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Never Ask Us if We're Hungry -- The Answer's Always No

Jody submitted a new blog post:

Never Ask Us if We're Hungry -- The Answer's Always No

If you're ever at Jody Smith's house, don't bother asking anybody if they are hungry ...



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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Continue reading the Original Blog Post
 
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.
 
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.
 
PennylA said:
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.
 
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.
 
PennylA said:
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.
 
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
 
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.
 
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?
 
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..
 
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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.
 
I'm almost never hungry. That is why I am still up. The meal I planned to eat at 12:30 somehow didn't happen until 2. Then I had to wait to take the pills I take on an empty stomach. Now I am waiting to have my bedtime snack.
 
Not only am I rarely hungry, I am never THIRSTY, and my dehydration can get pretty bad before I realize why I'm feeling so terrible. For the times when I realize I've gone too long without food and don't have enough energy to go to the kitchen or prepare any food, I keep organic peanut butter and whole wheat crackers within arm's reach. And I always have a bottle of Gatorade within reach. My "working memory" is too far gone for me to remember that I have to eat regularly - in fact, the thought that I have to eat might occur to me but vanish before I've had a chance to do anything about it) - so I got one of those pill reminder clocks with four alarms per day. It helps, as long as I don't turn off the alarm and then forget to do whatever it was reminding me to do.
 
My hunger increased since I developed CFS - A LOT. I need to be full all the time it seems and when sickest, will awaken at night to eat. Even if I stull myself before bed, I will sometimes still get intense hunger a few hours later, albeit coupled with a little nausea...hard to explain.

I think there is some hormone problems causing me to never feel full. I tend to overeat compulsively and then regret.

There is also definitely some insulin resistance going on.

While on antibiotics, my hunger will start to normalize again.
 
My hunger increased since I developed CFS - A LOT. I need to be full all the time it seems and when sickest, will awaken at night to eat. Even if I stull myself before bed, I will sometimes still get intense hunger a few hours later, albeit coupled with a little nausea...hard to explain.

I think there is some hormone problems causing me to never feel full. I tend to overeat compulsively and then regret.

There is also definitely some insulin resistance going on.

While on antibiotics, my hunger will start to normalize again.

I don't think my appetite has increased since being sick, but it has not abated.

GG
 
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.
Apogan -- how much zinc did you take, and how long did it take to notice a difference?

Also, were you taking any other minerals away from the zinc?

Thank you.
 
I know this is an old thread, but I have to add this... it's a pattern that has been going on for a few years now. Maybe someone can help me find out what is happening with me.

During the winter months I am more tired than during summer and I need to eat all the time. I feel full and I still eat. Sometimes I feel like I need food like I need air. I stopped eating sweets this winter and my appetite went through the roof, as if my body was trying to get the high due to sheer number of calories ingested (rather than due to sugars). I used to also get all shaky and weak (the feeling of "I need to eat something or I'll collapse"), but I don't think this is a problem anymore.

Then spring/summer rolls around. First I get more energy. As it gets a little warmer I start feeling nauseous in the morning. The warmer the month, the more nauseous I get. Sometimes it's over in a few hours, sometimes it lasts for most of the day. Suddenly I'm not that hungry. I am still eating, but less frequently and smaller quantities. Even if I don't eat for a long time I don't get the shaky feeling, it feels like my body is functioning really well compared to winter (minus nausea). My craving for sweets is gone and I have no more feeling like I need to eat often to keep my body functioning. I'm losing weight which is very welcome after binging all winter, but this regime cannot be healthy.

My summer time symptoms sound like gastroparesis, but then how come I can eat such big meals during winter and not experience nausea or indigestion?

What could be the cause of my symptoms changing so much with the seasons? My main CFS symptoms are general fatigue, PEM, and cognitive problems (memory, difficulty finding words, brain fog, difficulty concentrating).
 
I know this is an old thread, but I have to add this... it's a pattern that has been going on for a few years now. Maybe someone can help me find out what is happening with me.

During the winter months I am more tired than during summer and I need to eat all the time. I feel full and I still eat. Sometimes I feel like I need food like I need air. I stopped eating sweets this winter and my appetite went through the roof, as if my body was trying to get the high due to sheer number of calories ingested (rather than due to sugars). I used to also get all shaky and weak (the feeling of "I need to eat something or I'll collapse"), but I don't think this is a problem anymore.

Then spring/summer rolls around. First I get more energy. As it gets a little warmer I start feeling nauseous in the morning. The warmer the month, the more nauseous I get. Sometimes it's over in a few hours, sometimes it lasts for most of the day. Suddenly I'm not that hungry. I am still eating, but less frequently and smaller quantities. Even if I don't eat for a long time I don't get the shaky feeling, it feels like my body is functioning really well compared to winter (minus nausea). My craving for sweets is gone and I have no more feeling like I need to eat often to keep my body functioning. I'm losing weight which is very welcome after binging all winter, but this regime cannot be healthy.

My summer time symptoms sound like gastroparesis, but then how come I can eat such big meals during winter and not experience nausea or indigestion?

What could be the cause of my symptoms changing so much with the seasons? My main CFS symptoms are general fatigue, PEM, and cognitive problems (memory, difficulty finding words, brain fog, difficulty concentrating).

happy,

I wish I could answer your questions. I have no basis for this suggestion -- other than my own experience -- just going to throw it out there.

Would you say you experience any symptoms of Seasonal Affect Disorder (SAD) in the fall and winter months? I ask this because I would change dramatically when the seasons changed. I'd be sortof healthy in the summer -- what I'd call a dull normal. But by the end of August - early September - I'd have a noticeable drop in energy, stamina, balance, cognition, panting for air, etc.. I'd start needing naps again. Then by late November or so I would have a BIG drop and be back to mostly bedridden vegetation stage again.

Come spring, these would very slowly ease up, as I would spend more time outside and would get half an hour in the sun in my backyard most days.

8 yrs ago I tried taking big doses of vitamin D supplements ... and for the first time in many years did not have my winter crash.

Do you take vitamin D supplements at all?