I am so exhausted and seem to stay that way. Does anyone have any good suggestions or ideas that have helped them? I would appreciate some feedback.
I had, and still do at times, this issue. There were days I pretty much slept 4-5 hours &then slept all night. All I can say from my experience is read what your body is telling you…it heals while at rest. …the month or two following my flare was worst. Now I may take an hour nap 2-3 times a week. I just go with what my body tells me…if I feel overwhelmingly tired, I go rest a bit. The length & frequency has decreased with time. But I’ve come to terms that taking a rest every so often is just part of what my body needs.
I carefully increased my B12 level (to 976) and my D level to (50 which is what is recommended on vitamindcouncil.org). I think these two levels being increased has helped my energy quite a bit. Afternoon rest time not always even necessary now, and I feel just generally not so "dragged down". I asked my Doctors to do frequent labs so my levels didn't go too high, and kept track of how much supplements I was taking. I try to eat toward the "whole foods" idea, and try to exercise when I can. I also try to pray and ask for counselors/therapists who can help me get done with the effects of past traumas/abuse/stress. Currently I'm doing a therapy called Eye Movement Desensitization and Restructuring, which I think is helping in processing out of negative and untrue beliefs from trauma/abuse, and freeing me up emotionally - this helps me with my energy and peace levels. And God the healer who leads us to what to do next - seeking Him and His wisdom. Yep, I'm still more tired than if I had no Lupus, but the fatigue is much less than it used to be. I've been diagnosed with lupus for 4 years, and extreme fatigue is/was the worst problem of the whole four years for me.
I have done so many things that Eva has done. I also read about and started taking a supplement called D-Ribose, and it has helped an amazing amount. It also got my daughter (mother of 3 little ones) off the couch (had fibro for years) so much that she was able to become Mrs. Boise and 2 other beauty queen titles. She wanted to celebrate with her new-found strength and energy. D-Ribose is part of our DNA, and people with chronic pain use it up more than normal people. D-Ribose helps transport oxygen and nutrients individually to the cells. When your cells don't get enough oxygen and nutrients, they malfunction, spasm, hurt, become weak. It is not available in any foods, so it needs to be supplemented. Checking blood oxygen levels has nothing to do with this, this is in tissues of the organs and muscles. It takes 3 weeks of taking it to build up a level that helps, and there are NO side effects or drug interactions. It is a substance already in your body. The Dr. who discovered this is an M.D. who specializes in conditions with low energy and pain. It's also called Ribose if you want to Google it Here is a short blurb about it, but the Dr. has written a book about it and other books about how it helps energy depleting illnesses, even heart issues. I still am more tired than people without lupus, but I can say I feel at least 50% more energy from Ribose. I also take Vit D and vit B complex which I feel helps. For lupus brainfog, I have found Ginkgo Biloba to help quite a bit. Oh! Here is the article where I first learned about it!
I nap at lunchtime. I get a one hour lunch at work and sometimes I nap twenty minutes and sometimes the full hour. It really helps :) Hope you're feeling better soon!
I have done all that Eva has said and will be looking into the D-Ribose. So, I only have a word of encouragement to be gentle with yourself. I have had Lupus since the birth of my son but only recently diagnosed 4 years ago. It took along time. It also took just as long for me to accept my limitations (I was A type personality) I lived in denial for some time as my reports and tests for my kidneys and other areas came back. I struggled with feeling "lazy" when my exhaustion took over, would get upset with myself and push through. Only to send me into constant flares. I listen to my body now. I regularly exercise 3-5 times a week and pray. Those two things are guarantees. Organic and raw foods as much as possible. Since my diagnoses I have reevaluated some of my toxic relationships professional & personal and have since distanced myself from those people & environments. I've read that a large majority of Lupus patients are "givers." I was to an extreme never caring about any reciprocity because of my altruism. I quit my corporate stressed job to open a small business that is more family and Lupus friendly. Without the stress and toxicity I have experienced a burst of renewed energy and realized I need to consider myself in the equation. Biggest lesson of my life! Take Care and blessings~Donna
Your post about this 'D-Ribose' is interesting. I will research it. And Pat Bryan, yes this chronic fatigue is a bear to
deal with. There are a few good suggestions contained in the various answers here and could be helpful to you and to
me as well. God bless you and be well.
I do not have the answer to this, but I have the exact same question... Hopefully we can find some answers!
I deal with the fatigue constantly also, it's one of the hardest things to deal with with this illness. Chloraquine seemed to help me with my energy level until I became toxic on it. I am currently on cellcept and it does nothing for my fatigue. Right now on days I work I take 5mg prednisone just for energy and go off it on my days off. I have no good suggestions, and prednisone is not really a good option, but would also be interested in anything that may boost the energy levels.
The only thing that saves me, (and its only occasionally), is that I have ADD and my pdoc has me on Adderall and Nuvigil, (for Narcolepsy). I was presenting all these symptoms and as a Psychiatrist she could really only work with my mind. When these meds were not working 100% the way they should, she sent me to see a General Dr and some specialists. This is when they discovered that I have Lupus, RA, Sjogrens Syndrome, and Myositocis, along with Chronic Fatigue and a tumor on my Thyroid. I am okay if I wake up at a decent time, and take all these stimulants... but eventually I am too tired and my fatigue overrides them. I am really hoping that the tumor removal helps get rid of some of these symptoms.
These may help you. Hopefully we can come up with some other options as well!
hi i find that b vitamins help with energy
Life balance. Going to bed early every night. Honestly, I need about 10 hours in bed nightly, even if some of it is spent reading or awake to get to my optimal functioning level. Personally, I also find that mild to moderate exercise ie walking helps. Learning to say "no", still working on this one. Taking a few minutes every day to myself. I take some vitamins too that over time have felt like they help.
I realized over time that exercise plays really important role in reducing fatigue. listen to your body, give it rest when it needs. but do not over rest.
amen god is the beast healer
I carefully increased my B12 level (to 976) and my D level to (50 which is what is recommended on vitamindcouncil.org). I think these two levels being increased has helped my energy quite a bit. Afternoon rest time not always even necessary now, and I feel just generally not so “dragged down”. I asked my Doctors to do frequent labs so my levels didn’t go too high, and kept track of how much supplements I was taking. I try to eat toward the “whole foods” idea, and try to exercise when I can. I also try to pray and ask for counselors/therapists who can help me get done with the effects of past traumas/abuse/stress. Currently I’m doing a therapy called Eye Movement Desensitization and Restructuring, which I think is helping in processing out of negative and untrue beliefs from trauma/abuse, and freeing me up emotionally - this helps me with my energy and peace levels. And God the healer who leads us to what to do next - seeking Him and His wisdom. Yep, I’m still more tired than if I had no Lupus, but the fatigue is much less than it used to be. I’ve been diagnosed with lupus for 4 years, and extreme fatigue is/was the worst problem of the whole four years for me.