LONG POST-Help! New symptom can't sleep at night!

Ok, so I am an RN who has been out of work for over a year now. All the “normal” symptoms. Hair loss/rashes/pain/unexplained weight loss/pain/fatigue/memory loss/neuropathy…trust me- I could keep going! New symptom: soooooo tired during the day with pain and nausea. I feel totally exhausted and sick that I truly feel like I am on my death bed. 4 kids: 2,3,12,and 14. Problem is at 4 or 5 pm I start to feel great!..and wide awake…pain settles down and I’m ready to go! BUT I can’t fall asleep before 4am most of the time it’s closer to 5. I don’t sleep during the day even though I feel so tired-I can’t because of my little ones. They tried trazadone, clonazepam, and sonata.= NOTHING! then when I fall asleep, I could sleep through anything. I can’t seem to get up until 11. My husband bed meds me at 10 so I can move and get up in an hour. This has only been possible because he has been off work sick with pneumonia the past 3 weeks. I don’t know what I will do when he goes back! I am seeing Infectious Disease this week because my EBV, CMV, and HSV IgG are off the charts. I’m so confused??? What is happening to me?? I feel like I am seriously going crazy!!! Any thoughts/opinions would be greatly appreciated. I feel lost.

I’m having a similar problem. I’m sooo tired during the morning/day and almost can’t function until my husband gets home. I have 3 little ones. 3 months, 2.5 and 4. Then it goes away around the same time yours does. Then I’m wide awake until 12-1am. Which makes me tired again during the day. It’s a Vicious cycle. I go this week to get blood work done. I feel so bad because i WANT to play with my children, but most days I can’t. I just want to lay on the couch and rest. How do I do they with children so young?? I can’t. Since I get no rest, my body hurts and doesn’t have time to heal. It’s so frustrating :frowning:

Get your thyroid checked…make sure your sugars are ok…good luck…

Have you started any new medication? When I take prednisone at night I can’t sleep. Sleep deprivation can make you feel like you’re going crazy. I have chronic insomnia and I understand. My doctors say it’s stress. It’s also pain. I wish I had something more to offer. Best, Kim

Since starting prednisone I don’t sleep more than 3 hours a day. And it’s not a solid 3 hours. It is maddening. I hope you figure out what’s going on and feel better soon.

Weird but I do the same - up all night and dragging during the day Made worse cause as a nurse I was a night person But one thing I do is to NOT take drugs to help me sleep- they actually exacerbate the dragging feeling all day long I won't die from lack of sleep and usually after a night or two of no sleep will help to reverse the wacked out day night schedule you are on.

Hi Kimberly

I was going to ask about new medications like Kim. Most of us overlook a great resource - the pharmacist. Maybe you could talk to your pharmacist and see if there are any interactions/side affects that your meds could be causing. When your husband returns to work, could you get a family member to come stay with you for a week, or take the kids to day care for a week, so you could rest during the day for a few hours? Sounds like you are just so over tired, that your body can't relax, and your days and nights are confused right now. Please keep us posted on your next apts.

Hello everyone,

Thank you for your thoughts/suggestions:) I actually take my prednisone first thing in the morning. I have been on anywhere from 10mg-15mg where I am now and have been for 2 months. No new meds, even though I am on tons of them.

Poobie: I was a night shift nurse also, but I was seriously like a superwoman before I got sick a little over a year ago. None of my 4 kids have ever been in day care. I used to get home at 8am(my hubby would leave for work) and breastfeed the kids after my shift and just nap when they did. I never really needed too much sleep. Now,...that's all I want to do during the day.

I don't even take my rx pain meds too late because they actually wake me up-not make me tired. My neuropathy is getting worse...broke one of my toes and it barely hurt-so I taped it to it's neighbor. Unfortunately, It healed with a big ugggllly lump! lol. Thank goodness my Rheumy is great, and communicates with me via email. I sound crazy,,,even to myself. i was always super healthy my whole life, but since I first got sick it seems like I have something new wrong almost every month. I went from being a caretaker to needing my husband give me medication an hour before I have to be up just to uncurl, not be in pain, and function. I was the main breadwinner, and now I have been denied disability! UGHHHH! I will have to go to court-in like a year! With all the titers being off the charts for past virus's(that I was never diagnosed with) like mono---I think they are thinking chronic EBV also. This might have something to do with it.

