Crashing late afternoon while treating PEM!! Any ideas??

[grapes]

I'm in the midst of PEM and on the seventh day. For some reason, starting at 4pm, I start to crash with bad physical fatigue that goes into the early evening. It's like sudden PEM on top of what I'm treating. And nothing explains it. Today, for example, I've been resting all day.

This is in spite of treating all day with high-dose ubiquinol and d-ribose three times a day. Started creatine HCL today too. I'm also on enough T3 thyroid meds.

Any ideas?

 

[Wolfcub]

Others here may respond with some helpful suggestions re: what you could tweak here and there....but in my experience, crashes seem to have a mind of their own and whatever I take or do, I have to just sit it out.

For example I might get the slightest little boost from 2-3g vitamin C, but that might last an hour then its effect has gone and if I try it again -no response. Basically I have found whatever I do, don't do, take or don't take, it seems like more of a question of time for the crash to pass.

It's disheartening I know, when you are doing the best you can, and a crash won't seem to resolve, and has been going on for days or a week or more. I do know. I am having one like that now, and it has been that way (with some slight glimpses of improvement, soon gone !) for about 2 weeks or more.

I just want another "remission" like I got for a number of weeks in the summer !

 

[grapes]

Others here may respond with some helpful suggestions re: what you could tweak here and there....but in my experience, crashes seem to have a mind of their own and whatever I take or do, I have to just sit it out.

For example I might get the slightest little boost from 2-3g vitamin C, but that might last an hour then its effect has gone and if I try it again -no response. Basically I have found whatever I do, don't do, take or don't take, it seems like more of a question of time for the crash to pass.

It's disheartening I know, when you are doing the best you can, and a crash won't seem to resolve, and has been going on for days or a week or more. I do know. I am having one like that now, and it has been that way (with some slight glimpses of improvement, soon gone !) for about 2 weeks or more.

I just want another "remission" like I got for a number of weeks in the summer !

You are so correct that we have to wait it out with PEM. On the positive side, it's a great time to get things done while I'm laying or sitting.

As far as my horrific afternoon crashes, I'm pretty convinced that it's my cortisol taking a dive. PEM crashes seem to cause me to have very high cortisol during the night. I wake up a lot. and I know that super high cortisol for many hours during the night means I'm going to have really low cortisol in the afternoon.

So today by 2-3 pm, I'm going to take several caps of adrenal cortex. I did that yesterday and it shortened the length of the miserable dive. But I don't think I took enough, soon enough.

 

[Wishful]

On the positive side, it's a great time to get things done while I'm laying or sitting.

Well, maybe if your not suffering from bad mental lethargy. My PEM typically means that I don't get any of the non-physical tasks done either. Actually, I'm more likely to get some physical-but-not-mentally-challenging tasks done (digging soil, sawing wood). During PEM, I try to avoid anything that requires judgement, because mine is terrible then. No power tools!

 

[grapes]

Well, maybe if your not suffering from bad mental lethargy. My PEM typically means that I don't get any of the non-physical tasks done either. Actually, I'm more likely to get some physical-but-not-mentally-challenging tasks done (digging soil, sawing wood). During PEM, I try to avoid anything that requires judgement, because mine is terrible then. No power tools!

That's amazing. I am able to read and study, but can't do anything physical at ALL.

The only exception with reading etc is when I FIRST crash. I'm horribly sleepy and thus out of it with my ability to think. But after that, it's just days and days of limiting physical fatigue.

 

[Wishful]

That's amazing. I am able to read and study, but can't do anything physical at ALL.

The amazing variability of ME. When my ME (or PEM) is severe, I can't even focus well enough to enjoy reading, but I could do heavy physical labour. The perceived muscle aches that accompany my severe ME might make it really unpleasant, but I'm not lacking in the physical capability. No sign of limited ATP in my muscles.

The mitochondria in the brain and those in the rest of the body can have genetic differences, so maybe those in my body have an extra copy or whatever that prevents my ME from causing dysfunction there, and you have the opposite situation.

I wonder if the researchers looking for genetic markers of ME have thought to test cerebral mtDNA as well as the serum DNA, especially from those of us who don't suffer from both mental and physical symptoms.

 

[grapes]

You know, there's a lot I've learned in this forum, but one thing I don't know: Can one have PEM without having CFS/ME? I continually read that PEM "worsens one's CFS/ME". But my PEM's don't worsen anything.

Once I recover from a PEM crash, I live a fairly normal life without constant fatigue. I have no pain that I read some have. I have no known viral infection. No issues with thinking or memory. And no problems while standing or sitting upright. So am I just a PEM person?

 

[Wishful]

I think it's possible to have some sort of post-exertional medical problems that are not ME. It could be an odd type of ME, or it could be something different. I suggest not ignoring other possibilities. Maybe you're lucky, and it's something treatable.

I don't have an obvious viral infection either, not POTS or OI, but I still fit the criteria for ME.

 

[grapes]

I think it's possible to have some sort of post-exertional medical problems that are not ME. It could be an odd type of ME, or it could be something different. I suggest not ignoring other possibilities. Maybe you're lucky, and it's something treatable.

