Never Ask Us if We’re Hungry — The Answer’s Always No

June 9, 2014

If you’re ever at Jody Smith‘s house, don’t bother asking anybody if they are hungry …

pixabay-kitchen

One of the most ridiculous questions you can ask in my house is “Are you hungry?”

There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.

Or rather, we knew we should have eaten something about twenty minutes ago and saved ourselves this distress.

For me, this realization hit after I started eating low carb. I was making a point of eating about every four hours — something I had not been doing till I changed to the new eating style.

One of the unexpected perks was that the blood sugar problems I was apparently having by not eating often enough (because I never got hungry) dissipated enormously. From that point on, I did not bother to ask myself if I was hungry. I simply went by the clock.

If for some reason I couldn’t grab some food in the allotted time, I still wouldn’t be hungry. Stomach wasn’t growling, no pangs at all.

But when I started having thoughts dissolve half-formed, when my lips started to tingle and vertigo would make me sway, when a sense of rushing electricity would surge up and down in my arms and my fingers would cease to obey me … I knew it was time to drop everything before it literally dropped me.

I’d go for some protein, some fat … Slice off a piece of leftover ham or roast beef, mix some tuna with mayonnaise, if all else failed, scoop some of the hamburger out of the cooked spaghetti sauce (for the carb eaters in the house) and nuke it, or have a couple of spoons of natural peanut butter.

Eat, rest, and wait 20 minutes. I’d begin to feel a little normal then. Or my ME/CFS “normal”. You know what I mean.

My husband Alan has fibromyalgia and also doesn’t get hungry. And he used to get quite irritated when I’d try to get him to eat. Never used to have breakfast or lunch. Part of the reason for that was a lack of money, but also it was his lack of appetite.

I started working on that. He’d eat but he wouldn’t enjoy it. Not that the food wasn’t good, prepared by such an excellent cook — but he wasn’t hungry. He never felt like eating.

Uphill battle, trying to get food into someone who I think in his heart of hearts really didn’t believe he needed it. Certainly his stomach was not cooperating. When he would check to see if his stomach felt empty, or in need of some sustenance, its answer was always, “Of course not.”

Eventually I won this particular ongoing skirmish. He got used to eating, and got to appreciate how much better he’d feel as the day wore on and he was no longer brain-dead or needing to fall down on his face and call it quits by 3 or 4 p.m. every day.

He gradually became convinced that eating food regularly was a good thing. Even for someone like him who never got hungry.

You’d think I would be on top of this thing for my son Jesse when he got ME/CFS seven years or so ago. But it took awhile for me to catch on. And I’m still liable to forget how inane this is and find myself asking him if he’s hungry.

The answer is always no. But that doesn’t mean he doesn’t desperately need something to eat.

Jesse is not a low carb guy. I am suspicious that there is a gluten sensitivity at the very least in there for him but so far we’re focusing on getting food into him that he can stand to swallow.

Some of that is still sandwiches and toast, but not as much as it used to be. We’ve been leaning heavy on potatoes for awhile, that seems to be working okay. And there are more sources of protein that he can tolerate, he even likes some of them now.

If I didn’t put food in front of him he would rarely eat. Some of that is because it’s just gnarly hard for him to do much because he is sick. And some of it is because … he isn’t hungry.

But I don’t want him wasting away any more than he already has, and I’d like his brain to be able to work and his body to function. So hungry or not, boy, it’s time to eat.

We remind me of diabetics, who are able to have some control over their blood sugar and their ability to function with the foods they eat and when they eat them. If we do what needs doing when it needs to be done it helps us to be a little more stable.

I actually get hungry sometimes these days. Catches me by surprise when it happens. Its sheer novelty outweighs the physical discomfort of hunger. I am so pleased to have reached the point of being able to have hunger pangs again, I can’t begin to tell you.