Kim: Chronic insomnia! I'm sooo sorry. This past month has been horrible. And, people that have never had insomnia do not understand. I hare hearing the complaint "I'm so tired, or, i just can't deal with this head cold!" I hate to complain...I don't want to feel weak, or like a victim..., but this is getting ridiculous. I need to get back on a normal sleep/eat schedule.

Eating is the same way. The prednisone is not making me hungry like it used to. I have dropped from 120 to 98lbs with no explanation. They have checked my thyroid, all my nutritional labs,...no answer. I feel nauseas all day and hungry at night.

My next appt is with Infectious Disease on Thursday, and then a sleep study NEXT MONTH! I will try to keep you posted. I have always read everyone's posts, but don't post myself. I feel all your pains and hug you all from my heart. I just felt I had to get this out----to others that may actually understand. My hands are shaking as I type...which is new too---I just feel like I'm alone/dieing/confused/and crazy!

Thank you for taking your time to read my thoughts,


One more thing...does anyone have dermatomyositis?

My Rheumy mentioned this to me since my eyelids are now purple when not feeling well????

Lone Wolf....I can not thank you enough for taking your time to share your thoughts and your journey with me. I would like to discuss with you some things that have recently been brought to my attention from my sister in law. She just came home from receiving treatments in another city for cancer. She is now cancer free as of a week ago! My questions may be long, and I can not write any more now, as my little ones need my attention. I would like to send a private message,...but don't know how?

Thank you for your compassion,....sometimes it is the best medicine I can receive.

Thank you ALL for sharing with me. It has eased my mind and heart about posting on this board!

First of all, LOL, your “long” post is about 40% of my average post :wink: :wink: (Faladora means talkative in Portuguese… My capoeira nickname!) I’ll try to keep it brief for you… But it won’t be, because I have a ton to say about this issue and don’t have the time to painstakingly edit for conciseness like I would for formal writing! Bear with me, hope it’s an enjoyable and helpful read :wink:

I have this exact problem… But it’s a longstanding symptom for me that preceded my diagnosis for YEARS… Try back till middle school! I am one of those delayed sleep phase people in general… Also bipolar (likely etiology is NPSLE, but also family history of it), so sleep inversions are a risky chicken/egg problem. In middle school and high school, it meant doing most of my homework between 9pm and 2am (since I went to rigorous schools and took the toughest classes, usually this was 9 or 10 thru 1 or 2am nonstop.) I also started pulling my first academic all-nighters in 8th grade. Thing is, it was so easy for me to do, as long as I kept mentally engaged I wouldn’t get too sleepy to keep going, and we’re talking zero caffeine! I did have tea (often green) sometimes for this in college, but now I just don’t have any caffeine ever and have to be careful even with dark/real chocolate. In high school I could still get up at 7 for school every day. In college, classes starting earlier than 10:30 were miserable. By the end of college my attendance suffered greatly for morning classes, even 10:30 ones, as well as up to a week at a time for bouts severe flu-like, non-respiratory symptoms… (Flare, anyone?) That final year of college was the onset of many of my more severe symptoms, 4 yrs prior to my dx (though I had episodic symptoms since 12, raynaud’s since 5, plus a pain flare noted as “follow for connective tissue disease” at 8…) I’m sure many of us can find a retrospective like this when the pieces come together! I just actually read my entire medical record during my diagnosis process! I recommend it if you have it available. But then, I was about apply to (and probably get into) top medical schools, till I got so sick, then diagnosed and was fully aware of the need to slow down.

