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

Discussion in 'Phoenix Rising Articles' started by Jody, Jun 9, 2014.

  1. Jody

    Jody Senior Member

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    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 ...

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    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
     
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  2. Sinclair

    Sinclair Senior Member

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    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...
     
    Jody likes this.
  3. lnester7

    lnester7 Seven

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    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.
     
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  4. tatt

    tatt

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    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.
     
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  5. TigerLilea

    TigerLilea Senior Member

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    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. :(
     
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  6. PennyIA

    PennyIA Senior Member

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    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.
     
    Jody likes this.
  7. whodathunkit

    whodathunkit Senior Member

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    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?
     
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  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hmm, would this be good for weight reduction then?

    GG
     
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  9. Sing

    Sing Senior Member

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    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!
     
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  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    @lnester7, This sounds like low blood sugar.
     
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    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).
     
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  12. Victoria

    Victoria Senior Member

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    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.
     
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  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    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.
     
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  14. xks201

    xks201 Senior Member

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    Hungry all day is a classic low cortisol symptom.
     
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  15. xks201

    xks201 Senior Member

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    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.
     
  16. xks201

    xks201 Senior Member

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    You most likely have a cortisol problem. Congratulate yourself that your version of cfs Is potentially an easy fix with replacement hydrocortisone.
     
  17. xks201

    xks201 Senior Member

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    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.
     
  18. manna

    manna Senior Member

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    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.
     
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  19. Rachael

    Rachael

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    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..
     
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  20. Rachael

    Rachael

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