Are You A Morning Or Evening Person? An ME/CFS and Fibromylagia Poll

[Cort]

Is morning the worst time for people with ME/CFS and fibromyalgia?

[bimg=fright|no-lightbox]https://upload.wikimedia.org/wikipedia/commons/thumb/0/02/Sunrise_at_Carolina_Beach%2C_North_Carolina.JPG/800px-Sunrise_at_Carolina_Beach%2C_North_Carolina.JPG[/bimg]Three things suggest it may be.

• A recent study indicated that people are far more likely to be diagnosed with postural orthostatic tachycardia syndrome (POTS) - a condition often seen in ME/CFS/FM - if tested in the morning rather than in the afternoon. POTS occurs when the heart beats too rapidly when standing to get enough blood to the brain. Check out that study here.
• Another study found that salivary cortisol in the morning - but not later in the day - is common in ME/CFS.
• Finally, the weakest bit of evidence is personal. Personally, I'm much, much better off in the late afternoon than the morning. Prior to getting ME/CFS/FM I couldn't have said I was an afternoon person - but now it's clear that I am. If you think about it that's an odd thing given how much energy I use up earlier in the day. I would think I would be freshest in the morning but with regard to my ability to be active and think clearly morning is the worst time.

(Image By Bigroger27509 - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=19530100)

 

[Veet]

I'm best in AM, always have been. But I tend to have another boost around 2-3PM. My POTS-lite is worse in evening.

 

[Issie]

@Cort , cortisol is supposed to be lower in the afternoon and higher in the morning. (Not quite sure what you are trying to say in your post.) Something that may make you more alert and up - appears that many (most) MCAS people get another surge of seratonin in the afternoons. This wakes us up and gives us that surge and usually issues with insomnia. http://www.iamast.com/medications/4564806907

I have POTS pretty bad and the worst subset type of HyperPOTS. I was DXD in afternoon. And they got it almost immediately. No denying it. That was with an electrocardiologist at Mayo. Then the Neuro doc and POTS doc at Mayo wanted his own test. It was done in the morning - again, no denying. So if it's bad enough, and they know what they are observing - they will get it.

Issie

 

[San Diego]

I was looking for the option EVENING!!! in bolded all caps lol. I don’t even attempt mornings any more lol.

I’ve always been a night owl living in a morning people world. The difference was, when I was healthy, I could do both am and pm. I just had a preference for the night. Now I don’t really have a choice.

 

[SueS]

I'm a night owl with a lust for sunrises. Melatonin helps me greatly to be asleep before 3am. When we went interstate at Xmas I was panicking about getting up early for the flight (on top of the usual panic about everything and the hardcore fear that I'd crash while away and be in bed).

I took melatonin each night early for a week and woke at 7am each day then managed to get up at 5.30am to catch the plane. It felt like I was in this crazy other world. It's a beautiful way to start the day going from dark to light as the sun comes up.

But I love the night time, how everything is geared down, the earth is resting. The minutes feel longer and wider at night for me.

 

[tandrsc]

Perhaps there could be a "none" option. No particular time of day is good for me. Sometimes mornings are better, but there are days when I don't really see the morning at all.

Sometimes afternoons are better, but I'm usually exhausted by about 3pm or 4pm. I don't think evenings are ever very good and I need to be in bed by 10pm (used to be 9pm, but I've been a bit better lately).

 

[tester]

@Cort , cortisol is supposed to be lower in the afternoon and higher in the morning. (Not quite sure what you are trying to say in your post.) Something that may make you more alert and up - appears that many (most) MCAS people get another surge of seratonin in the afternoons. This wakes us up and gives us that surge and usually issues with insomnia. http://www.iamast.com/medications/4564806907

I have POTS pretty bad and the worst subset type of HyperPOTS. I was DXD in afternoon. And they got it almost immediately. No denying it. That was with an electrocardiologist at Mayo. Then the Neuro doc and POTS doc at Mayo wanted his own test. It was done in the morning - again, no denying. So if it's bad enough, and they know what they are observing - they will get it.

