, prebiotics and fibre both in an out of a crash to see whether that makes any difference.

I did a bit of experimenting, and during a crash I'm clearly better and crashes trend to be shorter with lots of simple carbs, while when I'm "fine" (well you know...), I need fibers and complex carbs in order to possibly maintain this state.

bought some more probiotics yesterday, so I'm hoping that will stop the brainfog

I've been taking propionic acid for several weeks now, and from the third week on my brainfog lifted considerably. As always, hard to say if it's because of this, but there is a correlation in time and I didn't consciously do any changes elsewhere.

 

[crussher]

Yes, I've had the experience as well of 'craving calories' like mad when I'm in PEM. When I was a carnivore, this would manifest as a desire for 8 eggs (mainly the yolks), a cod liver (very calorific) and - not technically carnivore but shows how much I was craving energy - a mound of white rice with melted butter!

 

[Dysfunkion]

This one happens to me too, it's as if my body burns lots of calories just doing the most ordinary things in a state of perpetual PEM. It's very hard for me to keep on weight, if I'm going through a extremely stressful period I could probably eat dinner every day and not go anywhere weight wise besides the weight of it all physically going right through me.

My cravings when this happens tend to be lots of fish and some rice. Essentially just feed me 50 pounds of raw salmon and squid, some soy sauce, avocado and lots of sushi rice. My cravings can often be summed up normally as fatty, delicious sushi. Now when I'm actually crashed this changes into something horrible. lol It becomes instead what can be summed up as "mall pretzel bites and movie theater popcorn loaded with butter and salt".

 

[wabi-sabi]

Well this is very interesting! Glad to know I am not alone in needing more calories or different food during a crash.

I notice weight loss when I try to eat more protein, despite this being necessary for having muscles. It just seems odd to be burning through oodles of calories while lying in bed doing nothing, but I guess that's us.

 

[kushami]

On the Health Rising blog recently there was mention of a study in which people’s brains were extracting more oxygen than usual from the blood that passed through the brain. That would have to relate back to more caloric expenditure somewhere, wouldn’t it – either the effort of “sucking out” the extra oxygen, or the effort to replenish the abnormally depleted oxygen in the blood.

And presumably that would be more pronounced during a flare. (They should have tested the participants again the next day, but I don’t think they did.)