Other than taking naps. Please tell me what have been things your doctors, or things you’ve learned, to get more energy? I feel like my body drags, and my arms weigh a ton. I need some help. I can’t even clean the house without resting all the time.


I feel your pain. I wish I knew, but I'll be just as interested as you are to see other responses. I'm soooo tired, but can't sleep for longer than a couple hour bursts at a time. I was reading an article on lupus, fatigue, cognitive dysfunction, and sleep phobia. Had anyone else ever feel like they had sleep phobia? I sure do... it is a weird feeling to explain, and I was so happy to read about it. Know I'm not completely crazy, but how do I fix it? Thanks.

Link to article I was referencing:http://www.hss.edu/conditions_lupus-fatigue-cognitive-dysfunction.asp

I don’t have the sleep phobia they are describing but ever since I got really sick, I am scared to go to sleep for fear I won’t ever get up again.

I totally understand the crushing fatigue and having to rest in between activities, such as housework. I've learned how to do one activity for about 10-15 min, then rest the same amount of time. It'll take twice as long to get the housework done, but at least you may not be completely wiped out at the end of the day. Some days are better than others.

I've experienced a bit more energy ever since I started taking vitamin D3 (without soy) daily. Also, even 10 min of exercise does help. Take the dog for a walk, a dance routine on the wii or xbox, a jog on a mini trampoline. Just some suggestions.

Here's hoping for more pain free days :)

Fatigue is an issue for so many of us, especially if you have more than one diagnosis you are dealing with. It's often hard to tell which is causing symptoms! I quit fretting that, and went to work on whatever I can.

First, look at any lifestyle changes you can make, like better nutrition, and ask for your doctor's help with testing your B vitamin levels and Vitamin D. When my levels are down, my fatigue is always worse, pain too.

Take a look at what the sleep specialists would call your sleep hygiene. Do you go to bed at the same time, after a chance to wind down, with the same routine each day? Are you able to get comfortable enough to sleep, or is pain disturbing getting good rest? If you can pin point anything, you can work on it from there.

There are more causes but I'm not focusing too well. Most people living with lupus or people with other autoimmune disorders will tell you sleep is an issue. I hope you get a lot of good answers soon. And, please know it's alright to do what you need to for a short time, take a break, then do more! If you push yourself too hard, the payback isn't worth it. Keep going, but listen to your body when you need to.

warm hugs, Louise

This is a good discussion, and lots of good tips all ready. My fatigue has greatly reduced recently, and the biggest things for me were the Vit D deficiency, improving my nutrition, keeping a set schedule,cutting out caffeine after 2pm, and proper exercise. I've just learned that I'm also anemic, and now I'm taking care of that.

I really stressed about not sleeping 8 hours, and I think it made it worse. Once I was able to sleep 4 hours straight, then it started to increas, I was feeling better. I still only sleep between 4 to 6 hours uninterrupted, but my quality of sleep is better. So my advice is try to improve the quality of your sleep, not the quantity to help the fatigue. Sometimes I need a nap, but if its late in the day, I won't take one. I might dose a bit watching tv, but only for 15 minutes or so.

The fatigue has been the most frustrating part of this disease.

Fatigue still shapes my life but each year I have just a fraction more energy than the year before - with lots of ups and downs along the way. I take drops for VIT D and have iron transfusion cause I was low in both. But the main thing I do now is rest if I need to, but try and be active as much as I can. At first I had to rest all the time. Now I can go to an art class for 3 hours comfortably. Last week I started a class that goes for 6 and it was too long. But I’m going to go still and if I have to leave that’s okay. I think it’s about finding a balance between stretching yourself and not overdoing it - all dependent on how well you are feeling that day. I’ve found plaquenil has helped a lot but very slowly.

I’m enjoying hearing other people’s suggestions. Great article too!

Thank you every one! I wanted to send this to the lady that said, “she’s was afraid to go to sleep, in fear that she may never wake up.” Listen to me! You’re not alone…you have a family here, and you should never feel the way you’re feeling. I know there’s things deeper that’s going on in your life. Talk to someone, or post it. You’ll find peace, I promise. You should never be afraid to go. When it’s your time, then it’s your time. We have no control over that. It’s a beautiful thing. What you should be doing is thanking God for giving you the time here, now! Sleep, you’ll wake up and start a new day. That’s what fabulous about each day. We have have a chance to start a new one…24 hours. Make each day count and thank Him for giving you that day. Don’t be afraid everything is going to be okay…I promise! Just get some sleep…