Issie

Salivary cortisol levels relative to healthy controls are significantly lower in the morning for ME/CFS but comparable later in the days

Maybe its that serotonin surge that I'm experiencing. Sometimes I actually notice when it happens - it's like a feeling of clean energy suddenly comes over me

I would agree that POTS is really bad they will find it any time

 

[tester]

Perhaps there could be a "none" option. No particular time of day is good for me. Sometimes mornings are better, but there are days when I don't really see the morning at all.

Sometimes afternoons are better, but I'm usually exhausted by about 3pm or 4pm. I don't think evenings are ever very good and I need to be in bed by 10pm (used to be 9pm, but I've been a bit better lately).

Good idea - I will put in none!

 

[lisapetrison]

I did a poll like this in the Mold Avoiders group on Facebook recently. Here are the results.

Early Bird/Night Owl Poll

Which of the following is true for you? Please choose only one answer.

61 votes - I always have been more of a night owl and still am.
24 votes - My sleep is so messed up that I don't know if I am a night owl or early bird at present
13 votes - I always have been more of an early bird and still am.
11 votes - I used to be more of a night owl before getting sick but now am more of an early bird.
6 votes - I don't think I'm a night owl or an early bird, especially.
2 votes - I used to be more of an early bird before getting sick but now am more of a night owl.

You are welcome to use these results if you decide to write more about this topic, Cort.

https://www.facebook.com/groups/moldavoiders/permalink/1197509486950567/

Best, Lisa

 

[lisapetrison]

Here are a couple of articles on the night owl/early bird phenomenon.

http://tech.co/study-shows-late-sle...l&utm_source=facebook.com&utm_campaign=buffer

http://www.fastcompany.com/3061920/...ips-for-night-owls-to-get-through-the-workday

I became focused on this because Dave Asprey (who formerly had CFS and mold illness) seemed really happy to get scientific proof that night owls might actually be smarter, after having had it suggested all his life that people who are not early birds are lazy or have a character flaw.

What I am wondering now is whether being a night owl should be considered a risk factor for getting this kind of chronic illness.

I do understand about the cortisol levels and of course had that reversed cortisol pattern when I was more sick (probably still do). But I think the best explanation for it is that the body does all its detox work at night, and so people with diseases of toxicity wake up feeling hungover. And then take hours and hours to flush that crap out of the system.

I personally have found something like a coffee enema (which prompts a bile dump) to be helpful for making mornings more productive for me. Though of course, that is a really controversial therapy and so I am not especially suggesting it to others.

 

[Blueskytoo]

Mornings are terrible for me - I'm usually awake between 7 and 8am while my hubby goes to work, then I take my pain meds and go back to sleep until about midday. I feel awful in the mornings, really groggy, exhausted and in pain. I'm awake during the rest of the day, but I start to feel worse again around 5pm. I don't get to sleep until between midnight and 1am. Until I got ill about 7 years ago I was always an early riser, but not now.

 

[Terresa]

I hate mornings, or basically the first 2 or 3 hours after I get up each day, regardless of the clock. I've been living with ME for over 12 years, so I can hardly remember before, but I can tell you that this is different. I may not have liked mornings before, but I functioned. Now, unless I have that 2-3 hours to gradually "wake up", I am much worse for the rest of the day (brain fog, pain level, etc).

 

[Cort]

I did a poll like this in the Mold Avoiders group on Facebook recently. Here are the results.

Early Bird/Night Owl Poll

Which of the following is true for you? Please choose only one answer.

61 votes - I always have been more of a night owl and still am.
24 votes - My sleep is so messed up that I don't know if I am a night owl or early bird at present
13 votes - I always have been more of an early bird and still am.
11 votes - I used to be more of a night owl before getting sick but now am more of an early bird.
6 votes - I don't think I'm a night owl or an early bird, especially.
2 votes - I used to be more of an early bird before getting sick but now am more of a night owl.

You are welcome to use these results if you decide to write more about this topic, Cort.

https://www.facebook.com/groups/moldavoiders/permalink/1197509486950567/

Best, Lisa

Thanks Lisa - clear preference there!

 

[Cort]

Here are a couple of articles on the night owl/early bird phenomenon.

http://tech.co/study-shows-late-sle...l&utm_source=facebook.com&utm_campaign=buffer

http://www.fastcompany.com/3061920/...ips-for-night-owls-to-get-through-the-workday

I became focused on this because Dave Asprey (who formerly had CFS and mold illness) seemed really happy to get scientific proof that night owls might actually be smarter, after having had it suggested all his life that people who are not early birds are lazy or have a character flaw.

