I get a different PEM

[eddyrms97]

So my PEM is a little different. Since Feb I've been moderate-severe state of my disease. Not officially diagnosed MECFS yet but I have OI, POTS, Dysautonomia and now PEM since Feb 2023 (although I noticed some slight post exertion malaise from moderate exercises as early last year)

So it's hard to describe my PEM because of how fast things are deteriorating but last year I was 6 days a week in the gym with little issues other than lightheadedness and tachycardia due to my POTS. In Feb this year started becoming ill after workout for hours depending on the intensity (Lightheadedness, difficult to describe malaise that would leave me on the floor wishing I had a bullet in my head because of the strong discomfort) this has progress to now happening upon ANY sort of exertion. Depending on the exertion I can feel the malaise from as little as an hour to as long as 8 to 9 hours. there is residual malaise that will last until the next day but it peaks and dissipates within 3-8 hrs. During this malaise I feel like I am being swallowed by a black hole in the most unpleasable way possible , I cannot move, I cannot think, and I have trouble breathing, It is hard for me to put this discomfort into words other than hell on earth. My peripheries become cold and purple. my body feels paralyzed although it's not.
Anyway, I just wanted to describe my PEM to see if you guys think it is the same PEM you guys get or different. I know a lot of you have it for much longer and I am thankful that it only lasts a few hours. I cannot imagine what you guys go through.
My baseline keeps dropping for no reason and I'll be lucky to make it to next year which I really hope i don't(Not suicidal do not report me)

A note: a couple of days ago my urine lactic acid came back at 325mmol. Having this repeated but this level of lactic acid after exertion would explain why my body literally shuts down after any exertion. Of course Drs are trying to find any excuse under the sun to say it's erroneous. My profession is literally knowing what could cause erroneous lab results and the only way to get a false elevated lactic acid in urine is to literally pour some in the sample.

 

[linusbert]

becoming ill after workout

i had this too, a slight sickness feeling like a flu is beginning to start after doing training (back, but it doesnt.
this is energy exhaustion. when you push your body to far this can happen.

urine lactic acid came back at 325mmo

increase in lactic acid can be a sign of diabetes or insulin resistence.

its also a sign that your aerobe energy metabolism isnt working optimally right now. what might help with lactic acid is thiamine and b-vitamins to improve metabolism again.

it can also be sign of some medication, for example metformin can raise lactic acid.


but i would do a morning check for
- glucose in blood , could be higher , more than 100mg/dl which indicates diabetes, BUT in the beginning of insulin resistence blood sugar still can be normal non-diabetic values.
- insulin or c-peptid in blood (important to know if you have too much insulin (=resistence) or too less (=pancreas producing too less) , but in both cases blood glucose can be too high in blood.
- A1C (long time blood sugar, but this isnt indicative for pre diabetes, you can have high insulin resistence and lactic acid for quite some time until blood glucose rises and then A1C raises as well)

and maybe do a OGTT (its a oral glucose tolerance test your doctor does), its drinking a lot of glucose and then draw blood to measure glucose and ideally also insulin in time intervals like 30min,60min, 90min, 120min, 180min after.

My baseline keeps dropping for no reason

it might seam that way, but it could be anything. my baseline dropped rapidly when i started to begin a healthy diet (removing sugar completely, only cooking my self with good fats and ingredients, high fat, low carb). but somehow i need a lot of simple carbs. high fat and low carb isnt working for me and makes me more sick, i need med-high cars and good proteins and low fats to feel the best.
i got from non-diabetic (A1C of 5) to extreme diabetic (A1C of almost 10) in less then 2 month, i only switched food to external delivery service. it got better A LOT after i switched to another food delivery service.

i really would check your environment and outside factors. did you change food? did the guy who makes your food change something?
did you move places? air pollution?
new (5g) cell tower?
tap water? drinking water?

 

[Judee]

Unfortunately with ME/CFS exercise can be so detrimental and cause a deterioration in our condition very quickly. There's something broken in our cells oxygen usage so we switch to anaerobic early in exertion and that's why there ends up being such a build up of lactic acid.