I am looking forward to the day when my son gives me a different answer than the one I’ve gotten for over seven years. When I ask him “Are you hungry?” I will be thrilled to some day hear him say, “Yeah, I’m starving!”

 

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30 comments

{ 30 comments… read them below or add one }

Sinclair June 9, 2014 at 1:35 pm

Thanks for the post Jody.
This is very interesting and quite similar to the symptoms and the way I feel them.
I would strongly appreciate if anyone could provide the scientific explanation or hypothesis behind this pattern…

lnester7 June 9, 2014 at 1:48 pm

This is soooo the opposite of my case, I get soooooo hungry right before a crash Is crazy!!! I mean it cannot even be called hunger more like desperation to put put food in my mouth or I need to lay down right now type of reaction.

I am hungry all day. Even when off bad carbs.

tatt June 9, 2014 at 2:35 pm

I was always hungry and if I didn't eat regularly it would feel as if my stomach was eating itself. Then I started taking atp and I no longer feel hungry all the time.

A gluten free diet made me so well for years that I was going to the gym – and thinking I was cured until I overdid it. I believe that the cortisol increse when hungry is bad for you.

TigerLilea June 9, 2014 at 2:46 pm

I've never lost my appetite in the 23 years that I've had CFS. I can't help but wonder with FM if the loss of appetite isn't connected to pain meds. My sister-in-law has FM and she might eat one meal per day on a good day. Most days she just snacks. She never had that problem until she started on the more heavy duty pain meds. :(

PennyIA June 9, 2014 at 3:31 pm
TigerLilea

I've never lost my appetite in the 23 years that I've had CFS. I can't help but wonder with FM if the loss of appetite isn't connected to pain meds. My sister-in-law has FM and she might eat one meal per day on a good day. Most days she just snacks. She never had that problem until she started on the more heavy duty pain meds. :(

I know that my appetite is totally gone the second I take any pain meds – even just ibuprofen or aspirin. In fact, I used to be so hungry ALL THE TIME, that I had to get into the habit of eating a meal every two hours because otherwise I'd only eat junk. But I've been on aspirin for a few days lately to treat a new symptom and bam – there went my appetite – in fact, I don't think I had anything to eat at all yesterday after noon.

whodathunkit June 9, 2014 at 6:01 pm

Nice post, @Jody. I don't have this problem but it's an interesting phenomenon, nonetheless.

I've theorized that for some people, the galloping munchies of unknown origin are just the body's way of trying to force us to give it the fuel it needs to make ATP. We can't make enough of it, but the body will always try to get it from somewhere. Hence the insatiable hunger.

I have not been diagnosed with CFS but share a lot of symptoms and problems with CFS people. I've always wanted to eat like there's no tomorrow, but when I first started methylation supplements was the first time in 20 years I experienced a spontaneous reduction in appetite. Kind of a minor miracle.

Sadly, my galloping munchies are increasing a bit again due to some tweaks in my regimen. Looking for more solutions now.

@tatt, what brand of ATP are you taking?

ggingues June 9, 2014 at 8:39 pm
PennyIA

I know that my appetite is totally gone the second I take any pain meds – even just ibuprofen or aspirin. In fact, I used to be so hungry ALL THE TIME, that I had to get into the habit of eating a meal every two hours because otherwise I'd only eat junk. But I've been on aspirin for a few days lately to treat a new symptom and bam – there went my appetite – in fact, I don't think I had anything to eat at all yesterday after noon.

Hmm, would this be good for weight reduction then?

GG

Sing June 9, 2014 at 8:55 pm

Interesting article, Jody. I would think the lack of hunger is connected to a higher leptin level with a good sensitivity to it.

When I started to become seriously affected with this illness, I lost my appetite. This really frightened me, as I had had a few brief brushes with anorexia years before, and I did not trust that this wouldn't get going on. My lack of appetite was not from anorexia but was a function of whatever was happening in my body with ME/CFS. After a few months of this no-appetite condition, I decided to really fight it. I pushed myself to eat. In fact I made myself have seconds once a day, for good measure. I pushed somewhat more food on myself than I actually needed. After awhile, this seemed to bring back my real appetite, and my food consumption could start to take a more normal course.

