So, newly diagnosed, took around 9 months for them to say its ME. I couldn't give you a run off of my symptoms they're so varied. Anything from sharp neuro pain and burning skin, to extreme fatigue and legs in particular feeling like lead. Left my career as an IT Project manager 60 plus hours a week. Now do admin at a very basic level at 19 hours a week. One day work, one day off in that order! I will have many questions that you will have all no doubt heard before but as I'm sure you've all experienced I wad diagnosed and discharged... Left with the Internet to solve my problems. Today's question.. . Does anyone get an outburst of energy at certain times of day, mine is from about 4.30pm to 6.30pm. So far I'm putting it down to my body needing that long to wake up, insomnia and very restless sleep means I'm very groggy in the morning. Today was a day off. Eldest to school, nothing til 1pm, then lunch with my sis and newborn... Lasted an hour and when I got home my usual heavy ache and exhaustion hit. Then when I got back from 3pm school run I was able to put away 2 wash loads of ironing (unironed... I do that daily now rather than hours at a time) and gave the house a good running over. I know I'll pay for it tomorrow... Especially as its a work day. But during the burst I feel healthy again. I feel like there is nothing wrong. So then I pour bad thoughts on myself... Tell myself "See!! You can do more"... Takes me back to thinking the docs have got it wrong. Best to mention I'm seeing a counsellor very soon for a 6 week stint as they think I'm having trouble "accepting" having a chronic illness. Well sure I am, it's transformed my life in 9 short months! So back to the question..... Anyone feel energised at regular certain times of day!?
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Similar time of day - energy outbursts?
- Thread starter Rach_Doug
- Start date
Yes, there are times when I feel more able to do things. For me it varies time-wise. My more consistent daily response is feeling worse around 2:30 PM. Yes it's hard to resist the temptation to overdo it when you temporarily feel better. Some ME victims cripple themselves for months by overdoing it in those periods. You really, really, really want to avoid doing that.
For me, socializing causes PEM, or PEM-like worsening of symptoms within an hour or so. That might be what you're experiencing after lunch with your sis. Something to consider, if it's a consistent response for you.
Your comment about "See!! You can do more" is valid...but only for a limited period of time, and at the risk of severe consequences. I suggest that you make an effort to add those parts in when you tell yourself that you can do more. Telling yourself only part of the truth doesn't help with ME. Reality can be cruel.
Welcome to PR.
For me, socializing causes PEM, or PEM-like worsening of symptoms within an hour or so. That might be what you're experiencing after lunch with your sis. Something to consider, if it's a consistent response for you.
Your comment about "See!! You can do more" is valid...but only for a limited period of time, and at the risk of severe consequences. I suggest that you make an effort to add those parts in when you tell yourself that you can do more. Telling yourself only part of the truth doesn't help with ME. Reality can be cruel.
Welcome to PR.
Thanks so much for your reply.
I suppose I have this awful feeling that one day I might not have the energy anymore so when I comes I use it. I know it's not the right thing to do but I'm in such a confusing state of denial... Like I know I sick, I know I'm a different person to six months ago but I just don't want to be, so I try fight against how I'm supposed to feel.
I'm hoping the counseling helps put me at the starting block for being ready for recovery
I suppose I have this awful feeling that one day I might not have the energy anymore so when I comes I use it. I know it's not the right thing to do but I'm in such a confusing state of denial... Like I know I sick, I know I'm a different person to six months ago but I just don't want to be, so I try fight against how I'm supposed to feel.
I'm hoping the counseling helps put me at the starting block for being ready for recovery
Yes I do generally feel better when I first open my eyes in the morning and just lie there, before I get out of bed. Once I'm up, it takes about 30 minutes to an hour to know if it's going to be a decent day or a bad day as reality hits. But those first few minutes after waking I feel nothing is wrong.
Quite often I feel better also at the very end of the day. Not always....but frequently I come back to "myself" a bit after 10pm. My energy isn't fantastic then, as I am tired, but if I've had any symptoms they can go away around that time and I feel more relieved and easier.
I also get days maybe one, maybe two or sometimes a few at a time -when I feel absolutely totally normal! It is so bizarre. I start to truly think -hey I'm better! It's over!
