Do we burn through more calories because of our illness?

[snowathlete]

The reason I ask is that I went on a diet, starting about 40 days ago. I aimed to lose 2.5 stone in just under a year. something like 1/2 pound or a pound a week was the target I set. In that last 40 days, I've lost 19 pounds.

Its great, and im pleased, dont get me wrong, but I read today that a pound of fat is equivelent to 3500 calories. I know that in removing it we also lose some other tissue, but it still doesnt explain why im losing my weight as quickly as I am.

On typical day, like today, I have limited my diet to 1400 calories. Now, im not that active, but im not bed bound, and sometimes I do get out, to the shops or whatever. So I probably need about 1600-1700 calories, thats my guess anyway...

So, if i am only short by 200-300 calories a day, how come i am losing roughly 1/2 pound a day on average? Some days more, some days less.

I just wonder if maybe its not just me, and because of ME, we require more calories a day - 500 or 1000 more, or something like that. Anyone got a clue?

 

[Calathea]

Many people with ME put on a lot of unwanted weight and find it very difficult, if not impossible, to lose it. Others can't keep the weight on no matter what they do. So we don't all respond the same in this respect. I lost weight at 1lb/week on 1050 calories, and it seems that I will maintain on only 1200, though it's going to take a while to see how that settles down. I'm 4'11 and went from 141lb to my current 102lb, for reference. Theoretically, I should be able to maintain on a higher level of calories, but it doesn't seem to be the case.

If you put your height and current weight into a standard calorie calculator, what do they suggest you would need to be eating in order to lose at your current weight? Is it more or less than what you've found gives you that effect?

 

[snowathlete]

to do what i have done so far, a calculator i just looked up on the net, says i would need to have only 883 calories a day. thats more than 500 calories less than i have been having.

 

[Calathea]

Pretty substantial difference, yes. Are you sure that you're calculating your calorie intake correctly, by the way? A lot of people overestimate or underestimate their calorie intake. I'm just asking that to check, though. Considering how many people report unusual levels of difficulty in maintaining their desired weight with ME, I think there probably is something screwy going on for many of us.

 

[snowathlete]

pretty sure, yes. I use an iphone app called MyFitnessPal, and it has a large database of products, so most of the time i can lookup the exact product im eating and state how much of it i am having, half a jar, 100g, whatever, and it calculates based on the exact label values.
Its pretty easy to do because i dont get to eat much so not many things to record. :-(

 

[ukxmrv]

I've counted calories and then tried to lose weight by eating less but it doesn't work apart from a very small initial loss of weight for the first few weeks. I weighed, measured and calculated. Then it stops. If some subgroups do need more calories then I am not in that group.

Then again I suspect that something else may be my problem as I seem to be holding my weight as fluid I think. My stomach gets so bad I swish when I walk. When I had food poisoning and lived on salads I even managed to gain weight.

 

[Valentijn]

I would guess some fluids are being lost. That's all that seems to happen to me when I diet now - my weight goes down between waking up and lunch (when it should be increasing due to drinking lots of water and eating) and my OI gets worse.

 

[Calathea]

Hang on a minute, you've just gone the last 40 days losing 1/2lb a day, and at one point you collapsed and ended up in hospital? You do realise that this rapid a rate of weight loss is probably dangerous for someone with ME? Why didn't you slow down once you realised that you were losing weight far faster than intended? You're presumably not that overweight to begin with either, since you're only aiming to lose 2 1/2 stone overall, so that makes it an even more rapid rate of weight loss than it would have been for someone who started off at a much higher weight. Crash dieting is dangerous for healthy people, let alone for people in our state, and ending up in hospital is a big warning sign. Be careful with yourself, hon, and go and eat more!

 

[justy]

I joined slimming worls recently and in 4 weeks have only lost one pound! whilst being starving hungry (even though everyone else in the group says they are never hungry) the diet is based around virtually no fat, which seems to also make me very tired. The most depressing aspect of it all is that my husband has lost 4 stone in the same amount of time, just because I am on a diet!

