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Weight loss and no appetite...

Discussion in 'Gastrointestinal and Urinary' started by flower, Jan 27, 2012.

  1. flower

    flower

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    Any one else have weight loss and absolutely no appetite as symptoms. My weight is dropping alarmingly but my Dr doesnt appear to be bothered even though im now down to 40 kgs. It seems to come in cycles. My tummy tells me im hungry but Im just not feeling hungry! Ive tried every supplement going. Complan and milk based drinks just make me gag. I worry that people think I`m anorexic which just isnt the case at all.I am getting no where with the medical professionals in NZ over this.
     
  2. Clodomir

    Clodomir In hibernation mood

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    Hi Flower,

    Welcome to the club!

    It is ironic, but I also loose a lot of weight. i am now at 47, but few month ago, i was at 44kg.
    I gain weight by eating some avocado ( nearly every day!) and I have seen a nutritionist who helps me a lot, because I am fructose intolerant. Are you intolerant?
    I also feel not hungry, but I forced my self to eat big, hugge quantities of food. And when you get the " movement" ( have the habit to eat a lot) it is easier.

    Have a good day

    Clodomir
     
  3. Waverunner

    Waverunner Senior Member

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    There are several reasons why we get low appetite of course. In case of ME/CFS however I think it has to do with a dysfunctional/damaged GI tract and viral infection. Do you remember the times when you had the cold or the flu? While during milder versions of the cold I sometimes even had increased appetite, the flu always was connected to weight loss for me. Your body is fighting of the infection and while it does so, it does not want to be bothered by the digestion of food. In case of CFS/ME I think this could be a chronic condition where on the one side the body is overwhelmed with clearing an infection and on the other side, by drawing its resources to the immune system, it cannot provide proper function of the digestive tract. The only advice I can give you is to stay away from sugar and at the same time try to eat foods that have high calorie counts and are easily digestible so you make it easier for your body to increase weight.
     
  4. Esther12

    Esther12 Senior Member

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    I find it helpful to eat a lot (genuinely about twice the amount others in my family eat), and despite doing so little I'm still skinny. Doing much less when I got ill didn't seem to lead to any decline in the amount of food I needed (my flatmates (half)joked that I must have a massive parasite living inside of me).

    I think it's important try one's best not to let one's weight get beneath a healthy range with CFS, otherwise it will just be another strain upon your body. Financial and energy limitations can make it difficult to eat enough, but I think that having more money for extra food led to some real improvements in fatigue for me when I got put on a higher rate of disability benefit (Catch22 - I've now improved to the point where I'm off it again).

    If my stomach is feeling unsettled (I often react badly to trying to eat a proper meal in the mourning), then I start off by snacking on nuts, or a little piece of toast, just to start things going. Waiting until I felt ready to eat left me feeling very odd a few times - I need food.

    Good luck with finding what's best for you.
     
  5. Calathea

    Calathea Darkness therapy

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    Is it feasible to change doctor? I don't know your height, but 40kg is low on anyone, and rapid weight loss is cause for concern no matter what you weigh. How tall are you, by the way? If you're experiencing nausea, they may be able to give you anti-nausea medication that works.

    I'm one of the ones who got unwanted weight gain rather than weight loss, but I've had some experience with loss of appetite. Bland foods can work: rice, pasta, toast, potatoes. I generally do well with sweetish foods with a high water content: strawberries, cherries, and then feeding off carrot sticks, sugar snaps/snow peas and cherry tomatoes dipped in houmous. Getting started by nibbling something small, or the smell of cooking food, can help increase hunger - in theory; obviously something's wrong with the hunger mechanism for you, but it's worth trying. Spices and herbs may help, especially things like ginger.

    Paradoxically, it may help to get hold of some dieting software so that you can learn more about nutrition. There are lots of foods out there which are relatively calorie-dense, and you'll only get on with some of them, so it'd be good to use this as a way of keeping a food diary and experimenting with what you can tolerate and how you react to things. Also record your weight, and make sure it's one of the types of software where you could print out a weight graph and/or food diary. The weight graph will be for convincing your doctor that it's a genuine problem, and the food diary will be useful if you get to a dietician, and probably also if you get to a gastro-enterologist.

    As for meal replacement drinks, they're notorious for being vile. However, there are a lot of them out there, so it can be worth doggedly trying a whole lot of different ones to see if any work for you. I'm vegan, so almost all meal replacement drinks and the bulk of protein powders are no use for me. I have soy protein isolate, which tastes horrid, but I can cope with a tablespoon of it hidden into porridge if I add a chopped date to mask the flavour, or put into fake coffee made up with soya milk. There are various means of sneaking the stuff in.

    If you're too tired to get out of bed and to the kitchen, keep non-perishable snacks by the bed so that you can just grab them.
     
