Need some help, incredibly ill in waking hours

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yeah: its awful to Come To.......

(awake, is a term I'm not sure applies to us)


I get up any number of times before I really get up, those lovely sessions of parked on the toilet, still sleep.

If not in PEM, I'll gradually- feel a bit like I might want to go on, late morning... but. by mid afternoon, no desire to go on is left.

Today was the best day I've had in weeks. Do I dare wash a load of clothes later?
 

Mary

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Im afraid of the mornings. Iam in incredibly ill upon waking. Its like the flu feeling times 100. It wears off a bit as the morning goes. This happens when I sleep at other places. It has gotten significantly worse over the past month.
Could your cortisol be low in the morning? This is quite common for many here. Though if this only happens when you sleep not in your own home, then I don't think it's low cortisol in the mornings. However, if you do have low morning cortisol, I understand that it's normal to feel better later in the day. It's easy to test morning cortisol levels.

If it only happens when you don't sleep in your own home, are there are any supplements or drugs that you don't take with you when you sleep away from home? I have an arsenal of stuff I take just to function, and I really don't do well without any of it so I have to lug it around if I go somewhere.
 
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Could your cortisol be low in the morning? This is quite common for many here. Though if this only happens when you sleep not in your own home, then I don't think it's low cortisol in the mornings. However, if you do have low morning cortisol, I understand that it's normal to feel better later in the day. It's easy to test morning cortisol levels.

If it only happens when you don't sleep in your own home, are there are any supplements or drugs that you don't take with you when you sleep away from home? I have an arsenal of stuff I take just to function, and I really don't do well without any of it so I have to lug it around if I go somewhere.
Thank you, do you recommend a specific brand of test, and are there cortisol supplements? This really has me worried as it's quite upsetting mentally and physically. It always happens early in the morning between 5:00 and 6:00, regardless wherever I sleep. at home or on the road
 

Mary

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Thank you, do you recommend a specific brand of test, and are there cortisol supplements? This really has me worried as it's quite upsetting mentally and physically. It always happens early in the morning between 5:00 and 6:00, regardless wherever I sleep. at home or on the road
Hi @maybe some day - I know of two cortisol tests. The one done most commonly by regular MDs measures your cortisol levels in the morning. There's another test, Adrenal Stress Index Test, which uses 4 saliva samples taken throughout the day/evening and which tells you how your levels rise and fall through the day/evening. Any doctor can order this test though, again, most commonly they just order the morning test. So if I were you, I would try to get testing of some type done.

If your levels are low in the morning, there are supplements and other things which can help. Here I'm out of my depth and other members could give you better info to on this. It might be best to get testing done first and then see what your doctor says and also you can run your test results by members here to see what has helped them if low cortisol is involved.
 

Tammy

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I agree with Mary...............it MIGHT have something to do with your adrenals. For cortisol levels/adrenal issues, I like Ashwagandha tincture (without alcohol).

I'm sorry you are feeling extra crummy.:( Sending hugs your way.
 
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Judee

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A couple months back I started to focus on body temps again (for a while anyway) and realized that early morning hours are when my temp drops really low.* One guy online says when this happens our bodies will release a lot of adrenaline to try to get the temps back up to a healthy range.

He's an engineer so not someone who is medical but he believes all that high adrenaline does damage to our body's systems.

It's made me start to wonder if that's why our mornings (or the first 2/3 of our days) are so lousy.

He has a protocol to try to reset the body temps similar to Wilson's temperature protocol because he (the engineer) says our temps can get locked into a low pattern after a trauma event like surgery. He believes it's a protective measure to try to help us survive future traumatic events but then it leaves us feelings lousy all the time.

Anyway, just a part of his protocol involves massively bundling up. I'm wondering if you could possibly try that as a way to blunt this horrible symptom for you. Just an idea anyway.

Edit: You could start at least by monitoring your temps throughout the day to see if yours drops significantly at that time a day. It might be a clue.