For those who are hungry all the time, or too often, I want to say that never being hungry wouldn't be a change in your favor either.

Find a way of eating which helps you/us all to stay in balance during the day, as much as possible. Being out of balance in any direction will cause one's health to go down hill–and that ain't worth it!

Little Bluestem June 10, 2014 at 1:56 am
lnester7

I mean it cannot even be called hunger more like desperation to put put food in my mouth or I need to lay down right now type of reaction.

@lnester7, This sounds like low blood sugar.

Little Bluestem June 10, 2014 at 2:08 am

I haven't had an appetite in years. I have had a tendency to low blood sugar most/all of my life, so I know I have to eat on schedule.

I don't have any difficulty eating. Some of the food actually tastes good to me (especially that which isn't good for me).

Victoria June 10, 2014 at 2:29 am

I suspect some of the lack of appetite is purely that many ME/CFS/FM sufferers are too tired or lacking the energy to shop/prepare/cook food. I know that when I was still working full time, I would finally get in the front door and sit in a heap, (often in the dark with my coat on in winter), too tired to take my coat off and walk to the kitchen.

Eventually, a couple of hours later, I would grab some bread from the freezer and make a sandwich (I am gluten/grain intolerant), purely to put something in my digestive system. Of course, my lethargy would increase with the wheat consumption and I would invariably fall asleep in the chair, without having eaten a sensible nutritious meal. It was not that I didn't have my favourite foods in the fridge. It was merely that I was too tired to prepare or cook a meal.

Little Bluestem June 10, 2014 at 2:35 am

When I was still working, I would come home home hungry and exhausted, but there would be no food and dirty dishes. I would decide that I could be asleep, and thus unaware of the hunger, faster than I could wash dishes, go to the store (a few blocks away), and fix a meal. I realized that was not a good way to deal with the situation, but I was too exhausted to care.

xks201 June 10, 2014 at 3:22 am
lnester7

This is soooo the opposite of my case, I get soooooo hungry right before a crash Is crazy!!! I mean it cannot even be called hunger more like desperation to put put food in my mouth or I need to lay down right now type of reaction.

I am hungry all day. Even when off bad carbs.

Hungry all day is a classic low cortisol symptom.

xks201 June 10, 2014 at 3:25 am
Sing

Interesting article, Jody. I would think the lack of hunger is connected to a higher leptin level with a good sensitivity to it.

When I started to become seriously affected with this illness, I lost my appetite. This really frightened me, as I had had a few brief brushes with anorexia years before, and I did not trust that this wouldn't get going on. My lack of appetite was not from anorexia but was a function of whatever was happening in my body with ME/CFS. After a few months of this no-appetite condition, I decided to really fight it. I pushed myself to eat. In fact I made myself have seconds once a day, for good measure. I pushed somewhat more food on myself than I actually needed. After awhile, this seemed to bring back my real appetite, and my food consumption could start to take a more normal course.

For those who are hungry all the time, or too often, I want to say that never being hungry wouldn't be a change in your favor either.

Find a way of eating which helps you/us all to stay in balance during the day, as much as possible. Being out of balance in any direction will cause one's health to go down hill–and that ain't worth it!

I think the last thing I would say about a cfs person with low hunger is that they have high leptin sensitivity. That is like commenting on the craftsmanship of the Titanic as it was split in half nd sinking. It is more like the metabolism is so deranged and probably in a hibernation like state for whatever reason is causing the cfs.

xks201 June 10, 2014 at 3:27 am
lnester7

This is soooo the opposite of my case, I get soooooo hungry right before a crash Is crazy!!! I mean it cannot even be called hunger more like desperation to put put food in my mouth or I need to lay down right now type of reaction.

