Does anyone know how to help their fatigue?? I can’t even do any daily task anymore my energy is so bad.
I take b-12 it helps some I manage to get some tasks done I pace myself I can relate.
My doc put me on an ADHD med to give me focus and energy. It works but is good for only 8 hours.
are u taking any meds now?
I found that exercise really does increase energy. The difficult part is getting through that first 30 day slump. However even though I exercise regularly I still have times where I have no energy to do anything, sometimes I’m too tired to eat, when I have those times I shut down. Last week I did nothing from monday-Thursday. I learned how to ignore the guilty feeling I get when I have to do that but without it I would be no good to anyone. I also don’t eat meat only seafood and veggies and it has decreased those times where I do have to shut down by a half. Hope this helps you
I had severe fatigue at for quite a long time until I started taking B12 and Vit. D. You should have your Vit. D levels checked just in case you have deficiency which many people with Lupus and other autoimmune diseases have. Good luck!!
All my vitamin levels are as they should be. For me there is no answer to the fatigue and as far as exercise goes I'm lucky if a I can do 1 load of laundry and make dinner. I certainly don't have the energy for exercise .
Hope someone can help you.
Cindy
The best I can tell you, is to work through it.....some days are worse than others...so rest then. Pace yourself, don't give up . Like the rest said, get your vitamin and mineral levels checked. Talk to your doctor, and see what suggestions they might have for your situation. See if some of your family or friends can help you. Good luck and feel better.
If you can make laundry you can do exercise too. What I mean by excercise is you do what you can, do example lay down in your bed and squeeze you buttocks for 5 seconds, then you could lay down on the floor and move your knees left and right. You start small and increase for one more minute when you can, until you build more energy. The fatigue will not go away but the ability to excercise will grow and food to your muscles and brain will be easier to supply. Also check all other fatigue sources like good sleep, you can do a sleep study, or thyroid function… But every day exercise is the most important as it’s going to improve the sleep and you will get a bit more energy for everyday activities
i have heard that some people get something called ADDERALL to help with fatigue i am going to ask my doctor next month so i can try it too.........i am exhausted when i first get up in the morning myself , i taike vit b 12 and super b complex that helps some, right now i have some face lesions and io am in a flare right now....lupus sucks! god bless you dear and hope this helped you out........purrs..catspaw1955
oh also vitmin d-3 4000 units a day helps.....it also helps with the depression people get from the lupus....purrs..catspaw1955
Hi Prada -
I'm relatively new here, so I'm just trying to get a feel for the community. The one thing I've noticed is that people very rarely mention their age for some reason. The only reason I bring this up, is that from my own experience, lupus changes radically during the different decades of one's life, due to estrogen levels and a lot of other things. So it is hard for someone like me to try to jump in and try to share, not knowing what stage of life you are in.
The kind of fatigue with lupus at its height, during the childbearing years, for me was what I called toxic fatigue. And no matter what anyone said to me, I knew the only way I could get through it was to give in to it. Totally. Without guilt or shame. To have a life, I had to follow the signals my body was giving me. And if you do that, you can really get in touch with going from being totally couch bound, to gradually becoming more functional in time increments that gradually increase in length and are farther apart.
The best advice any doctor ever gave me was to follow the signals my own body was giving me, which isn't easy. The outside world and your upbringing and what society defines as a good and/or useful life............all those implanted ideas have to be shucked. And listening to our own bodies to take whatever pace flare ups require at any decade of our lives is an "art form" that only YOU can eventually figure out for yourself. And once you have, it is often the case that you are soon in another phase of life with lupus, and you have to figure out an entirely different routine for that time of your life.
There are times when the body just shuts down and cannot give any energy to anything but X. And you'll know it and have to learn to accept it as your new normal during those days or weeks during a flare up. At least that is my experience. The amount of energy we have at these times is finite. And our bodies let us know what we need to "let go of". If the disease process is just beginning to flare, all we may be able to do is sleep. And that's o.k. If our energy is needed for one system to go through the flare, another system may just give us the signal that we cannot ask our bodies to do anything else. By this I mean that if X amount of energy is needed for Y, that may mean that our body lets us know that in its exhaustion, it doesn't have the energy to process foods. So I don't need a doctor to tell me anymore that for those few days, the lupus is demanding energy somewhere else and there is no energy left for my GI tract. So to demand that my stomach, intestines, kidneys, and what not process food, is NOT in my best interest.
Everything we do burns up the energy that is in limited supply. And to let go of expectations and just follow the signals your body is giving you, can allow you to use your energy where it will benefit you and gradually allow you to come out of your flare up with the least amount of damage or stress to your body.
So, if you've been couch bound, doing a load a laundry IS a huge amount of exercise, relatively speaking, at various times. And if you live with family, you can make it so that this is not the only thing you do that day, by breaking up the task and letting others help so you just have a small part of the job and energy to do something else for a short while as well. With me, years ago, I'd have one person carry the laundry down stairs. Another put it into the washing machine with soap before they left for school. Another upon returning home from school, place the laundry from the washer to the dryer. And then my ex bring the laundry at night and dump it on my bed. So all I had to do was fold and sort, and tell everyone to come get their own piles. By everyone doing one tiny bit of the task, at an age appropriate level, doing the laundry when ill only took me rising from the bed, sorting it, and giving a yell for everyone to come collect it. In other words, FIVE minutes of my expendible energy.
If I only have 60 minutes of expendable energy a day, at certain times in a flare up, I could space it out, that way.