Feeling cold, flu like, and as though I'm being swallowed up is a good description of my initial warning signs that I've overdone it even if "overdone" is just that I sat up in a chair too much in a day.

I encourage you to read the aggressive rest threads. Where is sounds like you are possibly in your first year of illness you potentially have a chance to turn this around and maybe recover but if it happens it's gonna take you resting aggressively.

If you click on my avatar and then my name it will take you to my info page. Under "About" I put a bunch of threads on resting aggressively.

I'm sorry you're going through all this. It does sound like our kind of PEM, at least to me.

 

[Wishful]

It's certainly different from my PEM experiences. Physical exertion--of unaccustomed muscle strain--would cause my symptoms to rise a reliable 24 hrs later. However, my cognitive exertion had a shorter and less consistent delay, from maybe under an hour to several hours. So, PEM varies from person to person, and from types of exertion, and probably from other factors difficult to identify.

The lactic acid abnormalities seem worth following up on, perhaps with better doctors. I wouldn't just dismiss it as "part of ME".

 

[eddyrms97]

i had this too, a slight sickness feeling like a flu is beginning to start after doing training (back, but it doesnt.
this is energy exhaustion. when you push your body to far this can happen.


increase in lactic acid can be a sign of diabetes or insulin resistence.

its also a sign that your aerobe energy metabolism isnt working optimally right now. what might help with lactic acid is thiamine and b-vitamins to improve metabolism again.

it can also be sign of some medication, for example metformin can raise lactic acid.


but i would do a morning check for
- glucose in blood , could be higher , more than 100mg/dl which indicates diabetes, BUT in the beginning of insulin resistence blood sugar still can be normal non-diabetic values.
- insulin or c-peptid in blood (important to know if you have too much insulin (=resistence) or too less (=pancreas producing too less) , but in both cases blood glucose can be too high in blood.
- A1C (long time blood sugar, but this isnt indicative for pre diabetes, you can have high insulin resistence and lactic acid for quite some time until blood glucose rises and then A1C raises as well)

and maybe do a OGTT (its a oral glucose tolerance test your doctor does), its drinking a lot of glucose and then draw blood to measure glucose and ideally also insulin in time intervals like 30min,60min, 90min, 120min, 180min after.

it might seam that way, but it could be anything. my baseline dropped rapidly when i started to begin a healthy diet (removing sugar completely, only cooking my self with good fats and ingredients, high fat, low carb). but somehow i need a lot of simple carbs. high fat and low carb isnt working for me and makes me more sick, i need med-high cars and good proteins and low fats to feel the best.
i got from non-diabetic (A1C of 5) to extreme diabetic (A1C of almost 10) in less then 2 month, i only switched food to external delivery service. it got better A LOT after i switched to another food delivery service.

i really would check your environment and outside factors. did you change food? did the guy who makes your food change something?
did you move places? air pollution?
new (5g) cell tower?
tap water? drinking water?

Thank you for replying, I will look into getting a blood glucose monitor.
As for my diet I’m trying to do low carbs because I have trouble digesting bigger carby meals.
Nothing really changed other than the month prior my severe deterioration and experiencing PEM, I had a turbinate reduction surgery which led to me developing Empty Nose Syndrome.
I did move to a new house in August last year but from August to January where some of the most functional years of my life.
I’ll have to look into 5g tower as well.
Water is good.
Another thing is that a lot of stressful events just lined up and hit my life at the same time in Feb, I spent 2 weeks with some crazy flip floppy arrythmias that made me think my heart would stop at any second. But I feel like the physiological deterioration was already happening in the background and stress might’ve just propagated it.

 

[eddyrms97]

Unfortunately with ME/CFS exercise can be so detrimental and cause a deterioration in our condition very quickly. There's something broken in our cells oxygen usage so we switch to anaerobic early in exertion and that's why there ends up being such a build up of lactic acid.

Feeling cold, flu like, and as though I'm being swallowed up is a good description of my initial warning signs that I've overdone it even if "overdone" is just that I sat up in a chair too much in a day.