I am hungry all day. Even when off bad carbs.

You most likely have a cortisol problem. Congratulate yourself that your version of cfs Is potentially an easy fix with replacement hydrocortisone.

xks201 June 10, 2014 at 3:29 am

Just a general comment here…When I began hormone replacement therapy for my borderline deficiencies such as hgh, sex hormones, thyroid….my appetite picked back up. Metabolism was brought back to life. I'm sure most of you especially if middle aged or greater are having some hormone involvement here.

manna June 10, 2014 at 6:12 am

i would say that i have no natural hunger. I can crave food but i see that as malnutrition and not natural hunger. Considering most have low, to no, stomach acid, the usual hunger pangs and tummy rumbling could be expected to be absent, id expect.

Rachael June 10, 2014 at 7:27 am

Sickness behaviour is driven by the release of cytokines. Anyone who has experienced an episode of viral or bacterial infection knows well the subjective feelings of sickness in the form of malaise, fatigue and lack of appetite. Loss of appetite is a classic symptom of sickness behaviour. This reduction in appetite may be caused by an immune system that is in a chronic state of activation; just doesn't know when to quit..

Rachael June 10, 2014 at 9:18 am

BTW, When I started using antihistamines and other agents/supplements that helped to suppress my hyper-immune response, my appetite also returned.

Mya Symons June 10, 2014 at 8:51 pm

I know I get hungry because I can hear my stomach growling but I can't feel it. Nerve damage maybe? I am rarely hungry at breakfast or lunch. I force myself to eat a coconut flour muffin in the morning and a salad with lots of mixed greens for lunch. The greens make me feel so much better. They seem to help with pain. By supper time, sometimes I am hungry and sometimes I am not. It got extreme for awhile and I lost 35 pounds recently. I started a Ketogenic like fibromyalgia diet recently (low carb with lots of veggies) and suddenly I also got some of my appetite back. I don't understand it, but it is nice to actually want to eat. When I am not hungry, unfortunately, I still crave chocolate and when I eat it there is so much pain. I think the chocolate is an addiction rather than satisfying hunger.

I wonder why cutting back on carbs seems to help?

I know it also has to do with food not moving through my digestive system fast enough. I was given some Amitiza recently and it helps a little. However, I am not sure I would recommend it. Because of the nerve problems, it is hard to feel when I need to go to the bathroom and I end up having to run to the bathroom at the last minute. It does work some if a person is in very desperate need of a solution to slow digestion.

PennyIA June 11, 2014 at 8:18 am
Victoria

I suspect some of the lack of appetite is purely that many ME/CFS/FM sufferers are too tired or lacking the energy to shop/prepare/cook food. I know that when I was still working full time, I would finally get in the front door and sit in a heap, (often in the dark with my coat on in winter), too tired to take my coat off and walk to the kitchen.

Eventually, a couple of hours later, I would grab some bread from the freezer and make a sandwich (I am gluten/grain intolerant), purely to put something in my digestive system. Of course, my lethargy would increase with the wheat consumption and I would invariably fall asleep in the chair, without having eaten a sensible nutritious meal. It was not that I didn't have my favourite foods in the fridge. It was merely that I was too tired to prepare or cook a meal.

Having been on several sides of this coin… I do think that's a factor as well. But it feels differently.

To me, I can have a 'not hungry enough to use my last spoon' … it's not that I'm not hungry. It's that it's just not worth the effort to do anything about it, yet. Once you get hungry enough, you start getting desparate and if you don't have someone to help, you break down and eat food that isn't as good for you. I'm guilty enough that this happens more often than I would like. And it does concern me when I feed my ten year old junk food because I'm too tired to actually cook. But junk food is better than no food when there just is no other choice.