Energy is burned up mentally, physically, spiritually, and emotionally. So if my mind could only work for ten minutes, that could be used to help with homework. If I had five minutes I could do work in the afternoon, I'd wash some potatoes, and place them and something else made ahead of time into the oven. When a kid arrived home, it was his job to turn ON the oven at say, 4PM.. When Dad came home in an hour and a half, it was his job to turn off the oven, and take things out.
I could then come down, and it took five minutes to steam the veggies back then before microwave ovens, and others set the table and carried everything into the dining room because I was too weak to do that. If I was too weak to sit and eat at the table, someone could bring me my plate to eat lying in bed. But at least I felt that I had spread out my sixty minutes of workable functioning in a way that made me feel valuable. There were times when I was too weak when I sat down at the table to even lift a fork to my mouth. So I didn't belong sitting up at the table as it was too much physical work. But walking downstairs into the kitchen to steam the veggies, made family life still flow. And maybe 10 minutes of my energy for the day was used to think about how I could still do certain things by which part I could do and which part my brain was used to break down certain tasks, that I could do myself if done in five minute increments throughout the day. Or delegated out portions so MY five minutes was the part that was easiest for ME to do. And schedule others to do what they could do. Cuz many tasks can be broken up with less three minutes of work for a youngster, just bring something from point X to point Y every day.
Wasting time thinking that we SHOULD be able to do more, is wasting our finite amount of energy on emotional crap that we need to learn to let go of.
It's a rather difficult concept. And all depends of what decade of life you are in, as to how to distribute what energy is available at any time during the day. But if you go with the flow, your body will begin to exercise naturally when the time is right. For me, I wouldn't realize I hadn't had any core muscles until one day I arose from bed and all of a sudden was doing some stretches, out of the blue, and could FEEL that I had core muscles that wanted to stretch. Or while standing up for five minutes doing some food prep, finding myself just naturally doing some ballet like movements with my feet to start strengthing my ankles.
Our bodies let us know if we listen to them. But in order to do so, you do have to make sure that your judgement is not impaired by depletion of neurotransmitters. That's when the damage is done. Instead of doing something for five minutes, we end up overdoing it and doing something absurd for five hours because we think we "should" be able to do that. Well, maybe after flare ups wane and we are better, yes, that is something that we can do. But not NOW. Maybe in another week, month, year or another decade.
And as none of us are clairvoyant, believe me, I screw this up all the time and get in trouble. It's a life long journey that we will mess up more often than not, before the light bulb goes off in our head and tells us to STOP screwing up.
Healthy diets, exercise, vitamins as suggested above are ALL extremely important. But they can't prevent all flare ups. And we have to go with the flow of flare ups and accept our limitations, and find out at every turn of the bend, what we are able to do, for how long, and how often, and find that combo for each and every day. And as I began with, the challenges of flare ups can be totally different during the various decades of our lives. So we have to keep our head right above where our feet are at present and make life as functional as possible. But also understand, that things can and will be different in future years, often much better once the childbearing hormonal circus leaves town !
O.K. Too loquacious. Time to shut up, Kitty !
Hi Kitty
I am 73 and was diagnosed with SLE 3 years ago. skin rashes, sun sensitivity, fatigue, mouth sores brain fog, small patches of hair loss. On plaquenil for 2 years. Mouth sores gone.
Cindy
Yea Kitty!
I just wish I could learn to pace myself on the good days. I'm 67 and the fatigue has increased. My social life is almost nil. Don't know how I'll feel from hour to hour sometimes. I good 8 hours of energy is like manna from heaven. However I have two other autoimmune disease beside lupus, Sogren's Syndrome and autoimmune hepatitis.
The spoon theory:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
This has helped me with friends and family.
You got to hold on.
Kitty, I'm impressed by your writing....and very impressed with doling out the chores, so you can do 'what' you can do!!! Stay as well as you can.
The only thing that has ever helped me at all with the fatigue was improving my diet. I cut out wheat and sugar and most processed foods and started eating tons of fruits and vegetables and lean meats. I thought I was eating fairly healthy before, but making this change made a big difference for me.
I am 66 and I take Mucuna Dopa for energy and clarity. I used to take adderall and it worked great, then I developed a heart condition and I can't take it anymore. The mucuna dopa is an herb that they use for kids with ADD who also can't take a stimulant. Sometimes the fatigue is telling you that you need to rest. Hope you feel better soon!
You need to get your vitamin December levels checked. Most people who have an autoimmune disease are lacking in vit. D.I take a vkt. D supplement every day, about 4,000 iu. If I Don't take it I am just simply wiped out. I even tried to stop after I started my Lupus meds and again I was exhausted, went back on and much better now. Definitely get a level check! BTW also helps as well as melatonin for a good night's sleep and the same approximate bedtime every night, 8-9 hours, if you can!
Vit d b complex[100] green tea low salt no wheat or dairy! God bless u
Agree that most lupus patients have low vitaminD. I take 2000 am and pm (over the counter, but my rheumy told me to.)
Low energy is lupus, and my doc and I have tried nubigil (made for narcolepsy), but made me shake. Also even half a dose kept me awake half the night. Took cell cept, made me permanently even more fatigued. Prednisone is the only thing that helps me. I now have many side effects of prednisone, but my doc has kept me on meds for osteoporosis since I started taking prednisone. I now think the best I can do is listen to my body. I’m done fighting the fatigue, frustrating as it is. It is the main hallmark of lupus, along with sun sensitivity. Being in the sun for any amount of time puts me on the couch for three days. Not worth it. My priorities have changed. I am no longer a perfect housekeeper,