That year of diagnosis, 2012, I was living alone at first and later with a roommate who I wanted to only ask when severely needed (like bringing my plates of leftovers after my disastrous week-long adverse spinal tap reaction with simultaneous NPSLE flare… She drove me to my MRI nearby, but I took cabs for my tap in the next town over as well as crawled in and out of one for a later 5am ER visit, where I was treated as a gomer for coming in dramatically and without a caregiver/advocate!) So, I was on my own to mount the energy and tolerance of nausea to roll to my side and reach into my bedside table for meds. If I was even conscious enough to do so… Often this was waking up to an alarm or the sun starting to beat in through my window around 10:30 but falling helplessly back to sleep 3 or more times, often till 2pm. I still sleep till 2pm during flares, often midnight or 2am to noon or 2pm. And lol, the days of my rituxan infusions I sleep from 8pm to noon then nap again 2-8, etc! However, the severity I described above was pre-steroids, just on plaquenil, with thyroid and lamictal in the mornings, when my first rheumtologist had judged my case as “mild SLE” due to no kidneys etc. or severe joints or skin. He didn’t think NPSLE was possible except for seizures, strokes and organic psychosis, but actually there is a whole lot of inflammatory activity and symptomology that accumulates before those end stages (duh… Right?) Previous psychiatry that hadn’t checked for medical causes assumed my psychotic/confusional episode was bipolar onset, even though it could have been the fourth ACR to recognize my lupus 4yrs prior (grrr… why I read my whole medical record later on!) It was such a struggle to be living alone and 800 miles from family and long-time friends (I had just moved the the Bay Area from Seattle, where my Bay Area docs were unbiased enough about a lifetime history of “worried well” that they actually diagnosed me!) However, some of my new friends here were totally there for me and it made strong bonds to come back to after I had to bail for 6 months back in Seattle to get things under control, finally. And, needless to say, being alone meant I only had to worry about myself, not caring for any other family members, especially not young children! You are such a champ for sticking with it, but make sure you do rest enough to really get better, because it IS possible to make huge progress controlling the lupus if you really allow yourself to recover while you treat it. Drugs aren’t ever enough, lifestyle change is a huge part of the picture! Adjusting your sleep schedule is on the right track, but with as sick as you’re feeling, maybe you need to start with sleeping the hours you currently need to while another caretaker manages the family (hubby’s FMLA, grandparents, an older friend or neighbor whose kids are grown or who never had kids but loves them, a gung-ho early teen who will corral the kids for $8-10/hr and still be able to ask for your help with any difficult situation…) You need to get better before you can return to duty effectively, both at work and at home!!

Things really can make a big turnaround if you commit to aggressive medical AND self-care intervention! My lupus is now decently controlled now with Ritixan and low-ish doses of steroids and plaquenil and two anticonvulsants for my moods and as-needed diclofenac and lorazepam… You get the point :wink: But I can function most days to work part-time and go to school full-time (master’s prog in SLP, but so far just in the undergrad classes to catch up on requirements I didn’t meet in my non-speech & hearing sci undergrad degree. Right now I spend 0-4hrs a week studying outside of class, but that will change when I’m in the real master’s with clinical sand I’ll have to quit work!) Still, mornings are tough, I always need an hour from my first alarm to really be out the door or even getting ready, even on the best day. I work 11:30-8 2 days/wk but am nearly always late (which also shorten’s the shift and thus my late-eve fatigue… I start to get my energy after 8pm!!) On my school days last quarter I had to leave home by 8:15am, which was brutal and resulted in an failed attendance ratio of 4:2:1 for my 9am, 10am and 2pm classes, respectively. (Yes, I clinically study myself on a regular basis… :wink: ) This upcoming quarter the earliest starts at 10am (9:15 commute departure), which will be a lifesaver! Yet I know I’ll still have bad days and make heavy use of my student disability accommodations. The early school days of course contribute to the extra fatigue for work days, even though the schedule is pretty ideal for my typical 10-11 wake-up preferences. Part of why I picked SLP is being able to work later hours: hospital shifts, after-school, or in private practice anytime! Yet I want kids and that could be my downfall as it is yours!

