Feeling frustrated all i want to do is sleep all the time

I know my Crest Scleroderma is out of remission but what I need to know is it normal to feel very tired all the time its like i'm not getting enough sleep even though I have been sleeping like 12 hours a night please let me know if anyone else is dealing with this i'm getting frustrated as I can''t have a life cause all I do is sleep

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Yes, sleeping so much ruins my life too! it's so depressing! I wouldn't even mind if I slept well, but I wake up a thousand times in pain! then when I do finally wake up and feel knackered!

I don't know what to do about it either!

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Yes it is very normal to sleep like that some days I sleep I sleep 10 to 12 hours as needed. Sometimes I only sleep 8 hours. But yes it does happen.
Here is a link to the Scleroderma Foundation for how to cope with scleroderma, there is alot of different articles there. I hope you can us the information.

http://www.scleroderma.org/medical/coping.shtm

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I'm so glad I'm not the only one who sleeps all the time. I feel so guilty. The sadest part is sometimes I feel like life is passing me by. I work fulltime and have a very active 8 yr old. If I overdue it I get sick and really feel tired. Sam thanks for the website I will check it out when I have a minute.
Janet

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I guess I will joined the crowd, just recently I have been sleeping a lot. I try to keep busy so I won't fall asleep, even at times I can't seem to keep my eyes open. So I take a nap. "Wrong thing to do", then I can't sleep at night.

Doris

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Nuvigil might help? Read on...
Yes, sleeping is as much of an issue as the many other symptoms we endure. If the phone didn't ring and I didn't need to go someplace, I'd sleep 18 hrs/day. I take Lunesta at night because I can't fall asleep or stay asleep at night - but no matter how much/little sleep I get at night, I can sleep all day.
Just tonight my Rheumo suggested Nuvigil to help me fight the sleepiness. I'll keep you posted.

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Thank you each and everyone of you for writing back it is nice to finally have people to talk with that understands what each one is going through I am so Thankful for finding this page and Sam thank you for the website I will check that out. I wish each and everyone of you much happiness and may God be with you each and everyday.

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wow i thought i was the only one who slept alot since my sd is full force...and im on disability..i wouldnt feel bad at all if i was working with small kids its hard and if u have time to sleep go for it..i think we need rest having this awful disease...and i cant sleep on my on i have to take ambien but i do notice when i work out i sleep well and get up in a decent hour...

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I too have CREST and now some lung involvement. I had an extensive workout several docs over the past two months and was referred to do a sleep study. I have sleep apnea and now have my new second best friend the CPAP. Turns out I was waking up (not knowing) an average of 27 times per hour. I have now had the CPAP for a week now and am still getting used to it but I have talked to others and can't wait to feel more refreshed during the day and hoping to not want to lay down and sleep all the time!

Also, my Vitamin D was very low and I am now taking additional Vitamin D plus eating lots of high Vitamin D foods.
I'm hopeful you will be pointed in the right direction as I think I have been.
Never give up!

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Thank you all for your comments and I wish each and everyone of the very best in life and may God be with each and everyone of you. I do also have to take something to help me and yes your right with this illness sleep is the best thing.I seen my primary doc today and ended up having to do alot of blood test again a chest xray and have to get a endoscopy done and something called a PFTS done and then have to see the rheumatology doc. This illness is so painfull as im sure as many other illnesses are painfull also I just wish they would find a cure for this. May God BLess each and everyone of you and I am so glad to have found this site as it is nice to be able to communicate with other people that knows what i'm talking about and learn new things also so again thank u very much

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Hello, I sleep a lot too. I thought I was lazy but it seems like this is common among people with scleroderma. I have pulmonary fibrosis and I am on oxygen 24/7. My cough wakes me up during the night. But I think it is because my mouth gets dry, for some reason while asleep i breathe trough my mouth and that is why I cough.

but there was time when i would spend the whole day in bed. I was very depressed. If I needed to go out I would be sleepy all the time. In fact i had an accident while driving because I felt asleep when we stopped for the red light! it wasnt bad at all, but was scary.

You should talk with your pulmonologist about your troubles sleeping, maybe you need CPAP. Or maybe you are depressed. Also people with acid reflux havfe trouble sleeping.

I just remembered that when i was on prednisone it was hard to fall asleep.

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yes krus it is now 1:51am and i am still awake i am on prednisone and do not sleep well..i took me an ambien an hour ago and still not sleep...loi..i am so ready to be off this mess till i dont no wat to do..but right now i have pain in my risk and it would be worse if i was off not to mention my shortness of breath and coughing..yuck yuck yuck..but oh well we still got to thank god for the help of meds...

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HI, I sleep 10-12 hrs a night and HAVE to nap at least once daily. My children are older and I don't work and for that I am greatful. The problem I have with my sleeping (although I do wake feeling rested) between the plaquenil giving me nightmares and the fibromyalgia the sleep is restless. I have a feeling if it wasn't I would not need the naps. I feel like a bear hibernating in the winter. Best wishes all.

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