After years of struggling, I was finally diagnosed as having CFS earlier this year. Despite exhaustion, I was for years largely able to keep my weight in check by eating healthily and walking or doing yoga when I had good days. But my symptoms have got a whole lot worse the last 18 months and I currently have days when I struggle to get out of bed. I’m doing my best to keep eating nutritiously, but right now any form of exercise is out of the question. As a result, I’m losing muscle and gaining fat. It’s hard enough staying upbeat with this condition, but it’s incredibly depressing to watch myself get fat and find my clothes don’t fit. Does anyone else experience this? How do you cope with it?
Weight gain can certainly be an issue — I went through it myself. Not because I didn’t know what to eat, but because I got discouraged and lazy. I played professional hockey for 10 years, so I knew better. I can tell you the easiest, healthiest and fastest and way to lose weight, is to cut out all things “white” such as sugar, flour, potatoes, rice, et. al. In other words, cut your carbohydrate to between 75-100 grams a day. I do that six days a week and then eat as many carbs as I want on the seventh day. There are a number of low carb, low fat diets out there that will help you. It’s easy and it works!
hi,
Exactly the same here. i used to love walking miles, running, swimming then my body started slowing down and all of a sudden weight started piling on. Something i never had an issue with, it really got me down as it was just another change i had to deal with.
i have joined slimming world earlier this year.If i lose any weight its a bonus but i find it helps just learning new ways of eating, also its gets me out the house just for a few hours one day a week to interact with other humans!!!
i would recommend finding a healthy eating plan that works best for you, the hardest part is saying goodbye to the exercise person you were and finding new tips on keeping yourself healthy.
Good Luck
Hello there,
It is a constant struggle isn’t it, M.E. (refuse to use the Americanism cfs - it’s unhelpful and hinders educating the populous who think ‘WE’ are just ‘tired’).
You may or may not have other health issues so not to dismiss anything else that could contribute to any weight gain - and age, too, can prove a challenge - as if we haven’t enough of that going on!
I find that being a Piscetarian helps me enormously: like others have mentioned, processed and manufactured foods - the ‘white’ stuffs, are really unhelpful for ‘energy’ and health as they are laden with rubbish (non-nutritional sugars, fats, salts). Ditch them ALL.
If you eat E.G., 5:2, that is 5 days of healthy food against 2 days of what you desire, it doesn’t feel initially or, as a life style choice feel like a punishment or that you are denying yourself anything at all.
I don’t believe in ‘dieting’ in the marketing sense.
This is all about changing behaviours: our routines have usually taken us a while to get into - sometimes a lifetime. So it takes time to change but, it can be done. Learnt behaviours take effort to alter but it is worth it. YOU, are worth it!
After my milky coffees (no dairy now: oat milk, almond milk and soya - all sweetened with apple juice or not), I first eat around 2pm - a light meal/snack: perhaps oatcakes with peanut butter and banana, or a good nutty granola (Aldi!) with milk and alpro yoghurt (more protein), porridge and walnuts - yummy! whatever I feel like. Not an eggy person but poached eggs are fantasic protein too ;))
Around 7pm I’ll always have a HUGE plate of spicey, sauted veggies (low cals, low carb) with alternate proteins through the week: smoked salmon, chickpeas (curried!) lentils in a sauce, or just my homemade, spicey olive oil or coconut/rapeseed oil (all good, healthy fats)
At weekend, it’s sometimes a bottle of red wine! Wholewheat spaghetti, rice, quinoa etc, anything I fancy really. I love a bit of date and walnut cake, or toasted scones with clotted cream - yummy.
What I mean to say, is that, food isn’t just fuel, it is cosy hugs, love on a plate!
We deserve the hugs - and the self love too, and we’ve got to live how best we can.
Good Luck! And do hope this has been of some help or, at least given you an idea or how to move fwd .
Jo
I can relate. Last year I could go for walks at least, but not now. And I’m in my 70’s so muscle atrophy is a big concern. What has helped me not gain fat is to eat a strictly ketogenic diet. In fact, it helped me lose fat in spite of my condition. I fuse keto with low lectin foods to reduce inflammation and pain. Added bonus, it helps improve brain function and mood. Also I add collagen powder and creatine to my morning coffee for muscle support. We’re all different of course, but it may be worth a try for a couple of weeks and see if you notice an improvement.
