ME/CFS Tips and advice on how i can lose weight with this condition.

00missy · February 2018

Hi 6 months ago i was diagnosed with ME/CFS, after being ill for 3 years. Before i became unwell i was healthy and loved to workout. I also loved running and taking part in 5k fun runs but now i can just about walk on some days. I have unfortunately gained weight and i would love to lose it! I have a wedding coming up and i want to feel confident.
If anyone has some friendly advice on this subject i would be most grateful.

kommodevaran · February 2018

Not really friendly, and not really advice, but this is what you need to do: You have to eat less. Set your activity level to sedentary and your weekly weightloss goal to the closest equivelent of 1% of your body weight. Use a food scale and log everything, and hit that calorie target every day.

00missy · February 2018

Thank you for your reply. I have lose 2 stones in the past but this included exercise and diet control. If anyone knows how any safe pacing way of working out with this condition, i would love to know

michellebirtleeds · February 2018

Hi. I've lived with CFS/ME for almost twenty years now, currently (mostly) in remission. I've also gained weight due to lack of activity and because eating was one of my few pleasures when I was housebound, and I'm here to lose it.

The best research shows that weight loss is about 80% diet and 20% exercise. Walking is good, but you won't really lose weight unless you eat at a calorie deficit. I recommend meal planning so you have food ready to go when you need. Back when I had a lot less energy, I would shop one day (this required all of the day's energy), and then cook the next. Check around, there might be a grocery store/service in your area that delivers groceries for a small fee or for none.

I also recommend frozen or pre-chopped vegetables; those will save you some energy. When I was at my most sick, I basically cooked exclusively with my slow cooker because it required less effort on my part.

For exercise, be very careful. Walking is great exercise but be careful not to overdo it. My husband suggested weightlifting to me and I found it very helpful. If you're interested in that approach, you might start with bodyweight exercises and GO VERY SLOW so you don't overdo it.

Good luck.

cheryldumais · February 2018

I have CFS and low thyroid and have lost 89 pounds so it can be done. What I found worked for me was to take my time increasing exercise and to eat at a deficit. Be sure you are getting enough protein and not too many refined carbs. Protein seems to stay with me longer and I feel better if I get enough.

I walk 6 days a week. My goal is 8000 steps/day. I started at 4000. It's hard for people to understand how incredibly sick you get if you overdo it but as has been said here the main thing is lowering your calories. Don't try to lose it all at once. I would recommend you go slow and find something you can live with the rest of your life. Quick crash diets never work out. If you make yourself sicker by trying to lose too fast you will never reach your goal. Good luck my friend and don't lose hope.

00missy · February 2018

michellebirtleeds wrote: »

Hi. I've lived with CFS/ME for almost twenty years now, currently (mostly) in remission. I've also gained weight due to lack of activity and because eating was one of my few pleasures when I was housebound, and I'm here to lose it.

The best research shows that weight loss is about 80% diet and 20% exercise. Walking is good, but you won't really lose weight unless you eat at a calorie deficit. I recommend meal planning so you have food ready to go when you need. Back when I had a lot less energy, I would shop one day (this required all of the day's energy), and then cook the next. Check around, there might be a grocery store/service in your area that delivers groceries for a small fee or for none.

I also recommend frozen or pre-chopped vegetables; those will save you some energy. When I was at my most sick, I basically cooked exclusively with my slow cooker because it required less effort on my part.

For exercise, be very careful. Walking is great exercise but be careful not to overdo it. My husband suggested weightlifting to me and I found it very helpful. If you're interested in that approach, you might start with bodyweight exercises and GO VERY SLOW so you don't overdo it.

Good luck.

cheryldumais wrote: »

I have CFS and low thyroid and have lost 89 pounds so it can be done. What I found worked for me was to take my time increasing exercise and to eat at a deficit. Be sure you are getting enough protein and not too many refined carbs. Protein seems to stay with me longer and I feel better if I get enough.

I walk 6 days a week. My goal is 8000 steps/day. I started at 4000. It's hard for people to understand how incredibly sick you get if you overdo it but as has been said here the main thing is lowering your calories. Don't try to lose it all at once. I would recommend you go slow and find something you can live with the rest of your life. Quick crash diets never work out. If you make yourself sicker by trying to lose too fast you will never reach your goal. Good luck my friend and don't lose hope.

