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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Up All Nite, Sleep All Day

Carrigon

Senior Member
Messages
808
Location
PA, USA
Cannot regulate my sleeping hours. And now it's all messed up again. I'm awake all night long and sleeping during the day. And I might sleep three or four hours, then I'm up awhile, then I have to go back to sleep. And by the time I get up, it's like five thirty pm.

I've never been able to regulate my sleeping hours with this disease. Not in all these years. Even when I manage to get it almost normal, it never lasts.

Anyone else in the all niter's club?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I go through periods of being awake at night, then sleep all day. However, I sleep in one large block and don't wake up (unless in pain or I'm disrupted).

In my case it's a familial trait. Most of us would rather follow that pattern. We have a lot of ME-like disease in my family. The ones who have the signs of ME or look the same all have the night owl trait.

We find that this pattern returns the most refreshing sleep. Although the ones with ME don't have refreshing sleep - it's just better. Trying to change this results in worse health for us all.

A major problem when trying to fit in with school/work/family etc.

If this is not the case for you have you tried to change your pattern? What wakes you up?

Ideas I've heard in the past include sleep drugs, antihistamines, melatonin, gradually changing your sleep time, taking P-serine (Seriphos at night), food at night.

Really sympathise. Must be frustrating.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
My hormones are totally messed up. And I can't take birthcontrol pills or anything, it just messes them up more. I had great success on Ortho Tri Cylen years ago, but they only gave me Trinessa in recent years and it was awful. They claimed it was the generic of Ortho, but I had a terrible reaction to it and my insurance refuses to cover Ortho. My doctor wanted to give me a different one, but the insurance refused to pay for that, too. And given the bad reaction I had, I wouldn't try again.

I had irregular bleeding for years and years ever since I got sick. This is the first year I was finally able to stop it through diet. But now I have the opposite where I don't think I've had a period in a month.

I was told I'm low estrogen and high testosterone.
 

leaves

Senior Member
Messages
1,193
A lot of herbs (curcumin, resetvetrol, quercetin)?reduce estrogen. As well as high dose zinc. Boron increases it.
I haven't had periods in 10 years but 3 gm of acetyl carnitine cured this. I'm now taking pregnanelone to increase my estrogen which is still low.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Carrigon, this circadian problem is so common in long term ME/CFS patients that I think it could be diagnostic of late stage ME. Initially I had insomnia. Then circadian dysruption. Then what fits the description of non-24 hour circadian disorder. Now I am moving into stage four, which does not even have a name - I go through episodes when my days are four to eight hours long - wake, sleep, wake, sleep. These bouts have so far only lasted a week or two, but it may increase.

Like ukxmrv I find that if I fight my circadian pattern I am much worse off. Everything gets worse, including my neurally mediated hypotension (I don't have POTS).

I have seen this sleep pattern in many long term patients. Quite a number of these patients are male. It can make it hard to fit in with the waking world - I have a choice on increased incapacity (when my physical capacity is already low) and act in the world, or ignore the world and fell a little better than I would have. If I fight sleep patterns long enough, my cognitive function also declines, and I can lose the ability to speak.

If you are able to work within your sleep patterns, and sleep when you can, you might well feel better. It is worth trying.

Bye
Alex
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
I wouldn't say I'm in the "all nighter's club", the way I put it is that my sleep cycles independantly of night and day. I'm just as likely to be awake during the night as I am during the day, and just as likely to be asleep during the day as during the night. The position of the sun (or rather, the earth's rotation) has no bearing on when my body is ready to sleep.

The only difference is a do sleep a little better at night, but that's probably because there's less noise disrupting me.

I have tried many, many times over the years to force my body to sleep on a proper schedule, to no avail. I become severely sleep deprived, my cognitive function goes way down, it's completely miserable. A few times a new doctor has insisted I get "disciplined" with my sleep schedule, and I have humored them in order to demonstrate that I genuinely cannot change it. They would watch as I grew worse and worse and they finally admitted that I should just sleep whenever I can. Sometimes I can "nudge" my schedule a bit by staying awake longer or by taking pain meds and muscle relaxants for sleeping a little earlier than I normally would, but I have to be careful to not attempt too much of a change or it doesn't work and then I'm really messed up.

If not interrupted my body does have a rythem to sleep, it just doesn't happen to coincide with the earth's rotation. :p

Once, back when I still had a mild case and was somewhat normal-ish, I decided to go a week on a very strict schedule. I had been to a sleep specialist, I implemented all suggestions, I went to bed at 10 pm and lay there in the dark until I fell asleep, and forced myself to get up at 9 am. Every night I lay awake until around 3 or 4 am, and then forced myself to get up 5 or 6 hours later. This happened night after night after night. By the time the weekend came around I was very sleep deprived and finally decided I'd let myself sleep in as long as I needed to.

I slept for 18 hours straight.

This is the story I tell to people who claim that if I just did the right things then my body would conform to a given schedule. It doesn't. It won't. There's no "hump" to get over and then things fall into place...sleep is this amazing thing that doesn't happen automatically, so you learn to take what you can get when you can get it and be thankful you have it at all.

How strange our lives must seem to others...