Sorry Snow - i ahve no idea about your weight loss, but it doesnt seem right does it? I would back off slightly to slwo down the weight loss - you may have underestimated how much you need to eat every day. we are all different and i find that most men tend to lose weight much more easily than women. (see my story above)
Take care (and i am a little jealous!)
Justy.

 

[Carrigon]

I always wonder why I don't lose weight from all the tossing and turning I do trying to sleep. I think I move around alot in my sleep. But I don't lose a pound.

 

[Calathea]

I think you're actually meant to lose quite a bit of weight as a normal process during sleep, and if you don't get enough sleep, it buggers up your weight accordingly. I've read quite a few articles about how good sleep is crucial to successful weight loss. So you may be onto something there with regard to why so many of us struggle to keep our weight down. Maybe that's why I've been able to lose weight successfully, I sorted out a lot of my sleep problems a few years ago? And the weight loss slowed down when my sleep quality deteriorated due to gabapentin withdrawal. Since I'm more or less at goal I hadn't really worried about it, just assumed that it was the normal way in which weight loss slows down as you near goal, but it is rather odd that I've only added about 100 calories a day to what I was eating when I was losing at a rate of 1lb/week, and the weight loss has promptly stopped. It would be nice to be able to subsist on more calories than I'm currently on for weight maintenance, healthy fats for instance.

Justy - 1lb in 4 weeks is frustrating but if it continued long-term, would still be successful weight loss. I only know one person who has managed to keep going with weight loss at that rate, though, as it's difficult to wrap your head around. A diet which makes you hungry and exhausted doesn't sound the best for you, however. Your husband may be doing well on it (although that's a scarily fast rate he's losing at), but that doesn't mean you will! Any idea what percentage of calories are coming from fat? I'm on about 17% of calories from fat due to gallstones, and am looking forward to being able to raise that a bit once the gallbladder is out (haven't been near an avocado in months), although I'll probably still stay on a relatively low-fat diet. Some people with ME do better on a relatively high-fat diet, though.

 

[hurtingallthetimet]

thats great that you lost weight because you wanted to..i dont know how many stones are im in us...but for myself my being ill and i keep getting more ill ive not lost any weight at all...in fact ive gained a huge amount...the doctor pushes for me to exercise but the pain fatigue and its all so worse afterwards i dont much..i walk a little with daughter wehn i can but only whne taking pain medications/morphine..

i wish id lose weight but i havent nothing seems to work...youd think from the worrying, stress, crying id lose some but nope...

 

[Calathea]

1 stone is 14 pounds.

I'd ignore your doctor, exercise makes almost everyone with ME worse and it's clearly making you worse. Anyway, exercise isn't the way to lose weight. Go to any decent weight loss forum and the mantra will always be, "Diet to lose weight, exercise to keep fit." Did you try any food-based approaches? Although it may not be a good time for you to lose weight anyway, you've got so much going on.

 

[snowathlete]

Hang on a minute, you've just gone the last 40 days losing 1/2lb a day, and at one point you collapsed and ended up in hospital? You do realise that this rapid a rate of weight loss is probably dangerous for someone with ME? Why didn't you slow down once you realised that you were losing weight far faster than intended? You're presumably not that overweight to begin with either, since you're only aiming to lose 2 1/2 stone overall, so that makes it an even more rapid rate of weight loss than it would have been for someone who started off at a much higher weight. Crash dieting is dangerous for healthy people, let alone for people in our state, and ending up in hospital is a big warning sign. Be careful with yourself, hon, and go and eat more!

Thanks Calathea. I dont think my hospital trip was related in any way. Cant be sure of course, but i dont think it was. I started at 15 stone 2. I did think about eating more and taking it slower, but i seemed to be doing alright. No negative symptoms, just losing weight at a fast rate. On the whole, im not terribly hungry or anything, ive just cut out alot of crap, refined sugars, all bad fats, cut down portion size. The main thing i have cut right back on is bread, its absolutely massively nutritious, at least in terms of energy.
Still, i could reduce the risk and take on more calories, see if that slows the weight loss to maybe half what it is. Might be prudent.

