A poll on fatigue and eating

Not sure how to answer. I have comorbid POTS and am more tachycardic after eating, with slower HR recovery even when sitting or lying down, and my temperature fluctations are greater and more rapid in their changes.

But am so used to managing this by doing active any things that require me to be upright (which might be something like washing up/ bulk food prep - not on the same day ) before breakfast or lunch, and being very quiet afterwards for 1-2 hours (I can do very little after mid afternoon anyway).

And I just have a number of layers that are put on or taken off every few minutes.

Sometimes when in situations of not being able to pace in my usual way, a carb 'hit' helps me get through the next period.

 

In my case, I never experienced hypoglycemia-like symptoms prior to getting ill with ME/CFS and that remains the case today (36 years later).

I do love good food and like to cook. I'm a large athletically-build man, but in recent years I've been packing on weight. All on the inside (visceral fat, which I now understand is medically the worst kind). I think not having "blubber" on the outside fooled me into feeling big and strong. A mistake.

To reverse course I started intermittent fasting about a month ago, which is going well. I can't say that I feel more or less energized, but pounds are coming off. Miles to go but to your point, fasting is not a problem for me--but feeling a lack of energy/fatigue is a very serious issue. It seems just as bad, whether I'm stuffing my face or fasting. No difference.

Bill

 

Something interesting happened. I had awful nausea and diarrhea for a day. I hardly ate anything for 2 days and rested a lot more than usual. I tolerated the fasting without problems and on the third day even felt better than normal. I wish my normal state was a bit closer to this one, where I eat little and rest more and feel better. But what is it that made this difference, was it the abundant resting or the metabolic switch and change in eating, or this infection shifting an abnormal immune response closer towards normal?

PS: or a change in the microbiome activity?

 

That's the eternal question for folks with ME isn't it?

And for a lot of other folks with chronic illness, too, but with ME it's multiplied by 1000000000000000000000000...

 

Yes, and how much could we learn from these observations in n=1 studies? I'm not the only person who has reported feeling better than before after a mild infection.

Once I also had really high zonulin when by sheer luck it was measured during a flare of GI symptoms.

If we had a research team ready to take samples while a ME/CFS patient develops an infection we might learn something important.

 

I could give all three answers on the poll. Its variable with no clear pattern, and I would need to discuss what I am eating, and when, as much as eating itself.

 

I agree! I was commiserating with you and all the ME patients who have more questions than answers (largely because so few research studies have been done).

I've been sick so long, and things are so hard to figure out, that your comment "what is it that made the difference" resonated with me. It hit me even harder than usual because just the other night I had a really bad night and I have absolutely no idea what caused it!

Anyway, I'm sorry for this digression, and I hope my earlier post did not come across the wrong way.

 

No, it was spot on.

 

No you are not, this is an uncommon but not super rare response. My guess is that every infection has the potential for a reset, most will do nothing or make it worse, but sometimes a new infection improves the situation. Without understanding the core mechanisms I don't think we can really understand this.

 

I had it twice in recent years, both involved the gut and nausea and diarrhea.

 

I had 2 days in February where I lost my appetite too, during the time I had my painful swollen toe. So I suspect coronavirus in my case.

 

I get this with 'accumulation PEM'. The last time I experienced it was a couple of years ago when my Mother was in hospital and I wasn't able to do my resting routine properly due to having to visit Mum.

I get severe weakness, nausea - as if poisoned, diarrhea for about a day as well. Eating is difficult and I can only sip and nibble.

For me it feels like the ME is controlling and needing fasting to recover. I usually pick up again in about 3 or 4 days with the help of sips on lemonade.

Apart from the severer years of my ME I also dread these severe bouts because I feel very ill, extremely weak and it is always a huge relief when it passes.

 

Same here. I haven't voted because of this.

 

It's something I don't get regularly as well which makes me wonder whether you may have been overdoing more than usual over a period of time, which will bring on the accumulation PEM if you haven't been resting enough.

 

Eating always perks me up a bit. But then it did before I had ME - I'm one of those people who gets incredibly grumpy and irritable and feel faint and ill when I'm hungry. Always have been. So I learnt never to leave the house without breakfast, even if it makes me late, because I don't want to risk killing a student. Once I've eaten, I'm a model of patience and diplomacy. Now when I get up in the morning and am having a bad ME start to the day, the first spoonful of breakfast makes me feel considerably better, and I can feel all that porridgy goodness flowing through my body.

 

I voted for 'no effect' since eating in general doesn't affect my symptoms. That's ignoring certain (all too many) foods that I have a bad reaction to. I've yet to find a food that gives me a beneficial reaction.

 

I frequently find eating very tiring. And my husband finds it annoying that I eat so slowly. I used to eat at a fairly normal pace a decade or two ago.

I know the cause of my problem. I find it hard to chew because I produce very little saliva now. It takes ages to break down food into a consistency suitable for swallowing. If you were to give me a bowl of jelly and ice cream or something else that requires no chewing I would eat at the same speed that everyone else does. But swallowing meat, veg, and pastry is really hard work.

 

Eating something if I feel very shaky helps me to feel better.
Eating more than I should makes me feel worse.
Eating something with a high sugar content makes me feel worse.
Not eating definitely makes me feel worse....
Being sensible, eating healthily and not too much seems to be the answer!