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SuperGiv
11-26-2008, 04:37 AM
In the mornings im really struggling to get out of bed for two reasons:
Firstly my body feels asleep if you get me, its still heavy and achey
and secondly, my eyes struggle to open, so i end up falling back to sleep for hours, which i never used to do.
The thing thats annoying is that before i had lupus i would get up at 7am go to bed at midnight, but now im going to bed at half ten at night and getting up at 11am, and any earlier seems impossible?!

Has anyone else experienced this?

KathyW1958
11-26-2008, 06:35 AM
Hi,
I have big time. I am wondering if you are on medications for your Lupus? I go to be pretty early when I know that I have to be up in the morning and boy is it a struggle sometimes. Have you talked to your doctor about this problem?

Hugs,
Kathy

rob
11-26-2008, 07:07 AM
I have this problem almost every day. I call it "lead blanket" fatigue. It's opressive. I used to work just fine on 5 or 6 hours of sleep. Now, 12 hours of sleep and I'm still tired. Not much fun. I have the added problem of not being able to sleep well, so some days I just wander around in a daze.

SuperGiv
11-26-2008, 07:15 AM
Im going on some medication soon, but not yet as i have to see some other person first, but said other person hasnt sent me an appointment yet :( What you both describe is exactly what i feel, especially rob with the 'daze' some days im just so tired im completely not with it and its so annoying grr.
I told the doctor but the past few weeks its got a lot worse, so i'll have to tell him when i see him in feb or when i see this specialist nurse whenever she gets round to sorting an appointment!!

KathyW1958
11-26-2008, 07:33 AM
Hi,
Why are they holding up on giving you an appointment? I think that that is sad to say the least. Is there any way that you can get them to speed up the process of getting you in as soon as possible. I have days like Rob and you too where I walk around in a daze and nights when the pain is severe and I can not sleep. It is not fun at all.

Hugs,
Kathy

SandraC1983
11-26-2008, 08:53 AM
I GO THROUGH THAT MOSTLY EVERY MORNING ITS A HORRIBLE FEELING . I USE TO GET UP EVERY MORNING AND MAKE MY HUSBAND BREAKFAST AT 5 AM AND BE RUNNING AROUND MOST OF THE DAY. NOW I SAY HE CAN JUST GO TO MICKEY D'S CAUSE I CAN'T SEEM TO BRING MYSELF INTO GETTING UP YOU ARE NOT ALONE I THIS ONE.

SuperGiv
11-26-2008, 09:57 AM
Hi,
Why are they holding up on giving you an appointment? I think that that is sad to say the least. Is there any way that you can get them to speed up the process of getting you in as soon as possible. I have days like Rob and you too where I walk around in a daze and nights when the pain is severe and I can not sleep. It is not fun at all.

Hugs,
Kathy

Well basically its an admin error, my rheumy passed a note on to see this specialist nurse then i could have my prescription, but this specialist nurse hasn't sent the appt out, even though she wa meant to 2 weeks ago, my mum keeps ringing up and they keep saying there sending it out, but to no avail...

KathyW1958
11-26-2008, 10:52 AM
Hi,
I see now what you are saying. I thought that you were in the states. I hope though that they can get it sorted out and that you can get seen. I think it is terrible when a person has to pay for anothers errors and that is not right.

Hugs,
Kathy

ShellyZ
01-10-2009, 05:28 PM
I have some pretty bad sleep issues too. I just can't move, can't open my eyes. I have told my family that they need to make me get up and move about a bit, otherwise I just go back to sleep, and this can sometimes happen for as long as 2 days straight.
The lead blanket is a great explanation. My body is just too heavy to move. I don't know if it's meds, or something else, but it is not unsual for me to not be able to wake up on my own.

sits_inthe_corner
01-10-2009, 06:32 PM
I have a little cat....who weighs a ton.

