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Obstructive Sleep Apnea


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#1 Sheryl

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Posted 06 December 2006 - 12:16 PM

Looks like I need to have a sleep over at U of M so they can research and test my sleep habits.
I was telling my rheumatologist about my overwhelming fatigue. How it can come on instantly and just drain me to where I have to lie down and get instant sleep. A hard deep sleep. Or, I yawn alot and then get where I am jerking myself awake as I am reading or doing computer work. Or, am afraid to drive on days that I have these high fatigue days. As I am slapping myself, singing or making a racket or driving with the windows down to stay awake. I have had to get out of the car and walk a few feet and get back inside. The urge to sleep is aweful. I thought I slept too much. I think I get a good nights rest. But, aparently I am not. My doctor, said that this is not a Scleroderma event. Oh. I thought there were a lot of us with this overwhelming fatigue thing. If you all reply I will print this out and next time I see my rheumatologist I will show her it isn't just me. So write and tell me how you fight this fatigue, Please? Also, has anyone been through this sleep study? What takes place? I haven't gotten my call to tell me when it is taking place. It better be soon. I am heading South to warmer weather. 2 Months in Florida should just about do it, and I can come home and handle the rest of winter here in Michigan.
Strength and Warmth,
Sheryl

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#2 scleroguy

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Posted 06 December 2006 - 01:48 PM

Hi Sheryl,

I get this overwhelming fatigue thing you describe. I mostly get it at night, so I always think of it as being really sleepy. It can come on instantly and be overwhelming as you said. I try not to drive at night for this reason.

My case may be different because I don't sleep well. I usually can only get 5 hours of sleep before pain and discomfort wake me. I can only sleep comfortably in certain positions, and when I turn during the night it causes me to wake up. I take naps during the day, but sometimes it hurts to sleep.

I believe that both the fatigue and problems sleeping are related to the disease. I often describe the pain and discomfort in my chest and stomach as something yucky going on inside. :o I think that is a reasonable description of systemic slceroderma.

Hope this helps, and enjoy your trip to warmer weather.
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#3 Sherion

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Posted 06 December 2006 - 02:29 PM

Sheryl, I also get that extreme fatigue. The only thing I can do is take long naps. I asked my dr and he said it could be either from the sclero, fibromyalgia or the fact that I'm anemic. The combination is overwhelming at times. I also don't sleep good at night. I wake up every two or three hours all night. I don't stand much of a chance at being rested!!
Good luck on your sleep study! Maybe the results will be of help to you.

Sherion

#4 Sweet

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Posted 06 December 2006 - 02:48 PM

Hey,

I do get the severe fatigue, but I have a problem sleeping. It's my main goal everyday "Try to sleep" and can't. I average 3-4 hours a sleep a night and normally unable to take a nap. It's not that I'm not tired I am, but I just can't sleep due to many reasons. 1. my husbands snoring. 2 Pain, 3 RLS, 4. my mind won't shut off.

I plan only one "event" so to speak per day. It may just be going to the grocery store, OR, going to the doctor, OR having lunch with a friend. Afterwards, I'm exhausted, shaky and almost feel disoriented or flu like symptoms. I have to mellow out the rest of the day, a lot of that time is on the couch, but I don't necessarily fall asleep.


Not sure if that helped, but that's my day!

Warm and gentle hugs,

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#5 R'egene

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Posted 06 December 2006 - 05:27 PM

Hi Sheryl,

It's nice to hear im not the only one with extreme fatigue and having to go to sleep in the daytime. When I do take these naps I am also in a deep sleep like you are. The only way I could stay awake is to walk around but that makes me more fatigued. I don't sleep at night though like you. I stay up all night until about 5am. I get up about 7 or 8 am and do the things I need to do, but even when I do get a good night sleep I am still extremely sleepy and fatigue during the day. Your not the only one. Tell your rheumatologist we're here to support you.


Regene
Birmingham, AL

#6 emmie

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Posted 06 December 2006 - 05:53 PM

Hi Sheryl,

I'm another one with that hit me with a brick fatigue. I sleep a lot but it's not restful sleep. I have very active sleep---related to my encephalopathy; I get uncomfortable and wake up as many of us do etc etc.

My rheumatologist also had me go for a sleep study because she just couldn't imagine all of this fatigue. (All I read about is overwhelming fatigue being a hallmark of autoimmune diseases, but oh well...). Anyway, they will put a gazillion leads on your head and make a cute pony tail out of them; some leads on your chest and some on your legs. Somehow they manage to get these all roped together and as out of your way as possible so you can get in bed and sleep.

