Crash SO hard after using my muscles?? What is that?

[grapes]

Four years ago, I had my first horrible crash after lifting heavy rocks around my garden perimeter (they were surrounded by old mud), then replacing them one by one. I crashed HORRIBLY with sleepiness and miserable physical fatigue, and the latter lasted a full week.

Since then, I've done that at least twice a year, always finding out the hard way. The most recent one was 3 days ago as I write this. I was lifting 20 small but heavy boxes from one part of the room to the other. I had plenty of energy to do that. And once again, I crashed horribly within the next two hours. Sleepy, and my body was horribly fatigued. And it felt like my body was inflamed.

WHAT is this? I have greatly improved my mito issues as revealed on an OAT test. So I can't blame my mito on this anymore. So I wonder if I'm depleted in something after I was crazy ill over five years ago after mold exposure. Creatine?? That's needed by the muscle ATP.

I have no issue with walking, doing housework, etc.. None, But if I use my muscles in a challenging way, I crash badly.

Will love any ideas.

 

[grapes]

Exploring. I read this:

Muscle cells have several different ways to make energy. They are:

1. using creatine phospate
2. using glycogen
3. aerobic respiration

For #1, I now understand that creatine is an amino acid and is made in the pancreas, kidneys and liver. It's broken down to make more ATP quickly. What if, for some reason, those organs aren't making enough creatine after eing so stressed by my illness?

And here's a clue that my creatine could be low: After I was ill five years ago, I was starting to have symptoms of a poorly functioning gallbladder. I'm forced to take bile with every meal. And here's a research article that states "Creatine increases gallbladder smooth muscle contractility". https://www.gastrojournal.org/article/S0016-5085(03)81312-4/abstract So WHAT IF i'm not getting enough bile from my gallbladder because my creatine is low and causing problems with the gallbladder contracting??

 

[Crux]

Are you getting enough choline ? If choline is low, then creatine phosphokinase can be elevated. This elevation can cause muscle necrosis.

Low choline can also cause liver damage as well as muscle damage.

 

[grapes]

From September 2018 until the end of the year, I was on ATP Fuel by Researched Nutritionals. That contains 2000 mg NT Factor Lipids, which is a blend of phospholipids and glycolipids, and thus has choline. I restarted it in late February. But still had a major crash a few days ago, and which I still suffer from. It takes me a full week to recover from a crash like that.

My subjective experience is that I "run out of something". That's what these crashes feel like! I had PLENTY of energy to lift those boxes from one side of the room to the other....but I start a slow and severe crash when I'm done. It was very noticeable two hours later...excessively sleepy, physically exhausted to the bone. And I felt "inflamed" that day and somewhat the next. I did labs the next morning, and sure enough, there was evidence of inflammation.

I feel physically exhausted from the time I wake up until i go to sleep...from these crashes. A week of it. Then I'll feel great, can do walking for exercise, can do some housework, etc. These crashes only seem to happen after I use my muscles lifting heavy things...or can occur if I do a few hours of constant busy work, as happened to me last year after helping a sick friend clean up her house. A major crash then, too.

I do notice that I have much more lactic acid when climbing strairs, but that's been a lifetime of it due to my Mitral Valve Prolapse.

 

[Crux]

I remember at one time you had rust colored stool - I did too.
I think it was from liver trouble.
Choline has darkened my stool to a more normal color.

I wonder if bile acids would help?

On my recent blood test, creatinine was a little low, which could also indicate liver damage as well as muscle.

I'm wondering if creatine might help us both. I think I read that it may clear lactic acid.
Nitric oxide also clears lactic acid.

 

[grapes]

Hi Crux. The bile that I take has done wonders in many areas, including improving all my mito results, which was a shock. But it makes sense, as they can now get the fatty acids that they weren't getting before I got on bile.