I don't have an obvious viral infection either, not POTS or OI, but I still fit the criteria for ME.

I appreciate that confirmation of my own thoughts. I've been trying to figure this out awhile as to why I have PEM. I've narrowed it down to four issues that are treatable. I'm working with my doc to figure it out. These PEM crashes are pretty awful and I've had them now for 4 years. But at least there are potential clues.

 

[Wishful]

@grapes , if you do find out that you have a horrible--but treatable--disease, please let us know, so we can congratulate you for having that rather than ME.

 

[hapl808]

I can't do anything physical during PEM episodes (but normally can't do much physical), and I lose a lot of ability for critical thinking. Weirdly, I can still write things that don't require concentration - same with reading or learning. I can do rote memorization, but can't watch a 5 minute video that explains something. Almost impossible to read anything that requires digestion, but I can read a meaningless news story that I'll forget within 10 minutes. Strange combination of symptoms.

I tested cortisol in the past and it was surprisingly normal, but I tested on one of my better days so that might be misleading. When fatigue hits it's usually in the afternoon and again in the late evening. Lately requiring at least two 1-2 hour naps every day.

 

[grapes]

@grapes , if you do find out that you have a horrible--but treatable--disease, please let us know, so we can congratulate you for having that rather than ME.

Well, I don't think I have a horrible disease, luckily. What I wonder is if all the detoxing I've had to do just wore me and my mito out.

 

[Wishful]

@grapes , are you still doing the detoxing? Lots of people feel much worse while doing that. There are theories about why it happens, but I don't think anyone really know what's really going on. If you've already stopped the detox, and still feel lousy, I wouldn't be surprised if your body is still recovering from that.

I'm skeptical about the value of detoxing unless your doctor does tests and finds that you do have harmful levels of a toxin. I suspect that many of the alternative medicine places that do 'toxin assays' may manipulate the testing to provide scary results to sell detox treatments.

 

[Wolfcub]

I am bad at everything when I have PEM. I can literally walk, and appear to be living quite normally (if an outsider saw me) But I just feel terribly rough. My ability to do any real work physical or mental is probably about 30% of a normal ability. I just feel like I am coming down with flu and have had only 3 hours sleep.

 

[panckage]

I'm in the midst of PEM and on the seventh day. For some reason, starting at 4pm, I start to crash with bad physical fatigue that goes into the early evening. It's like sudden PEM on top of what I'm treating. And nothing explains it. Today, for example, I've been resting all day.

I think what you are describing may not be PEM. We get PEM from overexerting (physical/mental/etc). if you haven't overexerted yourself in the last 7 days then this 7th day sudden change is probably just part of the natural ebb & flow of our symptoms

 

[grapes]

@grapes , are you still doing the detoxing? Lots of people feel much worse while doing that. There are theories about why it happens, but I don't think anyone really know what's really going on. If you've already stopped the detox, and still feel lousy, I wouldn't be surprised if your body is still recovering from that.

I'm skeptical about the value of detoxing unless your doctor does tests and finds that you do have harmful levels of a toxin. I suspect that many of the alternative medicine places that do 'toxin assays' may manipulate the testing to provide scary results to sell detox treatments.

Yes, the doctor did tests, and I did need to get problems out or down. Two high heavy metals, lots of candida, even mold.

 

[grapes]

UPDATE: I think I have the strongest clue yet as to my continued fatigue crashes/PEM after a lot of activity. Granted, this may or may not explain why I started this string in the first place--crashing in the afternoon after a day of rest. I do think that was a cortisol issue, as I had high cortisol at night then, which in me, tends to lower cortisol in the afternoon and cause fatigue.

But here's what I think may be going on with my PEM issues after activity (which doesn't fit having ME/CFS). A few months ago, I did a stool test. Everything looked fine...except that I had an intermediate level of carbs in my stool that shouldn't have been there like that. They weren't being digested. And there was no explanation from the test. I kept thinking about that fact, and it's hard to find information on the internet. I even got amylase, the enzyme to break down carbs.

But it dawned on me, from crashing again with PEM after a day of activity, that perhaps my Amylase levels are just low enough that I need to take Amylase for ANY kind of carbs I eat, not just one time. I started that two days ago. Even if I took one bite of a carb or starch, even if the carb or starch was a small amountt, I popped the Amylase. And I DID notice my energy lasted longer on the first two days I was more committed like that.

Now granted, I did still crash with fatigue by 4 pm each of the two days. But I don't normally go that long before PEM. And it wasn't the typical crash that would last days on end.

I think studied these steps of digestion of carbs:

1. Saliva releases amylase as you chew
2. Stomach blocks any more breakdown due to acid
3. In the duodenum (small intestine), pancreatic juices are released containing amylase which breaks down starch and glycogen into maltose, a disaccharide
4. Disaccharides broken down to monosaccharides (simple sugars) by maltases, sucroses, and lactases
5. Maltase breaks down maltose into glucose
6. Other disaccharides (sucrose and lactose) broken down by sucrase and lactase
7. Monosaccharides (glucose) used for energy

As I study that, I'm suspicious that my digestive breakdown of starches and carbs is very inadequate after #3. Because in #7 it's mentioned that monosaccharides, which are in #4, are used for energy...unless my problem is in #5--maltase.