I like that thought, Dono8555. Can I ask, do you find your energy affected at all eating low-carb?
Thank you.
I resonate with your point about saying goodbye to the exercise person. So frustrating.
Hadn’t thought about joining a slimming club - great way to get a much needed jolt of social interaction!
Thanks for all that! Lots of helpful thoughts.
Good point about food being more than fuel. We definitely do need all the psychological and other hugs we can get!
It’s definitely all a learning game as I adapt to finding ways that support me best now. As they say, what got you here, won’t get you there.
Take care!
Your energy level should increase, as you’ll have the benefits of lean proteins without all those processed sugars in your system. It’s those processed sugars that are your biggest contributor to weight gain. Unfortunately, the ME will ultimately dictate your energy levels on your bad days. No wonder drug for that yet.
Hi Jo,
As hard as it is to accept where you are now, it may help to know it doesn’t mean this is where you will always be. I , like you , have put weight on more recently and also have been doing less physically. I eat pretty well but don’t sweat it when I get a take away because I aren’t up to cooking. I have 3 young people at home so, meals aren’t just for me.
Do you live alone or with others? I think that also makes a difference to what we eat and when.
I eat as well as I can most of the time: organic, vegetarian, wheat and dairy free, caffeine free and no alcohol right now.
I think there are more than one issue to putting on weight and how we feel about it. A big part of this is health and if the excess weight is just that- a bit of extra padding or, it is unhealthy excess weight. If we didn’t have the condition, we’d not have the excess. My sister had a bit of extra padding and decided to go to Weight Watchers. She now goes to the gym, swims, goes to body combat and pilates. She is a typical healthy weight for an active person. She lost a stone doing all this and re assessing her portion sizes. I know we don’t have the exercise to help but, portion size is one thing that is in our control. Smaller amounts and more regular timed intervals are said to help. I can bear this out to some extent in that I can eat smaller amounts, eat things like energy bars during the day and feel less ill with cfs/me symptoms. To me, that’s more important than fitting into smaller clothes.
Do you know why you have days where you find it difficult to get out of bed? is there a pattern to that?
The one crucial thing I take away from having cfs/me is that we are constantly working towards balance. Balance of food input verses activity. Balance of activity verses rest etc etc
Hope that helps a little,
Beverley
that was the thing that did my head in and still does. I have an eating disorder and have had to deal with that as well. I changed my eating.. got very expensive supplements. spent lots of money. got flabby as as no yoga. hill walking etc. it has been suggested by a alternative practitioner to eat very slow cooked food
always hot. warm foods is best for our poor bodies. the adjustment has been harsh… I’m used to the flab now but when your whole body feels so sore and fatiqued then gain gain is a huge shock. I’m learning to live in management mode. I’ve stopped ALL SUPPLEMENTS ..they didn’t work ( for me) . I had to work out how I could work so now part time(another huge adjustment). be kind to yourself.
Thank you! I’m going to try to eat less and better quality carbs and see how that goes. Take care
Hi Beverley.
I know what you mean about balance. I’ve been debating to what extent it’s important to lose weight vs try to maintain where it is now, but without restricting myself. Yes, I don’t like the extra pounds but I can live with them if I’m more accepting of where I’m at. Your point about not having to see it as an always thing is great in that respect too.
I’m in my fifties and live with someone. When he’s here, he’s wonderful at making us both good food: fish and chicken dishes, lots of fruit and veggies. But he travels away a lot. For most of the time, I try to pay attention to cook for myself. But, like you, I sometimes resort to takeaways or easy food when it just all feels like a struggle.
I think the struggle to get out of bed is often about feeling as mentally low as I do physically. The constant tiredness can just be so frustrating. My doctor has just prescribed me an antidepressant to try to combat the depression/anxiety that for me at least seems to be part and parcel of this whole ME thing.