But it always comes back for me. That seems to happen no matter what I do or don't do, eat or don't eat, or rest, etc. It doesn't seem related to anything a lot of the time.
Quite often I feel better also at the very end of the day. Not always....but frequently I come back to "myself" a bit after 10pm. My energy isn't fantastic then, as I am tired, but if I've had any symptoms they can go away around that time and I feel more relieved and easier.
I also get days maybe one, maybe two or sometimes a few at a time -when I feel absolutely totally normal! It is so bizarre. I start to truly think -hey I'm better! It's over!
But it always comes back for me. That seems to happen no matter what I do or don't do, eat or don't eat, or rest, etc. It doesn't seem related to anything a lot of the time.
@Wolfcub yes I also have days where there is nothing and I think I'm free of it. My worse symptoms at the minute are neuro, the sharp stabbing pains etc last most of the day, everyday and worsen with PEM. They seem to get worse around 8pm ish... As soon as I rest but my energy like yours does increase at 10lm ish as soon as I want to sleep! That's where my sleep issues start... Like right now I am not tired for sleep but today at 10am, 12noon, 2pm, 7pm I could have gone to bed... Had I not had the kids I would have!
Bizarre is a great word. Its all bizarre to me. Still feels like it's a joke and the next hospital apt they'll jump out with a camera and tell me it's all over.
Bizarre is a great word. Its all bizarre to me. Still feels like it's a joke and the next hospital apt they'll jump out with a camera and tell me it's all over.
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
If Im not crashing Im better at certain times of the day too. Mornings are bad for me and I go downhill real real fast if I get out of bed and go to do things then. So I stay in bed and work on well hydrating myself in the mornings. My energy tends to pick up more as the day goes on while Im in bed.
I seem to start to get more energy around 1-3 then more from 3-7pm (if I havent done anything) and then it further picks up very late at night. My energy actualy peaks at a time when I should be asleep eg 9pm-1am but I try not to do things then as it overstimulates me so I then wont sleep at all.
I seem to start to get more energy around 1-3 then more from 3-7pm (if I havent done anything) and then it further picks up very late at night. My energy actualy peaks at a time when I should be asleep eg 9pm-1am but I try not to do things then as it overstimulates me so I then wont sleep at all.
Now some of us are just built to be more "night owl" types, and there doesn't have to be anything wrong with that. We are all different, and it's become a bit of a modern craze for everyone to have the same diurnal rhythms as everyone else, and to get up fresh at 5am! And to be asleep at 9!
9pm is and always was -just "evening" for me. I never went to bed much before 11....usually 1am. That was when I was well and for many years. And even now I do sleep very well when I get into bed. Almost always a good 8 hours.
There is nothing wrong with that...but of course we don't fit in with the social norm!
However, being too awake late at night....maybe unable to sleep.... and being unable to function in the morning can sometimes be to do with cortisol imbalance.
Just to check this out I am doing a urine cortisol check. Haven't got results in yet. (I preferred the urine test to the saliva test because I can't stand all the rules about what you can put in your mouth, and when and at what time etc.)
So here is my rant: Basically I freaking hate clocks! I don't give a damn what time it happens to be on a clock.
9pm is and always was -just "evening" for me. I never went to bed much before 11....usually 1am. That was when I was well and for many years. And even now I do sleep very well when I get into bed. Almost always a good 8 hours.
There is nothing wrong with that...but of course we don't fit in with the social norm!
However, being too awake late at night....maybe unable to sleep.... and being unable to function in the morning can sometimes be to do with cortisol imbalance.
Just to check this out I am doing a urine cortisol check. Haven't got results in yet. (I preferred the urine test to the saliva test because I can't stand all the rules about what you can put in your mouth, and when and at what time etc.)
So here is my rant: Basically I freaking hate clocks! I don't give a damn what time it happens to be on a clock.
Last edited:
@taniaaust1 @Wolfcub my problem is I HAVE to get up. Doc often says if its that bad stay in bed....however I am solely responsible physically and financially for my two boys so its not as simple as just staying in bed! I would love to, and in fact I do enjoy a lie in or a day on the sofa when my other half comes to stay.
My youngest isn't old enough (2.5 yrs) for me to nap and leave him unsupervised, and of course letting him nap with me would mean a VERY late night.