I looked at my AMY genes in 23andme.com and out of 18 possible mutations, three had no mutation, ONE was heterozygous, and 13 has NO DATA. So if I'm to find out if I have an amylase mutation, it will take a specialist in genetic testing?

So here's where I'd like to bring in @BeADocToGoTo1 who discovered his fatigue was related to a very serious lack of enzymes via his pancreas:

1) Have you heard of someone only having problems with the release of Amylase? Now an Organic Acids Test (OAT) a few years ago did imply I'm not breaking down protein or fat well, but that hasn't been the case with the latest OAT. And by the way, I'm on bile due to poor release via blockages in the bile duct (polyps). And bile resolved the fat breakdown issue well.

2) If it is just a poor release of amylase, does it simply take time to see energy improvements? Am I expecting too much that only two days have gone by and though I lasted much longer due to the amylase, I still somewhat crash, even if not crashes that last days on end.

I do take digestive enzymes now for EVERY meal, plus the amylase as of this week with every single amount of carbs or starches.

 

[Stretched]

In addition to those areas you’ve explored, similarly, I get a feeling of overwhelming sleepiness in the afternoons from ~5pm to ~8pm, like a sugar crash, whether or not in a PEM state.

I have ongoing insomnia but otherwise get unrefreshed sleep, compounded as a result of using rx’s for sleep, e.g. Ambien or benzo. I think they cause a side effect of messing with circadian rhythms and periodic low energy states. Pushing through this can actually trigger PEM.

 

[BeADocToGoTo1]

In addition to those areas you’ve explored, similarly, I get a feeling of overwhelming sleepiness in the afternoons from ~5pm to ~8pm, like a sugar crash, whether or not in a PEM state..

...Now granted, I did still crash with fatigue by 4 pm each of the two days. But I don't normally go that long before PEM. And it wasn't the typical crash that would last days on end..

Having energy dips in the afternoon is normal for all humans and not something to worry about. Depending on how I feel I will either go get some extra oxygen and blood flow in my system by going for a walk or some other form of exercise. Or, on other days I will use that as the time to do a little meditation followed by a quick nap. I will put the alarm on so that I do not sleep too long. In some cultures this is called a siesta.

Most people that work in offices will be going for their coffees around that time too.

 

[BeADocToGoTo1]

...
But it dawned on me, from crashing again with PEM after a day of activity, that perhaps my Amylase levels are just low enough that I need to take Amylase for ANY kind of carbs I eat, not just one time. I started that two days ago. Even if I took one bite of a carb or starch, even if the carb or starch was a small amountt, I popped the Amylase. And I DID notice my energy lasted longer on the first two days I was more committed like that.
...
I do take digestive enzymes now for EVERY meal, plus the amylase as of this week with every single amount of carbs or starches.

Thanks for the update.

Yes, if you have any issues with breaking down food it is important to take the enzymes with everything that contains calories! Even with a little snack I take enzymes, just not with drinks that do not have calories like coffee and tea. However, if there is milk or cream in the coffee I will take both Lactaid and a small Creon in order to digest the milk.

Having undigested food molecules go further in the system can cause all kinds of havoc like auto-immune reactions, bacterial overgrowths, bloating, pains, etc.; it is not just that you will be missing out on the nutrients from the food.

I looked at my AMY genes in 23andme.com and out of 18 possible mutations, three had no mutation, ONE was heterozygous, and 13 has NO DATA. So if I'm to find out if I have an amylase mutation, it will take a specialist in genetic testing?

I do not take any actions based on 23andMe info. It is interesting and may point to something genetic, but it does not tell you if certain markers have been turned on. Epigenetics vs genetics is an important distinction. Just because you have a mutation does not mean it is turned on.

1) Have you heard of someone only having problems with the release of Amylase? Now an Organic Acids Test (OAT) a few years ago did imply I'm not breaking down protein or fat well, but that hasn't been the case with the latest OAT. And by the way, I'm on bile due to poor release via blockages in the bile duct (polyps). And bile resolved the fat breakdown issue well.

This statement alone shows that you have trouble breaking down fat as well as carbs. Bile helps break down fat into smaller blocks, but pancreatic enzymes are then used to further break down those smaller blocks. I would not focus too much on proportionality or split of the macro breakdown. Focus on the fact that you are having trouble breaking down food in general, and take bile and enzymes with your meals. It will take a bit of trial and error on fine-tuning what is best for you based on the type and size of the meal.

2) If it is just a poor release of amylase, does it simply take time to see energy improvements? Am I expecting too much that only two days have gone by and though I lasted much longer due to the amylase, I still somewhat crash, even if not crashes that last days on end.

It can take months for things to improve. There can be many things going on that need time to heal once the insults are reduced and/or more nutrients are getting into the system. Your microbiome will also need to adapt to changes. And, please keep in mind that undigested food can be seen as an insult, where your immune system sees these undigested molecules as invaders and flares up. Things like systemic inflammation, gut lining irritation, leaky gut, bacterial and yeast imbalances all take time to heal.