Good energy levels. Problem is dysautonomia and PEM. Anyone else?

ChookityPop

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My energy levels are mostly pretty good. At least when my circadian rhythm is balanced and I pace myself. Intermittent fasting and eating the right foods helps.

I am bed bound almost all day staring at my TV with my mac hooked up on it. Main problems is blood pooling/dysautonomia and muscle PEM. Blood pooling is dysautonomia right? And I get muscle PEM vey easy. My muscles starts to burn if I type to much for example.

My problem is blood pooling when I stand up and walk and my muscles burns out very quickly. I can drive my car, though sometimes its harder than others. If I look down too long on my phone in the wrong posision I burn out my neck muscles and it can take days for the muscles to recover, this strainy lactic acid feeling. This can happen from reaching for a glass of water in the wrong position too. Even typing on my phone or computer.

I played with a cat that was in this cat tree with my arms elevated for like 1-2 minutes. Not constant but in intervals and suddenly my arms were BURNT out. This hurts and I got super tired and fell asleep for 2 hours. My body just shut down, this doesnt happen often but a few maybe 1 time every other month

I cant stand right up and down for long as its the worst for my legs and calfs. Same with walking though its slightly better even though I cant walk for long distances. I can go into the supermarket and buy like 1kg worth of foods and hurry ut in my car.

This may be tbi, but something I find interesting is I can have sex almost like I did pre getting sick. In terms of intensity and duration. From maybe 15-30 plus minutes etc. As long as I dont burn my muscles my body recovers from the sex very good.
Its like I dont use the muscles in those ways that makes me get muscle PEM. This isnt the case all the time ofc. I have to stop occasionally. And sometimes I actually get tired quicker, but it comes down to the position. Like I cant stand in a push up position forever obviously.

And lastly I want to point out that I can feel how great sex is for my health. Its the only activity I can do like semi normal and its amazing to get blood circulation, endorphins, etc. Anyone else ?

I can add that TRT has been great for me. Not huge benefits but I notice I recover faster.

This isnt the same for all ME patients right? Some are very fatigued and sleep a lot? Zero energy?

My issues seems to be autonomic dysfunction and muscle PEM. Is muscle PEM a result of this? Or something else?

Would appreciate some thoughts or theories on this.
 
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nerd

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Thanks to the keto diet, I have also managed to improve my baseline energy levels. It lasts half a day and then the typical short-term PEM hits. This means fast orthostatic intolerance from thereon, tachycardia, air hunger, brain fog. But as long as I pace at this moment, I mostly recover until the next day. But this might also be due to Ivermectin which blocks immunological inflammation that no long-term PEM with a real feeling of illness occurs anymore. Overall, keto diet improved muscle weakness most dominantly.

Regarding sex, you might be lucky on this one. I don't only mean the opportunity to have it as an ME patient but also how challenging this is from a stamina perspective. Maybe it's just too much adrenaline or something hyper-metabolically. I know this sounds stupid, but have you ever measured what heart rate you hit? It might be higher than what you perceive.

Or maybe it's because you do take testosterone, which is necessary for it and depletes during the process.

Is muscle PEM a result of this?
Autonomic dysfunction affects it, but it's also the energy metabolism.

I intend to try naltrexone and sapropterin against the neurological side of PEM. If any physician would finally prescribe it.

The energy metabolism can be influenced by supplements such as Leucine, BHB, potentially Amber Acid, Thiamine. And from a neuromuscular perspective, Huperzine.

When you feel numb, it might also be GABA overactivation, so that GABA antagonists and negative allosteric modulators help, such as Gingko, and Kudzu. When allergic reactions occur, methylation boosters and methyl group donors can help, besides antihistamines of course, but without antihistamines, you would at least notice easily when you're running out of methyl groups.
 

Judee

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Have you tried things like Huperzine A or compression stockings?

The first one seems to help me to stand longer though I don't take it all the time because it constricts my pupils too much and can make the times I am experiencing double vision last longer.

Plus the reviews for people using it for cognitive function say that they develop tolerance though I don't know if that would apply to people using it for OI issues.

The compression stockings work to bring my bp up and I can also stand longer however my heart (and veins or arteries) start to hurt badly when wearing them and when I have to take them off I get a horrible rebound effect where my bp drops worse than before. So, I have found I cannot use them.

Anyway, I'm glad you are experiencing some energy. Don't try too much or you might undo your progress.

Also the Ginkgo that @nerd mentions does seem to help me with brain inflammation and also a bit with motivation sometimes. I only take a pinch though.

