Never hungry

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Hi guys.

I have a question and hope someone may have the answer.

I have had ME for 4 years now, and spend more time in bed than I do out of it. I sleep an average of 14 hours a day.For the last year I have eaten less and less,I can go for days with out eating, then I might have a an ice cream or an apple, I'm over weight but was  when I worked so I would say size 16. The thing is I know that if I lived alone food would never be in my thoughts, but I have a very good and understanding husband, so he nags me to eat, I tend to push the food round the plate. I don't worry about it and I have lost no weight, but my husband said find out if anyone else has this problem, is it a symptom of the ME.

Today is Wednesday and the last time I had a meal was Saturday and it was chicken salad but I left the chicken as I have gone off meat so I only had salads.

sorry to be going on but has some one else having this problem as I know it's not good for me but I'm just not hungry.

look forward to reading your reply.

Debbie

 

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  • Posted

    Hi Debbie. ..I'm so sorry to hear you have this awful disability. Could it be the medication your on? Lots of the meds can an do cause weight gain. Also ask your doctor to do some blood test in make sure it's not your thyroid or anything else. I too sleep a lot and suffer endless pain....I also have fibromyalgia amongst a host of other disabilities so I really feel for you and understand how your feeling. All my life was have been a size 8/10 and I have put on nearly 2 stone! I'm actually on a diet as my daughters told me I look fat....but I can still get into a size 12. Your husband sounds wonderful and supportive and we need that. Because we are not active in any way we are bound to gain weight. I wish you well and hope you have more good days than bad. Gentle hugs xxx
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    • Posted

      Hi

      Thankyou for your answer it's great to know there are people you can talk to about Me.

      IAm sorry to hear that your daughters do not know what a dreadful  illness this is that you have.

      I also have fibromyalgia,at the moment I am having bad pain in my legs and waiting to see my doc. If some of this does not make sense,I'm sorry but I find it difficult to concentrate . It took 25 min for me to typ this, I was a administration manager .lol we have to laugh sometimesdont we.

      I am returning a hug to you x

      debbie

      age 55

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  • Posted

    I found I ate less when my ME was at its worst. I think it was a combination of a lack of the energy to chew it, and the fact that I couldn't taste the food, most things tasted different from usual, and some things just tasted like cardboard. So I tried nutrition drinks which simply needed swallowing, and soft foods like scrambled eggs and jelly. I also had lots of sore throats, so these things were easier to get down without pain. I don't know if these ideas would help you?
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  • Posted

    I had a severe loss of appetite during the first years of my ME/CFS. I did force myself to get adequate nutrition, though. I was able to eat some fairly nutritious soups. Could you at least do that? If not, try a nutritious protein drink, like Glucerna. My elderly mother recently had a few weeks of total appetite loss, and her doctor recommended Glucerna, rather that Ensure, because she has Type II diabetes. You rreally need to get proper nutrition, and going days without eating can't be good for your ME/CFS. Also, when you do eat, it's important to reach for healthy foods, rather than, say, ice cream. You don't want to end up with another condition, like Type II diabetes.  If you're on the heavy side, sedentary, and eating sugary stuff like ice cream, you might be putting yourself at risk for this condition.
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  • Posted

    Sorry to here your weight problem. Eat less put on weight doesn't make sense does it. I can only make comments on eating, I eat everything my wife cooks, no it is not what I used to eat. It is a lot less but then I am doing very little. My mind tells me I will get better but not if I do not eat. Taste buds have changed a lot doesn't taste as it used to. Deb I don't know if you are still preparing the meals or not but tell your self I must eat even if I can't face it. Good Luck
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  • Posted

    Hiya, 

    I don't know if this is the same thing or not but I have a really hard time figuring out if I am hungry and will struggle to eat or just not feel like food and when I do try to eat food makes me either feel sick afterwards or I will only be able to eat a few mouthfuls before I'm feeling like the food is making me gag. 

    I have also really gone off meat since I got sick - I try to get around my eating problem by making smoothies (my favourite contains banana, peanut butter, oats, frozen berries, soy milk and coconut water) I find drinking is much  easier than eating.

    I find that I feel much better when I make myself eat food regularly even if I am not hungry for it or only manage a few mouthfuls. If you are not eating it will be difficult to distinguish between cfs symptoms and the tiredness and fogginess that come from not having eaten.

    I'm lucky in that I also occasionally get the symptom that I feel hungry all the time so I think on those days I tend to overeat which probably makes up for the days I struggle. I also make sure that where possible the foods I eat are healthy - if you want ice cream make your own from frozen bananas, frozen cherries, coca powder and soya milk (it's instant just put those ingredients in a blender and it's done) - not a meal but it will have more nutritional value than ice cream. 

