Losing weight with ME/CFS

keepswimming

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So my weight has crept up this last year and I've hit the point where I either need to lose some or buy a whole new wardrobe ๐Ÿ˜‚

I've been on diets and lost weight before ME/CFS but I'm really struggling now!

I have tried eating 1500 calories a day as recommended by the NHS, but it affects my fatigue so badly. I'm so exhausted from lack of food, and then I end up over eating just to try to get some energy back! Perhaps a higher calorie goal would be better but then I'm not sure I would lose any weight...?

Like many of us I snack regularly during the day to keep energy levels up. And for obvious reasons I can't exercise to lose weight... I already eat healthily, limit junk food etc.

Any suggestions? I'm happy for weight loss to be slow, I'd rather do it in a way I can cope with.
 

Judee

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When I started taking antibiotics for possible Lyme co-infections, I started to lose weight.

I think for one because a lot of cravings went away but I also think some of the signalling gets straightened out in our metabolism and we can all of a sudden start processing calories more efficiently.

Even though I still lose a lot of hair, my hair is thicker this past 10 months than it has ever been so that tells me my body is finally getting some of the nutrients.

Anyway, just a theory of mine. Not necessarily recommending antibiotics but maybe something(s) to get your pathogen load down a bit. ???

Hope you can figure it out. Also, please don't drive yourself crazy with diets other than those meant to help you be healthier.

That is another time/way I started to lose weight is when I finally decided to stop doing "weight-loss" diets.

At one point, about 15 years ago, I weighed probably 50-55lbs more than I do now.

It was a very slow weight loss for all but the last 15lbs (those are the abx pounds) but they say slow weight loss is much easier to keep off.
 
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I had my doubts it was even possible due to the reasons you mentioned, i've found that I can do it if I have a relatively high amount of energy, but when im really tired I seem to eat more. I managed to lose around 5KG in the past few months, would like to lose another 5 or 10 to get close to my natural weight.
 

lenora

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Bad news here.....At my age, I have sizes from about 4 to 14 in my closet. I have no idea what my weight/size is at the present time. I understand that this is fairly common as women get older.

Also, I've had this happen a number of times, drugs can affect our body weights in both directions. Now this special effect will often taper off after 2-3 mos., but gaining weight is fairly common when starting a new med, supplement or the like.

I want to get rid of a lot of clothes.....but some have hardly been worn and my thinking is such that I may need them. (Well, someone else may need them a whole lot more.) I was not that way at all when young or before my problems. Of course having to slow down doesn't do much for our metabolism either. I can gain or lose weight rather easily.....probably lost 10 lbs. in the past week alone. Winter foods tend to be more fattening, or at least that's what I've found.

I'm glad the holidays are over. At least people won't be arriving with homemade candies, cakes or cookies. Getting back to normal will be good. (But then Feb. 14th is coming up!)
 

Judee

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relatively high amount of energy, but when im really tired I seem to eat more.
Yeah, we have to eat throughout the day. I really am convinced we don't process nutrition the way healthy people do. We'd be fine if we had an IV drip of it but who wants to drag a pole around all the time? We have to drag this disease already as it is.
 

keepswimming

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It really is difficult isn't it! I can't believe how exhausted I feel if I try to just stick to three meals a day rather than snacking... I can't do it. I will see how things go but perhaps a new wardrobe is the way to go...!! To be fair, it wouldn't be so expensive nowadays, happily pyjamas are stretchy ;)
 

lenora

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Good Morning, Ladies: An extra 10-15 lbs. isn't exactly horrible for women as we age. Now having significant weight problems is a different story.

So if certain healthy foods will keep you filled, then eat them. I usually eat fruit, but everything has been awful this year, including apples, oranges....basics.

I had the recent experience of either falling or having a seizure that has left me totally bedridden for what may be a min. of 6 wks. I've been told to not have an MRI at this time, although my neurologist is concerned about the seizures and is arranging one for this week.

I didn't fall far, but boy it was like I had been lifted up and thrown.....and I've definitely done something to my hip, pelvis and even my l. knee. I can't walk, sitting is hard & if I'd had a little more padding, it may have saved me from what is obviously an osteoporosis break.

So buy some more of the pj's you like. I have clothes and more clothes.....and I'm probably not going to leave the house for the rest of the winter. (My daughters buy them for me as gifts a lot of the time). So if your cholesterol is OK, your BP and no diabetes....be happy. Plan your snacks (healthy ones) and know that withdrawal from sugar and unhealthy foods generally stops in about 3-4 days. The holidays are over, so that should help. Time to start getting ready for next year though!! Please don't fall. Yours, Lenora.
 