So I thought I was finally out of the woods with these crashes, thinking my greatly improved mito would mean I wouldn't crash again. Nope. This was just as hard a crash as the other ones have been, even while on bile and all the improvements that being on bile has done.

So as I kept thinking on it i.e. is it possible I'm missing something that gives me muscular energy? That illness I had lowered other nutrients, including another amino acid. And I know it stressed my liver and gallbladder...so perhaps it also did my pancreas. So I saw the mention of creatine for muscles and ATP. THEN I found information that low creatine negatively affects the gallbladder's ability to contract. Whoa!! I have never understood what was going on with my gallbladder...no pain, no stones that I know of. Just poor function.

I'm going to try being on creatine, and see what I notice. And I'm thinking I should get it tested asap for a baseline.

 

[grapes]

I remember at one time you had rust colored stool - I did too.
I think it was from liver trouble.
Choline has darkened my stool to a more normal color.

I wonder if bile acids would help?

On my recent blood test, creatinine was a little low, which could also indicate liver damage as well as muscle.

I'm wondering if creatine might help us both. I think I read that it may clear lactic acid.
Nitric oxide also clears lactic acid.

Forgot to add that my rust colored stools were in connection to detoxing high copper levels.

 

[Crux]

Let us know how the creatine works for you....

 

[BeADocToGoTo1]

Hi grapes,

Sorry to read about your struggles. Just in case this is not an avenue you have looked into yet, please check out this thread:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

 

[Hip]

I have no issue with walking, doing housework, etc.. None, But if I use my muscles in a challenging way, I crash badly.

Maybe your PEM is triggered more when you use your muscles for strength, rather than for endurance.

Not sure if you are male or female, but males vary considerably in the percentage of slow-twitch (endurance) and fast-twitch (for strength) muscle fibers they have. Females are closer to 50%/50%.

Possibly if you don't have much fast-twitch muscle fibers, then when you use your muscles for strength, it taxes them a lot.

 

[grapes]

Maybe your PEM is triggered more when you use your muscles for strength, rather than for endurance.

Not sure if you are male or female, but males vary considerably in the percentage of slow-twitch (endurance) and fast-twitch (for strength) muscle fibers they have. Females are closer to 50%/50%.

Possibly if you don't have much fast-twitch muscle fibers, then when you use your muscles for strength, it taxes them a lot.

PEM? I'm female. This all started after that illness and the detoxing of high heavy metals.

 

[Hip]

PEM? I'm female. This all started after that illness and the detoxing of high heavy metals.

Which illness are you referring to? Do you mean ME/CFS? PEM is a normal part of ME/CFS.

 

[grapes]

Which illness are you referring to? Do you mean ME/CFS? PEM is a normal part of ME/CFS.

I just realized you are referring to post-exertional malaise . Yes, in reply to your former question, I do see a correlation to muscle use. It first happened in 2016 after lifting heavy rocks. It happened almost a week ago after lifting heavy boxes. In between, it's happened when I'm using my entire body for busy work.

 

[grapes]

I want to add more to this for the search engine to catch.

I have done four OAT tests, 2015 (Organix), then 16, 18 and 19 (Great Plains)....and all showed that I don't break protein well...but didn't catch the significance at first. I was doing all these OATS because I had debilitating fatigue when I was detoxing heavy metals in 15 and 16--far worse than I saw anyone have from detoxing. Even when I wasn't detoxing, I would crash easily. And had two bouts of bad candida, then a new bout with aspergillus that was revealed in the 2018 OAT.

These OATS also said I was breaking down fats well.

FINALLY--found out in Fall 2018 that I had a gallbladder problem...specifically, I was producing practically NO BILE. I got on Bile in early December. And voila...my January 2019 OAT showed that just doing that had turned 21 results on the OAT around, which included some mito-related problems, fat-related problems!! I was shocked.