The main thing, probably the ONLY thing, I’ve discovered as an effective re-set button for my sleep cycle when it marches forward out of control is acupuncture! The healthy people who tell me “just set your alarm early and diligently get up (implied: instead of being lazy) and you’ll get tired at the right time (implied: why haven’t you figured this out by the time you leave college and grow up?)” It’s probably my #1 infuriating comment from well-meaning people… The comment is fine, but the lack of receptiveness to my response that it isn’t that simple (“sure it is, just try!” Like I haven’t tried everything I can! “Try harder then (don’t give into the sloth…”) I think my mother actually used the term sloth with me on more than one occasion! But she’s said a lot of things far more damaging than that, like calling my whole illness a hypochondriacal publicity stunt to stay in denial of the borderline personality disorder she’s decided I have based on Wikipedia. She sent a secret letter about it to my psychiatrist, who shared it and promoted “coping with my mother and the stress she adds to all this” to the top of our session agendas! Enough said about whether my mother participates in my care… She’s out in Michigan happily with her second-family anyhow.

Ok, I’m rambling FAR too long. It’s probably because I’m writing as a wake-up activity today after being up till 5am last night. Once I get more awake, I get more wrapped up in the tangents (that late sleep cycle gets my hypomanic side stirring) and so on… Key points: YOU ARE NOT ALONE with these exasperating and socially rejected devastations to the life you once knew, and IF YOU REST AND WORK BACK FROM THERE, IT CAN GET MUCH BETTER! We have a hard time “forgiving” ourselves for giving up the fight or “giving into the sloth” as outsiders may see it. I saw it differently: fighting like hell for your health and future ability to return to duty (of whatever kind) by being resolute to rest and self-care (or caregiver-care, even better!) and impervious to the criticism of others. You deserve it, your family deserves it, and they need a break by diversifying support like I mentioned above :slight_smile: Please take care, I wish you the best!!!


PS Read “How to Be Sick: A Buddhist-inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard, a CFS patient whose likely chronic viral infection has not been identified (thus leading to even more peanut-gallery criticism!) It’s an extremely helpful practical tool that she wrote beautifully with painstaking dedication from her “office” in bed. She really has it bad, can’t even go on meditation retreats anymore. It’s short and sweet, too, probably won’t take you much longer than my post :wink:

Hey Ann,

This is one of the strategies I’ve tried on and off many times, but it hasn’t helped. Whether that’s user error (probably) or a refractory case I have (probably also!) Currently I very often use tech or do homework or make calls from bed (the only place I even have, in a shared apartment so small there’s no room for a couch! Plus privacy from my male same-aged roommate and his 7-yr old boy only when I’m in my room or he’s in his room…) Nonetheless, I sleep well and promptly many nights. The issue for me is the self-control to stop persisting at things that a) don’t even matter or b) should be attended to on the day after a good night’s rest…

The bedside list-making strategy is the obvious solution to the above, but also prone to backfiring… Once I start I usually compulsively dig through my iPhone calendar, emails, etc to make sure I don’t forget to put anything in the list and this forget to do it (the worry part of my persistence… The other part is intellectual activation, part of my bipolar pattern!) What would help would be:

A) functional daily hormonal patterns
B) stable moods
C) a functional frontal lobe/executive function to exert the self-control to modify behavior upstream through the above challenges and all the other lupus business (my health is my #1 priority, and often my behaviors are its enemy!)

So, I tend to self-describe my sleep issues as having a lot to do with the neuropsych part of my NPSLE.

The exhaustion in the morning is related to:

A) the loss of sleep
B) poor sleep quality (I’m also sorta fibro, which is notorious for this!), and
C) the fact that the inflammatory biochemical processes actually occur overnight when healthy bodies carry out cellular repair (using the same cellular processes that have gone haywire for us!)

I’m guessing you know a lot of that or maybe were even my informant on the helpful info :slight_smile: Thinking especially part C on cellular activity… But maybe I heard that elsewhere and I definitely did a lot of reading on it… Probably when I was in bed and should put the internet down to sleep!! BUT, this was pretty good as a concise response and useful post instead of too much narrative. Agreed? :wink: :wink: :wink:

Ann A. said:

Dear Kim,

Several months ago I blogged that my main goal was to reset my circadian rhythms so that I was waking up in the am rather than the pm, It took me months to get there. Then two weeks ago I caught a cold. In just a couple of days, I was back on the schedule you describe, So now I have to reset my internal clock again. In my case it is about teaching my body that the bed is for sleeping and nothing else. When I feel ill, I bring this tablet to bed - even though I know that I require darkness to sleep.

