Question re: energy metabolism problems

[guvaika]

Hello to everyone,

I'm new here and not good at knowing where to start/how to post. I don't have an official CFS diagnosis, but whatever this illness is, I've had it for 2 years. I'm currently taking resources from this site to my primary doctor.

I would like help understanding the metabolic piece of ME/CFS. If I'm understanding right, there's some kind of misfunction at the cellular level when it comes to the energy transfer process? Yes?

I found phoenixrising because a search I did turned up a post from 2012 on hypoglycemic-like symptoms. The best hypothesis I have on one piece of my own condition is that my glycogen synthesis process is damaged. If I don't eat every 2-3 hours, I "crash" (increase in temp, sweating, heart racing/palpitations, hands/body trembling, dizziness, feeling faint, and finally severe brain fog). I've had such a crash in my doc's office and she tested blood serum glucose right in the middle of the crash and it was normal. So she's stumped and asking me what to do next.

Is this something people with ME/CFS experience?

That's been going on for 2 years now. No clue how to address it other than eat every couple hours... But it gets complicated by the general fatigue, and the horrible flu-like fatigue that I always get with exertion of any kind - worse if it's both physical and emotional. And pain, and..., and... Activity level is between 4 and 3. Anyway, I should probably introduce myself properly in the other section, but seems like too much work, and I really want to understand the metabolism bit.

Thanks so much!

 

[Bansaw]

Hi, welcome. Those flu-like symptoms you are experiencing is called PEM (post exertional malaise). I had those bad so I had to stop aerobic exercise altogether for the moment. Now I do short resistance type exercise (weights) and that helps a lot.
My doc says that, at least for me, the PEM is caused by excess ammonia being generated after exercise.
My doc has got me on an ammonia scavanger lately and is addressing my methylation issues.
Anyway, I am sure you'll find lots of helpful people responding to you...

 

[sarah darwins]

Hi guvailka, welcome

There is an Introduce Yourself section, where I'm sure you'll get plenty of people saying hello.

http://forums.phoenixrising.me/index.php?forums/introduce-yourself.35/

 

[guvaika]

Hi, thanks. Should I have posted there instead? Or maybe this question should be in a different category? I really want to learn about/understand the metabolic piece of CFS... I read somewhere that there is an inability in the metabolic process for the cells to produce (or something - wish I could remember terms better) energy. Can someone point me to more info on this?

 

[Gingergrrl]

If I don't eat every 2-3 hours, I "crash" (increase in temp, sweating, heart racing/palpitations, hands/body trembling, dizziness, feeling faint, and finally severe brain fog).

I know this will not be of any help but I am the polar opposite and the only thing that truly helps me to breathe and feel better is not eating. This is probably due to the MCAS component in my case but when I do not eat, my BP improves and literally every aspect of my body works better. I compare myself to others in the hope that it will help me to solve what is wrong with me (and that this in turn can help someone else.) I am mostly eating one meal per day around 3 PM right now and it's about all I can tolerate.

I wonder if any of the ME/CFS docs know why there is so much variation?

 

[merylg]

Fasting insulin level might be more informative. I had it done as part of a 2 hr Glucose Tolerance Test with Insulin levels. Showed I have insulin resistance. I also had fasting Leptin level tested (not subsidised as seems like still in the research stage). My level was elevated & supposedly reflects leptin resistance.

 

[sarah darwins]

Hi, thanks. Should I have posted there instead? Or maybe this question should be in a different category? I really want to learn about/understand the metabolic piece of CFS... I read somewhere that there is an inability in the metabolic process for the cells to produce (or something - wish I could remember terms better) energy. Can someone point me to more info on this?

@guvaika - You're fine here. But if you think you might make more use of PR then just generally introducing yourself and telling a little of your story is a good idea, then ask very specific questions in other posts to keep things clear.

I suspect what you're thinking of is ATP (adenosine triphosphate), often called the currency of energy.

There's a pretty good summary on the website of UK ME doc Sarah Myhill: http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

If you type "mitochondria" into the search box at the Forum home page and select "titles only" you'll get a lot of relevant threads here.

 

[guvaika]

Thanks to everyone who posted. My energy is too low for individual replies.

@sarah darwins - Thanks for the article link. That makes so much sense!

I realize I simply need to "research" here... Read things that have already been posted. But there's so much and it's overwhelming and tough to know where to start.

 

[*GG*]

Thanks to everyone who posted. My energy is too low for individual replies.

@sarah darwins - Thanks for the article link. That makes so much sense!

I realize I simply need to "research" here... Read things that have already been posted. But there's so much and it's overwhelming and tough to know where to start.

Welcome to the Forum, I would say just start some place, perhaps what is easiest?

GG

 

[Hope78]

I found dr Lams explanation about hypogl. to be very helpful. He explanes why people with low adrenal function suffer from symptoms like you're describing even within the normal range of glycosis. I have the very same problem. Just Google dr Lam hypogl.

 

[guvaika]

@Hope78

Danke! Thank you so much! Greetings to you in Germany - from New York.