But something was still there--the protein issue. I still wasn't breaking it down well. i.e. I compared my 2019 OAT with my 2016 OAT--the latter was the year I was EXHAUSTED BEYOND BELIEF when detoxing high copper the second time, and when I had my first HORRID crash when not detoxing, simply from lifting heavy boxes. And here are two results which were similar on both, and stated to be related to Glutaric Acidosis:

1) High 3-Hydroxyglutaric 6.6 (<6.2) related to Glutaric Aciduria Type II, of which a symptom is not breaking down protein correctly.

2) High ethylmalonic 3.2 (.44-2.8) related to Glutaric Aciduria Type II Suggested supps: high dose B2, glycine, carnitine, CoQ10, low protein and fat. B2 is the most promising treatment, up to 400 mg. .

Also, the 2015 OAT (which was by Organix and which I did during my first high copper and lead detox) showed high Indican, also related to poor protein breakdown. But they blamed it on having excess bacteria.

So I did research this year on genes related to Glutaric Acid Type II. And the only homozygous snps were for the gene ETFB:

1) rs12985380--no impact on protein breakdown, says another string in this forum
2) rs3786629
3) rs11084071
4) rs3786625--NO impact on protein breakdown, says another string in this forum

Livewello says they are "associated with" the below, but not necessarily with the snp.

Glutaric Acidemia Type Ii
Glutaric Acidemia Iib
Glutaric Acidemia Iic
Glutaric Acidemia Iia
Lipid Storage Disease
Neutral Lipid Storage Disease
Systemic Primary Carnitine Deficiency Disease
Multiple Acyl-Coa Dehydrogenation Deficiency, Mild Type
Multiple Acyl-Coa Dehydrogenation Deficiency, Severe Neonatal Type

I had already been on high dose carnitine for a good two years. Didn't change a thing. I am now on B2, still on a lower dose of carnitine, and getting glycine from using protein powder.

So here's the deal: when you read about Glutaric Acidemia Type Ii, it says you can't "break down" protein well for your mitochondria to use. So I am currently theorizing something and trying it. If I can't "break down" protein well for my mito to use, what if I took already broken down protein in the form of protein powder. I read about it, and got a Hydrolyzed Whey Protein Isolate. It's non-GMO, 100% grass fed.

Now I first just used one scoop to equal 25g of protein. I did feel better for almost a week. But...after a day of activity in the house and feeling really good....then walking 1/2 mile, I crashed royally after that walk. Damn. Sooo sleepy and fatigued. Same the next day---awful deep fatigue. I'm on the third day as I'm writing this.

So, I got the following information and have numbered it all for better reading:

1) The RDA for protein is .36 to .8 gms per pound of your body weight. I weigh 130 lbs, so for me that would mean I need 46.8 gms to 104 gms.

2) One scoop of the above product (which I researched well) is 25gms of protein per scoop (out of 31.3gms total per scoop as a serving). So if I went by the 104 gms, I would need four scoops. i.e. far more than that one scoops I was on.

3) On the other side of the coin, fitness experts say we need 1-2 gms per pound of body weight. For me that would be 130 - 260 gms a day. That would mean 4 - 8 scoops a day! Because I don't break down protein well, I figured I'd follow the fitness expert recommendation.

So whatever the answer is, it appears I would need far more than one scoop a day! But here's more....

4) The maximum rate that whey protein can be absorbed is about 8-10 grams per hour. So....50 grams / 10 grams per hour = 5 hours

That implies that we might need to supplement protein in these drinks all day long.

5) But there's more: The conclusion of the article states that it's "evident that higher doses of whey protein are better absorbed if you take digestive enzymes at the same time. When you do this, you get higher amino acid levels in your blood, so that you have more available to your muscles and other tissues, which is pretty much the whole point of drinking whey – to make amino acids available to your body."

BINGO. Take higher amounts than one scoop (based on your body weight) and always take with digestive enzymes. All the above comes from this: https://www.precisionnutrition.com/rr-whey-too-much

So...in my crashed state, I started yesterday with four scoops plus digestive enzymes, to equal 100g of protein. It didn't make much of a difference, but I get the impression that once you have already crashed, it takes time.