That said, I'm on ibuprofen right now… and I have no appetitie at all. I'm just not hungry. I try to eat every two hours – but can go ten hours without really thinking about food. AND when I do think about it, it's more along the lines of my head telling me I've missed three meal times and going to bed without eating isn't likely to go well – instead of my stomach reminding me to put something in it.

My issue is that when I have no appetite, I start thinking about food. Food that I like, nutritious or not… and even simple grab and go food – like this morning – I have a gf/df muffin sitting beside me right now that is really yummy. But I have to actually force myself to eat it because thinking about eating it just turns my stomach. It actually tastes good, but my body isn't willing to eat it because my head tells me I don't want it.

Funny enough, keeping my stomach full while on ibuprofen helps reduce the issue of stomach upset. So, I know I need to eat if I take them otherwise I'll get nauseous. But it's actually a burden to eat. My body just isn't sending me any positive signals that eating is a good thing right now.

Those are two very different experiences. I'm giving the ibuprofen another hour and if it really isn't going to help my pain more than it is right now, it's not worth taking it.

whodathunkit June 11, 2014 at 10:55 am
PennylA

Funny enough, keeping my stomach full while on ibuprofen helps reduce the issue of stomach upset. So, I know I need to eat if I take them otherwise I'll get nauseous.

It's crucial to have food in the stomach when taking any kind of NSAID. They can really wreck your stomach. I actually date my digestive problems back to when I was taking lots of prescription-strength ibuprofen for really bad pain during my monthlies. I didn't know what NSAIDS could do to your stomach at the time so I would take them on an empty stomach thinking that was best to help them be effective. Damn near ate a hole in my stomach before I figured out what was going on. I actually thought I was developing an ulcer until I figured out it was the ibuprofen.

My stomach has never been quite the same since. It's much more sensitive than it was before that.

apogan June 11, 2014 at 9:14 pm
Sinclair

Thanks for the post Jody.
This is very interesting and quite similar to the symptoms and the way I feel them.
I would strongly appreciate if anyone could provide the scientific explanation or hypothesis behind this pattern…

Have your zinc levels checked. I used to have this problem (for years) and finally connected to very low levels of zinc. When I added zinc my appetite returned.

valentinelynx June 26, 2014 at 1:06 am
whodathunkit
PennylA

Funny enough, keeping my stomach full while on ibuprofen helps reduce the issue of stomach upset. So, I know I need to eat if I take them otherwise I'll get nauseous.

It's crucial to have food in the stomach when taking any kind of NSAID. They can really wreck your stomach. I actually date my digestive problems back to when I was taking lots of prescription-strength ibuprofen for really bad pain during my monthlies. I didn't know what NSAIDS could do to your stomach at the time so I would take them on an empty stomach thinking that was best to help them be effective. Damn near ate a hole in my stomach before I figured out what was going on. I actually thought I was developing an ulcer until I figured out it was the ibuprofen.

My stomach has never been quite the same since. It's much more sensitive than it was before that.

Actually, NSAIDs (including aspirin) don't directly burn your stomach. They inhibit the protective prostaglandins that prevent damage from stomach acid. That's why the Cox-2 inhibitors, which cause less prostaglandin inhibition, are safer for the GI tract, albeit more expensive and largely unavailable in the US (only Celebrex is left and it is wimpy!). However, having an empty stomach and no protection against stomach acid will increase your likelihood of trouble. Personally, I need to take a proton pump inhibitor (omeprazole, lansoprazole or relative) or I get gastritis or ulcers with my ibuprofen. But I need my ibuprofen. It's a delicate balance.

bertiedog June 26, 2014 at 1:41 am

Anybody who finds that they cannot digest the food they eat, that is it sits in the stomach for a long time, would probably benefit from good digestive enzymes and also betaine hydrochloride. Because of the lack of energy and ATP it means we cannot digest our food properly so that is why we benefit from these two, they will do the work for us.

