Sjogrens Sleep Study

[Bucky]

Probably one of the top five complaints of us Sjoggies is fatigue.  Many of us don't sleep well.  For me, the sleep I do get isn't something I wake up in the morning thinking to myself, "ahhh, I feel refreshed, well rested, ready for the days challenges".  HA!

I'm just wondering if maybe we consciously or unconsciously sabotage our sleep habits?

Things that would influence our ability to sleep at night:

-  Evening news with such grim coverage and very little "good" news.

-  Too much caffeine or eating too late in the evening.

-  Staying up too late using all the electronic devices in our lives, i.e., cell phones, computers, laptops, etc.

-  Poor management of our time.

-  Too much stimulation prior to bed (meaning our minds are busy with all the things we need to be doing tomorrow, or the things we didn't get to today. Phone calls late in the evening, reading information (newspapers, internet, books, etc.) that are upsetting, etc.

-  Physical aches and pains that cause us to toss and turn, toss and turn.

-  If you are fortunate enough to take a nap, napping too long instead of limiting "nap time" to an hour or less.

-  Temperature in house / bedroom.

-  Family responsibilities.

I'm sure the list could go on and on.

I'd like to propose for us Sjoggies to conduct a little sleep study among ourselves and for the next two weeks (Jan. 7 - 21), try and pay attention to the obstacles that might be contributing to your poor sleep patterns.  If you don't have a "bed time", aim to keep one and see if that doesn't help you feel more rested.

It's always my "goal" to be in bed by 10:30 - 11:00 p.m., but many nights it's midnight or after.  When you work and the alarm goes off at 6:25 a.m. the night is very short.     I know for myself, my "average" of 5 - 6 hrs. of sleep a night isn't enough.  I go to bed tired, I wake up tired. 

I know for myself I spend waaaaaay too much time on the computer - a "quick" 15 minutes turns into hours and hours.    I'm going to really try during this sleep study to limit my computer time ("back away from the computer") and see if it doesn't help improve my sleep.

So, please consider participating in this study trying to narrow down some of the "possible" obstacles that cause our poor sleep.  Share your findings and maybe we can see a pattern.

Good Luck . . . sweet dreams . . . . zzzzzzzzzzzzzzzz

Bucky

P.S.  I had this post all planned out earlier today before I saw the "Insomnia" thread - so, we'll see what kind of feedback we get along the "sleep" lines. 

[MaryBee7]

Bucky, I love you!      I am happy to do this, there is strength in numbers!

[eija]

I'm undergoing a series of doc appointments because they're trying to evaluate the degree of my working ability. In that context I'm facing a two-week sleeping diary... Haven't received the papers yet but I'm telling you I don't like it a bit. I've always been one to live in Finland but according to some American time zone! Plus I'm not disciplined at all :/

[reesatay]

I just completed a sleep study and it showed I have mild sleep apnea.  Mild sleep apnea is 7-15 episodes an hour.  So this means my sleep is being disrupted several times an hour.  No wonder I don't feel rested.  Some people can have even more episodes a night so it might be worth it to get a sleep study if you don't feel rested after a nights sleep.  I'm not sure how I'm going to treat this since it is so mild. I'm not sure a CPAP machine would be worth the trouble so looking into a dental device. 

I'm finding my dry mouth symptoms are worse in the evening and especially when I try to sleep.  I wonder if I'm sleeping with my mouth open?  When I wake up during the night I'm very dry so end up sipping on water or spraying Biotin in my mouth.  Extra water also means extra trips to the bathroom too.  I also take a pilocarpine pill most times mid sleep cycle because it effects run out so quickly.  I'm also running a humidifier but it doesn't seem to help much. 

My biggest down fall is the TV in the bedroom.  I like to sit on my bed in the evening because it is so warm and cozy so then end up staying up too late and if I wake up during the night I'll switch it on to kill some time.  I'm pretty sure a sleep doc would say this is a no no. 

[LisaMarie]

I've done a little research on my own on my sleep habits.  One thing that has set off triggers for me not to be able to fall asleep is playing games on my computer, ipad or phone.  Strains the eyes to the point that they "dance" at night and I have troubles falling asleep.  I like to play them because I think it helps my brain in some ways.  But I limit it now more than I used to. 

The other thing I noticed is that I tend to have sleepless nights a night or two before my period starts.

[Katybarstool]

Another good thread, Mrs Bucky. Thank you.

My biggest sleep robber is pain in my hip/leg during the night. I take vaious painkillers during the day, and amitriptline and codeine when I get into bed between about 10 and 1030. Yet I regularly wake up in pain around 3 am. SO have to take more codeine. I just wish it lasted longer.

Kathyx

[susanep]

During my sleep study I had 112 episodes an hour. I have severe sleep apnea. It's scary to think about.

susanep

[MaryBee7]

I was gung ho to get either a CPAP or a dental appliance for my mild apnea.  Both out of my league -- cost wise.  The mouth appliances are $3000-$5000              and supposedly our dentist here who does these is only one of 5 in the US.     Or that was a selling point from their end of the phone. 

