Sleep? How much is too much and how much is enough? - LUPUS UK

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Sleep? How much is too much and how much is enough?

Lara4228 profile image
9 Replies

Here is an interesting observation I have noticed.

My whole life, until I moved to Alberta, (which is a drastically drier air climate than Southern Ontario - which is intensely moist and extremely humid, especially being right at Lake Ontario), I needed 10-13 hours sleep, right from adolescents.

When I moved to Edmonton, I required only 6-8 hours.

Now that I am back in Hamilton, find myself completely unable to wake up to the world on less than 10 hours of sleep, except! When I went bush camping last week. I found 8 hours to be a happy medium, with feeling refreshed. (I went camping in Northeastern Ontario where the humidity isn't as bad as Southwestern but still there).

One other variable. I've been receiving B12 shots weekly (they only last 4-5 days, then the intense fatigue hits me). I find I am not refreshed once these shots wear off (upon waking).

I am heading back to Alberta for a short visit with my Dad. I am curious to see if my required sleep is less there.

However, my question to those her how much sleep do you require before you feel completely rested? What are your air mass conditions like?

My long hours of sleep always played havoc on my working life. I am always late (when living in Ontario, and always on time when living in Alberta).

If others experience this, how do you cope with it? The longer time needed for restful sleep (concern is, if I don't get my 10-12 hours, it will take a family member about 15-45 minutes to simply get me out of my slumber state and into semi-wakefulness state, then another hour after I physically lift my head off my pillow).

What is normal for you and what diagnosis do you have exactly and what are the ways you manage your sleep?

I want to work again, but am afraid of always being late (again).

Thanks :)

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9 Replies
minka profile image
minka

sleep i would say 8 hrs is ok but that just depends on sleep patern deep sleep at one point in the night you should wake reeling refreshed and that should be ok some of us on here are lucky to get4hrs without waking up with sweating or pain put somthing up asking how many hrs sleep do people get on site on average

littleeffie profile image
littleeffie

Sleep?

Hmm I think I have a distant memory of it😕

Pre illness kicking off I could get 6 to 7 hours and feel amazingly up for whatever life threw at me.

After my first flare /real full on symptoms that was I can't stay asleep for more than 3 hours without waking up.

Interesting about atmospheric difference with you though.Will be interesting to see other answers,

Cookiecutter76 profile image
Cookiecutter76

I live on the Isle of Man and need at least 8 hours sleep and an afternoon nap at the moment. However, on bad days it's like I never fully wake up. I've have had a flare over the last couple of years but lived here for years prior to the flare and could get by with just 7 hours before. I've noticed that I get more lupus symptoms such as aching and fatigue when there's a low pressure system over the Island and have to sleep more at those times. I have lupus and they've just found a pituitary tumour which they're investigating as it seems to be increasing my prolactin levels. I was working full time and sleeping all day Saturday and during the evenings but since my relapse I'm off work so just manage sleep by sleeping when I need to. I had a sleep study done recently to investigate if I had narcolepsy. It said I didn't but I that I was excessively sleepy as I fell to sleep very quickly on all the daytime nap tests. Best wishes! x

Lara4228 profile image
Lara4228 in reply to Cookiecutter76

I am not completely alone in this then. Whew. I've had 3 sleep studies, all tested me as borderline narcoleptic, sleep apnea. No medication or apparatus prescribed.

I am with you when you talk about how some days you feel as though you simply never seem to fully wake.

I'm finding this daunting on my day to day living. I hate it.

Cann profile image
Cann

I am one of these people needing a lot of sleep, too. Always needed at least 10 hours. My mother said I was a good baby because I slept all the time, but I wonder if it was something wrong. I have always been sensitive and have immune problems with all the symptoms of people diagnosed with lupus, but my doctor said it is very difficult to diagnose lupus and needs lots of testing. I gave up on the blood tests which showed hypothyroidism, thrombocytosis, anaemia and I had asthma, too, but found out I was allergic to dairy products. It is all very complicated and I found out that babies not breast-fed can be allergic to dairy and the lactose which I am and I wasn't breast fed - probably allergic to dairy all my life and that explains the bronchitis and then the asthma diagnosis. I was on inhalers for six years, but left off dairy on the advice of a naturopath when I was very ill and I don't suffer with asthma now. I also had bad joint pains and couldn't walk well and she suggested cutting out gluten and possibly all grains. I did that and I don't have joint pains now and walk miles.

I do need a lot of sleep though and I believe no-one can say what others need - we have to listen to our own bodies and a GP said to me once - needing a lot of sleep doesn't cause illness, but worrying about needing a lot of sleep does. If you find it hard to get up how about getting to bed earlier to get the hours of sleep you need.

I was always the last to get to work too, but made it before start time!

A lack of the required sleep can certainly cause health problems.

Hope you can work it all out.

Lara4228 profile image
Lara4228 in reply to Cann

Wow! Wonderful reply. I'm somewhat in the same boat as you, lactose intolerant as a child, still happens every now and then, couldn't breastfeed for the same reason, had childhood asthma, bronchitis about once every 10 months. Joint pain is just starting now and blood tests still won't show SLE lupus, however I do have DLE.

Thanks !

Cann profile image
Cann in reply to Lara4228

You sound similar to me - I had bad ear infections as a child and a burst ear-drum, but then dairy is mucus forming for those of us who are sensitive; I just never knew it then, nor did many others, I suspect!

andriajo profile image
andriajo

I live in Ohio and it seems all I want to do is sleep. I need 10 hrs to feel semi rested but some days I'll still be so exhausted I'll end up napping or going to bed really early resulting in a 15hr sleep for the following night. I've also had issues with tardiness at work which is embarrassing and frustrating because people don't understand why it's so hard to just be on time. I try to explain that I set my alarm and go to bed at a reasonable hour just like everyone else, the only difference is I just can't wake up. I have SLE but have not seen a rheumy for several years and have just managed the symptoms as they come but I know it's time to get back on some meds.

Lara4228 profile image
Lara4228 in reply to andriajo

Hi,

Since this post, I have been diagnosed with fibromyalgia (which accounts for some of my reason for oversleeping) but! I have also been diagnosed with ADHD, and upon discovery, I believe this diagnosis may be incorrect. I stumbled across a few sites about SPD, Sensory Processing Disorder, which seems much muchore fitting toy symptoms than ADHD. One of those symptoms is waking. The person never seems to want to wake up (me!!!!).

I've been sleep CBT courses, sleep clinics, seventeen alarm clocks, you name it. It just seemsy body and mind need to sleep...super excessively.

I've been trying so hard lately to adhere to a very strict sleeping schedule and so far it has been effective (only week 3 right now). But a HUGE help has been my partner who works swing shifts. He makes SURE I'm up in the morning, whether he goes to work, comes home from. work or hears my alarm go off. And NO NAPS. Ugh, it is darn impossible some days because of the fatigue, but I keep on trucking (even if I'm just a zombie sitting on the couch).

I now successfully sleep between 10-12 hours a day. Sometimes less but rarely more.

Yeah!

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