AIBU to ask?

[Butterscotch1989]

About diets for CFS/ME, please?
Sorry, I know not strictly AIBU, but I would really appreciate some advice for my husband who suffers from CFS for a good few years now.

He wants to know of a diet to try to help to reduce the tiredness he feels each day. If you suffer from CFS which foods do you avoid, or must have to help you get through the day?

Thank you for your help.

No diet can help with CFS. There is absolutely no evidence. Anecdotes are not the same as evidence. Anyone trying to tell you a diet helps is a charlatan

Thank you for your reply. I was not exactly looking for a cure, as such, more of a "foods which made me feel slightly better/worse?" suggestion? Or any other advice which might help my husband feel better in his day to day life.

Apart from eating a generally healthy diet there was nothing specific that helped me. A friend tried eating small meals more regularly and that helped her a little.

What does he eat now?

Mostly carbs and dairy, meat and a little veg. Some junk food, sugars/fats and coffee. He knows this is not excellent and is trying to change.

That doesn't sound really awful tbh. I don't think changing his diet will make a huge amount of difference.

It's really common to get fixated on finding a miracle cure when accepting life has changed for now and making the most of the energy you've got without feeling bad about the stuff you can't do is probably the best thing you can do.

This fact sheet by the BDA might be helpful? www.bda.uk.com/foodfacts/cfs-meanddiet.pdf

Thank you, that was just the thing i was looking for!

That leaflet just says to eat a balanced diet.

I cut out sugar and caffeine as the spikes I got from them made me crash hard, I felt more on a level then up and down constantly with the exhaustion. (It didnt cure me or anything but I felt more in control which certainly helped).

White rice etc can also do this, google things that can make your blood sugar spike and try changing those, i.e white bread to wholemeal / white rice to brown etc.

I don't really agree with gluten free but it may help, it may not, don't cut it out for no reason though (does he have bowel issues?).

Put more anti inflammitories into the diet, like turmeric, just put it in food randomly, it doesn't taste of much but it's good! Anything anti inflammitory will be good for him.

If he doesn't yet, get him to use epsom salts, they can help a lot with muscle aches.

I don't know what your husbands dietry issues are if any, but a lot of people with m.e have really bad reactions to some foods, bowel or exhaustion or otherwise, nothing works for everyone but hopefully with some trial and error something will help a bit.

Also, it really made my night that you're making such an effort, too many of us are "abandoned" by friends and family so it's very lovely to see this post.

Blahblahblahetc

Thank you for your post! This is excellent advice. If you don't mind me asking, do you suffer from CFS yourself, or a family member? And how long have you/they suffered with it?
I just want to help my husband, especially when I go food shopping so I know what kind of things to buy to help, and to not but the things that would make things worse.

He also notices after a large meal he feels a crash pretty quick after, and feels really tired. We will be trying smaller meals more often.

butterscotch don't forget he's an adult and still entitled to decide what he wants to eat. While it's great you want to be helpful, one of the things I hated most about my CFS was people treating me like is lost fifty points off my IQ and wasn't capable of thinking for myself any more.

There is no definite diet that will make things worse. If he wants to eat crisps (or whatever), that's up to him.

Agree there's no big solution really. I have been told by doctors to give up gluten, dairy, go vegan etc.

I do find some particular things make me feel worse in general though - I think I am particularly outrageously sensitive to caffeine for example. DD is the same, even her sleep specialist was astounded.

I cut back on fizzy drinks at new year, anything like coke I have only at meals out now and never at home or from the newsagent etc. Lost lots of weight and most interestingly now I really REALLY notice when I have it because the day after I feel absolutely hideous.

Eating more veg won't hurt anyway. But TBH I think when you are that ill and exhausted there has to be an element of convenience, of whatever you can actually manage to prepare and eat being better than nothing.

I find bacon sends me to sleep so only have it if I'm not doing anything later. Big meals too. In fact anything meat heavy - basically stuff that tasked a fair bit of digestion. Christmas dinner always results in me going off for as nap!