I haven't bought or tried the Kudzu yet. I haven't noticed if the Ginkgo helps me stand longer though. I'll have to try to remember to think about that the next time I take it.
 

nerd

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I haven't bought or tried the Kudzu yet. I haven't noticed if the Ginkgo helps me stand longer though. I'll have to try to remember to think about that the next time I take it.
Theoretically, the wear-off effect of these two should be different because antagonists affect the available agonist concentrations and allosteric modulators don't. When GABA levels are already high due to the CAC blockage, it's possible that the wear-off of Gingko will cause more sedative effect than Kudzu. I think the half-time of both is about 4.5 hours, so Kudzu might be more useful in the morning, while Gingko might be more useful in the afternoon. But this is just speculation.
 

Wishful

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Its like I dont use the muscles in those ways that makes me get muscle PEM.
My physically-induced PEM depended on how my muscles were used. Movements that I was accustomed to didn't trigger PEM, even after a multi-hr hike or bike ride. Straining those leg muscles past the usual movement limits, such as climbing a ladder, would trigger PEM (24 hrs later) from one 10' climb. Likewise, I could shovel soil for hours using the normal movements, but a different type of movement (stabbing the shovel forwards) would trigger PEM (24 hrs later) from a few minutes of that. For me, it wasn't the intensity or overall amount of ATP use, it seemed to be the amount of muscle cell damage, which would then trigger immune activation to clean up the debris. At least that's my hypothesis.

I wonder whether the mental state during muscle usage could affect whether it triggers PEM. Maybe one mental state has the muscles fighting each other (tearing cells) while another avoids that. I don't think my ladder climbing was a different mental state than bike riding, so that's counterevidence, but maybe it's different for other people.
 

xebex

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Yes I’m similar, my energy levels are ok but my muscle tolerance to upright activity is very low, I am sofa bound and can just about manage to make meals, the evening meal is usually a struggle. However aslong as I pace well I just lie about in the sofa feeling “normal” it’s very frustrating because I have nothing stopping me from doing the thing I want to do untill it’s too late. I spend my life living in frustration. I also didn’t use to crash from sex but sadly that’s not the case anymore.
 

Wishful

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@ChookityPop , how are you with other physical exertion while being horizontal? Arm exercises while laying down, or such things. I don't know how the body/brain connection handles blood pressure signals from different parts of the body, but I can imagine a problem where signals from the lower body are processed abnormally, reducing flow to other areas, causing muscle weakness.

My ME seems to be entirely neurological, so it makes me look at any ME symptom from a neurological dysfunction perspective.
 

ChookityPop

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My physically-induced PEM depended on how my muscles were used. Movements that I was accustomed to didn't trigger PEM, even after a multi-hr hike or bike ride. Straining those leg muscles past the usual movement limits, such as climbing a ladder, would trigger PEM (24 hrs later) from one 10' climb. Likewise, I could shovel soil for hours using the normal movements, but a different type of movement (stabbing the shovel forwards) would trigger PEM (24 hrs later) from a few minutes of that. For me, it wasn't the intensity or overall amount of ATP use, it seemed to be the amount of muscle cell damage, which would then trigger immune activation to clean up the debris. At least that's my hypothesis.

I wonder whether the mental state during muscle usage could affect whether it triggers PEM. Maybe one mental state has the muscles fighting each other (tearing cells) while another avoids that. I don't think my ladder climbing was a different mental state than bike riding, so that's counterevidence, but maybe it's different for other people.
Thats very interesting, that sounds a bit like me. Though Im quite hard effected by what Im very positive is dysautonomia. I have issues walking in stairs, my muscles can potentially be super strained for long periods of time. I can walk like small stairs if I dont do it too often.
My GF thinks its fascinating how limited I am in daily life but what I am capable to do in bed. 100% becuase of how the muscles are used. I can ofc strain my muscles in bed if im not paying attention and use it the wrong way.
I have also thought about the mental state stuff in relation to PEM etc. I will always try to be open minded and like it could be. But I have blood pooling in my legs and other issues that my mind cant control. Im positive there is an underlying issue. I want to do standing up ultrasound which they ofc dont do in my country...I talked to a person that had done this and their blood vessels in the legs was like soggy gum. And they only had like 30% blood pumping through the heart because all the blood was in the legs etc.
 

ChookityPop

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Thanks to the keto diet, I have also managed to improve my baseline energy levels. It lasts half a day and then the typical short-term PEM hits. This means fast orthostatic intolerance from thereon, tachycardia, air hunger, brain fog. But as long as I pace at this moment, I mostly recover until the next day. But this might also be due to Ivermectin which blocks immunological inflammation that no long-term PEM with a real feeling of illness occurs anymore. Overall, keto diet improved muscle weakness most dominantly.

Regarding sex, you might be lucky on this one. I don't only mean the opportunity to have it as an ME patient but also how challenging this is from a stamina perspective. Maybe it's just too much adrenaline or something hyper-metabolically. I know this sounds stupid, but have you ever measured what heart rate you hit? It might be higher than what you perceive.