Regarding the sleep, i sorted mine, about a year ago (amitryptaline) so maybe that is part of why i am losing weight quicker than i used to.

When i was well years ago, i found a low carb diet worked really well for me to lose weight, but it was not as easy to live with than what i am doing now. The other thing i cut out was drinks, coke, OJ, multiple cups of coffee (max of two a day now) and milk, which i used to drink alot of.

Before i was ill, i used to be about 12 stone and very fit. Then i got ME, couldnt do anything and put on 3 stone.
I used to just maintain weight by a small amount of dieting, and exercise - which i did so much of i could eat alot. But with ME exercise is out of the question. I tried to diet about a year ago, but couldnt manage it - i wasnt well enough to take it on. Since then ive had some small improvement so its become realistic for me. Dont feel bad if you have to wait. Instead, perhaps try to limit weight gain. Thats what i did for about 4 months before christmas, just cut out junk, chocolate, coke, cookies (ummmmm...cookies), sweets etc, but let myself eat anything else. It did help me stop getting much heavier.

For you lot in the US, there are 14 pounds in a stone, or a little over 6KG to a stone. So i am aiming to lose about 36 pounds, or 15kilos.

 

[ukxmrv]

Snowathlete,

Are you losing water or fat do you think? Not sure how to tell but when I lose fluid I tend to to go to the loo a great deal and the swishing stops around my abdomen a bit. Sadly for me diet makes little long term difference in this.

Sometimes people who give up food that they are intolerant to or allergic to report a huge weightloss. Was talking to a PWME who was frustose intolerant and she lost a great deal of weight when she cut fruit out of her diet.

 

[snowathlete]

I'm guessing fat, I am thinner (significantly) pretty much all over. Could you hold and then lose that much fluid? I'm peeing the same as always I think.

 

[richvank]

Hi, all.

Besides the amount and types of food intake, I think there are a couple of other factors that influence weight gain or loss in ME/CFS.

The first is the condition of the digestive system. In many cases, the digestive system has a lot of problems, and that limits how much is actually absorbed into the body, versus how much is fermented by dysbiotic bacteria in the gut, or passes out in the stools, undigested. For PWMEs who are losing weight or not able to gain, this is the first place I would look.

The other factor is that in ME/CFS, when glutathione depletion is present, there is a partial block of aconitase in the Krebs cycle of the mitochondria in the cells. The result of this is that the person is not able to burn carbs or fats at normal rates, and the excess is converted to stored fat, causing weight gain.

I think that these two factors can explain most of the weight behaviors in ME/CFS.

Best regards,

Rich

 

[SickOfSickness]

I think our bodies are more stressed and use more calories. Also most of us have "leaky gut", or some rejection problems with digestion (food intolerances), and most of us don't digest as well because of overall stress. Pain = stress. Allergic to anything in environment = stress. Too often we are stuck in fight or flight mode.

 

[dannybex]

I would say we burn through more NUTRIENTS rather than calories per say, including vitamins, but especially minerals, trace minerals and of course protein, carbs and fats.......

 

[Patrick*]

I've lost 30 lbs. since I first came down with ME in June, 2011. The first 15 lbs. lost were undoubtedly due to the ME, because I hadn't yet started any treatments. They dropped off so fast, at the time, I was scared I had cancer. Then I got diagnosed ME, changed my diet to low carb and started taking supplements, which may have contributed to the additional 15 lbs. lost.

Rich VanK: The first is the condition of the digestive system. In many cases, the digestive system has a lot of problems, and that limits how much is actually absorbed into the body, versus how much is fermented by dysbiotic bacteria in the gut, or passes out in the stools, undigested. For PWMEs who are losing weight or not able to gain, this is the first place I would look.

Rich, what kind of testing is available for this?