That's just me though.

No problem I'm always happy to give my 2 cents

I was diagnosed when I was 21, so it's been 10 years now! I was bedridden for 4 of those and the last 4 I've been recovering but I'm aware it's a very flare up / remission sort of thing so I'm not counting my chickens!

On the food thing though, it is very much a trial and error, I had a friend that could only eat chicken and rice, but he had a whole host of dietary issues due to m.e unfortunately.

Also get your gp to vitamin test him, mine wouldn't even though I begged her for years about it and after a change of doctor I was severely deficient in several. It makes a huge difference.

How is your husband now?

I don't know if he knows about this chart (sorry I can't find a link) where it's basically 100% is full functioning and 0% is bedridden being tube fed etc. It helped me to keep an eye on when my peaks and troughs were which in turn helped me to manage the illness better. I will try to find a copy.

Also look into pacing if he hasn't, it saved my life. (Sorry if I sound bossy, I'm just reeling off things as I remember them)

He is doing ok mostly, as is able to go to work, etc, but quite tired after he comes home and after tea, is ready for bed. But it's at the weekends he almost prefers to do nothing, says he feels very tired. Gets up and after a few hours feels like he needs his bed again. But if he does go to sleep again, it knocks him all out of sync for the rest of the day. Not sure why it's the weekend that's always the worst, maybe when it's we don't have a routine, work to get up for etc?
We are expecting a baby later this year, so he is trying to feel his best for that, hence the food trial!

It's probably because he's wiped out after using his energy at work and can't sustain it over the weekend. That's exactly how it is for me.

I'm recovered enough to work now but it's taken a long time. Would he consider dropping a day? Ideally Wednesday to give him chance to catch up?

I was similar with work, I'd push through the work days and crash on days off

We are expecting a baby later this year, so he is trying to feel his best for that, hence the food trial!

Is he driving this or are you? I can't figure it from your posts.

My friend was advised to give up potatoes and tomatoes.
Their was probably more to it but those are the ones i remember the most.
And be aware that a baby will exhaust him too, even if physically he cant help much it will still wear him out.

My friend was advised to give up potatoes and tomatoes.

By whom? There's a lot of unscientific nonsense that gets given to people with ME/CFS as helpful advice.

There's no evidence giving up these foods is helpful. Potatoes and tomatoes are both foods to eat more of according to the NHS. This leaflet is aimed at children but the principles are the same for adults...

www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/documents/CFSDiet.pdf

Diagnosed with CFS about 18 months ago and told that the NHS couldn't help

I'm like blahblahblah - sugar gives me massive crashes. I still crave it daily but I have to accept that if I eat it, I'll be wiped out afterwards.

Giving up alcohol, cutting down caffeine, drinking more water all helped a lot.

Good luck to you both.

There's an autoimmune board on here OP which may have some specific advice on CFS. I have limited knowledge but would lean towards high protein high fat low ish carb and as Pps have said anything anti inflammatory. Gelatin, and bone broth, are meant to be good too.

I understand the potatoes and tomatoes mentioned up thread affect some people as they are part of the nightshade group, along with peppers and I think aubergine.

Resources to Google if you have the time - Autoimmune diet (along paleo lines but you reintroduce foods and see how they affect you). Good luck OP.

I am just trying to improve my diet overall. Coming at it from a positive angle, as in choosing stuff that's good for me rather than cutting 'bad' stuff out. I figure it can't hurt to make sure I get more fibre, vitamins etc. But also allowing for the fact that often I can't prepare food (even on my good days I can't do anything like batch cooking) so I am not going to beat myself up over using ready made stuff

Not specifically to do with CFS but fatty meals are likely to make any one tired afterwards. Also reduce sugary foods and refined carbohydrates as they will lead to more pronounced peaks and troughs in insulin which affects mood and perceived energy levels.