    Anyway, I don't know if any of this will be of use but I thought I'd share just in case 

    best of luck!

    Toni

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  • Posted

    I don't think you should be worrying about your weight at all at the moment. Your are ill so it really doesn't matter what you weigh just now. The important thing you should focus on is getting adequate nutrition or you run the risk of being defficient in a lot of things which will make you feel even more tired and you will feel even less like eating - it's a vicious circle!! When I'm feeling worse I don't have much appetite either so just have easy things that don't involve much chewing such as soup (preferably home made), smoothies, yoghurt, scrambled eggs, even a small plate of breakfast cereal,etc. Baked potatoes (you don't need to eat the skin) or mashed potatoes with something like cheese, beans, cottage cheese or tuna for protein. I invented a quick meal I enjoy - mash some potatoes, mix a tin of tuna through it, put in dish, top with sliced tomato and grated cheese and put under the grill. It's easy to eat and tasty. You could have it with some salad or bit broccoli. Another thing I would recommend is that you take a good quality multivitamin every day. If you have problems swallowing tablets     (like me) you can get chewable ones. Early on in my illness I had a lot of problems with my stomach and digestion, on loads of tablets but nothing worked and ended up getting an endoscopy which showed nothing. After the endoscopy I had problems swallowing and stopped eating all together, ended up anaemia and on special drinks from the doctor. Felt really drained, no energy at all. You don't want to end up like this so it's really important you try and eat something as the less you eat the less you want to eat. By the way I changed doctors and he found out the cause of my stomach problems right away - it was a bug that lives in people's systems called helicobacter pylori - took a course of antibiotics and anacids and it went away. My stomach is fine now. Wish I had changed doctor sooner!! Good luck you with your eating problems and remember you are ill - be good to yourself!

     

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    • Posted

      Just a quick question, how did they diagnose helicobacter pylori? I've read a lot that says that you can have the bug but it doesn't always get picked up during blood tests and endoscopy biopsy etc. 
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    • Posted

      I think it was a saliva sample they used to pick it up - was a few years ago I got tested for it. I had stomach problems for years with symptoms like nausea, pain in stomach, bloating, acid indegestion, loss of appetite, etc. At first they they thought it was caused by anti-inflammatory painkillers, then thought it was IBS, then an ulcer. I tried loads of different tablets, did elimination diet cutting out dairy, wheat, gluten, etc and nothing made a difference. Endoscopy showed up nothing. Moved house, got new doctor and first time I saw him he suggested it could be helicobacter pylori, got tested, showed up positive, took course of antibiotics and antacids for a month (I think) and all the symptoms went away! I would recommend anyone with ongoing stomach problems to mention this to their doctor and get tested for HP as it could be really simple to solve.
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  • Posted

    I was diagnosed years ago and have lived with the constant question of how do you forget to eat! On a regular basis it was me asking when we had something for dinner so i could figure out when the last time i ate was. I actually grew to think it was normal not to be hungry n just skip meals with this illness. My fiance now will make my plate so I sit with him and eat at least dinner every night honestly with the not hungry issue I forget to eat for days
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  • Posted

    Hello Deb

    Have you had any blood tests recently?  If so may I suggest that you check to see whether your thyroid function is OK.  Doctors frequently don't pick up on thyroid malfunction until its crashed completely necessitating the need for long term medication. 

    What made me think about this was the fact that you are over weight yet aren't eating much.  This is what happens with hypothyroidism.  Just a thought.  Good luck!

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  • Posted

    Hi guys thank you all for your advice, I will take on board what you have said. I do take medication as I have an under active thyroid.

    This Friday I'm at the docs again for the pain in my legs as they are getting worse and I find it harder and harder to walk with the pain.

    does anyone else have problems with their legs.

    cheers all good to know your there.

    x

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    • Posted

      I do in fact the last 2 days it's been severe mine comes and goes along with the pain in my arms and hands
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    • Posted

      I occasionally get pain in my hip joints and I get an ache in my legs that goes from my hip all the way down my leg - it gets really uncomfortable and I tend to get it for a few weeks and then it just disappears
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  • Posted

    Hi Toni

    my leg pain is like yours it is in the whole leg.

    while seeing the doc today he seems to think it is a nerve problem, I am also to take yet another blood test for vit D as this can cause the same pain as ME and fibromyalgia. I have been told I can take up to 70mg or more of amitriptyline, if it does not help then I have to go to a pain clinic.

    Has anyone been to a clinic for  pain.

    chin up and hugs for your help.

    Debrax

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