I am sitting in the bed reading at this moment. Bad Ann A. I must go back to getting up and moving to kitchen or the family room. My mind must convince my body that the bed is where I sleep. Once I am only using the bed for sleep, I fall asleep as soon as my head hits the pillow (when I do not fall asleep immediately I use some relaxation techniques -simple stuff like progressive relaxation). If I still do not fall asleep then I must get up and go to another spot in the house until I start to feel sleepy.)

It generally takes about one week of being awake at night -this time because of congestion- turn me into a person who does not feel alive until late afternoon. It takes at least three weeks to change that rhythm. I am taking the first step today. I long ago removed the television. But over the last couple weeks about four mobile devices have colonized my bedside tables. They must be evicted. And my day must include some PA. Tai Chi and TI here I come.

Did you ever work nights. When I first started nursing I worked nursing I worked nights for 10 years as soon as I went off work after working days for 3 years on days I went straight back to my night schedule. My mom lives with me so I have to be up with her she has dementia and other things. Let us know what the doctor finds.

first, Faladora, i need your name too!! i end up with too long of emails!!


You said very well, you were a SuperMom before and expect yourself to be now. I do not know any person healthy or not that can handle 4 children and not be exhausted!! My mom is healthy and says she went nuts at times with 4 kids!! She did not work outside the home till oldest was out of the house!

I agree about changing your sleeping patterns...so see what ever kind doctor or person that can help you with it. My husband is night owl...you have been one most likely all your life but if my sister (who also night owl) can get up and be in her office by 8, anyone can!! She does make up her lost sleep on weekends...that is her treat to herself but too to late. Like 9am instead of getting up at 5 or 6am.

You two younger kids are going to need child care, be it from your family members or professional day care, nanny or mixture of all, but you clearly cannot wake up now early and once your husband goes back to work they will be at risk. Unless, you can get up for them??

Here is another possibility that might explain why you cannot wake up is that you are over drugged. I am not saying it is something you wanted but something your doctors might have done since they either rather push a pill or are not working together. This happen to me...i was early raiser until i got very sick plus had some emotional trauma happen about the same time. One doctor, put me on bunch of drugs, i had side effects from some of those, so more drugs till i was on over 10 drugs. No even I did not take all them daily but a good number of them. Thankfully, one of my doctors kept at me saying i was on too many, and i finally found a good therapist who agreed. So i weaned myself off..took about a year.

So like you, i could no get up and now some 6 years later, i still have some problems with it on certain days plus i know my brain is very messed up from them. I did brain games etc..and it is back as to memory etc..but just joy is not there. I use to wake up feeling joyful...it has been gone all these years. That is something hard to lose.

Plus you are on pred pills. Just them alone have so many negative side effects with your emotions not even talking about the life threatening side effects. But they could be the entire root or good part of it. Either way, no way i will use steroids anymore unless i am dire need. So just something to think about or even ask your friends, husband and doctors what they think...your teenagers might be very honest.

I hope that you are not any longer on any of those drugs, trazadone, clonazepam and sonata..and that you never once took them together or with any pain medication other than like a NSAIDS. If you are taking those or any like any of them, stop as soon as safe. Wean off as needed but stop them. Just makes it harder to wake up and they do not help you sleep. Not in a healthy sleep pattern that is. Plus, the fact you cannot wake up from them, you could be putting yourself and your younger kids at risk if you are only one home besides them. Not worth it to risk their safety or yours so please stop them. There are many healthier options. They now even sell this bracelet that keeps tally about your sleep patterns so you might not need to have sleep over night. Amazon sales it and i believe it is less than $100 plus it records heart rate and think something else all night long.

The fact you feel great at 4 or 5 is very strange! I think it is good news for you. That you do feel good at 4 or 5 and are able to function fully until you go to bed is great news!! Could be something wrong with you that just takes a few weeks or longer of treatment and you are better! Polyrheumatica is one such illness. I hate to say this but it also could go along with being over medicated...could be drugs hit low point in your body and you begin to feel much better..or combination of things part drugs, part illness. But no one i know with lupus feels suddenly better at same time when going through a flare. They might have small ups and downs but not how you describe of feeling great. BUT that is good news that you do at all!!