Or maybe it's because you do take testosterone, which is necessary for it and depletes during the process.



Autonomic dysfunction affects it, but it's also the energy metabolism.

I intend to try naltrexone and sapropterin against the neurological side of PEM. If any physician would finally prescribe it.

The energy metabolism can be influenced by supplements such as Leucine, BHB, potentially Amber Acid, Thiamine. And from a neuromuscular perspective, Huperzine.

When you feel numb, it might also be GABA overactivation, so that GABA antagonists and negative allosteric modulators help, such as Gingko, and Kudzu. When allergic reactions occur, methylation boosters and methyl group donors can help, besides antihistamines of course, but without antihistamines, you would at least notice easily when you're running out of methyl groups.
Thats awesome regards the keto diet. I too eat a keto/carnivore diet and it helps my energy levels for sure. I have some carbs here and there to keep up my glycogen stores.WHen I got sick back in 2014 I got super brainfog after eating carbs, but now I can eat carbs without it giving me brainfog. Ive read about bloodsugar-insulin lately. There is lots of hype around insulin resistance in health circles lately. Especially in the keto space. I may think my insulin sensitivity was out of wack back when I got sick becuase of how extremely shitty and evolutionary inconsistent I ate. People like Mark Sisson promotes metabolic flexability now. To make our bodies able to efficiently burn fat and carbs. Before getting sick I was super carb addicted and I guess my body didnt know how to burn fat efficient.

Have you tried adding some carbs? I eat like 50-100g of raw honey after listening to Dr Paul Saladino. It has quite good glycemic index or insulin index if I remember correctly. I want to test my fasting insulin too. I can get a little dip in my energy levels if I go too long zero carb. Very intersting Keto helped you with muscle weakness the most, thats amazing!

I will measure heart rate next time I have sex. So you say it could potentially be higher than I think? you may be right. interesting, I love measuring stuff.

The sex hasnt changed after getting on TRT actually. I recover faster but I actually notice I get some mild ED issues if I have taken too much or my estrogen is out of whack?

I had naltrexone but didnt try it, I may in the future.
"The energy metabolism can be influenced by supplements such as Leucine, BHB, potentially Amber Acid, Thiamine. And from a neuromuscular perspective, Huperzine."

I use mestinon when my stomach muscles get super burnt out. It seems to help, I use it when I need it. 10mg.

Interesting what you say about GABA. Its very rare I feel numb if ever? I may have it on rare occasions.
 

ChookityPop

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[/QUOTE]
Have you tried things like Huperzine A or compression stockings?



Plus the reviews for people using it for cognitive function say that they develop tolerance though I don't know if that would apply to people using it for OI issues.

The compression stockings work to bring my bp up and I can also stand longer however my heart (and veins or arteries) start to hurt badly when wearing them and when I have to take them off I get a horrible rebound effect where my bp drops worse than before. So, I have found I cannot use them.

Anyway, I'm glad you are experiencing some energy. Don't try too much or you might undo your progress.

Also the Ginkgo that @nerd mentions does seem to help me with brain inflammation and also a bit with motivation sometimes. I only take a pinch though.

I haven't bought or tried the Kudzu yet. I haven't noticed if the Ginkgo helps me stand longer though. I'll have to try to remember to think about that the next time I take it.
I use compression all over my body everyday. I do benefit from it! Not huge, but it gives me better quality of life and I can more easier.

I am okey cognitively actually. I have been a lot worse. But I feel it getting worse if I overdo mental tasks or discuss heavily with people.

I think keeping my blood glucose and insulin stable is important. But it is most likely brain inflammation that you guys talk about that is making me/us brainfogged.

I will look into gingko etc. Thanks for sharing!

Do you have POTS? I dont have POTS but I have def some form of dysautonomia. But I have had 2-3 days here and there where I have been so dizzy I cant walk.
 

Judee

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Do you have POTS? I dont have POTS
I have not been tested. Standing in one spot for too long makes me feel antsy like I might pass out but I have only fainted once in my lifetime and that's when I got up too fast from laying down from a nap when the phone rang and I went to answer it.

My heart does race but not as badly as many others I have heard about.

One time, we tried the poor man's TTT at home and I did start to feel like I was going to black out at one point, but then I always doubt myself and wonder if I was just being melodramatic.
 
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One time, we tried the poor man's TTT at home and I did start to feel like I was going to black out at one point, but then I always doubt myself and wonder if I was just being melodramatic.
I sort of gave myself a short cut version of the short cut TTT at home. I took a rare shower, mostly standing with some leaning and it was typical and overwhelming. Collapsed on the bed, my heart rate seemed high and I was in there for about 10 minutes. So that generated about 30 points higher heart rate and it was going over 100 BPM

To actually stand for 10 minutes and NEVER lean against the wall- sounds major!