Great question...fatigue has also been the hardest thing for me to except. I asked my doctor this week to run a full blood panel on me, as I feel so very tired and they said all looked good. I was actually disappointed to hear that, as I wanted a reason for my tiredness...something I could fix, not just that this is how my life is going to be. I have backed off taking my Vitamin D, so I will definitely start that up again and hope it makes a difference. I think I sleep pretty well, but my life has dramatically shifted in terms of my social calendar, as most times by the end of the day, I have nothing left to give. Weekends if I can take a nap in the afternoon for an hour or so, I am much refreshed and can do an evening outing. I am 3 months on Plaquenil and still have not seen improvement...just thinning hair. Have any of you seen improvement after the 3 month mark..and has your hair been impacted?

Sitting in church this weekend I told myself it was time to take control of my body back and to start pushing some exercise into my routine. I have yet to do it, but am building up my resolve and mentally preparing myself to make this a goal for myself. Thanks for asking this question and making me feel "normal" in our Lupus life..no one can really understand the fatigue unless they have felt it. Gentle hugs to all of you!

Funny you mentioned it but I also always expect something to show in my blood work when I’m feeling crappy and it usually doesn’t.

Thanks Cindy...it makes me feel better to know it is not in my head and that it is just the new "normal" for my body. :-) Amazing how comforting it is to hear that I am not alone. Thanks!

I take cellcept-I have learned if I take a dose about 11:ish when I start getting tired AGAIN, i get better - not much but it is a start-also-if you have green tea works for some but you really need to be consistant-also biggy- ginseng-korean kind it really is good for us- finally I take soloray has a supplement-I swear this helps me-it replenishes the organs and helps the parts of the body inside with the right stuff we(lupus) arnt prop[erly getting because malfunctioning of the cells. I will check the name and get back today-I promise ok, I know what you are feeling-pray for peace and what you CAN do , NOT what you can't ok -your mind works and so we must continue to lift it up and small steps are better than none, lift us out of dispair, lov ya girl.

vitamin levels, yes. also, drink plenty of filtered plain water (not at meals- between meals). dehydration is a big problem for pretty much all of the US population. I have more energy when I eat more green vegetables (esp. kale, the wonder food). eating food that is easy to digest helps me, so I steam the kale (makes it taste better anyway), and I also have protein powder around for when i'm too tired to fix anything. it's all plant protein, no allergens, and is very easy to digest. I eat (drink) either sun warrior or plant fusion. when I have a real meal, i take a digestive enzyme.

Watch your diet…and your meds…when I can’t do laundry etc… my Dr ups my predisone…it works temporarily. …
Herbal teas may wash your meds out of your system…becareful…

awesomed said:

Watch your diet...and your meds...when I can't do laundry etc.. my Dr ups my predisone...it works temporarily. ..
Herbal teas may wash your meds out of your system..becareful...YUP Everyones different with LUPUS- Prednesone is not good any which way-but have been forced in past to do what I gotta do-Green tea in most cases does not seem to wash drug out but you may want to check - I am ONLY sharing what I do and if it helps others great!!

Chloraquine has made a huge difference with me. Taking time to rest definitely helps too. As you all stated about having trouble sleeping, unless I wake up hurting, I could about sleep anytime or anywhere.

I have learned to pace myself. And, it's OK to stop and rest when needed.It's OK to need extra sleep. Above all get plenty of exercise.

One thing that has helped me lately comes from left field. My right leg is shortened from 5 surgeries (performed over the last 3 years) on my right hip and femur. The physical therapist ("better late than never") had me put flat doubled spenco insoles into my right shoe. I'm walking almost normal and way less tired. Go figure!

You have to hold on.

Wish I had an answer, but I'm wondering the same thing. My body is super tired right now and I try and sit up as much as possible. I am home on a disability retirement and need to take frequent naps. Sometimes I'm so fatigued that it takes all I can do to get myself to the bed and in it. My mattress is worn out and I need a new one...this will help with my pain, I'm sure.

My meds aren't working and I have to take sleeping pills to really get solid sleep. This can't continue because I don't feel that I'm getting true healthy sleep.


Hi! Eat more green vegeies! They help with the iron!..BeverlL.

Just a friendly warning before anyone goes strictly green vegetables check and see if you have anti-phospholipid syndrome it causes your blood to clot and green vegetables is the enemy because of the vitamin k that’s in them. I lost my right eye because of a blood clot and they ran test on me and that’s how I found out I had lupus in Aug 2005