*Edit #2: I get a paradoxically reaction though. I will feel very warm but then when I take my temp at those times, it's the lowest of my day. That makes me think there may be something to that guy's "rush of adrenaline" idea.
 
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I think I did some cortisol test involving 24 hours and urine.

I think I did not ever really hear anything about the results, or I have forgotten suggesting nothing much turned up.

also, I recall I did the samples wrong. Its a tad complicated, so ME brain failed to take the 4 am measurement at the end of the session.

having no result from tests seems very common in my world.
 

lenora

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One thing I can assure you of is that sleeping meds absolutely do not work (for a great many of us, not just me). Oh, sure....for the first night, maybe even the second and then you're wide-awake from 2:00 a.m. on. Just a waste of time and money. I do wish I could give you better news on that front.

My sleeping patterns have changed once again, although one thing is certain: I can go 2,3 or 4 nights without sleep (or much of it), and then pass out for about 2 nights. I've never been able to find an answer....actually thought I may have been bipolar or the like, but nope.....that's not the reason.

That seems to be one of our problems....a big one at that. Sleeping patterns being disrupted (now maybe they are for the population on the whole as I'm only going by my husband and daughters. My husband can just close his eyes and fall asleep immediately. Sleeps almost all night long and is generally up at 6:30 a.m. feeling rested after being dazed for a short time. Not so for me, although I do everything possible to keep to a sleep schedule. But if you can't sleep, you can't sleep. I'm sure some people will have ideas for you to try. I wish you well. Yours, Lenora
 
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One guy online says when this happens our bodies will release a lot of adrenaline to try to get the temps back up to a healthy range.

He's an engineer so not someone who is medical but he believes all that high adrenaline does damage to our body's systems.

It's made me start to wonder if that's why our mornings (or the first 2/3 of our days) are so lousy.

He has a protocol to try to reset the body temps similar to Wilson's temperature protocol because he (the engineer) says our temps can get locked into a low pattern after a trauma event like surgery. He believes it's a protective measure to try to help us survive future traumatic events but then it leaves us feelings lousy all the time.

Anyway, just a part of his protocol involves massively bundling up.
@Judee Can you please give more detail on his protocol? When I got sick I got my temperature 1°C below normal and it never got back. It was the only symptom that indicated it was not 'all in my head'.
I read a lot about Wilson T3 protocol but was afraid to start without supervision. And Wilson is a kind of pariah so no endocrinologist will supervise it.
So I am very interested.
 

Judee

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@Judee Can you please give more detail on his protocol? When I got sick I got my temperature 1°C below normal and it never got back. It was the only symptom that indicated it was not 'all in my head'.
I read a lot about Wilson T3 protocol but was afraid to start without supervision. And Wilson is a kind of pariah so no endocrinologist will supervise it.
So I am very interested.
Here are some of his website pages: He's very long winded and slogging through what he writes can be difficult for the brain fogged.
http://www.fixlowbodytemp.com/
http://www.fixlowbodytemp.com/papers/
http://www.fixlowbodytemp.com/papers/LowTemp.htm

Also, I tried this again this year. I did manage to get my temp up sometimes with his program. When it was around 98.6F (37C) I did feel better. However, it made me feel really ill when it dropped again...that adrenaline rush. It was almost worse in some ways after experiencing what it felt like with the warmer temperature and feeling better.

Consequently, I think if I tried it again, I really would try to find a Wilson doctor if I could. https://www.wilsonssyndrome.com/patients/medical-providers/

Edit: Also it's a long shot but the Wilson thyroid meds need to be specially compounded. You could try contacting compounding pharmacies that do that and ask if they know of any doctors who prescribe the protocol and then contact them to find one who does virtual visits. I may go that route at some point.
 
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Hey, thanks a lot. I have an engineering background so it makes sense at 1st glance. Anyway, it is worth trying because no other protocols are around except Wilson's T3. And in my country there's no chance of meeting some endo who knows what it is.