Today, I am working towards five scoops to equal 125g of protein. So we'll see how this goes.

 

[BeADocToGoTo1]

Hi grapes,

I know a while ago you had checked out my thread on exocrine pancreatic insufficiency (EPI) but there was some confusion as a portion of text had been moderated out. Can you please check with your doctor whether your pancreas functionality has been tested for exocrine pancreatic insufficiency. This was a life saver in my case, and one that is often overlooked by doctors and sufferers. Since you have trouble breaking down and are malabsorbing fats and proteins this really should be looked at.

This is important - If your doctor states that he tested your pancreas by using the standard blood lipase and amylase levels he/she knows absolutely nothing about EPI. Those tests are utterly useless to see whether you are not producing enough pancreatic enzymes! They can temporarily point to pancreatitis when those enzymes spill into your bloodstream due to, for example, a duct blockage, but not if you are not producing enough.

The Aciduria illnesses are incredibly rare and of course should be ruled out, but are much less likely than not being able to break down food due to other reasons like EPI, SIBO, Candida overgrowth.

The inability to break down fat of course ties to the gallbladder as you need the salts to make a dent in digesting fats. However, you also need lipase, which is the pancreatic enzyme to further break down the fat into usable nutrients. Lipase is produced in the pancreas and brought into the duodenum along with bilesalts from the gallbladder.

Regarding protein intake, increasing intake without having sufficient protease, the pancreatic enzyme that breaks down protein, is not necessarily going to make things better. It might provide more partially broken down food particle fuel for bacteria, yeast and your immune system to view as invaders. Of course if your intake was too low to begin with it will certainly give you a boost. Be careful with the amounts. If you are a really active athlete 1 gram per pound of body weight is sufficient per day. Too much and your body will make glucose out of it though, potentially impacting insulin and blood sugar levels. When you are ill you might need a bit more than normal as well, due to the amino acids requirements. But, if you are not breaking down protein, you are not absorbing the amino acids, as they just end up in the toilet. There are amino acid supplements you can get which do not require enzymes as they are already broken down.

Please ask your doctor to test for your pancreatic elastase level in your stool, as well as a 24 hour fecal fat test. In the mean time you can try using some over the counter pancreatic enzymes (a.k.a. pancrelipase) to take with all your meals and snacks to see if you feel improvements. I use a prescription version called Creon to tightly control the amounts I take.

A less salient question, but an important one (don't have to answer of course, but just think about it)
How is the quality of your stool? Do you have to go more than 2-3x per day? Is it more yellow, more soft, extra smelly and particularly important, does it stick to the bowl? All of these are other important symptons of EPI.

Of course you can reach out with any questions.

 

[grapes]

Hi grapes,

I know a while ago you had checked out my thread on exocrine pancreatic insufficiency (EPI) but there was some confusion as a portion of text had been moderated out. Can you please check with your doctor whether your pancreas functionality has been tested for exocrine pancreatic insufficiency. This was a life saver in my case, and one that is often overlooked by doctors and sufferers. Since you have trouble breaking down and are malabsorbing fats and proteins this really should be looked at.

Thank you for this. Exactly why I wrote it, hoping to get more feedback. I will talk to the doc.

 

[BadBadBear]

Are you taking just enzymes or something like betaine HCL?

 

[grapes]

Are you taking just enzymes or something like betaine HCL?

Here's all that's going on since I wrote what I did four days ago about severe crashing, plus four OAT tests that consistently reveal that I'm not breaking down protein well. And yes, I do take betaine.

1) Amount: I decided to go with 50-75g of protein powder for now. Even 50 is double what I was taking when I had that bad crash 5 days ago--the third miserable one this year. I just wasn't convinced I should be doing the higher amounts of what the fitness experts said to do, as I'm not fit at all right now from all this mess.

