Feeling your worst in the mornings?

I feel HORRIBLE when I first wake up. I mean as soon as I open my eyes before I even get out of bed. I feel very nauseous, sick to my stomach and my whole being just feels terrible. This happens EVERY morning. It lasts between 5 and 15 minutes, subsides then I’m able to get out of bed. I figured it has something to do with lupus, then finally saw something explaining WHY this happens. The person who wrote the blog explains how lupus symptoms are most active in the mornings and why this is so. Here is the explanation:
Apoptosis Programmed Cell Death - Every person undergoes an ongoing process of old cells in their body dying and new cells being formed to replace them. In a healthy person, their cells live out their normal life span. For example, some cells in the blood live only a few hours, digestive system cells live a few days, skin cells live a few weeks, red blood cells live several months and brain cells live all the years of a person’s life.
In the case of Lupus, damage to a patient’s body cells is aggressive as it over-actively attacks connective tissue cells, destroying them at an above normal rate while the patient sleeps. The aftermath of this faster than normal cellular death (apoptosis) clogs up the body’s tissues, systems and organs with cellular debris (the biological building blocks of the destroyed cells.) It takes a body time to unclog the brain, organs, fluids and tissues.
The result in the meantime is inflammation and impaired function of involved body parts. For me, that means joint swelling, pain and stiffness, mild to significant cognitive impairment and overall malaise, ache and discomfort."
Here is a link to the whole blog. It’s very good.
I thought I would share this with all of you because it’s nice to have answers whenever possible. Now I know why I wake up every morning feeling so “sick”. I’m glad it doesn’t stay as intense as those 5-15 minutes in the morning when I first open my eyes.

Great blog! Thanks for pointing me to it!!!

This TOTALLY happens to me, but more variable day to day. Many days I feel mostly fine and a bit groggy, but on worse days I repeatedly drift back off to sleep because waking all the way up lets me start feeling significant pain and nausea. Plus, I’m usually exhausted and getting un-restful sleep! I had a stretch for a few months when I woke up most days feeling far too ill, exhausted, and disoriented to even roll over towards my medication drawer in the bedside table, open it, grab my pill bottles and worst of all sit up enough to drink them down with a little water… Going on for 2 or 3 hours some days! Sometimes I was too sick and lethargic to even hold and use my iPhone, to the point that it made me very nervous that I lived alone. And later that I lived with a roommate that I would have had to yell to for help (how can you yell when you can’t even use a touch-screen smartphone???)

This has been happening a lot less, with much less severity, since I’ve been treated with a regimen that works better for me (at first it was nothing/undiagnosed, then just Plaquenil and aspirin, now steroids and rituxan are finally helping!) Still, yesterday was one my super-groggy days, not totally unexpected because I had overdone it the day before, but sure enough I was hardly able to get up to feed and let out the dogs I’m taking care of (finally dragged myself up after they bugged me for an hour!) And the only reason I could rally myself to do it was because I knew once I let them out in the yard I could get back to sleep in peace! I ended up sleeping till 1:30 pm and wasn’t able to get myself to eat anything till more like 3:00. I normally have a late sleep cycle, with trouble both falling asleep (like tonight, it’s almost 5am here and I haven’t slept yet!) and transitioning to being awake. I usually do best with sleeping from about 2 or 3am till 10:30 or 11:30 (no, I don’t work, though I’m finally doing well enough to be looking for something at least part time, after a whole year of exhaustingly high disease activity.)

I’m SO glad to know there’s a biological explanation for this (I’m a biologist by training, and that description makes total sense… Not sure why I never came across it myself in all my searching, including understanding the role of sunlight and faulty apoptosis, which I posted about just recently. Nice work!) I’m so used to hearing from people (well ones, who haven’t the slightest idea what this is like) tell me I’m just giving into depression, sloth or what have you, it’s all a motivation issue, I just need to set a firm wake-up time and stick to it and get to bed earlier so I’m not tired, I’m paying too close of attention to the normal things everyone feels when they wake up tired… But it is NOT normal for your body to destroy instead of restore itself at night, and it hurts! I’m so sick of having people act like superior know-it-alls about my failings to be motivated enough to take on a day, when they haven’t the slightest clue how hard I may be fighting to get through it, much less how deeply I appreciate being alive and long for being actively engaged in life activities! Now I have ammo for the counter-strike :wink: Just kidding, I like to have the chance to educate about the what and why of what I experience, and often find people are receptive when there’s an actual explanation rather than just the expression of how it makes me feel (to get sarcastic again, good to know how you feel matters so little to people, especially when they may be able to make a critical judgment of you to boost their own smug sense of having it all figured out!)

It’s such a relief those times that there is an explanation, even if not fully developed or verified, so there’s at least a context for understanding this exasperating, enigmatic disease. Help Solve the Cruel Mystery is right alright… Advocate for lupus research, of course, but let’s also do what simple things we can to educate those around you about lupus (even if just your experience rather than the pathological mechanisms) to those capable of listening. We definitely owe it to ourselves and Lupus Awareness Month is a great way to encourage our bravery… and give us the soapbox to stand up on!


Thank you for sharing this information with us! I have to start my day an hour early so I can get out of bed and start moving for a while before I can do anything! I feel like I am 100 years old. My joints are stiff and painful! Some mornings I feel like a Mac truck ran me over! Other mornings the Mac truck ran me over and then backed up over me again! LOL! But thank God that I don’t experience the backing up part of the truck every day! The fatigue is what gets me! I wake up tried and stay that way all day long! It is so bad sometimes that I could fall asleep washing the dishes! LOL! Oh the joys of this disease!

But each day when I open my eyes I thank the good Lord for allowing me another day to be alive!

always remember these saying: "I have lupus, lupus doesn’t have me! " and “I have no control over what happens today, but God has my back!”


Thanks for sharing this, its nice to understand why mornings are so rough

Your welcome to all! I’m glad you found it as helpful as much as I did. Guess what? The author of this blog has just joined our group as a result of my sharing her link. That’s awesome!!! A big welcome to her.

I feel the same way when I first wake up. It is awful. My family knows to leave me alone in the morning because I feel SO bad that I just need to be left alone until I feel a little better. Fortunately, I have a 25 minute drive to work, so by the time I get there the worst is over...

Thanks for sharing this information. It really help us to share what we go through , how we are feeling , along with being there to listen and share knowledge, now that is what I call awareness, keep us updated on any and all things …Beverly L.

I also have issues in the morning but have been having increases issues that last the day long. I have had SLE for 18 years now. I also have Fibromyalgia and kidney disease. I am not under treatment at the moment so life has been very difficult. To be able to crawl out of bed is a huge blessing. I have to take my daughter to school in the mornings and it can become overwhelming when you feel like your bones and joints are twisting and grinding. I try to explain this to people but never fer a good response. I wish there was some way for others to experience what we go through. We are warriors in a battle that we never signed up for. Be proud for us and our feats each day.

I thought I was the only one that feel really bad in the morning it’s good to know I’m not alone…Thanks