Underweight CFS sufferer not eating enough

[fireside101]

Hi, my brother has had Chronic Fatigue Syndrome since he was 14, he is now 32. He has always been underweight and has always had problems with not eating enough food. The past 15 months have been hard on us since our father died and we began taking caring of our mother, I do most of the housework and caring duties for my mother. He was prescribed protein/vitamin/mineral shakes from the dietician which he takes on a regular basis but i think most days he doesn't eat enough food. He would go to bed around midnight and then get up at around 4 or 5 in the afternoon and usually have two sausages and a piece of white toast with a cup of tea. He would then have a small dinner (sometimes they are larger) followed by a protein shake and maybe some cheese and crackers afterwards. He also gets bad migraines which he gets three days in a row usually. I have been trying to convince him to see a counselor since i think his condition is causing him to have a low mood and low self esteem and its becoming increasingly difficult to talk to him about his diet. He has asked our local doctor for a referral to a psychologist which he says he will make an appointment with. What suggestions do you have to help with his diet and routine?

 

[hellytheelephant]

Firstly, @fireside101 I am sorry to hear of your bereavement- you are both in the first 18 months of grieving so that could be a part of the loss of routine and appetite.

I also have a brother, so I know they don't take well to being organized or told to go to a counsellor

It sounds like you have a lot on already, but would it be possible for you to eat with your brother once a week and make a meal to share? If you are able you could make a wholesome soup with pulses and grains and eat it with him( even if you are by the bed, if he's very poorly). Blended soup is fairly low maintenance to make but really wholesome and possible to eat, even if not that peckish. Finger foods are also good eg, chopped veg with humous, or chunks of fruit with fromage frais.
It would be hard for him to refuse if you have made something.specially and it sounds as if he needs some company and to experience routine.even if only once a week.

Start small and build up. I know what I speak of - I had an eating disorder many years ago.

 

[ScottTriGuy]

My two cents...a counselor specializing in motivational interviewing, and medical marijuana.

 

[Esther12]

To a large extent, I would let your brother guide the way as he is likely to know his body best. He might be responding perfectly to the way he is?

There can be a massive range of responses to food/diet with CFS patients: some have trouble putting weight on because they can't exercise to help lose it, some a too ill to prepare/get enough food, some have fairly constant nausea. Some find the certain food make them feel really ill, while others are fine. Also, it can be annoying having other people assuming that they know how to live your life better than you do - if you start any discussion with your brother with an awareness that there's a good chance that he knows better than you, it might make it easier to discuss any concerns you have without it getting fraught. Although it could be that it's already become a touchy subject.

Some people are just naturally skinny, and if his doctor doesn't think that he's under-weight to the point of it being genuinely unhealthy, maybe that's nothing to worry about? Good luck without whatever you do.

 

[panckage]

medical marijuana.

Yep this also helps me with brain fog when used in small doses. You will happy to know that there is also research supporting its effect in reducing migraines:
https://www.leafly.com/news/health/new-study-confirms-that-cannabis-can-help-migraine-sufferers

 

[Timaca]

This info might be helpful if diet is contributing to his migraines: http://www.pcrm.org/health/health-topics/a-natural-approach-to-migraines There is other info online but I thought of it because you mentioned he ate cheese and you mentioned migraines and the two are connected in some people.

You are kind to want to help your brother. I do like hellytheelephant's suggestions about eating with your brother or making him some soup or other food to have on hand. Even individual portions that are frozen would be a good idea.

I am underweight too and I am eating 4 times a day to try to gain weight. On the days when I feel well (today is one of those days) it is easy for me to fix and eat food. On the days that aren't going so well, it can be very hard to fix myself food...... Having food on hand that someone else made would be helpful during those times.

Take care of yourself too..... wishing you both the best,

 

[Skippa]

The amount you said he eats doesn't seem too bad to me.

Especially for someone with reduced activity.

 

[fireside101]

thank you so much for your responses. Its very difficult to try and get someone to help themselves and try to be carer/best friend and the same time. He has been using cannabis for a years and its helped with migraines and the nausea associated with them. Medical cannabis is not legal yet in Ireland but a bill is being voted on in october in parliament. Lately my brother has been eating cheese and crackers for breakfast and waiting a few hours eating anything else. He would also drink 5 or 6 cups of tea with 4 teaspoons of sugar throughout the whole day. He tends of eat most of his protein and fruit and veg later in the day and is convinced that it doesn't matter what time of the day protein is eaten. His fruit and veg choices are usually smoothie or raw peepers. He thinks that eating a good source of protein in the morning will not give him more energy throughout the day or improve his mood or self esteem because apparently protein does not work that way. At one point last year he was eating white toast for breakfast and frozen cheese pizza for dinner and almost no fruit or veg and even told me that frozen pizza was a good protein source

 

[Esther12]

because apparently protein does not work that way.

I think that things like that are just hugely variable person to person. I find that I can't really eat much of substance first thing, but also that not eating protein til late in the day does mean I often feel worse, but it's not a big thing. Someone else I know finds eating protein for breakfast helps them feel a lot better. Then another finds is makes no difference at all.

To a large extent you need to let your brother work out what's best for him. It could be your brother has some misguided views about diet, but also, that even if he was eating the perfect diet for him it would make no real difference to his health. Presumably if he found that eating in a certain way led to him feeling a lot better, he'd still be doing it.

People can often really want to 'fix' health problems with advice, even when there's no evidence that their advice will lead to improvements in the sick persons health. It's easy to make recommendations for changing another persons life, but following the un-evidenced recommendations of others made my life a lot worse back when I would still do it. I'd be cautious with anything you suggest, and try to be aware that you're brother is likely to have a better understanding of his health, and how his body responds to food, than you.

 

[fireside101]

If i had not prompted him to eat better last year he may still be eating very little fruit or veg and frozen pizzas. He has been seeing a psychotherapist on monthly basis for the past 5 months which is fantastic because This time last year I thought it would never happen and we're lucky because the psychotherapist also had CFS. He tells me that he forgets to eat and that he needs reminding but when i do remind him he often gets annoyed. We are not the type to get into shouting matches but it has happened on occasion. I really do notice a difference in him on days when he eats better earlier on than other days and I can only compare it to my own experiences of days better on certain days than others. I know everyones body is different but I really do think that in my brothers case he could do better with a balanced breakfast. I understand I cant make him eat in ways i think would be better and that he knows his body better than I do, I just want to help him the best way I can.

 

[Esther12]

Good to try to be supportive, even if it sometimes does go a bit wrong. I'm sure it's a difficult situation for both of you. Are there any easy yet substantial snacks that can be kept around, so he can try out eating earlier with little effort, and see if it helps him? I can't really give any advice on this as it is all so variable. Funny that you seem to think it does make a real difference for him, yet he doesn't. If it's not a big trouble for him, it would be nice to test it out more carefully? Could it be that on days when he feels better, he also feels like he wants to eat earlier?

We need randomization to show if it's causation or just an association! He could flip a coin at the start of the day to see if he eats earlier or not, and then be guided by the coin for a couple of weeks while assessing responses.

I've gone from trying to avoid troubling your brother and leaving him to his own devices to recommending that you turn his life into a science experiment. If I were him, I would not welcome my recommendation.