2) Sipping: I also found out the hard way that I simply have to "sip" the protein powder drink all day. The body needs protein all day long since there are no stores, so sipping slowly would imitate that. Also, I was getting stomach bloat as I went up in amount. So hopefully sipping will stop that, besides help better.

3) Different protein powder: I have also ordered egg white protein powder, as I've read one is less likely to have the bloating on that one.

4) Pancreas: Since BeADocToGoTo1 told me about his Exocrine Pancreatic Insufficiency, and how getting on prescription pancreatic enzymes turned him around, it made me wonder. I have since read that high copper can damage the pancreas, just as a pancreas needs zinc to function well. Right before all this started, I had seriously high copper before I realized what was going on, and I'm sure the detox spread it around even more.

5) Pancreatic Enzymes: When BeADocToGoTo1 told me about his prescription enzymes, I did some research and found there are a few non-prescription products that also have the higher levels of the enzymes. One I decided upon was Pure Encapsulations Pancreatic Enzymes. They are arriving today as I write this, so my fingers are crossed. The caps are not enteric coated, so I have my own to put the contents into.

6) Two causes for all this and the treatment:

a) Testing clearly reveals that I have two homozygous mutations related to Glutaric Acidosis Type II, found via 23andme that can cause a failure to break down protein. Who knows how many others I may have, since 23andme doesn't show all of them. All the stress I went through with excess mold exposure, the lowering of nutrients, the excessively high copper...could have made these mutations far worse. The treatment would be what I'm learning to tweak: taking powdered protein since it's already broken down. I know I did feel better on 25g/one scoop and was able to do more activity...until I added one more activity in the late afternoon and crashed hard. Those crashes are very much like "something runs totally out" and takes me a week to recover. So I'm curious how it will be because of being on 50-75, and sipping all day.

b) No confirmation that my pancreas is sluggish, but reading what I did about what high copper can do to it makes it a possibility. Plus, my gallbladder got that way--I can't survive now without bile at every meal. So I'm very curious what I will notice when I start on the digestive enzymes in higher amounts. Yes, I had taken them before, but didn't seem to do much, as they were MUCH lower amounts. So if this is my pancreas, taking these would be the treatment.


And I'll add c)--it could be some of both. We'll see.

 

[Mary]

@grapes - I haven't read your whole thread here, but it sounds like PEM to me, and if you're able to find the cause, we'd all like to know! That's the $64,000 question - what causes PEM? It doesn't show up on lab tests, that we know of. I've remedied all the nutritional deficiencies I could find. And yes, if/when I have energy, if I use it all, I'm guaranteed to crash the next day, even though I had enough energy the day before. I don't think it's a matter of having enough energy. The problem seems to be how our bodies produce energy (anaerobically, very inefficiently) and what our bodies do in response to exertion. Exertion seems to produce an inflammatory response, I think - I'm a bit fuzzy here.

Anyways, your crashing sounds like a perfectly normal ME/CFS response to activity. To avoid crashing, I've found I have to limit myself to 3-1/2 to 4 hours of LIGHT activity a day - no way could I move rocks and avoid crashing.

 

[BeADocToGoTo1]

A healthy person will have trouble digesting all that protein. Protein powders can also be tricky due to the contents. You have to be so careful to check the ingredients, where it was sourced, and only go for the organic or grass fed if going the whey route, with as little ingredients as possible. I can go through a whole store full of them and maybe find only one that fits the bill. I also have an intestinal distress issue with e.g. pea protein, which many of them have. Many have added sugars, chemicals and unpronouncable ingredients. Perhaps try single ingredient versions first to see which your body can handle. Or try adding protein through easily (for you) digestable food, perhaps some organic air chilled free range chicken breast, happy eggs, grass fed/finished beef, hemp seeds.

But with all of them, you can try adding some enzymes to help break it down, just in case.