Every morning at 4:30 he climbs on to my sore feet and walks up to my sore knees where he will stop and knead for a bit...then he'll walk up to my sore ribs...where he'll stomp around for a bit...then he lays accross the top of my head.

...and starts batting my nose. He is free to a good home and I'm sure he will be able to motivate you into getting up :lol:

Seriously though, I could sleep all day and all night ... there's not enough sleep time.

I wonder if it's because we are not really getting a deep good sleep because of pain issues?

NoodleMom
01-11-2009, 10:02 PM
I dont sleep well and then have difficulty waking up most days also. The hazy daze is on me too. My brain doesnt work so well either. That lupus brain fog ya know?
I hope that you can get in soon.

Kasey

Davita28
02-07-2009, 02:59 PM
i kind of have a different problem i can stay up all night and I mean i can watch the sun come up but then i am in a daze for the rest of the time with a headache. I had to get perscribed a low dose sleeping pill. but when i do go to sleep its never enough but i think thats because i have a 2 year old :?

TobyJug
02-07-2009, 03:05 PM
yeh I don't sleep much but when I wake up I feel like that....

So it's normal...

(for someone with Lupus I guess...) seen as everyone else feels like that..

ShellyZ
02-07-2009, 04:08 PM
I think it's normal for anyone with a chronic illness. At least, everyone that I have met.
No idea how to make it better, I've tried. I'm lucky enough to have family living with me, and like I said, I give them a specific time, and they will literally drag me outta bed. Make me stand, eat, drink, take meds, go potty, etc.
That doesn't mean I won't go back to bed shortly after, but at least I'm getting nutrition, even during the days I can't stay up.
As for sleeping at night, that's when I feel the worst, and sleep doesn't come easily. I read, watch tv, or mess online.
Doc won't give me sleeping meds, she thinks I should pray, or meditate instead. Lemme tell ya, those are great ideas, but they just don't work. My son is also an insomniac, can't guess where he got it from, so we have some good times at 3 or 4am!
I am in the process of trying to get my husband to understand that sleeping at night isn't working for me, and that he needs to be patient and help more during the day, it's not going so well, but I'm trying.
Ok, this is long enough to commiserate and say "YES, I understand!!"

Danica01
02-09-2009, 03:15 AM
How frustrating! It would be nice if all those things your doctor said actually worked for you but if they are not working they have to get you something to sleep! I can't sleep either and they don't understand that not only does it make the pain and heaviness worse........you also feel like you are loosing your mind. My family will suggest that I get up an move around more during the day but it is hard when you are still so tired and hurt from not getting enough rest. It is just a tough issue and at times it seems like a never ending battle.Let me know if you come across anything that actually helps you sleep!




I think it's normal for anyone with a chronic illness. At least, everyone that I have met.
No idea how to make it better, I've tried. I'm lucky enough to have family living with me, and like I said, I give them a specific time, and they will literally drag me outta bed. Make me stand, eat, drink, take meds, go potty, etc.
That doesn't mean I won't go back to bed shortly after, but at least I'm getting nutrition, even during the days I can't stay up.
As for sleeping at night, that's when I feel the worst, and sleep doesn't come easily. I read, watch tv, or mess online.
Doc won't give me sleeping meds, she thinks I should pray, or meditate instead. Lemme tell ya, those are great ideas, but they just don't work. My son is also an insomniac, can't guess where he got it from, so we have some good times at 3 or 4am!
I am in the process of trying to get my husband to understand that sleeping at night isn't working for me, and that he needs to be patient and help more during the day, it's not going so well, but I'm trying.
Ok, this is long enough to commiserate and say "YES, I understand!!"

Spanglishqueen
02-09-2009, 06:12 AM
Yes that is my biggest complaint..I tie it into the general fatigue. I have continued to complain how it is affecting my daily life and especially when I drive and they sent me to a sleep specialist and I have a sleep study next Monday. They think it could be Sleep apnea that is also contributing to the fatigue. :lol: Just yesterday I told my husband I sleep as much as the dogs now :P