I encourage you to read the aggressive rest threads. Where is sounds like you are possibly in your first year of illness you potentially have a chance to turn this around and maybe recover but if it happens it's gonna take you resting aggressively.

If you click on my avatar and then my name it will take you to my info page. Under "About" I put a bunch of threads on resting aggressively.

I'm sorry you're going through all this. It does sound like our kind of PEM, at least to me.

i will look into these thank you. It will be hard since i have to continue working to provide for my parents as they’re too old to work and live with me. My dad has dementia and my mom is his carer. I’m very scared for them if I keep deteriorating.

 

[eddyrms97]

Yes

It's certainly different from my PEM experiences. Physical exertion--of unaccustomed muscle strain--would cause my symptoms to rise a reliable 24 hrs later. However, my cognitive exertion had a shorter and less consistent delay, from maybe under an hour to several hours. So, PEM varies from person to person, and from types of exertion, and probably from other factors difficult to identify.

The lactic acid abnormalities seem worth following up on, perhaps with better doctors. I wouldn't just dismiss it as "part of ME".

I’ve told the doctors but they don’t care. I swear they’ll put more importance on a way less acute metric like vitamin D levels

 

[Mary]

@eddyrms97- I think your PEM sounds different, and yet the same. It's an exacerbation of symptoms post-exertion. Your symptoms might feel a little different than some here but it seems to be the same mechanism to me. Our bodies do not handle exertion well! Fatigue is not the problem. When I first started crashing some 25 years ago (hard to believe it's been that long!) I would feel like I'd climbed a mountain, run a marathon and been hit by a truck, when in reality I might have done grocery shopping AND gone to the library in the same day, a big no-no. I had to ration my energy so carefully. The PEM would hit about 24 hours post-exertion and last 2- 3 days. I'm fortunate now that I don't feel nearly as bad when I crash, though it still immobilizes me. If I don't stop everything, it will get that much worse. And thanks to branched chain amino acids, I recover generally in a day now. I will be forever grateful to the BCAAs which have given me a little piece of my life back.

Anyways, I'd urge you to pay attention to @Judee 's recommendations for aggressive resting. I know - when I have some energy, the last thing I want to do is rest some more, but oh well!

 

[linusbert]

arrythmias that made me think my heart would stop at any second

a lot of people fear this... i believe this to be the easiest painless way to go.. you just pass out. also all problems solved.

I swear they’ll put more importance on a way less acute metric like vitamin D levels

actually thats probably the most important and reliable metric you can address. your body is turning into "hibernation" or bad metabolism when you are deficient in vitamin D.
you need this vitamin for everything. it has also major implications on energy metabolism. healing and regeneration. immune response. detoxification. methylation.
for this reason i believe this vitamin should be at least 40ng/ml for everyone and for chronic sick it can be 60-100ng/ml.

 

[eddyrms97]

a lot of people fear this... i believe this to be the easiest painless way to go.. you just pass out. also all problems solved.


actually thats probably the most important and reliable metric you can address. your body is turning into "hibernation" or bad metabolism when you are deficient in vitamin D.
you need this vitamin for everything. it has also major implications on energy metabolism. healing and regeneration. immune response. detoxification. methylation.
for this reason i believe this vitamin should be at least 40ng/ml for everyone and for chronic sick it can be 60-100ng/ml.

Right but vitamin D isn’t used check that status of critically ill patients. Lactic acid is. vitamin D level out of range isn’t as a alarming as a lactic acid level out of range, it means there’s something seriously wrong

 

[linusbert]

Right but vitamin D isn’t used check that status of critically ill patients. Lactic acid is. vitamin D level out of range isn’t as a alarming as a lactic acid level out of range, it means there’s something seriously wrong

vitamin D levels dont determine a immediate life threatening situation.
i am not talking about emergency room situations, i am talking about potential treatment to get a bit better in the mid and long term.

 

[BrightCandle]

Right but vitamin D isn’t used check that status of critically ill patients. Lactic acid is. vitamin D level out of range isn’t as a alarming as a lactic acid level out of range, it means there’s something seriously wrong

Ironically I was told to take Vitamin D for my slight deficiency but my lactose being 10x what it should be didn't even elicit a single word from my GP.