Thank you both so much for advice. Its nice to talk with people that understand the illness and not just think im lazy. This invisible illness has so many different challenges that we have to face everyday, it would be nice to feel in control of my body again. I am on day 3 of the "diet" and i am so hungry but i think this is because i comfort eat where i am alone in the house for long periods of time. Its snowing here and very cold, so my legs are in even bad at the moment. Does the cold weather affect your ME/CFS?

cheryldumais · February 2018

I'm 61 now so I hurt all the time when the weather changes good or bad. Not sure how much is CFS and how much is arthritis, lol. A hot bath is my oasis when I hurt. Gives me an hour or so of relief. I'm unable to take any opiates for pain so I have to rely on other things.

SilverRose89 · February 2018

Hiya. I was diagnosed with post-viral CFS/ME last year, after being very ill and in pain/extremely fatigued since a viral infection in 2015.

I have never been an overly active sort and struggled with my weight long before this, but have put on a lot more weight since. Things that used to be so easy and I wouldn't give a second thought to became the hardest things in the world. Some mornings I would struggle to even get dressed and my boyfriend would have to help me. I'd get frustrated about so many things, my mental health got worse and my diet completely nosedived. I have had to drop my working hours as between the CFS and the mental health stuff, I just couldn't cope.

Anyway, weight loss. I have lost 20lbs since the beginning of January just through diet alone, weighing and logging everything and keeping to a deficit. I have another 40lbs or so to go and aiming for 1lb a week. I am also working closely with a physio who is helping me gain some strength and improve the fatigue. My program is currently basic pilates exercises and swimming slowly once a week. For a long time I made the mistake of just wanting to push myself, thinking if I could only make myself do what I used to do, then things would be better. But of course this is the worst thing to do and I would struggle for days after and set myself back a lot with the CFS.

A lot of people use exercise as a way to assist their calorie deficit and be able to eat more while losing, but of course for us that is not easy. But for weightloss it is the deficit that is important, so it is perfectly possible to still lose weight successfully. Tight logging, meal planning, taking it slow, and not depriving yourself of things you love but instead finding ways to fit them into your daily calories are all key here.

When I expressed sadness to my physio about not being able to do the things I used to be able to do exercise wise, she reminded me that what I used to be able to do is not important, it's about what I can do now that matters, and how I can improve on this slowly. It sounds obvious, but that really helped me get out of that negative mindset and start focusing on the now.

Good luck

hotchiccy · February 2018

00missy wrote: »

Hi 6 months ago i was diagnosed with ME/CFS, after being ill for 3 years. Before i became unwell i was healthy and loved to workout. I also loved running and taking part in 5k fun runs but now i can just about walk on some days. I have unfortunately gained weight and i would love to lose it! I have a wedding coming up and i want to feel confident.
If anyone has some friendly advice on this subject i would be most grateful.

Hi 00missy

I am an ex-M.E/CFS sufferer so I wanted to reply because I know exactly what you're going through. In my case, I had a vicious bout of (suspected swine) flu over Christmas 2010 and developed PVFS. It took me 6 months to get better, then I got chicken pox (of all bloody things!!!) in January 2011, and developed full-blown M.E/CFS as a result. It's only since around March 2017 that I've considered myself as recovered.

Like you, during that time, I piled on the weight. People are right in saying that the major thing to do is tackle diet, but it's so hard to do when you feel like crap all the time and just getting yourself beans on toast costs at least one spoon from your daily supply! However, while I was still pretty bad, I did manage to lose weight, so I'll tell you how I did it:

First thing I did was take as much processed food out of my diet. I started having a smoothie for breakfast every morning. Deliciously Ella recipes were particularly helpful. I did a LOT of internet research on healthy but easy-to-make dinners and before you could snap your fingers my snacks were homemade popcorn (takes literally 5mins when you know what you're doing. Husband bought me a popcorn recipe book!), my main meals were things like roasted aubergine topped with cheddar and accompanied by salad, or stir fry (sauceless because I'm coeliac veggie and most sauces contain wheat and/or animals), or I'd batch cook things like healthy pastas with roasted veg and pesto, which I could portion up for lunches/dinners over various days.