The rooms are usually made to be more "homelike" than a hospital room. I actually didn't have any trouble falling asleep and of course thought I would. The following morning you get up and go home! I took a hat because I had been warned that my hair would be full of goo from the leads and it was! Also, be sure to wear pj's or a sleep shirt that buttons down the front--just much easier to manage.

My results showed mild apnea; not enough to treat and something else a bit off--like my brain :-) but nothing that accounted for the fatigue. Good luck to you and let us know what you find out. And I'd love to take me and my raynauds to warmer weather too!

xoxo emmie

#7 LisaBulman

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Posted 07 December 2006 - 03:05 AM

Hi everyone,
I'll join the club here. I am also exhausted during the day. It has gotten worse since September. The kids went back to school and I thought I would have tons of free time and be bored. I found myself busy then exhausted. Around 12 pm I would need to lay down but I was finding my self out cold for 2 hours or so. It started to worry me, not because of the sleeping but because I thought I would miss the bus in the afternoon! Since then I have started to set my alarm so I will wake up. I don't sleep well at night either but I have been taking Ambien for almost 3 years now. I only take 2.5mg and it works wonders. It allows me to fall asleep and if I wake up I can generally get back to sleep in the middle of the night. Before the ambien I would sleep for two hours, wake up because of pain and not go back to sleep for the rest of the night. I was at my dr last week and I was describing my fatigue and pure exhaustion. He ran some tests and I am waiting to hear back from him. I also need an echo because he said it could be my heart.

As for the sleep study I have never had one, but my hubby has had two. He has severe sleep apnea and snores (no wonder I don't sleep)! He said it is awful because with all the things hooked up to you, you never really sleep well.

Please let us know how it goes!

Hugs,
Lisa
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#8 Sheryl

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Posted 07 December 2006 - 04:27 AM

Thanks for your replies. I usually wake up about 5 times during the night to just roll over, change position, and try to get comfortable again. I usually, get out of bed at least once to use the restroom. I don't have a problem getting back to sleep most of the time lately.
For the past two years it was just the opposite. I would go to bed around midnight and lay awake or in and out of short naps most of the night. Sometimes lay wide awake until about 4 or 5 in the morning. Then I would finally drift off to sleep until 7 ish.
I think I am getting more than enough sleep especially with the afternoon knockouts. This isn't an everyday thing. It may go on for two or three days. Then I get about 3 or 4 great days of normalcy. Then, I am back to dozing at my computer, extream fatigue that I just can't function so I slink towards a place to lay flat. I also, have to set an alarm if I don't want to sleep to long. Oh! The wierd things that keep popping up. Thanks, for the heads up on what to wear to my PJ party at the U of M sight. I got a date. It is January 3rd. I filled out about 3 double sided pages of questions. Now, I just have to figure out a way to tell my husband. He thinks all this stuff is a bunch of bunk and a way to pad the doctors pockets. I hate doing things and not telling him. But, I also hate hearing all his retoric. I'm siking myself up to decide if he should be made aware. I stay at my moms house once or twice a month to help her out so the being away from home isn't a problem. I just don't like feeling like I need to be sneaky. Oh! Help Sheryl
Strength and Warmth,
Sheryl

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#9 janey

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Posted 07 December 2006 - 04:40 AM

Sheryl,
Can't wait to hear the results of you sleep study. I hope you get some great information from it.

husband - My mother always taught me "What he doesn't know won't hurt him!" :D Of course by now my hubby has heard this so many times that he always knows that I'm keeping something from him. Like your husband, he thinks a lot of things are phooey like when I went to an acupuncturist for my hot flashes (one treatment 4 months ago and not one hot flash since). Of course I didn't tell him about it until two weeks later when he said "I notice you haven't been getting any hot flashes lately."
:P

Fortunately, at this point in our marriage and in the course of my illness, he knows that he is someone that I need to bounce ideas off of but NOT the person that makes the finally decision. This is my body, my disease - not his. He doesn't always agree and he still gets a little upset when he finds out after the fact that I've changed something, but he always comes around and is that solid support system, He's also that snuggle bunny when I need one.

Big Hugs,
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#10 annkd

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Posted 07 December 2006 - 05:33 AM

Hi Sheryl: Just so happens that I just got home from having a sleep study. It was done at the hospital and it was interesting to say the least. I don't think I slept very much (as usual). I'm sure this represented pretty well my general problem. I needed four blankets because I was so cold (typical). All the wires are a bit wierd and yup, you get a lot of goo in your hair. I checked in about 9 pm and left about 6 am. My visit with my neurologist a week ago prompted the sleep study. I just don't sleep. I am so exhausted all the time and my brain is just mush. I personally believe this is the result of a combination of factors. Scleroderma/fibro/osteo arthritis.... this has gone on for so many years. I'll let you know the outcome of the study. Best of luck. -Ann

#11 Laura

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Posted 07 December 2006 - 02:08 PM

Sheryl,

I'm also very fatigued all the time. It's a tired I just can't describe to anyone. I've worked night shift for 12 years and never had a problem. I will be going to day shift soon to see if that helps me. I will also be having a sleep study done soon to rule out apnea. I can sleep for 14 hours and still wake exhausted the same if I slept 7-9 hours. I also wake up frequently to turn. Sometimes it's every hour. I also have really wild vivid dreams that I feel don't let me rest. I'm always going going in my dreams.

