Old 11-07-2017, 12:24 PM #1 (permalink)
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Default Non-24 sleep wake disorder, am I really the only one here who suffer with it?

I know the majority of Non-24 sufferer are blind people who suffering with absolute blindness.

But there are people with sight that can get it from their other conditions and fibro sadly is one of them.

My sleep schedules are so far out of bounce , it's not just living everyday in 25-26 hours a day anymore. Some day much less as 6 hours some day goes up to 30 hours cycle. But it never fail to move my sleep/wake schdule forward and turn my living life upside down literally.

To explain it correctly here are some of my normal day sleep schedule that I can't control just in this passed 7 days and the next day after will still keep moving forward in time. It often result in overlapping days and will continue to full circle which give me only twice a month to have a few normal night/day sleep wake like a normal person in the normal world.

Oct 31 :sleep 6 am / awake 3:30pm
Nov 1 : sleep 9:30 / awake 5 pm
Nov 2: sleep 10 am / awake 6 pm
Nov 3: sleep 12pm / awake 6 pm
Nov 4: sleep 1 pm/ awake 5 pm
Nov 5: sleep 2pm / awake 11:30 pm
Nov 6: sleep 3pm / awake 12 am

My melatonin and serotonin controls it all no matter how I tried to fight for many years since fibro took over my life , not that I every sleep well with this sleep cycle either cause I get almost every sleep disorders in the book except apnea . If I ever try to fight my non-24 everything will get a whole lot worse and will always ended up with dangerously prolong sleep deprivations. I failed light therapies, cause day/night doesn't effect my circadian clock no matter what I use ( alarm clock no effects) even my eating schedules had to suffer with it.

Am I really the only one here on this forum with fibro who have been living like this?

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Old 11-07-2017, 02:31 PM #2 (permalink)
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Default Re: Non-24 sleep wake disorder, am I really the only one here who suffer with it?

I am yet to go through a sleep study - another thing I dread because I read that I first have to come off the meds I now use for sleeping (which means lots of painful nights and unbearable days). But I have been reading all about sleep disorders these last few months. (part of my attempts to become a smart patient!)

All I can say, and I know this does not help you at all (sorry! I wish I could tell you the magic cure), is that I know I do not have this non-24 sleep disorder. I can only imagine how disorientating, how difficult it is to go through life living like that.

I do read that sleep disorders are now becoming priority from many medical perspectives and that there are many studies going on, with many trials, new medications on the way etc. I don't know when you were at a specialist the last time, but if you can (easy to say, I know), maybe go for a 2nd opinion. Maybe another sleep specialist will have more experience on it and may give you more tips, advice, therapy etc. Easy to say I know I know....

I have also been wondering how much my fibro-life motto of 'acceptance' is doable when it comes to sleep. (With me it is the waking up, or better said not being able to wake up no matter how many hours I sleep, this feeling of deep depression, darkness, being disorientated for hours once 'awake') It is so hard to accept yet another huge disability.... but what if there is no cure? what other option do we have?

I wish you nice dreams (I know, I know...another almost impossible wish....but let's not give up all hope
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Old 11-07-2017, 03:45 PM #3 (permalink)
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Default Re: Non-24 sleep wake disorder, am I really the only one here who suffer with it?

No I have a crazy sleep pattern also.
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Old 11-08-2017, 12:51 AM #4 (permalink)
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Default Re: Non-24 sleep wake disorder, am I really the only one here who suffer with it?

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Originally Posted by erober03 View Post
No I have a crazy sleep pattern also.
May I ask what's you sleep patterns are like?
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Old 11-08-2017, 09:34 AM #5 (permalink)
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Default Re: Non-24 sleep wake disorder, am I really the only one here who suffer with it?

I donít sleep well. I canít blame it solely on fibromyalgia though. It might have made it worse but it didnít cause it. My natural body clock runs on a night owl schedule. My most productive time of the day starts at 8:00PM. As they say Iím not a morning person and the world we live in isnít designed for us. Iím lucky I guess because I donít require a lot sleep or Iíve learned to function on less but either way I only need 6 hours to function well. For many years I had to take sleep meds but now I have gone off them but do take over the counter if I need anything. It is like the pain of fibromyalgia I think, over the years I have learned to deal. That doesnít help you much and sorry about that, my point is though that fibromyalgia isnít always the cause though Iíve found that is an easy go to for doctors now days. Be aware because when they do that they stop looking for other possible problems. Good luck.
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Old 11-08-2017, 03:12 PM #6 (permalink)
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Default Re: Non-24 sleep wake disorder, am I really the only one here who suffer with it?

Thank you vicky for your input and advices .

At the last attempted to fix my Non-24 was 2 years ago. I'm not on meds anymore for these reason , and I have been keeping my sleep log long enough to proof that it isn't temporary problem and completely separated from my other fibro condition. ( gotta do it if I plan to try getting disability again after failed)

My pattern of sleep have been moving forward exact behavior of non-24 with no other sleep disorder to match for more than 4 years but my mind wasn't clear enough at first do to all the meds and others I couldn't get a hold of what's what untill this year. In fact I didn't know or understand it much about non-24 till the begining of this year cause my doctor just put it off as fibro problem for so long ( my bad for fully trusting) .

On top of the fact that non-24 are mostly effect blind people is very hard to believe that a sighting person with fibro like me can really suffer with one.

So my last doctor only half believe about my non-24. And I'm too broke to fight for help at the moment.

Lots of info out there kept saying that if you can fix your sleep problem you'll have a good chance of beating fibro. After living with this kind of sleep pattern I'm not so sure anymore to be honest.
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Old 11-08-2017, 03:25 PM #7 (permalink)
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Default Re: Non-24 sleep wake disorder, am I really the only one here who suffer with it?

Thank you so much for your words Pshugs.

You are so right about that fibro may not have been the cause of my sleep disorder but it may have made it a whole lot worst.

I was a night person my self ever since I grew up . I do really love the morning light time, but couldn't function well during in the afternoon especially with painful light sensitivity eyes that I have . It might have lay doorman in my systems for a while just to go crazy at the first sigh when fibro got involved. Who knows.

So yeah I'm totally agreeing with you that most doctors seem to love throwing everything in to the same fibro basket case.
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