Anyone else feel the worst first thing in the morning?

[ezma24]

I feel worst (fatigue, lightheaded, generally not good) first thing in the morning when I wake up. I usually sleep around 8-10 hours per night. Never suffered from insomnia as many do, I always had the opposite of sleeping too much. I usually wake up and just have to lie in bed for an hour before I feel ready to start the day. This is unaffected by how much activity I have done the day before so not PEM related. I have noticed if I sleep 6 or 7 hours I wake up feeling more awake but then often have to nap later in the day as I get sleepy.

Anyone else have this? That their first couple of hours when they wake up are their worst? Any ideas what the underlying cause could be?

I was thinking about investing in an Oura ring to see the quality of my sleep and also oxygen saturation during the night. Perhaps it could be related to either one of those.

 

[Judee]

Absolutely...mornings (or rather the first part of the day) is the worst. Many people with ME seem to have this. If you look up Sleep Inversion and Delayed Sleep Phase Syndrome on Wikipedia they both give some info. I do better the later I go to sleep which is usually around 4am lately.

Even so, it still is hard that first part of the day. I have to keep reminding myself that hopefully I will feel a bit better in the evening otherwise it can be very discouraging at times.

I think maybe someone talked about heightened immunity that goes on overnight...you know how our bodies are supposed to be doing repairs during that time. Maybe the mornings are a "hang over" from all that immune activity. ???

Someone did start an Oura ring blog a while back...I want to say possibly it was @wabi-sabi ???

 

[hmnr asg]

Definitely. I feel super awful for the first hour after waking up. After that is regular awful.

 

[Pyrrhus]

Anyone else have this? That their first couple of hours when they wake up are their worst? Any ideas what the underlying cause could be?

Oh, yes!
Some people attribute this effect to inadequate morning cortisol levels.

Related discussion:

Is your worst fatigue in the morning too?
https://forums.phoenixrising.me/threads/is-your-worst-fatigue-in-the-morning-too.81272/

 

[Judee]

Some people attribute this effect to inadequate morning cortisol levels.

I don't know though. The two times I've done those 4x per day cortisol tests, it's always been slightly high in the morning for me. ???

So that's n=1 that it doesn't apply to anyway but I may be the odd one out.

 

[Pyrrhus]

So that's n=1 that it doesn't apply to anyway but I may be the odd one out.

It might be more than just N=1:

Why do I feel better in the evening? Cortisol, pain and insomnia issues
https://forums.phoenixrising.me/thr...ning-cortisol-pain-and-insomnia-issues.45483/

What I really don't understand is why I'm feeling always less exhausted in the evening than the rest of the day?

My cortisol is normal in the morning 7.32 (ref.range 2-10), low in the afternoon 1.41 (1.55-6) and very low in the evening 0.29 (1.15-4.85).

 

[wabi-sabi]

I want to say possibly it was @wabi-sabi ???

ooh, no. That's out of my budget. I use the step counter on my phone to help pace and try to stay under my energy envelope.

 

[wabi-sabi]

I feel super awful for the first hour after waking up. After that is regular awful.

I love how we conceptualize our lives like this!

What kind of awful do you feel today, small, medium, large, regular, or super? That's my new question to people.

 

[nerd]

Yes, I know this. When I stand up in this condition, I eventually feel hyperactive and towards midday, I fall into a hole where I can't think clearly like it feels when I take antihistamines. It doesn't happen when I prolong my sleep. By the way, this phenomenon applies regardless of my circadian rhythm, sleeping schedule, whether I take melatonin or sleeping aids or not. The smart people's advice "Oh, I know this when I go to bed too late or when I sleep too long" doesn't apply. I've tried too many times to get into a "normal" sleep cycle but my body won't tolerate it.

 

[Insomniac]

Anyone else have this? That their first couple of hours when they wake up are their worst? Any ideas what the underlying cause could be?

I was thinking about investing in an Oura ring to see the quality of my sleep and also oxygen saturation during the night. Perhaps it could be related to either one of those.

YES - so much worse after waking. I find it is worse if I exert the day or days before too.

 

[Haley]

My cardiologist said it's very common for people with orthostatic intolerance yo be more symptomatic of a morning, and nany oeople i know with POTS say they are worse if a morning. Maybe a piece if the puzzle for you?

 

[wabi-sabi]

Maybe a piece if the puzzle for you?

I think it is. I feel slightly more alive after fluiding and salting up. But how bad I feel in the morning also relates to how crashed I am.

 

[valentinelynx]

Yes.

I found a piece of writing of mine yesterday, from many years ago, describing my personal illness experience. It sounds so extremely awful that, if it weren't my own words, I think I might tend to believe the writer was being overly dramatic. The topic was how it felt to wake up in the morning. The description made it clear I felt utterly wretched on awakening and described the process of waking and getting out of bed. It would take about an hour just to move into the upright position, with my entire body so stiff and sore I could hardly move.

The good news is it's not that bad anymore. I've been ill now for 28 years. There may be many reasons for the change. Even before my craniocervical fusion last March that brought a lot of improvement in PEM, I wasn't that wretched in the morning anymore. I think part of it is that I gave up on a normal sleep pattern years ago. If I'm not working, I go to bed in the early morning and rest into the afternoon or evening. I sleep in periods of 2-4 hours at a time. When I was working (while ill) I'd try to get to bed in time to get about 5 hours of sleep before having to get up at about 5:20 AM and then nap for about 2 hours after work. If I sleep too long, the stiffness and soreness gets much worse.