Take care,

Laura

#12 Piper

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Posted 08 December 2006 - 03:54 AM

Hi Sheryl, I'm just joining in to say that I'm another who has a terrible urge to sleep sometimes during the day. I will be driving along and when it comes over me I have an awful urge to pull over for a short nap. If it happens when I'm at home and I sit down I'll be out cold for 20 to 30 minutes. After that I'm fine again. I've often wondered if it wasn't narcolepsy but I've never been tested for it. I don't sleep well at night either due to pain and lately peripheral neuropathy. My Dr. said it might be chronic fatigue as I also have fibromyalgia.
I hope you find some answers to help you.
Take care, Hugs, Piper

#13 Sheryl

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Posted 08 December 2006 - 04:13 AM

Maybe when we all get our sleep apnea test done and have some results we can all learn what they mean. My husband thinks that my habits are no different than his and that I am just getting older and older people take naps. Ha! If he only knew the feeling that comes over us. The strange weight, weighing your head down and making you want to curl up and get a deep sleep. Except you don't want to lay down because you haven't been out of bed but maybe an hour at the most. Well, Laura when you get your study done we can possibly put all of our results together and see if and what the study really tells each of us. I guess I might have to call in for my results when I get to Florida. Don't know if I am ready anyways to start sleeping with a machine that makes noise all night and that would definetly keep me awake. If we all have this fatigue from the Scleroderma then the test might not tell us much anyways. Though it may appease my doctor. Thanks, everyone for your replies. I am going to use them to prove to my doctor, that I am not the only one out here having this situation if it is needed next time the discussion comes up. Since I just saw her I won't see her again until April most likely. I will let you know though when I learn anything. Hope everyone has a NON-lathargic day. :-)
Strength and Warmth,
Sheryl

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#14 peanut

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Posted 08 December 2006 - 05:40 AM

Oh my how ironic. I'm sitting at work taking a moment to catch up here on the board. I close my eyes and the next thing I know I'm sleeping. At work! I've been doing this all week. I always get 8+ hours of sleep, which should be more than sufficient? I also have problems sleeping so I've been taking melatonin. I was taking ambient but it made me fiercely grouchy with no REM sleep. Now, I dream and I think I get REM sleep but I’m beginning to wonder because on the weekends I pass out for 12-14 hours with 4-hour naps.

I never had sleep issues before my diagnosis. I thought it was the meds but maybe they’re sclero related?

Hopefully I won’t fall asleep again.
And if I do, hopefully my boss doesn’t see.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#15 Sheryl

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Posted 08 December 2006 - 06:29 AM

Sometimes I wonder if it is the meds also. But, I don't take anything at the moment that causes one to be tired. Wake up you can't sleep while you are at work girlfriend. Sheryl
Strength and Warmth,
Sheryl

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#16 peanut

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Posted 08 December 2006 - 06:45 AM

I know. I'm on my second cup of caffeinated tea, which doesn't help my GERD but is the only thing that wakes me up.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#17 Laura

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Posted 08 December 2006 - 02:15 PM

Sheryl,

Once the results are in we will have to discuss them. I have to call my doctor next week to see when my test is scheduled.

I hope you have a great vacation. I also hope you have wonderful weather!

Take care,

Laura

#18 barefut

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Posted 08 December 2006 - 06:48 PM

Sheryl,

Your sleep pattern sounds EXACTLY like mine. I'm sure I have at least mild apnea because I sometimes wake myself up with a gasp for air.

I do also get fatigued but not as often and not as severe since I started Cellcept in Feb. I used to get the 'brick wall fatigue' where I was just totally useless. Now those days are fewer thank goodness.

I can differentiate between my fatigue and my lack of sleep tiredness now. When I'm fatigued, I also feel like someone beat me with a baseball bat.

When I'm tired, I could close my eyes and be asleep in 30 seconds. I have little ones at home so I can't just take a nap whenever I want to. One day I sat down while the kids were watching cartoons and I didn't even remember closing my eyes but my son woke me up about 20 minutes later out of a deep sleep. That's kinda scary. I didn't even KNOW I was THAT tired! (Now THAT'S tired!) :lol:

Keep us posted on your sleepover.

Nite-nite
Barefut