Second thing I did was seriously reduce my portion sizes. I realised I was eating as much as I used to eat before I got ill, but now I was moving less. That was never going to work. Initially, I got my husband to dish out my portion sizes because my eyes have always been bigger than my belly. After a while I got better at judging the correct portion sizes for myself and I started to take my own hunger into account. Was I really hungry enough for that giant serving of risotto? Not really, no. So I'd take a third out and see how I felt after that. If I no longer felt hungry, I left the rest behind. Waste sucks but it's unlikely you'll hit the right portion size without some so make your peace with it now! lol!

Thirdly, and this has been VERY controversial so please don't slate me for it. I started going for walks. I'd tried everything from CBT to reverse therapy and had very little success with any of them. In the end, going for (very) short walks, gradually increasing them, and accepting that the resulting fatigue was the boundaries of my energy levels having to adjust, made a HUGE difference. I did sometimes push too hard and I would pay the price but by the winter of 2015, I was playing rounders for 2 hours every Tuesday night and playing badminton every Thursday. In Summer 2016, my husband and I went to Rome and even though my fatigue was still very much there, I managed to walk 14,000 steps one day - without post-exertional malaise (although my muscles were AWFUL from not being used to the exercise and my husband had to massage one hell of a knot out of my left calf). I came back from that holiday and a month later, started a new part-time job (saturdays only), which last year I felt well enough to increase to 3 days a week. Nowadays I could work full time but don't because I don't want to. Being so ill for so long made me realise that with work, good enough is good enough and now I dedicate as much time as possible to happiness and wellbeing, which involves a fair amount of exercise. That gradual increase in the amount of activity I did (and as you can see, it took years), is what I honestly think cured my M.E AND helped me lose the weight.

Diet is the biggest key, especially as I can't say the same approach that worked for me will work for you, but it's worth a try. Start with the diet, listen to your body and ignore what other people say. You'll get there (in terms of the weight and your recovery).

00missy · March 2018

Thank you for the replys. I'm having a crash ATM but I will reply when I'm better :-)
Thanks for the love x

corinasue1143 · March 2018

I have Fibro, cfs, ra, and oa. A doctor suggested, and it worked for me. Get a cheap pedometer. Write down your steps every day for 7-10 days.
Average that. Start walking your average every day. Second week, add 100 steps a day. Listen to your body and adjust as needed. When I
Got a little better, I started restorative yoga to help with sleep. Later started swimming.
As for food, started with fresh veggie juice. Started eliminating boxed foods. Added more fresh vegetables. Try to eat some protein every time
I eat, but never a lot at one time. I've never seen on the forums where anyone else thought this was important, but it matters to me. The point is,
Listen to your own body, and if you find something works for you, do it. Even if no one else is doing it.
The cold bothers me, my ankles swell and pop when I walk. Thought this was arthritis. But lately every time it gets cold, my Fibro starts the itching thing.

Hope you feel better soon!
Oh yeah! Epsom salts baths at bedtime if they make you feel better and sleep better.

gentlygently · March 2018

Another cfs/me person who benefitted from pacing and also very gradual graded exercise ...swimming for me. Very measurable. Very good for the cfs and the mind - and weight loss. So don't rule exercise out - but find your baseline and go very gently. Mssg me if you'd like more guidance.

I worked out my (modest 10lb or so) post cfs weight gain was the same calories as energy I would once have spent out and about and now spent in bed...

I eat reasonably healthily. So I am trying to make Portion Control my friend (here knowing what foods are 'calorie dense' eg cheese and what foods you can pretty eat til the cows come home eg carrots helps!). I don't have the mental energy or enthusiasm for rigid calorie counting. And I am taking a slowly does it approach.

Sadly - like most of us - I tend to like the high calorie food and nowadays have a tendency towards comfort eating - especially in a relapse (when the exercise comes down too). Hey ho.

Good luck. X

00missy · March 2018

Thank you for all the replies, when i have more energy i promise to personal reply to all you lovely people.
Missy

Seffell · March 2018

I lost most of my weight (30lbs total) while not moving almost at all (not cfs or me). Just making deficit. It was difficult because I had to eat 1200cal per day to lose 2-3lbs per month but I made it. You just need determination and imagination for high volume low cal. tasty meals.

ME/CFS Tips and advice on how i can lose weight with this condition.

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