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Posted 10/28/2021 7:57 PM (GMT 0)
Will extra sleep help me? I wonder sometimes if I’m just really low on sleep and it’s accumulated to making me feel like more crap than I already do. I’m always waking up, so I wonder if I should just say screw it and sleeping extra whenever I can.

Anybody have experience with this? I’m having a hard time with a schedule and the best I have been doing is sleep from 6 AM to 12 PM daily. That’s with at least 1 wake up, but sometimes 3 or 4, especially since I’m urinating all of the time. I also react to everything that I eat, so I’m working on what I react to as I go.

Thoughts? Advice? Thanks!
Posted 10/28/2021 8:08 PM (GMT 0)
What time do you go to bed? Are specific symptoms causing you to wake up frequently, or is it just having to urinate? Lack of sleep can definitely make symptoms worse.
Posted 10/28/2021 8:38 PM (GMT 0)
If you're only sleeping for six hours per day, and waking up multiple times in that span, then I think additional sleep is necessary (rather than extra). The body needs sleep to heal and repair, and healthy people need roughly eight hours, and it seems that chronically ill folks need at least eight hours per night, often more, and ideally uninterrupted.

Is anything other than needing to pee keeping you up? Do you go back to sleep easily after that?

What happens if you stop liquids by, say, midnight? Assuming a 6 a.m. bedtime, would you still have to get up to use the bathroom?

All of my symptoms are worse - often much, much worse - when I have not been getting enough sleep.
Posted 10/28/2021 8:59 PM (GMT 0)
sleep is also huge for me.
my partner recovered from this thing - but could always sleep properly 8-9hrs per night - i think it may have made the difference

6hrs is not enough - you definitely need more than you are getting - aim for 8hrs - if you cant get it in 1 stretch then get it any way you can to start with - but best if you can work towards to do it in one block - but bear in mind our bodies like routine so - whichever way you want to do it - make it a stable routine for best results.

my days are so much better when i sleep better - and i am averaging around 7-7.5hrs per night after a lot of work on it - but when i get 8 or a fraction more i always have better days - and it i can keep it at 8 for a few days i feel significantly better and tend to progress more in my recovery.

if i get less than 7 for a few days on the trot i go backwards - fatigue increases - even my walking pace slows down.

its been tough to get sleep to improve however
i have had to really focus on getting a good routine and doing every little thing i can to help
-sticking to a regular bedtime and routine helps
-getting some sunlight early in the day helps
-avoiding screens and PC work/phone screen for 2hrs before bed helps
-cool dark room for sleep
-limit liquids before bed so i don't have to get up for anything
-regular exercise helps
-supplements all seem to only play round the edges - the lifestyle stuff helps much more - but a couple help a very little bit

hope this helps
Posted 10/28/2021 11:13 PM (GMT 0)
“ Anybody have experience with this? I’m having a hard time with a schedule and the best I have been doing is sleep from 6 AM to 12 PM daily. That’s with at least 1 wake up, but sometimes 3 or 4, especially since I’m urinating all of the time. I also react to everything that I eat, so I’m working on what I react to as I go. “

Why don’t you go to bed before 6 am?




You could gradually start going to bed a little earlier.
Maybe try 5:30

Then after several weeks a bit earlier - 5:00

And so on.
Posted 10/29/2021 12:30 AM (GMT 0)
Lack of sleep is associated with high levels of inflammation. You can't get well without getting adequate sleep.
Posted 10/29/2021 4:46 AM (GMT 0)
As saraeli pointed out, there's a difference between additional sleep and extra sleep in this context.

Additional sleep to get, let's say, 8-9 hours of sleep, is helpful.

Extra sleep to get something like 12 hours of sleep, doesn't help. This is my own experience as I sleep way too much due to the fatigue.

In regards to when you sleep (the schedule itself) I haven't noticed much difference as long as I get the hours in. Your mileage might vary.

But if it's keeping you from getting sunlight, I would take Vitamin D.
Posted 10/29/2021 7:02 AM (GMT 0)
Sleep is very important and when you sleep is also very important where it’s a lot better to go to sleep say 11 pm – 5 am than 6 am – 12 am.
There are going to be things around your illness that are going to affect you, but you can still improve your sleep hygiene no matter what stage of illness you are in.

You have already gotten some advice but I would say that the most important thing would be to slowly shift to go to bed earlier and remove screen usage before you go to bed. Also, don’t consume food three hours before planned bedtime. You should shift very slowly by changing maybe 15 min and staying there for a while until you shift another 15 min. Getting sunlight in the morning after you wake up helps with shifting your circadian rhythm. By working on this, hopefully, both your quality of sleep and length should improve.
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