Does anybody's CFS get better in the late evening?

Brain and nerves
1

So I'm 19 years old have have been dealing with horrible brain fog and fatigue for a couple years now. It's basically ruined my life. I can't do basic activities during the today without wanting to lay down. My brain and eyes feel like there made out of lead. And my body feels like a wet rag.

I was just curious because almost all my symptoms seemed to disappear around 8pm on the dot sometimes. I don't know if it's because endorphins are releasing or what but I feel much benter late in the evening until I go to bed. It makes not want to go to bed because I feel alive.

Does anyone else have this?

Thanks

2

I'm the same. I usually feel OK when I wake but get steadily worse as the day goes on. Then at about 8pm I suddenly feel better. I was thinking that it's maybe because I'm more relaxed in the evening but I don't know. All the best.

3

Oh yeah. A variation thereof. I typically feel better in the evening and night. Because of that, I decided why fight it? I sometimes wake my very supportive husband at 2 am or so, and we head out to an all-night coffee shop. My typical day is very upside-down. When I awaken in the morning, I feel like I've been run over by a Mack truck. I'm fatigued and almost feel paralyzed--it's that hard to move. But, as I've said, later on I sometimes (not always) feel better.

4

Yes to all;  I've always thought/felt the same too.  It is very inconvenient for me, as it is during the day that I Need to do my jobs etc, but Just can't get going until about 6 -7pm at night  (and definately nnot before I've had my Nanny nap....of 2-3- hours..during the day).

​I do wonder, now, that others say the same, why that is?.......every night I make my plans for the next day, but the next day comes around, and I Just don't have an ounce of energy to go and do anything.  Hence, nothing gets done.  When we still had our 2 story house, I could go downstairs and do things, without waking others up, but now even the basics can't get done (like ironing etc)........no shopping for groceries etc.  There have been times I've had to buy on-line, but don't always end up with what I want.............and at present I Really need an hair-cut, but havn't got the energy to even make the appt......lol

Lets see if anyone can find an answer for this one????.............Bron

5

This is fascinating as I'm similar.  I have  no motivation what so ever during the day, I have a big energy dip & must lie down from 5-7 ish pm and come 8 ish, the motivation returns, not in any great bursts of energy, but certainly I can get on with things and as my circadium rhythm is upside down,I  can't sleep at all at night but want to sleep throughout the day, but truly don't any quality sleep at all. i'd imagine it's to do with the brain, & surges of neurotransmitters & hormones etc.  you have my sympathies Jacks coz you're so young and missing out on the fun and idealism  of youth.  

6

I was the same, much better in an evening and often awake alright. My CBT therapist taught me how to use strict sleep hygiene techniques to revert my body clock. It was torture at the beginning as I would sleep at night for sometimes less than an hour but was not allowed to sleep ine day. It took three months but eventually my body clock reverted. 

7

I'm the same! I'm half asleep till late morning, have a bit energy between 11 and 2, feel dreadful between 3 and 5 and often fall asleep then about 8 at night I feel wide awake. It's so weird that there are so many people who feel the same!

8

I can relate.  I think it is suppose to have to do with cortisol levels.  I read about it in a book.

9

My experience is the same - come late evening I'm comparatively full of energy and feel well enough to do things! 

10

Yeah I feel my body clock is very out of wack because I have been staring at a computer screen for years right before bed. I just get this bust of energy around 8pm and then I get anexity if I try to sleep before 11pm so I stay up late. Sometimes I sleep for a full 8 hours but still feel like im crashing really hard around 3 -6

11

Yes, I have fatigue and other symptoms (brain fog, weakness, feeling faint if I exercise or stand still for long periods, feeling worse after a shower) that start in the morning and then clear up at the same time every day.

Once the symptoms clear up, I feel normal. I can exercise fairly vigorously (considering I spend the rest of the day resting), do chores, concentrate better, etc. etc.

I've actually had this for 15 years. It used to go away by about 10am, but it's steadily extended longer and longer into the day until now it goes away about 10pm or later.

I have been trying for a year to sort it out. Many of my symptoms align with POTS, but I don't have tachycardia, my blood pressure seems normal, and the symptoms don't manifest immediately on rising in the morning, so it's still a mystery.