Also once over the age of 50 it is common for people to have low stomach acid anyway but the medical profession give them acid blockers causing even more serious problems. As is so often the case the doctors don't get to the route of the cause but give drugs which are the opposite of what is really needed.

Furthermore when there are adrenal and thyroid issues which aren't addressed it is almost certain that there will be low stomach acid and with ME/CFS where there is hypo function of the HPA axis I would think that the vast majority of sufferers as they get older would have this problem.

Low stomach acid will also mean that bugs aren't destroyed in the gut as they should be so it can be very important to look out for this.

Pam

taniaaust1 June 29, 2014 at 5:04 am

I agree with someone else that for many of us its part of sickness behaviour, when someone has a virus (or virus reactivation) one often doesnt feel like eatting. (Im not refering here in the difficulty in cooking which is another factor too but having no appetite for something at all and possibly not even wanting to eat when another is going to get it for you).
……….

I think I read somewhere that the autonomic nervous system plays a part in appetite too.
…….

I find it hard to eat (I dont "feel" like eatting) in the mornings. I often have my first meal of the day around 2-3pm (brunch). My friend gets quite annoyed at me as it does noticably affect my mood when I havent eatten and he can always tell (He will often coach me into eatting). Im also often feeling weaker too due to this. Its still hard to eat at a decent time even knowing these things.

Once I do thou get to the point where Im finally wanting to eat (sometimes the smell of something very nice can set it off if another gets me something). Im suddenly ravously hungry.. and will binge if Im not careful.

Thomas July 7, 2014 at 5:31 pm

Remeron did wonders for my poor appetite and associated gastroparesis. Not normal appetite but very very close sometimes.

SilverbladeTE July 7, 2014 at 6:28 pm

Sorry but I have the OPPOSITE problem!

if I don't eat, my stomach hurts
I feel weak so I want to eat for energy
I "comfort eat" because I am depressed and often unable to do much to take my mind sufficiently off things

I was poisoned as a little kid, so after years of being extremely thin because of stomach problems, I learned how to control my puke reflex and asshole, to put it bluntly :/
After that it took something extraordinary to make me puke or lose my appetite etc

Though I have to say, having Norovirus and ME at the same time has only ever been exceeded in awfulness by kidney stones, in my experience. O M F G…. o_O :eek::wide-eyed: :ill: :confused:
At least when I had meningitis I was completely out of it, for several days, by merciful comparison :p

So I would caution that there are exceptions to rules as we're all different :)

then again I am on testosterone, maybe that had an effect on +appetite?

Tired of being sick July 7, 2014 at 6:35 pm

1st 3 posts after the 1st post should of ended this discussion..

The RIGHT kind of Foods make me feel half decent

for half an hour that is………..

What you crave is what you eat

Listen to your visceral

after all

your tummy is where this feeling of self awareness originates……….

If you crave sugar
Suck on some
Hard candy, Vitamin C/throat/cough or dry mouth drops always makes me feel better….
This is a constant SMALL supply of sugar(tricking our message center/immune dysfunction)……

And no I'm not diabetic…..

If you crave salt(low blood volume)

Prepare a couple soft pretzels with lots of SEA salt

And lots of fresh ozone generated water (if available) to wash it all down……..

Digestive problems

Fresh ozone generated water

Eat berries berries berries and more berries,EVERYDAY..

These are just my opinions of course..

Misfit Toy July 21, 2014 at 9:42 pm

I am never hungry. It's rare. Especially after last few years that I've been more ill. Fibro worse, fatigue worse=no appetite. I used to preach….EAT BREAKFAST. Most important meal of day. I wake up and could go for hours without eating. I usually make a protein drink. Then I have nuts or a slice of bacon…that's it.

I skip lunch normally. Awful, I know. I have no appetite.

I force dinner and am hungrier for it.

I always wonder what happened? I eat fruit, rice chips, veggies raw with hummus but big meals are not as important anymore.

I want my hunger back. I miss it.

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