Another reasons for improvement may be more effective pain management and some other treatments I've had over the years, including antibiotics for tick-borne disease. The main change may be that I had a major remission after 4 ½ years of illness (in 1997) and, although I relapsed in 2009, it didn't take me back to where I was at my worst.

It was eye-opening to read that old piece of journaling. Perhaps I'll share it if I get a chance.

 

[Husband of]

I feel worst (fatigue, lightheaded, generally not good) first thing in the morning when I wake up. I usually sleep around 8-10 hours per night. Never suffered from insomnia as many do, I always had the opposite of sleeping too much. I usually wake up and just have to lie in bed for an hour before I feel ready to start the day. This is unaffected by how much activity I have done the day before so not PEM related. I have noticed if I sleep 6 or 7 hours I wake up feeling more awake but then often have to nap later in the day as I get sleepy.

Anyone else have this? That their first couple of hours when they wake up are their worst? Any ideas what the underlying cause could be?

I was thinking about investing in an Oura ring to see the quality of my sleep and also oxygen saturation during the night. Perhaps it could be related to either one of those.

My wife is like this for sure, but feels a lot better after coffee. Do you drink coffee? I’m. Or suggesting you should if you don’t, as it could be my wife only feels better after coffee because she has a dependency. But then I imagine if you also could have a dependency, which became might make you feel worse prior to coffee?

I have read that for pots related morning awfulness you should put 4 inch blocks under the feet of your bed at the head end. Haven’t tried it though.

 

[Violeta]

I also feel worst in the morning. And the more deeply I sleep, the worse I feel. I get a sick headache, facial neuralgia, feel like I can't move, but I know that if I don't get up it will only get worse. It got much worse after having shingles.

I think orthostatic intolerance is the reason for me, thank you @Haley for bringing that up.
In reading about melatonin, I came across something that said that it can lower blood pressure, which might be why the orthostatic intolerance is worse in the morning. That might be why the coffee helps your wife, @Husband of. If I drink some coffee, it does help, too. I have been drinking pure decaf, but when I was adding some regular it seemed to help more. I am going to start adding more regular to the mix. For a while, drinking a small amount of coffee during the night for insomnia would actually help me go back to sleep. So I wonder if the low blood pressure can actually cause insomnia, too.

I've been taking Butcher's Broom for orthostatic intolerance, and I take that with coffee in the morning. That helps, too. I've already taken some at night, too, it can help with restless legs. I'm going to try taking it consistently at night to see if it helps with the morning awfulness.

Something else that I'm going to try when my supplements arrive is taking tyrosine and royal jelly in order to raise norepinephrine. I'm hoping that will help overall with the orthostatic intolerance.

 

[lenora]

I'm much better in the a.m., and fall off rapidly about 3:00 p.m. I can't talk on the phone after that time, for example, and often I'll go into the bedroom. Not to sleep or watch TV, but to read to help rejuvenate myself.

I'll go for an extended period of nights and days without any sleep....and then will fall asleep at the magical hour of 4:00 a.m. until perhaps 10:00 a.m. Sleeping pills, tinctures, nothing helps....I've been this way for probably 40 yrs. or so.

My BP is all over the place, high cholesterol with a lot of stents & more to come, and I just know that the sleep clinics are rather useless for a good many of us (unless you have obvious problems). I swear that even all these years later, you're sent on your way with a prescription for Trazodone.

I'm presently bedridden and that doesn't help anything....still, what choice is there? I just go until I literally pass out (usually with a hot cup of tea in my hand). A very strange way to live. Yes, mg. helps, calcium....but they'll help with things like RLS. I'll be checking all answers for new ideas. Yours Lenora.

 

[Violeta]

It definitely feels like toxic brain. I am trying to figure out as much as I can about Perrin's information and technique and AtlasProfilax. I think glymphatics is really important. I wonder if glymphatics stagnation, poor lymphatic drainage are the cause of the orthostatic intolerance.

I wonder if glymphatic stagnation, toxic brain, can be a cause of H-P-A axis dysfunction.

From atlasprofilax:

"A misalignment of the atlas can lead to continuous pressure on the spinal cord, nerves, blood vessels and lymphatic channels..."

 

[ezma24]

It definitely feels like toxic brain. I am trying to figure out as much as I can about Perrin's information and technique and AtlasProfilax. I think glymphatics is really important. I wonder if glymphatics stagnation, poor lymphatic drainage are the cause of the orthostatic intolerance.

I wonder if glymphatic stagnation, toxic brain, can be a cause of H-P-A axis dysfunction.

From atlasprofilax:

"A misalignment of the atlas can lead to continuous pressure on the spinal cord, nerves, blood vessels and lymphatic channels..."

I have wondered about Perrin technique, I have had a whole body lymphatic drainage massage before but nothing around the neck which I'd be interested to try.
I have posted about PEM being reduced by submerging my head in hot water which I believe to be helping increase blood flow.

 

[wabi-sabi]

I have read that for pots related morning awfulness you should put 4 inch blocks under the feet of your bed at the head end. Haven’t tried it though.

You can also just sleep on a stack of pillows so your head is elevated. I do this and it helps my back pain as well.

I do find caffeine helps a bit, but too much and I really can't sleep. It's a challenge to hit the right balance.

 

[nerd]

What seems to help against this in my case is a lukewarm bath before going to bed. However, with negative side effects during the day, as I'll explain in my next post.