  6. flower

    flower

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    thankyou for replying. I have thought about changing Dr`s as my one seems to be a bit negligent here. iam only 5 2 in height. I have been seen by dietician and had work ups from a gastro specialist but he just said i had bad IBS. My cfs started in 2004 with a nasty bout of campylobacter which i had agin in 2007 so Im thinking there must be some connection. At the same time my sleep is all messed up. last night i didnt get to sleep until 5 am so on top of not eating..... my poor hubby doesnt know waht to do.. i take zopiclone which isnt working. amitryptilline doesnt agree with me nor do many other meds. ihave thought about going to ED today but they would probably ask why ihavent seen my Dr which i did on Wednesday but she wasnt bothered! its a nightmare. Any more suggestions would be really appreciated as im going down pretty quickly.
     
  7. flower

    flower

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    But how do I get my dr to look further int o this when she keeps telling me all the bloodwork is fine. i agrre that ive probably got an infection somewhere but the bloodwork doesnt correlate. Im not sleeping either. Maybe 2 hours a night so im pretty weak. its anightmare situation with the medics here.
     
  8. Calathea

    Calathea Darkness therapy

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    At 5'2, that gives you a BMI of 16.2. This is substantially underweight, and if you weren't eating for psychiatric reasons rather than physical ones, it would probably be enough for a diagnosis of anorexia. I realise that this is physical in origin, but even so it may be useful to speak to some eating disorder organisations. They will be familiar with the general scenario (I spoke to one about a relative who was severely underweight due to alcoholism, and they were useful) and may be able to advise you on how to get proper medical attention.

    As for not sleeping, that could be from hypoglycaemia. But it could also be from whatever is causing the lack of appetite and other problems.

    Whatever happens, try speaking to the eating disorders people first to see if they can give you some tips, then take your husband with you and make sure you get some medical attention. Get him to back you up, insist that you're losing weight at the speed you say, speak up for you if the doctor isn't being helpful enough, and generally be supportive. Make sure they weigh you while you're there. Your doctor is neglecting you shamefully, and since she sounds like she's been given more than enough information and still won't take action, I think it's time to try another doctor. I'm wondering whether it may be worth checking in to a hospital, considering how ill you are and how fast you say this is happening.
     
  9. flower

    flower

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    my husband and iare going to look into seeing another dr as soon as. As i agree iam being very neglected. Im 50 years old so i shouldnt be treated like this.well anyone shoudn`t. Without a proper referral from a DR ED would more than likely do nothing as 6 years ago before i was properly diagnosed with cfs I went to ED and was put on a drip and sent home and told to do breathing exercises! I will look at some eating disorder places in Auckland to see if I can contact someone to help too. your suggestions were really appreciated. I have never had a weight problem before I had cfs, always maintained around 45/6 kgs so to lose it really shows. might not seem abig loss to some.
     
  10. Calathea

    Calathea Darkness therapy

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    I'm 4'11, so I do realise that this is a lot of weight to lose. That said, are you aware that your ordinary weight is technically underweight too? Maybe you just have a slim build. Anyway, how fast have you lost this weight?

    As for the hospital, I don't know how they would treat rapid weight loss, but it's not the same as going in because of ME. While some people do tend to be underweight with ME, there are also some very serious causes of sudden weight loss, and it's important that you be properly assessed for them. I don't think blood tests would cover them all.
     
  11. flower

    flower

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    yes i am of slim build and have been of the same weight until my cfs deteriorated more last year. so i suppose the weight has gradually fallen off to this point because of my funny tummy and lack of appetite.its strange because it seems to come in cycles, lack of appetite for about 6 weeks, then it comes back for a bit then off we go again. so i never have achance to rebuild so to speak. I am a primary teacher but havent worked for 2 years. when i was teaching i was just doing all sorts with n o problems at all. so to be losing weight like this is scary. I have had so many blood tests that show nothing.I think you could be right connecting the insomnia to low blood sugar...

    I have seen a few others mention tummies doing strange things and lack of appetite but its not usually one of the major symptoms is it? I wonder if its viral too.
     
  12. taniaaust1

    taniaaust1

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    Lack of appetite I do think is a common symptom in ME/CFS .. so is the opposite of this eg feeling constantly hungery. Its like our hunger regulatory system is screwed up so can be doing all kind of different things. Your weight loss is a real cause of concern.

    Take care that doctors dont end up thinking you have annorexia nervosa. I did develop actual eatting disorder at one point.. with the stress of dealing with ME and the ups and downs of it.. I developed a need to feel some control in my life so that ended up leading me to feel control by controlling my food so hence then lead to eatting disorder.

    I found with that, doctors were as bad as they are with those who have CFS and just didnt want to know (Im in Australia). I developed quite severe eatting disorder but on hearing about it... I was offered no help, it just made them like be trying to get me out of their appointments even faster (even when i was consciously avoiding eatting and trying to loose more weight and had lost a lot of weight due to it).

    Change doctors and keep changing them till you find out who is listening to you about your issue of weight loss. Having no appetite leads to eatting less.. but that is a thing which cycles as with not eatting enough that in turn can lead to no appetite so this cycle needs to be broken. Not eatting enough can also lead to insomina or worsen the insomina you have (Anorexics have insomina).

