I am curious if others have difficulty getting their brain to work in the mornings. I don’t sleep well at all and get very hot at nights. I don’t have a tolerance for heat at all anymore and not sure how to explain it but I feel like the head pressure/fog etc is so severe in the mornings I can’t function. I get up very early usually but have recently had to change my schedule. Its like no madder how hard I try to get up I can’t.
Sorry you're dealing with this too. Yes. On my worst days, I am in such a fog I feels I'm sleep walking. After my shower, I am completely worn own but then have to go to work. Not sleeping in the heat is also a problem for me which only aggravates things. So yes, you are not alone in this. Thankfully, I've had better days lately but currently am in a rough patch/flare and dealing with this. Keeping a ceiling fan on (even in winter) cools my room down a bit and wearing summer pajamas helps too.
I don't know if what I experience is exactly what you are talking about, but I think it is similar. I often wake up in the morning about five or six and start drifting off mentally. One second I am awake and alert watching the news and then I feel like I am falling asleep again. Then I am kind of jolted back to a wakeful state. It is a continuing thing, happening throughout the morning until 10 or 11 a.m. It is confusing and hard to explain. It is beginning to worry me a little bit because it sometimes starts up again in the early evening. Does anyone else have anything similar to this taking place?
Thomas Franklin
That is definately something like I am talking about! Its becoming difficult to make it to work on time, my work place has allowed me to work from home some but I try not to take advantage of it. Lately it takes everything I have to get up and moving I try but like you said I am in an in an out of sleeping state for a couple hrs in the morning. I tell myself I am getting up next thing I know I am waking agsin. My family (ie 13 yr old daughter) thinks I am crazy.
It is crazy Calla. I can't explain it and it scares me. I guess it is just another of the weird symptoms lupus forces us to live with. Has your doctor given you any possible answers as to why this happens?
Thomas
Calla Lilly said:
That is definately something like I am talking about! Its becoming difficult to make it to work on time, my work place has allowed me to work from home some but I try not to take advantage of it. Lately it takes everything I have to get up and moving I try but like you said I am in an in an out of sleeping state for a couple hrs in the morning. I tell myself I am getting up next thing I know I am waking agsin. My family (ie 13 yr old daughter) thinks I am crazy.
I haven’t talked to rheumy about it but I go to a neurologist on Dec 4. How about your dr?
I go through this a lot too. I actually lose time, suddenly waking up again not knowing or remembering what I was doing before, the scariest part of this is sometimes I won't remember driving, almost like a black out, needless to say I drive very little now, I'm not on any medications at all so I assume its just the lupus fog, my daughter thinks it might be seizures of some kind. As for the heat, I've had night sweats forever, I had a total hysterectomy about 30 years ago for cancer, I sleep with a ceiling fan and the a/c set at 75 at night, I've been told the night sweats are more likely caused by poor oxygenation at night while sleeping, I'm supposed to be on oxygen 6L/HR 24/7 needless to say it doesn't make it any better and more often than not I am non compliant.
I also have a horrible time with mornings! I use an alarm clock, but I either hit the snooze button continuously or sleep right through it. When I do get up, I am stiff all over and my mind is foggy. Sometimes I take my meds and five minutes later I can't remember if I took them or not. During the height of my symptoms, I would sort of wake up and tell myself to get out of bed, but I just couldn't, and spent days in bed drifting in and out of sleep.
Usually I’m fine in the morning, it’s the afternoon that I have to worry about. Its like my brain goes right out the door. I forget things, I don’t remember where I am, I forget how to do simple everyday tasks, and I can’t retain any information either.
Its all very scary how this affects the brain. My daughter has lost patience with me as she has no understanding and gets frustrated I forget things, have difficulty helping her with her homework, need help around the house (I am a single mom and try to work ten hr days plus drive an hr to and from work). She is past excepting all this is cuz I am sick and its harder for me to deal with knowing I am also dissapointing her.
My experience has been in the first year it would take my brain a couple of hours to wake up and not infrequently, I would get up and go right back to bed.
I seem to be in a good non-flare phase now, plus I retired and went on disability so I’m not a slave to an alarm clock any more. I get up when I feel like it and my brain is ready. I think part of it is because I can lay in bed and gradually wake up. So, there is hope that it can get better!
I still have the mid-afternoon brain shut-down and need to sleep, but not nearly as often as before.
I can’t emphasize enough how much the elimination of job stress has made for me. I never imagined I could quit work and survive but I’m managing! I also didn’t realize just how much my job was stressing me out, probably because I had been doing it for so long I was used to it.
Hi my name is Adeline and I read your post, I been in a situation at work I a lot of stress from them do to my call off they want to fire me I don’t have any other Income km a single person with no other Income. Reading your post made feel that there’s hope . I’m 47 years old how old were you when this happen to you?
I think it must be Lupus related. All my life I have been an early morning person. As soon as I woke up in the morning I was ready to go. Now I am not. I make all my appointments for the afternoon, hoping that by then I will have my wits about me and that I won't be feeling to bad.
Patrick
I struggle also. I cant do early morning at all. The heat puts me to bed. I set my ac at 62 an love winter when its 55 in my room. I keep cool an do late evening events
hang in there
jj
I get hot and sweaty during the night as well. I also make my appointments past 10 AM. I wake up early in the morning but I laying bed for a couple hours because I can’t get up. I don’t sleep well either and dream all night long. It seems like I don’t get enough rest
I have a problem with brain, body, joints everything in the mornings. I have a hard time getting up and moving period. No one really understands. I hate it, I want more energy, I want to be alert and a go getter in the mornings but just can't. So you are not alone.
Unfortunately, extreme fatigue is all too common among Lupus patients. I often regret scheduling appointments in the morning. This is because I have to medicate myself in order to sleep, and end up feeling sluggish the next morning. Also, the meds wear off by about 5 am, which means I’m either tired all day, or I have to take a nap. Not a normal life. Thank God I’m retired!
I feel so sorry for Lupus sufferers with young children. I can’t stand heat or humidity, either
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Thabk you all…it atleast helps knowing I am not alone. In everyday life I truly feel it and get very little support/understanding. My mom understands the most as her mom passed from heart and kidney failure brought on by lupus but now that she is picking up my slack with my daughter and even my grocery shopping I feel her getting more frustrated. Im 36 and work long hrs making sure my daughter has everything she needs plus my medical bills and I hate the I give all I have to working but most nights till U get home I am worthless and now with not being able to get going in the mornings its making it that much harder.
Calla, yep…mornings are hard, I never schedule anything before noon! 
One of the most important things we need to address is our sleep, as for me, It took a while but I now have a perfect combonation of meds that get me to and keep me asleep…most nights. As for tolerating heat, Im with you…I cant tolerate it in anyway…thats up to you how best to keep your environment cool. But if your body is just heating up, you may think about getting all of your hormones tested, its a simple blood test.