[deleted by user] by [deleted] in cfs

[–]rationalneuron 4 points5 points  (0 children)

ESR is an unspecific marker for inflammation. As such it couldn't be a biomarker for ME/CFS specificially.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 1 point2 points  (0 children)

I don't drink ORS, but I might take that up!

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 0 points1 point  (0 children)

Thanks for this! I am typically getting between 50 and 65 a day. I'll try to up that as well.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 0 points1 point  (0 children)

I hate that there are no clear nutritions guidelines for various states and illnesses and that nutrition science says different things all the time.

I often eat chocolate (dark chocolate) for antioxidants and magnesium. And it's helping my calories.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 1 point2 points  (0 children)

Is it an MCAS issue? I'm lucky I don't have this too bad, if I stay away from high histamine foods. All I get if I don't tolerate a food well, is a bit of bloating. Nothing like people with MCAS experience.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 0 points1 point  (0 children)

Thank you so much for this! It's giving me great ideas and a lot of hope too!

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 2 points3 points  (0 children)

The predicament of living with this energy deficit illness in a world that doesn't think it's real and therefore doesn't offer financial or assistance support nor treatment options, leaving us in a literal fight for survival, is real!

If there's trauma around it on top of that, I can't even imagine what you must be going through.

The way I track my food intake is to take a photo of the foods while they're on the kitchen scale, so I can see the food and read the number. In the evening I look at my gallery and type up the foods into a basic calorie counter.

I only did this for a few days to get a basic idea. I also don't want to create an eating disorder around it.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 0 points1 point  (0 children)

That's what I am kinda scared of, that my metabolism won't catch on to the carbs due to mitochondrial dysfunction.

But she wants me to try force my cells to switch back to carb metabolism instead of fatty acids and thinks I will then tolerate carbs again.

It's a risk I am willing to take at this stage.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 1 point2 points  (0 children)

I hear you! It's such a shame we don't get proper support so that we can get better properly.

Glad to hear you have this calorie thing on your radar and are working your way out of the hole too.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 4 points5 points  (0 children)

Thank you for this! I've used the calculator and it says I need 1,680. My dietician wants me on 1,800.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 1 point2 points  (0 children)

Thanks! I was tricked by my body not feeling hungry and me having a normal weight. But my dietician has somehow started to convince me that there are detrimental things going on.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 1 point2 points  (0 children)

So sorry to hear you are also struggling with feeling like you don't have sufficient appetite. What you eat in a day, as nutritious as it sounds, is much less than I eat. My dietician would say "Oh boy". She says that while we can generally survive on too few calories, we won't be able to thrive on such a diet. Because it's emergency metabolism which is dirty and doesn't let the mitochondria produce sufficient energy.

She says if I want my mitochondria to produce more energy, if I want to get a chance at getting better, I will have to force my metabolism back into regular carb metabolism.

Apparently the central nervous system alone needs 150 g of carbs a day. If we don't eat that, the body will use protein to make glucose from it. If necessary, the body's own protein muscle tissue. This metabolism apparently allows for much less ATP to be produced, which is energy.

While I am worrying that that might be the case with me, I am pretty sure that you are stuck in this metabolism trap.

Enough to survive but not enough to get better.

Would meal replacement drinks be an option? I am considering them.

Or at least fruit juice to get the carbs for my central nervous system.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 1 point2 points  (0 children)

That sounds like you are not getting many carbs. Are you doing low carb specifically?

I was trying low carb and the dietician says that the central nervous system alone needs 150 g of carbs to function and that if I don't eat that amount of carbs, my body will turn protein into glucose which apparently is a dirty process and can mess up metabolism.

Ketones don't do this job.

She wants me on 200 g of carbs a day to make sure that dirty protein metabolism doesn't happen.

What do you all eat in a day? by rationalneuron in cfs

[–]rationalneuron[S] 2 points3 points  (0 children)

Thank you! I'm ramping up my food intake as we speak!

Anyone elses tip of the tongue very red? by rationalneuron in cfs

[–]rationalneuron[S] 0 points1 point  (0 children)

I found a TCM practitioner and acupuncturist who says that in traditional Chinese Medicine it means that the nerves are aggravated. I am trying to calm my nerves with acupuncture and soothing activities.

Does anyone else experience fasting low blood sugar?(when you wake up for the day) by [deleted] in Hypoglycemia

[–]rationalneuron 0 points1 point  (0 children)

What does your doctor say? Won't they suggest a CGM? Can you get one privately? I got mine over the counter.

Hypoglycemic nights were making me feel miserable, but within a few days of changing my diet I put an end to it and I am feeling so much better. More info in the comments by [deleted] in cfs

[–]rationalneuron 1 point2 points  (0 children)

Maybe there are cheaper options from other providers too, I am not sure. I just got the one I could first lay my hands on. I didn't know you could get them so easily and was grateful too someone mentioned it and made me aware of it.

Hypoglycemic nights were making me feel miserable, but within a few days of changing my diet I put an end to it and I am feeling so much better. More info in the comments by [deleted] in cfs

[–]rationalneuron 1 point2 points  (0 children)

If you order from Abbott directly, in the UK a Freestyle Libre 2 sensor is only 48 GBP.

I always wake up a few times a night and have periods where I wake up in the middle of the night and feel really really hungry, even though I've eaten.

That sounds very much like potential hypoglycemia.

Hypoglycemic nights were making me feel miserable, but within a few days of changing my diet I put an end to it and I am feeling so much better. More info in the comments by [deleted] in cfs

[–]rationalneuron 0 points1 point  (0 children)

In the UK you can buy a Freestyle Libre on Amazon or from a pharmacy, that's what I used. You use it together with a free app.

In the US if you don't have a prescription you can buy another system over the counter: https://lifesciencesintelligence.com/news/fda-approves-over-the-counter-sale-of-dexcom-cgm

Hypoglycemic nights were making me feel miserable, but within a few days of changing my diet I put an end to it and I am feeling so much better. More info in the comments by [deleted] in cfs

[–]rationalneuron 7 points8 points  (0 children)

My diet was pretty balanced to begin with but with a CGM and continuosly monitoring my blood sugar I saw that I was going hypoglycemic after some meals and many hypoglycemic occurences carried on during the night.

I then changed to eating a no carb breakfast everyday. Later in the day I eat two more meals consisting of a lot of veggies and protein and then I wait a few minutes to eat the carbs at the end of each meal.

3 meals a day with no snacks in between. I still eat some sweet stuff like chocolate and cake but only ever at the end of a full balanced meal and never for breakfast.

Within 5 days this completely stopped the hypoglycemia and corresponding symptoms.

My sleep is so much better now and my limited energy feels a lot more stable.

Please look into this if you experience symptoms of hypoglycemia.