My question to myself more than to anyone else is...how did all the snorers hundreds of years ago make it out alive....they didn't have machines to help them sleep.  A friend has a CPAP and says he rips it off his face 4 or 5 times a night without even realizing it....he's a very heavy sleeper. 

[susanep]

MaryBee I have wondered that too, but I did have an uncle who died in a chair when taking a nap, and some thought he may have had sleep apnea, and didn't know he needed something.

My mom also ask me that question once. She wondered if mine was that bad, then how come I never ended up in the hospital or worse.

All I know is my husband said he would hear me wake up during the night gasping when I did, so I guess it just wasn't my time to go.

I can remember myself waking up gasping for air.

susanep

[Bucky]

Anyone having any "ah ha" moments when you stopped and thought about your sleep habits and those things that rob us of our sleep?

No big discoveries here . . . I know the biggest obstacle to me is I don't go to bed early enough in the evening to get enough sleep.

Last night . .. . I mean, this morning, I finally got to bed at 3 a.m. and my alarm is set for 6:23 a.m.!      I always have good intentions of getting to bed "early", but one thing leads to another and another and before you know it, it's 3 a.m.

I'm the kind of person that I just can't write down on a piece of paper - check on ________, (fill in the blank) the next day.  I will go to bed and not stop thinking of that particular thing, so I might as well stay up and get it done or I won't sleep anyhow worrying about it.  Grrrrrrrr

I am a light sleeper and hear everything!  My boys are sound sleepers so somebody has to be the night watchman!     It's also a carry over of my Mom duties - to listen if anybody needs anything.  It can be an exhausting job! 

One thing I did find that helped, was last year I bought a new mattress.  The one we got when we got married was a firm (which I like), years later with all the aches and pains in the shoulders, hips, etc. it was too hard.  I bought a softer one and it feels a lot better and I don't experience quite all the aches and pains when laying on my side.

I do have to pat myself on the back as I was "going to" do my Wii fitness test in the wee morning hours this morning and decided against it.  Some times it's okay to skip stuff!   

Bucky - who would like to throw away every clock in the house and just do things when I want to do them and not have to answer to a clock all the time!!

[drylady]

I was doing well with sleep a few months ago. I take temazepam for sleep. But since I started taking a beta blocker my sleep is not too great. Does anyone have problems with sleep on beta blockers?

[brooklyntina]

Great idea- I'm game! Personally I sleep in two shifts, almost always waking to go to the bathroom or because my pounding heart wakes me up. Its nearly impossible to fall back asleep for 2-4 hours. As a result I often go to bed at midnight and wake up at noon and get only 6 or 7 hours sleep. It's insane. And if I don't have my morning free to do the second shift I'm a disaster. It's totally disfunctional.

I am totally guilty of playing with my phone in bed though :/

[MaryBee7]

I'm assuming in a Big Way that my sleep and life in general will even out after I get a very stressful job out of my life....which is in about 3 weeks.  Can't imagine that everything would not will improve, even the sun will look brighter 

[ktfabian]

Well, seeing as it's 2:57 am and my alarm is set for 4:15 am to make the 3 hours trip to Philadelphia for my Rituxan (don't worry, my hubby is driving) I couldn't help but reply to this topic.

I've been a lousy sleeper since injuring my back in '92, which I believe was the catalyst that started me on the long road to fibromyalgia, then Sjogren's, then so on and so on and so on...well, you get my point. I've been so tired at times that I have literally fallen asleep standing at my kitchen counter (I fell over), on the toilet (I fell off) and even while walking down the stairs (I fell down).

A sleep study about 3 years ago turned up pretty serious sleep apnea, both obstructive and central, with close to 100 episodes an hour. I was set up with a BiPap machine (which I never really got used to) but my insurance took it back after I couldn't use it enough hours a month for their liking. I would use it for a few days, then get an ear infection and have to stop for ten days. Back on for a week then off for another 10 days. Now, they've decided they want me to try again. To be honest, with all the other pain and discomfort I experience on a daily and nightly basis, I really don't want to. I said I would consider wearing oxygen at night, but I don't think I want to use the machine, but they act as if this is not a choice I can make for myself.

Too many nights, like tonight, I'm just too uncomfortable to sleep. They actually have a card in the machine that registers how much time I use it each night. If I don't use it according to their rules, I get a lecture from the doctor. I'm 52 years old. I know the risks of untreated sleep apnea. I've been working hard to lose weight (25lbs so far since Sept.) to at least affect the obstructive sleep apnea. I think I should have the right to decide whether or not I want to spend my nights tethered to a machine and being monitored by my insurance!

That being said, my mom is yelling at me to get to bed (only kidding!). I wish I could sleep like a normal person, but normal just isn't a word I can use to describe much about my life anymore.

Good night,
Tracy