Diet and weight loss

[Emmarose47]

Hi all
I eat a controlled food plan ...
When I was ' normal ' or working as a nurse 4 days a week and running around like a mad women , plus walking and cycling a lot and hiking at the wk ends my good plan was substantial .
I've been housebound for the best part of a year and I pretty much am on the same food plan ... I was on less but over the mths have added a couple things back in .
It just seems v odd that I am this sedentary walking only about 1,400 steps a day yet am eating v similarly to how I was before ... In fact this wk I've lost 1.5 pounds ??

Anyone have an thoughts / experience ...

CFS and high metabolism ?

 

[Rufous McKinney]

For a while, recently, it seemed like whatever I ate I just could not put on any weight. I got down to the weight I was in my early 20s....

I've put 12 pounds back on and look much better, less deflated. And it surprised me I put that weight on.

so is a bit mysterious to me.

With my digestive challenges, eating too much is never a good plan and snacking late or binging usually I get punished so don't do that either.

I sort of worked it out with food: I don' live for food, and don't enjoy social eating... Its also a key part of the Sickness Behavior...dont' want to eat. So I found it easy to lose weight, not really liking food much and being very isolated such that temptations do' t exist (ie. I don' t go drive down to a restaurant and eat something delicious)

 

[Learner1]

Low cortisol is associated with ME/CFS and weight loss. Additionally, illness can increase nutrient demands.

 

[YippeeKi YOW !!]

It just seems v odd that I am this sedentary walking only about 1,400 steps a day yet am eating v similarly to how I was before ... In fact this wk I've lost 1.5 pounds ??

Anyone have an thoughts / experience ...

I've been going thru the same thing recently.

Starting in November last year, I noticed that I was losing weight. I started weighing myself, and I went from 138 lbs (5'8 1/2"), which has always been more or less my ideal weight (between 135 and 138), and which I'd managed to get back to after having had to restrict my diet drastically due to seriously unpleasant and intolerable reactions to almost anything I put in my mouth earlier in my ME..

So it was really alarming to watch my weight melt down to 130 lbs in a little over a month. And then continue dropping. As a cancer survivor, this is doubly alarming to me, snce that was one of the first symptoms of my lymphoma, altho I didn't know it at the time.

But now, suddenly, I've put back a few lbs, and like you, nothing's changed, I still live on a pretty careful tho much less restricted diet, same old same old every day, so its not like I'm jamming chocolate eclairs in my mouth on the hour and washing them down with whipped cream. ANd also like you, it's not like I'm back to daily inline skating or even doing much more than dragging up and down the stairs as infrequently as possible and washing some dishes a couple of times a day.

It's a mystery. I think @Learner1 is right about at least part of it being the demands of the illness, and where we are in our personal ME cycle. WHen those demands lessen a bit, we put on some weight. WHen they increase, we lose a little.

If you're deeply concerned, you might want to go to a Dr, if you can stand to, and get some other things ruled out, like over-active thyroid and other possible oddities ....

 

[Rufous McKinney]

I get my periodic stomach unraveling....I lose weight for sure during bouts of gastropersis....etc.

Our brains are very hungry and burning lots of calories.

There is an afternoon moment when I get hungry and often I just try to ignore it and generally it passes.

Never let a moment of low blood sugar go to waste, some say.....

 

[L'engle]

I went from 138 lbs (5'8 1/2")

Whoa we're exactly the same size! I'm am afraid of losing weight too. 130 is not much at our height. I hope you can get back to the 138 range.

 

[Emmarose47]

Thanks all
I thought m.e CFS we had high cortisol ?
Thanks re over active thyroid that's one I've been thinking of .
Yep brains are hungry I thought that too...
My brain is v active poor thing ...

 

[Emmarose47]

Whilst I'm on this thread can I ask others if thirst is a thing for them ...
I drink soooo much water . Whilst not a bad thing per se I really do have a lot of thirst ..
Common for us ?

 

[Learner1]

Whilst I'm on this thread can I ask others if thirst is a thing for them ...
I drink soooo much water . Whilst not a bad thing per se I really do have a lot of thirst ..
Common for us ?

Have you been checked for diabetes?

 

[BrightCandle]

Whilst I'm on this thread can I ask others if thirst is a thing for them ...
I drink soooo much water . Whilst not a bad thing per se I really do have a lot of thirst ..
Common for us ?

For me this was electrolytes. Ever since I got ill I have had excessive thirst, was not diabetic at any point but still had it. After I did a hair mineral test it become clear I was chronically low on magnesium, potassium and sodium and electrolyte tablets seemed to work, a couple a day was enough to get rid of that especially one before bed.

 

[YippeeKi YOW !!]

I drink soooo much water .

Have you been checked for diabetes?

Agree with @Learner1 .... or even pre-diabetes. In the event you can drag yourself into another Drs office, something I cant seem to bring myself to do ....

I was chronically low on magnesium, potassium and sodium

I had the same issue. I now make a morning 'tea', with a lot of stuff like ginger, cinnamon, a little glucose in the form of table sugar, and including potassium and sodium, followed by 100 mgs of magnesium glycinate in tablet form. It's really made a diff ....

 

[YippeeKi YOW !!]

I thought m.e CFS we had high cortisol ?

Not always. Sometimes just erratic cortisol ....

 

[YippeeKi YOW !!]

Whoa we're exactly the same size! I'm am afraid of losing weight too. 130 is not much at our height. I hope you can get back to the 138 range.

Thank you sweetie. I seem to be regaining slowly and steadily, but it's still unnerving .... I think part of it might be due to inconsistent IBS-D which seems to come and go in an unpredictable and inconsistent way, so it's impossible to figure out.

 

[YippeeKi YOW !!]

Yep brains are hungry I thought that too...

Which probably made it hungry again .....

 

[Rufous McKinney]

I think part of it might be due to inconsistent IBS-D which seems to come and go in an unpredictable and inconsistent way, so it's impossible to figure out.

I tend towards an IBS-D state altho I don' t think of it as diarrhea on a regular basis. There are episodes of gut unhappiness.

so I know food moves thru my system rapidly- I tried taking enteric coated pills and saw them intact at the other end of the story. I am very rarely constipated/ the other day I went 24 hours and that was VERY Strange. felt VERY off.

So I wonder how this affects our absorbing nutrients and calories....and I would go wander forth to read about that but instead : I need breakfast.

 

[Learner1]

Not always. Sometimes just erratic cortisol .

Many of us have adrenal insuffiency, or low cortisol.

 

[L'engle]

I am thirsty all the time. I can't hold water unless I have some salt though. Otherwise it just goes right through, I'm left just as thirsty several bathroom trips later.

 

[Learner1]

I am thirsty all the time. I can't hold water unless I have some salt though. Otherwise it just goes right through, I'm left just as thirsty several bathroom trips later.

Adrenal function?

 

[L'engle]

Adrenal function?

It's definitely crappy adrenal function. I've tried adrenal extract though, dhea, and various other things. all had side effects. I just try to keep the salt balance somewhat when I remember to. It's hard always remembering to eat the right amount of each exact thing. My diet is so careful and perfect compared to every healthy person I know and it's still never enough. Then if I fall off it for a couple of days I regret it.

 

[YippeeKi YOW !!]

I am very rarely constipated/ the other day I went 24 hours and that was VERY Strange. felt VERY off.

That's incredibly odd !!! I had the same thing, at about the same time (a couple of days ago), and it's unusual enough for me that I took note and wondered what was happn'in ..... I felt off-kilter and very 'off' ....