So hopefully, you can think about being over medicated, get some child care help for the small ones once your husband goes back to work. You might also consider seeing another rheum. A fresh pair of eyes on your case might allow them to see something your doctor missed. Just like having someone check our work...we can bypass an error over and over but the new person spots it! Hopefully that might be possibility for you as well!!

Just one last thing...hope that your older two kids are not being stuck having to watch the younger ones while you are not well and your husband is not at home. I think it is great if they have set times to watch them daily even...for a hour or so..but not all the time. I just hate to have them grow up faster and take on responsibilities they do not want. If you can afford to pay them great...if not, i is their way of helping out with the house. But if they are helping with dinner, dishes etc plus the two younger ones...well it could be a lot for them. I am sure you are doing your best but i also get when we do not feel well we often do what is easiest not what is best for all. No one's fault...sick you are sick.

I really hope that they find out what is wrong and are able to help with sleeping problem. I hope you do not hear it as i think you are over medicated..i really do not have a clue. You just are doing similar signs of myself when i was us..but that does not mean it is same for you. I just also hate not to mention it and have you suffer longer.

I hope soon you are back to Super Mom but take it slower...my brother tried to keep being Super Dad and he kept ending up in ICU and eventually died. Sure if his wife had worked...he might still be here or at least some years longer. BUT i get they wanted her to stay home for the kids...so what happen..we all ended up taking care of them, aunts and grandma but worse, we lost their dad! Your family rather have you slow down than lose you!!

Ann, I love that story about your grandson! I think I’ve read it from you before, but the flashlight part sounded new :slight_smile: I happened to read this post right after a bath (which I actually took because I was having some kind of all-over raynaud’s attack that had my oral temp around 95.3! When I got out, it was 99.8, and still is after getting chills again… So I’ll be wearing the warm jammies and I’m SURE I’ll kick them off sweaty around 7am. This morning it was 98.9, and my typical is around 97.0. I’m fighting a cold and a significant new chronic viral infection (see my own page about that…) I do have a doctor’s appt tomorrow morning at an urgent clinic, and I’ll be using the day off work to call all my relevant docs who know my case. I know temp is supposed to be higher in the morning and lower at night, but have experienced fevers building into the evening and breaking at night. A bit concerned I can run an apparent fever while on steroids, but I guess it’s only 6mg/day at this point. I do have a friend in the neighborhood I can call if I can’t wait till my 10:45 appt (yes, early in the morning for me!)

I’ll look into fine-tuning your strategy… Bladder and heat are very common wake-up calls for me, and I try to use the opportunity to take morning meds before slipping back to sleep… But I can hold my bladder a REALLY long time, from a congenital abnormality (corrected in childhood… But man can that bladder of mine still stretch as long as it’s not cramping irritation with nothing in it :wink: ) I also usually kick off layers subconsciously and find my socks stuffed in my sheets in the morning! The heat here comes on at 8 for my roommate, and does affect my waking… So I’ll work on this!

Now I’m going to bed. :slight_smile:

Sleepy said:

Lone wolf I agree with you on seeking out. Learn how to live with chronic disease and not to let it run your life. We are the ones who can make changes everyday to see what is going to work best for YOU, When I finally resigned my position at word but we can not fix it and make it go away. Great comments and keep us posted. God bless you

I am tired all day long and have a hard time getting to sleep and whenever I do I never feel fully rested. This past Monday I was up for 30 hrs before finally getting a little 3 hr snooze in before waking up again. I sure would like to know what keeps me from sleeping!

I use lavender oil, and those gold canyon candles. Chamomile and lavender they smell nice and are really relaxing. And for me an occasional Xanax and now ambien. I have 5 kids I’m a nurse , too:) maybe it’s our profession that brought on the goods!! I also try to steer clear of caffeine , I was so used to drinking so much coffee and coke at work I has to really just stop. Hope this helps, esp the candles and oils