Sleep disorder doesn't seem likely either because I don't feel excessively sleepy, and symptoms don't get better or worse with better or worse sleep quality or time of year.

I am seeing an endocrinologist (second one – first one wasn't up to much). I have to be retested for cortisol levels and function in six weeks because I think the first endo stuffed up the testing. (Have to wait six weeks because I have to discontinue a medication to see if it is contributing and also in order for the tests to be unaffected.)

I have been a night owl since my 20s, but I don't know whether this is related because the symptoms used to resolve at 10am when I was younger!

If I find out anything of use I will report back here.

P.S. My symptoms do feel a lot like low blood sugar, so I think I am actually going to purchase a blood sugar monitor just to rule this out. (I have had standard blood sugar tests ordered by GP that showed nothing wrong, but I felt they didn't relate to my normal life. I tried to get the first endo to investigate postprandial or reactive hypoglcemia but he brushed me off, so I feel like it is worth spending the money just to rule it out for my own satisfaction.)

12

do you guys feel like your heart rate goes up for very little effort? do you get super anxious or should i say so frustrated you get anxious? is it similar to pots syndrome? im at my witts end, started with dizziness and then i sat on the sofa for 2 weeks as felt tired and thought it may be viral so was chilled about it no anxiety back then but then after a while its all too much you push yourself beat yourself up and get anxious as all the task you need to undertake are gonna be hard work if you succeed at all? and obviously the more you are anxious the more you become depressed and then it gets pin pointed to depression im not the depressive type more anxious never got depression i get it now horrible feeling im usually very active and have loads of hobbies and interests now i dont even wanna think about them as it upsets me about how difficult any hobby is at the mo

13

i also feel so much more alive late afternoon towards the evening. i wake up feeling dreadful so cant do very much but as the day goes on i have noticed feeling better later on. i go to the supermarket now in the evenings. very strange

14

simular issue here.. cant get diagnosed

15

I found this forum because I have very similar symptoms. I sleep great, and wake up happy but 5 minutes later, I'm foggy and tired, so tired that moving feels impossible.
I can rally and work from 9-3... I'm pretty foggy 5-8 and then I feel good again 8-11...
things that help: eating 4 meals a day, with 20 g protein and very few carbs. i sometimes keep breakfast on my nightstand so i can eat protein and lay around 30 more minutes and then get up. I believe that I feel better later in the day because I've had a few meals.
I definitely have PEM: If I work too long or go out after work for too long, the 2 days later I will be too tired to even sit up. So, that's my advice: eat scrambled eggs as soon as possible in the morning (no carbs!) and see how you feel.

16

Yes! I've been dealing with these CFS like symptoms now for over a decade. No real definitive answers that show up on tests except that I have Hashimotos Thyroiditis. My symptoms tend to come and go somewhat unpredictably (often triggered by stress) but over the past month I've been in a fatigue/achy joints/brain fog/dizzy/emotionanally flat state that just won't let up. Except almost every night around 8pm I start feeling much better. I start thinking... finally, I'm coming out of this flare... Then I go to sleep at 1 or 2, and wake up at some point in the night drenched in sweat, go back to sleep, then get up at 8ish for work feeling crappy again. I suspect a tick bite in 2011 was the start of all this, and I've heard that it's not uncommon for folks with chronic Lyme to feel better in the later evening... Someone else mentioned Cortisol levels playing a role, and I think I've also heard that, and it makes sense.

17

I posted here previously. I don't know whether it's linked to feeling better in the evening or not, but I was recently diagnosed with Orthostatic Cerebral Hypoperfusion Syndrome (OCHOS). You can find papers about it on PubMed.

My case responds to steroids, although I only found that out by chance when I took steroids for a rash. So that means it is auto-immune, although there's not really anywhere to go on that. And there are other auto-immune diseases that have been shown to follow a daily cycle.

Luckily I also respond to calcium-channel blockers. They stop the arteries to the head from wrongly constricting and restore normal blood flow. (Not everyone with OCHOS improves on CCBS, but many do.)

I suggest you ask to be evaluated for orthostatic intolerance and cerebral hypoperfusion.