For the past few weeks all I have been doing is sleeping. I’ll sleep between 10 and 14 hrs a night be up for a little bit take a 3 to 5 hr. Nap depending on the day. Do a few things and hit the hay again. Can’t figure out why I’m so tired! I’ve had no energy to do anything! I just sit at home doing nothing. I haven’t been able to go to church, do anything with friends or even grocery shopping. Has anyone else experienced this?
I can’t sleep at night, but 5am in the morning I crash for about 3 or 4 hrs wake up and I’m good till about 5 pm sleep for an hr and up for the night
Yes that sounds like me. I regularly sleep 10-14 hours a day....been doing that for months. Rheumy says I shouldn't be sleeping so much and tried changing around some meds to see if they were causing it - no difference. I have to fight the urge to take a nap around 4PM, every day I get extremely sleepy around then. I try to go do something so I wont take the nap, but if I'm home...... zzzZZZzzz.....
zzzNikkizzz
I also sleep 12 hours per night and take a nap if I am home in the day. I work part-time and sleep. I mentioned this to my Rheumy but no comment in return so I guess it is the least of my worries at this point of trying to figure out what meds will work for me and if any other condition is contributing to my Lupus symptoms. I now, besides my Rheumy and Hematologist, have to see a cardiologist and a pulmonologist. Good Luck with finding answers and share if you find something that works. :)
And ditto here. Basically seeing same specislists as lol…and also, please share if you find an answer. I feel like such a dud.
Nikki said:
Yes that sounds like me. I regularly sleep 10-14 hours a day....been doing that for months. Rheumy says I shouldn't be sleeping so much and tried changing around some meds to see if they were causing it - no difference. I have to fight the urge to take a nap around 4PM, every day I get extremely sleepy around then. I try to go do something so I wont take the nap, but if I'm home...... zzzZZZzzz.....
zzzNikkizzz
Yep, me too. That is if I am able to get comfortable enough to fall asleep. But I am tired all day. Last night I fell asleep at 9:30 woke up hurting at 4:00am fell back to sleep around 6:30 and slept until 11:30.
geongHi this is broken thatis part of Lupus how ever it is hard to make people understand that don't have Lupus!
I have had it since 1984 and I am 66 now I have been through more than I ever asked for seizures, colitis
fibromyalgia,,breathing problems, swelling of my whole body in and out of the hospital! sores all over my body. allergic to the sun can't take the cold in the winter! Arthiritis throughout my body broken back broken verta brae which I have right now take vitamins especially D and Calcium for the bones I did not start it soon enough my bones are brittle I am suppose to be going in for back surgery But my primary Dr. thinks my surgery DR. is to aggressive and this is experimental in my back! Putting titanium rods and like a cage on the outside of the spine because the bones are breaking and keep breaking! I have arthiritis at the base of my spine and all around that area the Dr. wants to scrape the arirtis away from where the cords come out of the spine as it is closing up also around the right side and left side of the spine I am in pain most of the time but now I have gone on new pain pills I can do more and can sew and cook more than I was can't go up and down staris can't lift more than ten pounds there is much more but to much to write at this time ! But go ahead and sleep sleep heals the b ody! Talk to your Dr. I had to go to several Dr. before they found I had Lupus all the others said it was in my head and nerves! I will say stress keep away from! God Bless do as much as your body will let you if you can get out of bed to take a hot shower it really helped me with the pain in my back and allowed me more time out of bed!
Good Luck My Prayers are with you Broken
Yep, I go through phases of extreme fatigue too. It is so hard to explain to people who don’t have lupus what this kind of fatigue is.
Me three! By 3pm each day I'm falling down & will sleep till around 6.30pm then cook dinner clean up shower etc & be back to bed by 10pm & sleep till 7.30am. If I allowed myself (which I do at times), I would sleep till 11.30 am each morning. Its a part of Lupus, throw in a common cold & its game over to the sleeping Olympics. Best Wishes to you. xo
exactly the same here, I just dont function anymore and as I am on my own it is getting so hard to deal with everything, I get so stressed as my house is so dirty and messy even if I had people to visit I wouldnt let them as I'm too ashamed, I am sick of telling Dr's but they just don't seem to believe the fatigue can be that bad, if I had a choice to get rid of the fatigue or pain I would pick the fatigue every time. If anyone does get any answers to this please let me know. Hugs to you all x
You’re describing me. I sleep around 8 hrs at night, get up for about 3 hours and then sleep 3-4 hrs a day. This has been going on for as long as I remember… I can’t make it thru the day without a long nap unless I have to be out and then, when I get home it’s a nap before I do anything. Just tired…
My rheumy is always telling me I need more rest. He said his office encourages naps for his patients.
