How much do you sleep??

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

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Re: How much do you sleep??

Postby PhillMc » Thu Jul 26, 2012 11:14 am

I need a lot of sleep, i find it very difficult to get to sleep though and have pills to help but it can take me anywhere between 1hr and 4hrs to get off to sleep. The ideal amount for me is 8-10 hours through the week and more at weekends, on that amount i feel ok, less and i feel rubbish and this week i've only had about 6 hours a night and feel dreadful.
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Re: How much do you sleep??

Postby cec57 » Sun Sep 02, 2012 9:04 pm

I wish I could sleep more, but can only manage around 4-5 hours at a time. I usually wake up in pain or bursting for the loo. Once I've been up to go to the loo can't get comfortable in bed again so get up. :(
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Re: How much do you sleep??

Postby poppy » Mon Sep 03, 2012 1:16 am

i sleep for 1 or 2 hours at a time usually. oramorph can make me sleep 2 to 3 hours but then i'm really drowsy & feel like i have a bad hangover
pain is just weakness leaving the body (try to believe it, it helps)
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Re: How much do you sleep??

Postby mazza111 » Mon Sep 03, 2012 8:07 am

9 hours at night, and 1-2 during the day. I know that is a lot, but can you believe I still feel tired all the time?

Stacey on the other hand, is 1-2 hours at a time, then occasionally she'll just crash.. and there's no waking her when she crashes.
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Re: How much do you sleep??

Postby nat05 » Mon Sep 03, 2012 6:59 pm

I'd say I'm a combination of previous posts. Need copious amounts of sleep and hard to wake (like blaadyblah, who is v hard to wake up, even with coffee!) I can easily sleep 12-15 hours & often still feel its not enough. Some GPs I've seen think I should let body go with what it does whilst others say I'm hypersomniac (literally sleep til woken up, sleep for hrs) & need to limit it.

Was much worse during teacher training @ weekends I'd sleep for 12-14 hrs easily & cram in planning & be asleep by 9/10pm on school nights. When I finished I spent about 1month just sleeping. When I managed to teach I was asleep @6pm & trying to get into school for just after 7, didn't last too long tho as after one term I was pretty ill & had to quit.

it varies with seasons & I can be very light sleeper when there are bright objects or early morning sunlight. Unfortunately after alcohol I tend to wake v early then get back to sleep about 8/9.
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Powered by fairy dust - could explain a few things now i think about it tho!
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Re: How much do you sleep??

Postby victoria » Tue Sep 04, 2012 3:56 am

Hmm. I am also a natural night owl, which tends to confuse the situation a lot. When left to my own devices I tend to sleep 8-10 hours, but I always found I needed less sleep when allowed to function with my natural hours (roughly 10:30 AM-2:00 AM). That doesn't always happen, and I thought real morning schedules were unworkable until my last job, which had me getting up at 6:20 AM. I soon found that I could do this quite comfortably with 5.5 -6 hours' sleep, which was kind of scary, but felt worse if I tried to get more sleep. Now I think that's why all the previous attempts at making me adjust to a morning schedule failed, since they relied on dialing back my bedtime (before midnight is pretty much a lost cause unless I'm really sick or exhausted) and tweaking my hours so I would get 8 hours' sleep running 3-4 hours earlier. It never worked, and now I think it was because my sleep patterns will never match up right if I try to go for a 7-8 hour allotment with a wake-up time of 6-7:30 AM. It also won't work right if I go to bed really early and get more sleep, like 9-10 hours' worth, and then get up early in the morning. Midnight or 1:00 PM to 6:20 is apparently quite workable :S So how much sleep I need seems to depend almost entirely on what hour I need to get up.
31 years old, with Ehlers-Danlos Syndrome, probably type II
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Re: How much do you sleep??

Postby sheppeyescapee » Tue Sep 04, 2012 11:57 am

Lately quite a lot of sleep for me. 8-10 at night and then another 2-3 during the day. After a few days like that I have a day where I pretty much only sleep.
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: How much do you sleep??

Postby Nickety » Tue Sep 04, 2012 9:27 pm

Oh my goodness this was such a relief to find! I too find that I need loads of sleep and didn't know why - I've ALWAYS needed more sleep (even sleeping through from the first night I was born!) and now typically wake up after 10 hours. I get more like 6 - 7 hours during the week and have just started a very stressful job with longer working hours so my quality of sleep has also been reduced.

Does anyone have any tips for getting round this, or are there any official websites I can use to show my boss why I really need to start my day later? Or do I just need to 'man up' and get on with it, catching up on my sleep deficit at the weekend?
23yr old in full-time employment. Benign hypermobility diagnosed Dec 2012 at UCHL. Beighton score 9/9
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Re: How much do you sleep??

Postby balot » Sat Oct 27, 2012 9:21 pm

I need to sleep a lot, which is frustrating because sometimes I feel like I'm sleeping my life away. I usually need between 8-10 hours a night, and less when my symptoms aren't so bad.
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Re: How much do you sleep??

Postby sheppeyescapee » Sat Oct 27, 2012 9:53 pm

Anywhere between 4-15hrs. Average 10-12. Sometimes I even have to have a nap in the afternoon as well.
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: How much do you sleep??

Postby trekster » Sun Oct 28, 2012 12:42 am

If i have between 10 and 12 hours i feel very rested and much more functional than if i had less. Problem is this is unrealistic to have this much sleep so i wait until im really tired (as insomniacs guides recommend) then go to bed. i find it takes me up to 4 hours to drop off due to my unawareness of my bodily needs.
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HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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Re: How much do you sleep??

Postby gila » Sun Oct 28, 2012 10:18 am

even pre being "ill with hms" waking up by myself, i.e. without alarm, I always slept 10-12 hrs, could manage some days in a row with less, much less/even no sleep at times, but then would need a big sleep in or become foggy brained, hyperclumsy or would catch a cold etc
becoming "ill with hms" more and more need for sleep crept in- at my worst I totalled 16-18hrs out of 24 (including unavoidable day time napping)

and... :( ...sheppey, like you I found no amount of trying to pace made any difference...at least not for years :( and trying to fight sleep, not nap etc ...just wasnt poss, I d just end up conking out in/at the most inappropriate places/times...

but after some 5yrs in total ....I realized I d wake up "brain awake" ( body always takes a bit longer :wink: to fully function) and that after some 8-9 hrs and that s my normal now :D

and weirdly...I was a total night owl, even as a kid, now...I m tired by 10-11pm, read a bit, fall asleep and wake between 7-8.30
xxg
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Re: How much do you sleep??

Postby bendyneck » Sun Oct 28, 2012 12:09 pm

I have always been an insomniac and used to only get about five hours sleep a night which was nowhere near enough, I used to be awake for several hours in the night. Since I started on Amitriptyline I have an average of about seven hours sleep a night which is much better quality of sleep and I don't seem to wake up as much, certainly I don't lie awake for hours or have to get up and go and sit in the kitchen and watch TV anymore. I have an app on my phone called sleep cycle which records my sleep patterns and It has been very interesting following the changes in my sleep patterns since I started on Amitripyline.
migraines, fatigue, multiple chemical sensitivities, gluten and lactose intolerance, bursitis, ulna nerve pain, hypermobility, and possibly POTS.
Finally Diagnosed with HMS/EDS on 5th September 2012 by Professor Grahame
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