So, baby steps. Still, I’m quite jealous of your sister. I’d love to have her energy 
But I guess neither you or I currently do. Which takes us back to the same self-acceptance thing!
Take care
Gosh Jane you’ve done amazing dealing with an eating disorder and this. I do wonder if I’ve had some of this going on. My body has always seemed to want to be heavier than I want it to be. Now I’ve had to allow it to get there and beyond. But, as you say, adapting to a bigger body, which is also tired and sore, is tough.
Like you, I’m also adapting my work life. I’m self-employed and have had to take time off in the last month or so because I hit a complete energy wall. But I’ll have to go back at some point as I need the money. Trying to figure what that looks like too.
Thanks and take care
Hi Jo,
Balance is a biggy in this condition and I often struggle with it. At present I feel less ill mentally but am doing less. So less brain fog a bit less cognitive issues-things like that. physically though, my walking is pretty poor and I have intermittent pain that pops up wherever it wants seamingly regardless of activity!
I think anxiety and/or depression is a big part of the condition for many people and my understanding is that everything is heightened so we are on alert and that uses energy. The anxiety is our reaction to protect our systems from attack. The initial trigger to the cfs/me starting the cycle to protect but, it’s faulty like the immunological response. It tries to protect from everything, sound, taste, vision, touch and smell. Sometimes I feel so overwhelmed by smells for instance I feel physically sick, do you get that often?
It is good you have a partner who can cook etc when they’re there as that will help. When I can, I make soup from any veg I need to use up and then I put in the freezer. I have a microwave so it’s easy to warm up when I just can’t do things and doesn’t need much in the way of chewing etc.
It is hard to accept the bed rest when you have been really active in the past and I can definitely get the physiological as well as physical aspects to that.
I saw a physio a year or so ago who said I needed to actually do less! He gave me so very small exercises that can be done in bed, only 2/3 repetitions. One is the clam and another is pelvic tilt. These help with hip pain and maintaining core strength. Very small exercises.
I am not very good at this but, relaxation helps with depression and anxiety too. It is different to resting as I am sure you’ll know from the yoga.
And, like you say, back to self acceptance which can be difficult when you feel awful! Be gentle with yourself and treat yourself when you can to something you enjoy.
best wishes
Beverley
yes I have also found I have gained weight, this is largely due to me eating sugars to give myself a quick burst of energy as I’m so tired all the time. I know this is not what I should be doing as it makes fatigue worse long time but I sometimes feel I need it, along with laying in bed this has also made me gain a stone in 4 months. This condition is very tricky so dont be to hard on yourself, I know weight gain is not another thing we want to add to this horrible condition but seems slightly inevitable due to the lack of energy we now have as we cannot exercise like we did before. However healthy eating I’m sure would help go along way and I know I need to do this too. Keep your chin up, let’s pray one day they find a cure for this terrible illness.
Thank you, Cheryl. I know, it’s so tempting to eat quick sugars to try to get a burst of energy!
It’s a bummer putting on weight. But, as you say, there is a certain inevitability about it.
This has got to be one of the least understood or supported areas of medicine. It’s weird there is such a lack of remedy or even solid information. Hence, we’re all finding our own way through, by the feel if things.
Take care
I’m so pleased to hear that you have found ‘something’ to help you: to at least, mitigate symptoms.
Thank you, so much for passing this on. I shall look at this for sure.
Best Wishes to You.
I’m glad to know you’re in an okay place mentally just now. The brain fog can be so debilitating and it’s so lovely to get some time when it lifts.
That’s really interesting what you say about being on alert. That’s definitely me. I don’t get overwhelmed by smells but brightness, heat and noise can do me in. I did do meditation for a while. When I do it regularly, it definitely helps. I must remind myself it’s a nice thing to do - in a black hole it can feel like another chore.
Unfortunately, I’ve just a small freezer where I live right now, otherwise I’d definitely batch cook. So, yes, acceptance of what is and self-compassion rules the day, I think!
Best wishes
Jo
That’s really interesting, Kasandra. What are low lectin foods?
So glad to know you’ve found something that works!
Best wishes
Jo