To combat awful mornings, my employer has kindly allowed me to start at 9am instead of 8am. I have started work at 8am for the last 10 years, for the last 3 companies I have worked for. So again it feels like something else to add to the list of things that I can no longer do. I'll be honest it makes me feel pathetic, but 3 weeks into the new hours it is really helping having the extra hour to slowly get ready, and it means I can sleep til 7:15 if I need to rather than 6:15.
I have nightmares, actual nightmares, about not being able to get to my children, where I can see them being taken from me but I cannot move my body to get to them - I think this is my subconscious worrying about things getting worse.
It's such a frightening place to be, the not knowing, friends and family really underestimate the mental torture a chronic illness has given me.
My youngest isn't old enough (2.5 yrs) for me to nap and leave him unsupervised, and of course letting him nap with me would mean a VERY late night.
To combat awful mornings, my employer has kindly allowed me to start at 9am instead of 8am. I have started work at 8am for the last 10 years, for the last 3 companies I have worked for. So again it feels like something else to add to the list of things that I can no longer do. I'll be honest it makes me feel pathetic, but 3 weeks into the new hours it is really helping having the extra hour to slowly get ready, and it means I can sleep til 7:15 if I need to rather than 6:15.
I have nightmares, actual nightmares, about not being able to get to my children, where I can see them being taken from me but I cannot move my body to get to them - I think this is my subconscious worrying about things getting worse.
It's such a frightening place to be, the not knowing, friends and family really underestimate the mental torture a chronic illness has given me.
I understand, @Rach_Doug
Yes there isn't much flexibility with your work and your little ones. But of course it's a concern because you have to keep going.
It's just an idea....it might not apply to you but you can maybe eliminate it....
Get your cortisol levels checked. That can be done either with a saliva test, blood test or urine test, whichever suits you.
Normal cortisol levels fluctuate through the day but are usually a little higher first thing a.m. and lower at night, allowing us to wind down.
Being utterly exhausted at night, and "winding down" naturally are two completely different things.
If your cortisol is too low in the morning you will have no get up and go at all. You might find it mighty hard to even get out of bed. If they are higher at night you may find it harder to get a restful sleep or to feel like sleeping at a decent time for your life requirements.
But of course with young children you have to follow a certain pattern and when you are so exhausted it is hard to do.
I completely understand.
I hope others here will also have some more suggestions for you to try.
I do wish you well, and hope you can find something to help. Kind thoughts.
Yes there isn't much flexibility with your work and your little ones. But of course it's a concern because you have to keep going.
It's just an idea....it might not apply to you but you can maybe eliminate it....
Get your cortisol levels checked. That can be done either with a saliva test, blood test or urine test, whichever suits you.
Normal cortisol levels fluctuate through the day but are usually a little higher first thing a.m. and lower at night, allowing us to wind down.
Being utterly exhausted at night, and "winding down" naturally are two completely different things.
If your cortisol is too low in the morning you will have no get up and go at all. You might find it mighty hard to even get out of bed. If they are higher at night you may find it harder to get a restful sleep or to feel like sleeping at a decent time for your life requirements.
But of course with young children you have to follow a certain pattern and when you are so exhausted it is hard to do.
I completely understand.
I hope others here will also have some more suggestions for you to try.
I do wish you well, and hope you can find something to help. Kind thoughts.
@Wolfcub thanks, I have my next telephone apt with GP to discuss blood results... I've asked to have my b12 levels checked...bizarre they haven't checked it in the 12 blood tests I've had since November! I read that b12 injections can help with energy levels for sufferers. Whether I'll get it is another story. When I speak with him I'll ask about cortisol definitely x
That's why I posted the news (other thread) about a new blood test for circadian rhythm. Some people are probably suffering from following a timetable that isn't right for them. A clinical test that can show when your body should be sleeping/waking might let those people say 'Okay, I guess I should change my lifestyle.' Maybe some employers will accept that for allowing unusual flextime too.
I'm not telling your doctor what to do. He/she knows better than I do. I am just starting to learn all this...but to check for cortisol imbalances that really needs samples to be taken about 4 times in a day (I think so anyway!) 1) Morning 2)midday 3)something like late afternoon, and 4)night time (bed time or nearby)
I am interested in that post of yours. I saw it the other day then was going to read and missed it again! I will go and find it. Thanks for reminding me.