Poll: When during the day do you have the most energy? That is when you are not in relapse, and not sick with the flu

There was a poll similar to this on the 'other site', and the last I checked about 75-80% were worse in the morning, and better later in the day. I don't start to feel "better", until about 3pm or so, then have to take a nap after "lunch", then feel better after dinner, and by 11pm or so feel almost 'normal', although that's definitely relative.

10-15 years ago I could go out and walk for a mile or more in the early evening and not pay for it too much the next day, maybe 2 or 3 times a week.

But now, I can walk down the hall and back at 11pm, whereas I can barely move around my apartment until 3pm or so. I feel like I'm 90 at 6:30am, and about 45 at 11pm...(with 90 year old muscles).

 

Yep

 

There's your cortisol being super-low. A lot of people (ppl with "chronic fatigue") feel pretty bad at that time because that's when their cortisol is lowest. You may have cortisol issues ( a big MAY, there).

I feel better the other way around. When my cortisol drops at 3pm I'm pretty destroyed.

 

I picked the first option. My very best time is for 3-4 hours after waking up. Middle of the day and early afternoon is the worst. I usually get a bit of a boost late afternoon/evening but nowhere near as much as in the morning.

 

At the moment it is mornings and evenings for me.

In my severe years it was only in the evenings where I felt a hour or two more energy (not every day though). I had a strange weakness in my legs in the severe years which really worried me because it was a very unusual feeling of weakness. To me it felt like what MS might feel like. I mainly felt it a hour after getting up.

So, severe years...just evenings

And now...mornings and evenings, that's if I am not going through a severe bout.

 

Thank you everyone for responding. I'm going to let the poll run another week before I provide a few observations and related studies. It's a complex issue.

I'm waiting a week, partly for more data (poll participants) to come in and partly to use my limited energy this week in preparing for Thanksgiving. Fatigued or not, family comes into town on holidays and using a little energy wisely the week before can make the week go more smoothly. While some prepare for Thanksgiving in one day, a week sounds about right for me. Being flexible helps too. In the past we've moved Thanksgiving a day or two later when I or my mother (who also has MitoD) have been crashing (no matter whose home Thanksgiving was scheduled at). We've also moved Thanksgiving to a restaurant a few times. We do the bare minimum and focus on family. It's nice to have family that understands (or at least pretends to ).

 

I used to be best in the morning, around 7:30 to 11am. Able to walk the dogs, maybe, use my brain a bit for health research etc. Then my head would hurt too much to be awake, so it was nap time till around 2pm. Foggy rest of day and evening. Enormous struggle to function physically, if at all, from after nap.

Now I'm pretty useless all day.

 

Curious if you've tried skipping the coffee to see what kind of difference you experience?

 

The last time I had it checked, yes, it was too low at 8am, the spiked too high at noon, then started coming down towards 'normal' at 4pm, but was still maybe a little higher than it should've been at midnight.

I'm not sure how many things cortisol influences, but I feel just almost 'bloodless' in the mornings -- feet are blanched, cold, etc., -- but by evening, they're pinker, my reperfusion rate improves and is almost normal by midnight. Then, like a hellish version of 'Groundhog Day', the next morning...it's like some vampires have keys to my apartment...

 

I’m at my worse every morning. Up to about 12 o’clock or so. Then I have a little more energy until the end of the afternoon, unless I have to nap. This happens on the days my brain lets me sleep somewhat adequately during the night.

When I sleep little at night and have insomnia, I usually am so wired that I can’t sleep during the day and will usually have more energy for a few days until all gives in and then I am bad all day for many days/weeks until I recover. And then the same cycle starts again.

Very strange pattern.

 

I used to be like that.

 

And then it got better ? Same but different ? Worse ?

 

This is exactly the same for me. Before ME I was also a morning person. I wonder if there is a correlation?

 

I'll wake up and an entire limb will have gone numb in the night! Not because I'm sleeping on it funny... just because. Bloodless is right! We def have issues with blood flow.

I also used to be like that, around onset though. How long have you been sick?

Def better and different! Onset was awful.

When I first had fatigue symptoms everyone recommended I go off of coffee. I did.

It was awful. I thought it was withdrawal at first, but the awfulness continued way after withdrawal should've been gone. Something in coffee (beyond caffeine, I'm guessing) helps.

 

Coffee is interesting. My energy peaks after 6pm but not if I drink coffee that day. Coffee gives me a boost for 2 hrs, but depletes my energy for the rest of day. I never drink it when I have errands to do that day.

 

Could be - I have always been a morning person.

 

@JaimeS I started feeling mild symptoms in 2013, but really got ill in 2015, so about 3 years ago now.

 

Ugh. That was one of my least favorite aspects of the illness, the "wired but tired". Have you found anything that helps?

[Edit: maybe PM me, since this is off topic?]

 

I started Abilify a few weeks ago and it seems to be helping with depression/anxiety, which it was prescribed for, but I think it might be helping with that as well. Or maybe just because I increased my Nimotop. Too early to know if it’s just another phase, though.