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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. Mya Symons

    Mya Symons Mya Symons

    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.
  2. PennyIA

    PennyIA Senior Member

    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.
    Jody likes this.
  3. whodathunkit

    whodathunkit Senior Member

    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.
    rosie26, Little Bluestem and Jody like this.
  4. apogan


    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.
    Sinclair and Jody like this.
  5. valentinelynx

    valentinelynx Senior Member

    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.
  6. bertiedog

    bertiedog Senior Member

    South East England, UK
    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.

    Jody likes this.
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    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.
    Jody likes this.
  8. Thomas

    Thomas Senior Member

    Remeron did wonders for my poor appetite and associated gastroparesis. Not normal appetite but very very close sometimes.
    Jody likes this.
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    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?
    Jody likes this.
  10. Tired of being sick

    Tired of being sick Senior Member

    Western PA USA
    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..
    Last edited: Jul 7, 2014
  11. Misfit Toy

    Misfit Toy Senior Member

    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.
    Jody likes this.
  12. anniekim

    anniekim Senior Member

    Am hungry all the time!!!
    Jody likes this.
  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    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.
  14. mtnbibliophile


    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.
  15. Daffodil

    Daffodil Senior Member

    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.
  16. *GG*

    *GG* senior member

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

  17. dannybex

    dannybex Senior Member

    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.
  18. happy


    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).
  19. Jody

    Jody Senior Member


    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?
  20. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I am not sure this is the opposite. I don't get hungry, I do get a kind of pain. That pain gets worse. Its not hunger, its something else.

    I also find that sometimes I need to eat to stay focused, and other times if I eat I get fog. Sigh.

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