Over the last 18 months I have lost around 6 kg because at times I totally lose my appetite when my ME is very bad. It may not sound a lot but I was never big to start with only 45 kg. Now I weigh only 39 kg. I am very very worried as I am now battling accusations from the specialists that I have an eating disorder. I have told them til im blue in the face that I have not got an eating disorder and that my weight loss and lack of appetite is because I feel so poorly all the time cos of the ME and IBS I have.What can I do. Im trying my best to eat high calorie food etc but on very bad days I just cant face food. My husband has even told them Im not anorexic. I have found it to be very upsetting and don`t know how to deal with it now. These kind of opinions do not help ME and I did try to point out that they wouldn't suggest to someone who had a chronic illness that wasn`t ME that they had an eating disorder. What can I do?
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Weight loss and loss of appetite
- Thread starter flower
- Start date
Hi flower
I have had similar issues with weight as well. Although I think the lowest I got would have been about 50kg. I struggle to go over 60kg. As soon as I get to 60kg my ME flares very nastily and the nausea becomes severe and I can not eat.
And I end up losing the weight I have gained.
I have found when I am like this, I need to supplement with a meal replacement drink. I don't know where you live but I buy mine from a local supermarket, they have a very good quality one recommended by doctors etc. I find this easy to swallow and digest when I am feeling severely nauseous and weak. I try to nibble on food and sip on water or some other nutritious liquid every 10-15 minutes when I am like this as it is hard to eat a lot.
Not sure what else to say, as I haven't found the solution for putting on weight and keeping either. xxxx
I have had similar issues with weight as well. Although I think the lowest I got would have been about 50kg. I struggle to go over 60kg. As soon as I get to 60kg my ME flares very nastily and the nausea becomes severe and I can not eat.
And I end up losing the weight I have gained.
I have found when I am like this, I need to supplement with a meal replacement drink. I don't know where you live but I buy mine from a local supermarket, they have a very good quality one recommended by doctors etc. I find this easy to swallow and digest when I am feeling severely nauseous and weak. I try to nibble on food and sip on water or some other nutritious liquid every 10-15 minutes when I am like this as it is hard to eat a lot.
Not sure what else to say, as I haven't found the solution for putting on weight and keeping either. xxxx
I've had issues with this too, and as rosie says, the only thing to do is use high caloire, nutrient rich, meal replacement drink things. (I personally quite like "chocolate" Complan. It tastes like melted commercial british Neopolitan "icecream" brown parts.)
Sometimes the effort of getting food to your mouth and chewing is so great that you just give up, or sometimes it's just the waves of nausea that come when you do find a lump of something in your mouth.
One of your big problems with the medics is that real anorexics are always in denial anyway.
Sometimes the effort of getting food to your mouth and chewing is so great that you just give up, or sometimes it's just the waves of nausea that come when you do find a lump of something in your mouth.
One of your big problems with the medics is that real anorexics are always in denial anyway.
When I'm feeling too nauseated to each much, I usually go with chocolate, or any other dense foods. For me much of the problem seems to come from the volume of food in my stomach ... so eating a bunch of salad puts me on the verge of vomiting, but I can handle far more calories worth of food from a denser source.
Hi Flower,
Try little snacks like salty crisps, peach in syrup in can (there are little ones), a croque-monsieur (slice of bread, slice of cheese, slice of turkey and an other slice of bread, put that in a pan and when the bread is crispy and the cheese "melting", it is ready to eat), I eat also avocado with some colza oil and salt, sometime a banana, a few grapes, apricots, etc.... I eat a lot between the meals, to maintain my weight.
Good luck
Clodomir
Try little snacks like salty crisps, peach in syrup in can (there are little ones), a croque-monsieur (slice of bread, slice of cheese, slice of turkey and an other slice of bread, put that in a pan and when the bread is crispy and the cheese "melting", it is ready to eat), I eat also avocado with some colza oil and salt, sometime a banana, a few grapes, apricots, etc.... I eat a lot between the meals, to maintain my weight.
Good luck
Clodomir
In the beginning of my illness, I actually put on weight, and it was everything I could do to get it off. Then I lost a bunch of weight. It was so startling, that I tried everything to put it back on and to no avail. (for example, I could eat a whole cheesecake over the course of a couple of days, and not gain an ounce). I eat like a horse at times, and others, I don't. I am stuck at where I am at now. I don't have big meals very often. I don't like an over full stomach especially when its hot out.
My body has been changing lately and my muscle I used to have is starting to define again. Been a long time coming, I have changed a few things, but not my eating habits. I am really starting to wonder if its the arginine that is doing this.
My body has been changing lately and my muscle I used to have is starting to define again. Been a long time coming, I have changed a few things, but not my eating habits. I am really starting to wonder if its the arginine that is doing this.
Does it taste like melted pink bits of british commercial Neopolitan "icecream" rosie?
There are 250 calories in each sachet, it's made up to 200 mls, not a huge amount, so if you managed 4 throughout a day, that's a whole 1000 calories - and it's proper nutritious stuff.
Although not as good as proper food, it's about the next best thing in these circumstances.
I think there's another one called Fortran, given out on prescription for weight gain and nutrition.
There are 250 calories in each sachet, it's made up to 200 mls, not a huge amount, so if you managed 4 throughout a day, that's a whole 1000 calories - and it's proper nutritious stuff.
Although not as good as proper food, it's about the next best thing in these circumstances.
I think there's another one called Fortran, given out on prescription for weight gain and nutrition.
Your right peggy-sue, the complan does taste like the strawberry and Chocolate flavours in Neoplitan icecream ha ha.