    If you have no appetite.. you also need to "train" yourself to eat regularly anyway. I know that can be hard to do when you just dont feel like eatting but something you need to make yourself do.

    For the insomina .. if you havent tried it already, I suggest to go to your chemist (you dont need a prescription for it) and try the anti inflammatory sleep aid Doxylamine succinate, you may need to be on a combination of things which work well for you.

    Also are you aware that you do have a world famous ME/CFS expert in NZ.. it may be worth while seeing her for advice. You may be able to get in to see her easily (she was going to squeeze me in when I was in NZ, she seemed very nice), thou I do realise it may involve a flight if you are on other side of NZ.
    ....

    agree that there are some bad docs in NZ. I saw a male doctor while over there and he obviously didnt believe in ME/CFS at all, (thou I'd been previously diagnosed by three specialists) and he tried giving me bipolar drugs thou hide from me what he thought (just told my boyfriend at the time he thought I was psychotic and that the symptoms were all in my head).
    A year later that doctor was in the news.. he'd done something and lost his licence to practice. Im so glad.
     
  13. flower

    flower

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    My dr just keeps telling me to eat and get the fluids down even when i tell her im trying my best and its not as simple as that. if i could eat i would. And when i the horrible feeling of not wanting to eat goes aaway ido eat. but imthen constantly trying to get my weight up to par again so uts a vicious circle. and yes im sure the insomnia is linked to the eating. im actually at the end of my tether. im from the Uk and keep wondering if I should go back and try to get somehelp back home. ill see if i can find the tablets you mentioned. i have seen Ros many times but she is always booked up and also it costs alot of money to keep seeing her. you would think my own Dr would see whats happening here. I do make sure i eat at the normal times for me evn if i can just get down a cracker or piece of cheese.

    im glad i found this site. i didnt realisei had the same issues as others ...
     
  14. taniaaust1

    taniaaust1

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    Im curious what symptoms you get when you do eat (sorry if you've said and Ive missed seeing it).. stomach pain? nausea?
     
  15. flower

    flower

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    I get awful bouts of dry retching mainly in the morning. when that starts i know im in trouble. then i go off my food. this happens in cycles so its very strange. then i start to feel more ill thanusual, off my food and bloating, runny poo etc for days. gastro just say its ibs but im not convinced especially as ive lost weight. been tested for coeliac and thats ok.
     
  16. user9876

    user9876 Senior Member

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    My child has had problems with weight loss having completely lost her appitite also feeling sick much of the time. I've noticed that her eating and energy levels are quite highly corrolated - that is she eats well on good days but she really struggles to eat on bad days. She eats better in the evening. I don't think it is that unusual. One of the things we have done is to make sure she is drinking milk or higher calorie drinks rather than squash. I've tried fortifying food eg adding lots of butter, milk powder, cream but I'm not sure how much this helps as too much changes the taste and makes it quite rich.

    We initially couldn't get a dr to take the weight loss seriously but then had problems with Drs diagnosing anorexia nervosa with little reason. My experiance of eating disorder people is not good. I would keep out of there way. When we finally got to see a diatition she gave some useful advice.

    On the IBS there is talk of this being one of the diseases linked to FM/ME with one paper I was reading (on FM) suggesting IBS was often co existance. The NIH's latest funding call also suggests they feel they are in some way linked/related.
     
  17. Calathea

    Calathea Darkness therapy

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    How long are the cycles, and have you been able to spot any pattern with them? Do they relate to your menstrual cycle, or anything in particular you've been eating?
     
  18. flower

    flower

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    cycles last 2-3 weeks. ive switched to a mainly gluten free diet. im going through menopause so now wondering if there is a connection but its hard to tell
     
  19. flower

    flower

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    was wondering also if it could be due to low seratonin levels because of oestrogen levels etc. any thought anyone? if so does anyone reccomend any thing natural to take for that?
     
  20. Calathea

    Calathea Darkness therapy

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    I have no idea whether serotonin could be involved, but I suppose it's worth a shot. Bright light is the obvious natural way to top up serotonin levels. Either use a therapeutic lightbox (hard to get hold of in New Zealand, I think), the sort used for SAD, or go outside into the sun for at least an hour every day, preferably in the morning. Alternatively, you could try buying a cool white LED bulb, the strongest you can find (look for the number of lumens), and use that as a cheapie alternative to a lightbox, positioning it fairly close to your head, above eye level and to one side. If you get headachy or wired, move the light source further away and/or use it for a shorter time. The morning is the best time for this, considering that your sleep is bad, though don't wake yourself up just to use it. You can also look up darkness therapy, which is sometimes involved in hormonal problems (e.g. shift workers have a much higher incidence of breast cancer, there's a link between melatonin levels and oestrogen).

    I've never heard of this sort of thing causing GI problems like this, however.
     

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