What I am wondering now is whether being a night owl should be considered a risk factor for getting this kind of chronic illness.

I do understand about the cortisol levels and of course had that reversed cortisol pattern when I was more sick (probably still do). But I think the best explanation for it is that the body does all its detox work at night, and so people with diseases of toxicity wake up feeling hungover. And then take hours and hours to flush that crap out of the system.

I personally have found something like a coffee enema (which prompts a bile dump) to be helpful for making mornings more productive for me. Though of course, that is a really controversial therapy and so I am not especially suggesting it to others.

Thanks for the first explanation I've heard of why mornings might be so tough...
I love coffee enemas by the way - I just can't take them very much - they rev me up and then leave me depleted. they are fun, though

In fact, I think I'm going to do one this week...Thanks for reminding me

 

[lisapetrison]

Thanks for the first explanation I've heard of why mornings might be so tough...
I love coffee enemas by the way - I just can't take them very much - they rev me up and then leave me depleted. they are fun, though

Ha ha ha....

 

[JaimeS]

I definitely have TWO active times of day: about 8am to about noon, and about 8pm to midnight. I picked morning just because I had to choose one, but if there were the option, I would have picked midmorning and evening as my two times.

Like a lot of folks, I have a 2pm/3pm slump -- that is when I have the least energy.

However, when I was acute, mornings were the worst. It was hard to get me conscious. Back then I lived at home, and a family member would have to wake me multiple times, and I usually didn't remember being woken. Eventually, my mother figured out that if she pressed a hot cup of coffee in my hand and waited until I took the first sip, I was probably okay to leave alone.

 

[Issie]

Salivary cortisol levels relative to healthy controls are significantly lower in the morning for ME/CFS but comparable later in the days

Maybe its that serotonin surge that I'm experiencing. Sometimes I actually notice when it happens - it's like a feeling of clean energy suddenly comes over me

I would agree that POTS is really bad they will find it any time

Yeah we are supposed to be waking up , having a boost of cortisol and tapering down at night. But that extra evening boost has us up researching, learning and for sure not sleeping. Here's an article that says how it should be.

http://adrenalfatiguesolution.com/cortisol-levels-change-throughout-day/
Cortisol levels are generally high in the morning as we wake from a prolonged period of sleep, with an increase of up to fifty percent in the twenty to thirty minutes after waking. This is known as the ‘cortisol awakening response’. Then, as the day progresses, our cortisol levels naturally begin to drop in a fairly constant and regular fashion that is termed a diurnal rhythm, ending up as low in the late evening. This allows the body to keep a regular sleeping pattern, with the cortisol level dropping for periods of sleep, then replenishing during the following morning

Issie.

 

[Tammie Page]

Cannot function at all in the AM unless it's because I have not been to sleep at all yet......once I go to sleep, I get my best sleep (not that it's ever refreshing or truly good) between 6am and 11am.....if I try to do anything at that time, it's like I am on major heavy duty drugs ( I don't take sleep or pain meds, though)....even getting to the bathroom and back during that time is a big problem - lots of trouble getting out of bed, lots of stumbling and bumping into things, losing my balance, etc (& the bathroom is rt next to the bedroom)

 

[San Diego]

What I am wondering now is whether being a night owl should be considered a risk factor for getting this kind of chronic illness.

Great point. One has to wonder if the years of forcing our adrenals into unnatural diurnal patterns catches up to us? I’ve always heard that one hour of sleep before midnight is worth more than 2 after midnight. I should have listened lol.

 

[Jeshyr]

Early afternoon for me is the best time - about noon to 3pm. At 3pm I fall over and need to sleep until 6pm.

It's worth noting that the "best time" may be affected by meds. I know because Midodrine has a very short window of action (serum half life = 90 minutes) I can manipulate what time I'm best by changing the dosing times, at least to some degree.

That said, early afternoon was my best time anyway - I arranged the doses the way they are so it reinforces what my body does naturally because that way I get both "bests" cresting at once.