Yes and it is the next best thing to food. When I start to feel better again. I try make up for it by eating lots of nutritious food as often as I can throughout the day. Like you I don't eat until I am uncomfortable (I don't like uncomfortably full either). I just eat until I feel comfortable and I try to eat small amounts all throughout the day. xx
ha ha.Yes and it is the next best thing to food. When I start to feel better again. I try make up for it by eating lots of nutritious food as often as I can throughout the day. Like you I don't eat until I am uncomfortable (I don't like uncomfortably full either). I just eat until I feel comfortable and I try to eat small amounts all throughout the day. xx
thanks everyone for all your ideas. I have been give fortisip which is a bit like complan. for some reason the nausea is worse until late afternoon. as you say peggy-sue because I deny the anorexia they think I am one!They also say I have autonomic instability. anyone heard of that? My BP goes way up in the morning then gradually comes down ove rthe course of the day. I have been given metoprolol 12 mg to try and stabilise it.It does seem that my tummy can`t handle huge volumes of liquid either. I am In New Zealand and have found it hard to get beyond the scepticism that exists here about ME/CFS. I am from the UK and it was actually just as bad there. Does anyone know who I could contact anywhere in the world who would maybe do a Skype appt.Any help would be appreciated as Im getting desperate about my health and getting no help. Thanks
caledonia
Senior Member
- Messages
- 4,610
So in US lbs that would be 100lbs down to 86lbs. My mom had ME/CFS along with this same problem and was well under 100lbs for 20 years. This is not a good situation. But don't panic. I didn't know how to help my mom then, but this is what I would suggest now.
You clearly have gut problems and need to address this. My suggestion would be to get the Metametrix GI Effects stool test and see what's going on in your gut. The test results give you ideas on how to kill off the various gut infections you might have.
You may also need to fix leaky gut and so on. I'm not real clear on how to do this. There seem to be various methods, and it needs to be individualized. I'm feeling my way through this process myself.
If you want to Skype or telephone with somebody, I suggest Dr. Jess Armine from mthfrsupport.com (he's on their list of recommended docs). http://www.mthfrsupport.com/pennsylvania/ He will likely have you take the Metametrix test as well. The link for the Metametrix test is in my signature.
Sean Bean (on the same page) might be ok too.
=-=-==-
ps. one other thing you can try until you get your gut fixed, is marijuana or a prescription appetite stimulant, along with the snacks people are suggesting.
You clearly have gut problems and need to address this. My suggestion would be to get the Metametrix GI Effects stool test and see what's going on in your gut. The test results give you ideas on how to kill off the various gut infections you might have.
You may also need to fix leaky gut and so on. I'm not real clear on how to do this. There seem to be various methods, and it needs to be individualized. I'm feeling my way through this process myself.
If you want to Skype or telephone with somebody, I suggest Dr. Jess Armine from mthfrsupport.com (he's on their list of recommended docs). http://www.mthfrsupport.com/pennsylvania/ He will likely have you take the Metametrix test as well. The link for the Metametrix test is in my signature.
Sean Bean (on the same page) might be ok too.
=-=-==-
ps. one other thing you can try until you get your gut fixed, is marijuana or a prescription appetite stimulant, along with the snacks people are suggesting.
thanks for your suggestions. I also have really bad IBS which isn't helping. its def not a good situation.Do you think the drs you suggested would prescribe something like that via Skype though?yes I thin marijuana may be a try too. Ill let you know... thanks agin as I really really am in a desperate situation.
caledonia
Senior Member
- Messages
- 4,610
I don't think Dr. Armine or Sean Bean can prescribe meds. Dr. Armine is a nurse/chiropractor; Sean is a nutritionist.
So your regular doc is going to have to help there.
One other thing I just thought of, which is ginger tea. This is helpful if you have a low level nausea which kills your appetite.
So what you do is get a ginger root from the grocery store. Take a piece about the size of your thumb and cut it up into several slices. Find a jar or container that can handle boiling water being poured into it. Put the ginger pieces in the jar. Boil up some water and pour it into the jar. Let the ginger steep for several minutes.
You can drink it plain or add lemon juice and/or your favorite sweetener. If it's too spicy, simply add more water to dilute it. Sip on it prior to or during eating.
yes im onto the ginger tea. I also got some ginger capsules. Ive been in touch with Dr jess Armine and he is going to do a Skype consultation with me this week. i hope my regular dr wil be supportive if he does suggest any new meds. I wonder why its always worse am I and evening. This seems to be quite common with cfs people. Middle afternoon it settles a bit. it also seems to be worse with volume. Stomach seems to have literally shrunk!
Have they given you an actual eating disorder assessment, or are they just assuming? There are some actual assessments and some of them seem to be fairly reasonable. You can try one out yourself before asking for a formal assessment to be made (presuming that a negative result will shut them up about this and get them interested in the actual cause):
Eating Attitudes Test http://www.eat-26.com/ (online interactive, computer scored)
Eating Disorder Examination https://www.rcpsych.ac.uk/pdf/EDE_16.0.pdf (questions shown with explanation of proper scoring)
Eating Disorders Inventory sample questions http://www.eatingdisordersblogs.com/treatment_notes/files/EDI.jpg
more: http://www.eatingforlife.org/content/assessment-eating-disorders
http://www.neurofarmacologia.net/wp-content/uploads/presentazione-Linda-Kiev-20101.pdf (slide 22)
Tella
Senior Member
- Messages
- 397
Hey it’s been a few years. I’m suffering from nausea and no appetite. Did anything work for u and how long did it all last? Thanks.