Question on couple of symptoms

[SuhasSN]

What could be the possible reasons for following symptoms. Are these commonly observed in ME?
1. Feel better in late evening and night than in morning and afternoon.
2. Lot of fatigue and feeling of inflammation after eating that is during digestion. It happens more after lunch but less after dinner.

 

[Wolfcub]

I get both symptoms.
I'm not sure if what I'm feeling after eating is due to inflammation, or what. My stomach feels okay, but I can get deep exhaustion after eating for an hour or two. Not all the time, but I do get that. That isn't sleepy tiredness, it's a feeling like I haven't got long for this world. Best way to describe it.
And yes it is far more likely to happen after my first meal of the day (breakfast/lunch, as I have a late breakfast) rather than my second (dinner about 6pm.)

I have also started getting an IBS-like lower abdominal bloating, a lot of rumbling and some wind that never seems to want to come out until after a night's sleep, a few hours after eating, but that happens mostly in the evening.

But yes I can often start to feel much better about 9-10pm onwards. Sometimes I don't want to go to bed to start the whole thing over again. I just want to stay in the moment of feeling okay.

 

[Wishful]

The simple answer to the question: ME!

As for exactly what mechanism of ME would cause this, that's far more difficult to answer, and we're still waiting for researchers to figure it out.

 

[Pyrrhus]

Both of those symptoms are commonly experienced in ME.

1) Feeling better in the evening rather than in the morning is sometimes associated with an inverted cortisol profile. Normally, a healthy person will have high levels of the "wakefulness" hormone cortisol in the morning and lower levels of cortisol in the evening. Some ME patients (not all) have low cortisol in the morning and high cortisol in the evening, which is the opposite. (But there is great variation in ME patients regarding daily cortisol profiles.)

2) Feeling weak, bloated, or brain foggy after eating is commonly experienced in ME. There are multiple possible explanations. It may be that the increase in digestion diverts blood flow from the brain and limbs. It may be that the food, especially fats and carbs, trigger intestinal inflammation, which can affect the intestinal nerves or the rest of the nervous system. The "leaky gut" hypothesis posits that food metabolites sneak across the intestinal wall, potentially affecting the rest of the body. Or it could be some combination of the above.

Hope this helps.

 

[SuhasSN]

@Wolfcub @Wishful @Pyrrhus
Thanks for your reply
1.Have you ruled out structural causes CCI/AAI for your ME?
Vagus nerve compression or damage due to structural issues could also cause fatigue after eating and digestion problems.
2. How severe is your ME? Was it acute onset after viral?
3. What treatment(drugs,medicines), therapies have helped you to feel better?

 

[Wolfcub]

@Wolfcub @Wishful @Pyrrhus
Thanks for your reply
1.Have you ruled out structural causes CCI/AAI for your ME?
Vagus nerve compression or damage due to structural issues could also cause fatigue after eating and digestion problems.
2. How severe is your ME? Was it acute onset after viral?
3. What treatment(drugs,medicines), therapies have helped you to feel better?

No I haven't ruled out CCI/AAI, and that is interesting about vagus nerve compression. I have a few symptoms that would fit with a mild dysautonomia, including digestion problems. I didn't realise it could cause digestive problems.

I would say my CFS/ME is probably low-moderate. It did start just over 2 years ago after what felt like a weird atypical flu. But the virus was never identified. Bloodwork (3 weeks in) showed no abnormalities except a slight electrolyte imbalance which was beneath the Lab's "red flag zone".

Nothing I've taken has made any difference.

 

[SuhasSN]

No I haven't ruled out CCI/AAI, and that is interesting about vagus nerve compression. I have a few symptoms that would fit with a mild dysautonomia, including digestion problems. I didn't realise it could cause digestive problems.

I would say my CFS/ME is probably low-moderate. It did start just over 2 years ago after what felt like a weird atypical flu. But the virus was never identified. Bloodwork (3 weeks in) showed no abnormalities except a slight electrolyte imbalance which was beneath the Lab's "red flag zone".

Nothing I've taken has made any difference.

Thanks

 

[space8]

But yes I can often start to feel much better about 9-10pm onwards. Sometimes I don't want to go to bed to start the whole thing over again. I just want to stay in the moment of feeling okay.

This is so relatable. I also have both of these symptoms (feeling better in the late evening, plus increased fatigue after eating). I think the above to myself every night. It feels so ... almost cruel, having to go to bed as you're just starting to feel normal knowing you'll have to repeat the cycle of fatigue the full day the next day. Then rinse and repeat. And if you choose to stay up you'll feel even worse the next morning after getting very little sleep, so there's really no winning ...

The last year I've noticed that my evening "energy surge" starts later in the evening. Before it kicked in around 8-9 pm but lately it's more like 11-12. I wonder what that's about?

 

[Wishful]

It feels so ... almost cruel, having to go to bed as you're just starting to feel normal

Yes, and it tempts you into doing something active, which might mess up your sleep (it does for me). It sure does seem cruel.

Before it kicked in around 8-9 pm but lately it's more like 11-12. I wonder what that's about?

If you ever figure out what factor is responsible, let the rest of us know too. I've had periods where I'd abruptly feel worse around 2:30 PM. I never found a factor that would alter the time. However, when it first started, I think it was around 4:30 PM. It changed for some reason I'll probably never find out. I think my "energy surge" was less reliable in both time it appeared and appearing at all.

 

[borko2100]

I think the afternoon crash / feeling better in the evening is quite common. Apparently this also happens in MS:

Over 4 weekdays, 76 participants (38 relapsing-remitting MS; 38 controls) recruited from multiple sites provided real-time self-reports six times daily (n = 1661 observations analyzed) measuring fatigue severity, stressors, mood, and physical exertion, and daily self-reports of sleep quality. Fatigue fluctuations were evident in both groups. Fatigue was highest in relapsing-remitting MS, typically peaking in late-afternoon.

Given that both ME and MS affect the CNS / brain, I am guessing some kind of a brain process that is on a timer (circadian rhythm) is to blame.

 

[Booble]

Add me to the -- "Why do I feel so good all of a sudden?" when it's nearing bedtime.
I've thought that maybe it was related to the air pressure? It feels easier to breath. The air feels good. I feel like a different person. Dare I say I feel "normal?" And then I have to go to bed and wake up blah again.

 

[Wishful]

I think it's tied to the circadian rhythm. My 'worse at 2 PM' problem didn't change with changing sleep patterns (at least short-term changes) or time of meals or anything else I could think of to try. I have no idea what in all the different factors that change with point in the circadian cycle might be responsible.

 

[SuhasSN]

I think this is something related to brainstem (ANS)

 

[SuhasSN]

I think the afternoon crash / feeling better in the evening is quite common. Apparently this also happens in MS:



Given that both ME and MS affect the CNS / brain, I am guessing some kind of a brain process that is on a timer (circadian rhythm) is to blame.

Intreasting
Do MS patient have PEM ?
I guess generally MS patients are not so severe as compared to ME ?
also do they have Autonomic dysfunction ?