Diwi9

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My weight peaked in June 2021. I dedicated myself to weight loss and have lost 30+ pounds. Given this illness, my weight loss was based on diet. I'm afraid that there was no work around, it was about calorie control and sometimes the calories are incredibly reduced, especially during crashes.

Here's some of what I did:
- Started by not drinking calories...all beverages at zero calories.
- Removed or reduced medications associated with weight gain.
- Cut processed foods (no breads or crackers).
- Counted calories. This means using a lot of low calorie vegetables to increase volume without many calories...I would try to make sure my breakfast and lunches were around 300 calories each (think eggs, cottage cheese, soups, veggies). To be able to cut calories and eat to satisfaction means reducing carbs. I don't limit veggies or fruits, but grains are very limited.
- Portion control. If I eat something rich, and I do, I restrict the portion and try to stay within allotted calories. For example I still have green chile cheeseburgers, but I order the junior size which at our local place is 400 calories, and that is all I will eat for that meal.
- After dinner, if I get hungry, I only eat pickles, olives, or a cup of miso soup...each are satisfying and low calorie.
- Sort of intermittent fast. I basically delay breakfast until I am truly hungry which narrows my eating window.
- Set goals down-the-road vs. immediate results.

Some of us with ME have bodies that can go into very slow metabolic rates and when we are next to zero activity, it is easy to consume an extra 100-300 calories per day. These calories add up over time.
 

keepswimming

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@vision blue I eat healthily on the whole. I do have dairy and some high fat foods like nuts etc but I try to balance them out with lots of veggies etc...

@Diwi9 that's really helpful thank you. Do you mind me asking what sort of calorie goal you aimed for in a day?
 

vision blue

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Has nothing to do with healthy or about balance. Was Just talking about what causes weight gain and is rarely talked about.
 

keepswimming

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Has nothing to do with healthy or about balance. Was Just talking about what causes weight gain and is rarely talked about.
Sorry if I didn't answer the question properly! I guess what I meant was, I do have some high fat foods but I try not to have them all the time and to keep them in proportion with lower fat foods. But of course you're right that they can still cause weight gain, and I think it's something I could do better with so I will look into it. Thank you.
 

vision blue

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Hi. Just trying to give info that nay be helpful. Just to be clear, i wasnt talking about high fatral, am talking specifically dairy- and actually transfats which has a property that can mimic the weight gaining in dairy (and if ted meat eaten in verlarge quantities it can mimic that too) Im sure theres got to be individual differences in the metabolism of different fats, but again going back to ideas if its one that hasnt cone up for you yet you might be surprised by it. (By dairy i mean milk, butter, cream, yogurt, sour cream, cheese etc Anything made from the milk of any animal, whether full fat or non fat. Heres one way to think about it: what is milk for?
 

keepswimming

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@vision blue Oh that's interesting. I didn't know that about dairy. I will definitely look into it more. I eat yoghurt and cheese most days so that could be making a difference.
 

Diwi9

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@Diwi9 that's really helpful thank you. Do you mind me asking what sort of calorie goal you aimed for in a day?
I have experimented between 800, 1000, 1200, and 1500. 1500 calories is too many calories for me in a day for weight loss, that's more of a maintenance calorie count for me. In order to lose, I target about 1200 calories per day, but during a crash I may reduce even more.
 

Diwi9

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Saw this article today and I have to say "Yes" in response to it. I definitely experienced metabolic slowing with ME/CFS and again when trying to lose weight. The slowing is why I realized that even though I thought I was in a caloric deficit, I wasn't it. When people say it's "calories in vs. calories out" they are missing the point, the same amount of calories are not equal between individuals, or even over time. For some people, cutting a few hundred calories a day is easy, others can feel their bodies basically freak out from fewer calories--once again, we are all individuals. https://www.nbcnews.com/health/heal...lows-weight-loss-causing-diets-fail-rcna13543
 

lenora

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Hello @Diwi9.......I agree that caloric intake and output are two entirely different things....especially as we age. It's a very hard thing to control as calories are difficult to work with, especially as we do reach those certain ages.

We're never going to be our teenage dream again and certainly health is far more important to me than so many other things at this stage.

You'll notice that I got your black cat and Mary's straight. Unfortunately, I sent a message to Mary and once again it didn't go through. I try, heaven knows I try and right now health is "it" for me....probably for you, too. Feel better. Yours, Lenora.
 

Diwi9

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We're never going to be our teenage dream again and certainly health is far more important to me than so many other things at this stage.
I agree with this. I also know that weight loss has been enormous for my sense of wellbeing. I had a lot of GI issues for the first few years into my relapse. I was only able to really start this experiment in weight loss when that improved on a more longterm basis.