 

[Rufous McKinney]

During this malaise I feel like I am being swallowed by a black hole in the most unpleasable way possible , I cannot move, I cannot think, and I have trouble breathing, It is hard for me to put this discomfort into words other than hell on earth. My peripheries become cold and purple. my body feels paralyzed although it's not.

sounds awful...unfortunately I can relate to temporary short term events which make me feel entirely poisoned, and your description might apply.

I think our NECKS are contributing to The Worsening. I'd like to be wrong on that. So this working out in the gym thing, might over time cause issues with that. You might at least consider it in the list of considerations.

 

[eddyrms97]

sounds awful...unfortunately I can relate to temporary short term events which make me feel entirely poisoned, and your description might apply.

I think our NECKS are contributing to The Worsening. I'd like to be wrong on that. So this working out in the gym thing, might over time cause issues with that. You might at least consider it in the list of considerations.

Are you suggesting there may be some craniocervical instability going on? I've already been checked for that by an upper cervical chiro. Not sure how accurate his findings were but I didn't have it.

 

[eddyrms97]

Ironically I was told to take Vitamin D for my slight deficiency but my lactose being 10x what it should be didn't even elicit a single word from my GP.

Of course because acknowledging that would require curiosity, troubleshooting, and rationale. Unlike Vit D, you cannot supplement with lactic acid, you need to find what pathophysiology is leading to the excess. None of which 90% of today's doctors can do. In the last 8 years I have seen nearly 100 doctors, I question what is going through their brain other than literal flowcharts. No troubleshooting skills what so ever.

 

[Rufous McKinney]

Are you suggesting there may be some craniocervical instability going on

Its possible; not sure if chiropractors can detect those types of things accurately without MRIs.

 

[maple]

@eddyrms97 re high lactic acid. I have had this too. I was told to take 1tsp of sodium bicarbonate (baking soda NOT baking powder) before bed in a glass of water. It sounds ridiculously simple for a lot of reasons. It made a huge difference in reducing stiffness and malaise. The operational hypothesis was that the high lactic acid was coming from the gut because the numbers were so high that they couldn’t possibly be coming from physical exertion. That appeared to be correct.
You can also use something like Rolaids if you are travelling and want something convenient to take.

 

[Wishful]

I question what is going through their brain other than literal flowcharts.

That's why AI will probably be able to outperform human doctors for a majority of complaints (since the majority are simple problems). Pretty soon, doctors will have to compete for diagnostic positions. It seems reasonable that the future will involve an online AI diagnostician as a first step if you have a medical complaint, possibly using a home testing kit/scanner. If you've got something complicated, the AI will probably be superior at referring you to the best doctor for your needs.

 

[hapl808]

That's why AI will probably be able to outperform human doctors for a majority of complaints (since the majority are simple problems). Pretty soon, doctors will have to compete for diagnostic positions. It seems reasonable that the future will involve an online AI diagnostician as a first step if you have a medical complaint, possibly using a home testing kit/scanner. If you've got something complicated, the AI will probably be superior at referring you to the best doctor for your needs.

I think AI can already outperform the majority of human doctors, but human doctors will never admit that. It's going to be a gatekeeping battle - always comparing a hypothetical perfect human doctor against last generation's improperly used AI.

GPT4 or Symptoma are already better than 100% of the doctors I've seen in my lifetime (and I've had the privilege of seeing top doctors on both coasts of the USA).

 

[eddyrms97]

I think AI can already outperform the majority of human doctors, but human doctors will never admit that. It's going to be a gatekeeping battle - always comparing a hypothetical perfect human doctor against last generation's improperly used AI.

GPT4 or Symptoma are already better than 100% of the doctors I've seen in my lifetime (and I've had the privilege of seeing top doctors on both coasts of the USA).

You’re right, at least the AI can acknowledge there’s a physiological root to the symptoms. But these AI only give you general medical pictures as diagnoses . Me/CFS, Dysautonomia, POTS etc.. none of these are root causes.