This kind of fatigue is simply put inexplicable to those who do not have LUPUS. My family doesn't get it much of the time. And what really gets me is how random it is. One day i will have a normal amount of energy and the next, hard time getting out of bed.
I believe this is one of the main effects of LUPUS. The fatigue is so profound. And I end up talking poorly to myself instead of rooting myself on. I call myself lazy, and many other adjectives. This does not help matters at all.
Stay positive, validate your self at all times, and talk to yourself with love and acceptance.
Oh yes, getting sick makes it much worse. I had pneumonia a couple of weeks ago and was awake maybe 4 hrs a day max (not all at once!).
With so many of us experiencing the same thing, I wonder why some rheumys (like mine) don’t acknowledge it as part of Lupus?
I have the same basic issue. It will happen at random times during the week–I’ll have a day where I truly make every effort to push myself and get up–but I am so exhausted and so sleepy that I just cannot wake up. My husband now knows that if I/we have a day where I do anything out of the ordinary–the next day is a lost cause. I just sleep for most of the next 24 hours. I HATE it. I feel like I’m sleeping away chunks of my life. I often berate myself about it, too. But I do know that on “good” days I work super hard. So I KNOW I’m not lazy. I was able to teach 19 years, and raise our three kids and be a part of all they did–and I’m thankful I COULD push myself back then. But since taking an early medical retirement I’m just not able to do it anymore. What I wouldn’t give for energy every day!
Yes! Yes! Yes! I get this way too. It means you are in a flare. Unfortunately the only thing that helps me is more steroids. Unfortunately I am trying to get off of them because like Broken I got osteoporosis and broke four vertebrae from it! Sooo painful. So now if it lasts longer than a week I call my Rheumy for a shot of steroids.
I too would take the pain over the fatigue as the fatigue is so debilitating that nothing gets done. My house is a mess and it’s so embarrassing. I have teenage boys that can help but I don’t even have the energy sometimes to show them what to do! It sounds crazy but sometimes all I can do is get out of bed to go potty. That’s it. Crazy…
If you are like this for too long, like over a week or two, please call your Rheumy so he/she can give you something. You don’t want to let high inflammation go on too long as it can damage your organs. Take care! Hugs! Tina
Hi everyone---- please be sure to have your vitamin D levels checked! Mine was down to 4 and I had extreme fatigue with it. Since doctor loaded me with vitamin D,so much of the fatigue has vanished. Good luck everyone.
Wow!!! Thank you all for the input! I’m in the middle of getting of prednisone as it has done my body so much harm. So I’m wondering if that’s contributing to it or not. I just hope it gets better soon. My brother is getting married the end of this month and I’m afraid it’s not going to help matters. It’s in the middle of the day and outside not looking forward to that!! On top of it I have to deal with my family telling me to grow up and I’m just looking for attention this is all fake and I don’t need the wheel chair. Ugh! Knowing my body and all I’ll have to do my right side will give out and I’ll be wheel chair bond for a few days. I’m hoping to get an energy boost so I can get my place clean and not have to deal with the rath of that not being clean. It is really hard to explain to others who aren’t sick how you feel. I had one friend who was sick for 13 days and she told me she doesn’t know how I do it. I told her I just do it cause I have no other choice! Glad to have people on here that know and understand! 
hope you all find answers too!!!
Same here....rheumy always telling me to get out more (as opposed to not getting out at all) and not sleep so much. New endro doc treating me for cortisol issues so maybe that will help, but right now I sleep probably 14 hrs out of 24. I am so tired.
Nikki said:
Yes that sounds like me. I regularly sleep 10-14 hours a day....been doing that for months. Rheumy says I shouldn't be sleeping so much and tried changing around some meds to see if they were causing it - no difference. I have to fight the urge to take a nap around 4PM, every day I get extremely sleepy around then. I try to go do something so I wont take the nap, but if I'm home...... zzzZZZzzz.....
zzzNikkizzz