Fatigue and Flares | Lupus Forums at The Lupus Site
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Fatigue and Flares

Discussion in 'Symptoms' started by Kiewi5, Jan 2, 2020.

  1. Kiewi5

    Kiewi5 Member

    Hey there,

    I have been doing better since I’ve been on Benlysta but the fatigue still kicks my butt sometimes. I know many of you can relate to the crushing fatigue that can occur with SLE and other autoimmune diseases! So anyway, sometimes the fatigue comes with vengeance, and today is one of those days. It is difficult because I can’t really take off work but I have to really make an effort not to fall asleep at my desk. I was wondering if any of you have found anything that has been helpful in terms of fatigue (exercise, diet, giving in and going to sleep, whatever—I’m open to suggestions!). Also, does anyone else have fatigue as one of their first warning signs of a flare? And has anything worked to lessen the flare? Thank you!! Happy New Year!
    Lupusdude likes this.
  2. Jessica1

    Jessica1 Moderator

    Hi Kiewi5,
    Learning to listen to your body is one of the biggest things I think and sometimes I should listen to my own advice more! I've always found it hard to know that I've done too much before it's too late, but I now have a strange but useful warning sign where my knees go bright red and feel like they're on fire. Lately it's happened to my feet or legs and sometimes from my hip to my toes but I know that if I don't stop and rest I'll be in trouble.

    One of the difficulties, especially if you work, is being able to rest when you need to so I'd suggest that if you're feeling fatigued and you're able to just rest when you've finished work that you do that. I find that if I don't rest when I'm 'warned' I have no choice and am really on my knees then.
    I'm not sure this helps but you're not on your own in that boat!
    Best wishes,
    wolf1, Kiewi5 and Lupusdude like this.
  3. Kiewi5

    Kiewi5 Member

    Thank you so much for your response! Isn’t it weird how we get these random (yet useful) warning signs? Mine are hip pain and numbness/tingling down an area of my back. And that is good advice to listen to your body; I should do that more often! I’m getting better and detecting the signs before they are screaming at me, but I agree it’s sometimes hard to know you’ve overdone it until you already have. Thanks again!!
    Lupusdude likes this.
  4. Jessica1

    Jessica1 Moderator

    I get a numb mouth and side of my face sometimes but that's usually to do with exposure to artificial lighting, the worst of my Lupus problems.
    I'm sure that us Lupies are usually more doers so we find it hard to stop before it's too late. I mean how do you know when you're only one step behind doing too much? It's probably to do with knowing just what illness feels like compared to some people who are far healthier but often seem to have plenty to moan about!
    At least we've all got each other here to know just what it's really like. A problem shared and all that.
    Lupusdude likes this.
  5. Kiewi5

    Kiewi5 Member

    I’m lucky that I don’t have issues thus far with exposure to the sun (I do use sunscreen and coverup but I still get some sun) or artificial lighting; that would be really tough. I’m so thankful for this site because I honestly felt like I was losing my mind with all my odd symptoms. Turns out they aren’t so odd and, well, lupus does odd things! And I’d like to think lupies (love that term) are doers— we have to take advantage of those times when we feel really good!
    Lupusdude and Jessica1 like this.
  6. countrylass

    countrylass Registered

    Hi yes I battle fatigue..
    It can be crippling..
    I can't go out work because mine.
    I switched to plant based eating... Using food to aid body with energy. Sugar carbs white are big energy drainer.
    Caffeine to you get slumps.
    Kiewi5 likes this.
  7. Gisele Zeitler

    Gisele Zeitler New Member

    I'm glad someone mentioned the ungodly fatigue! Like you, that has always been my most debilitating symptom. Even when my hands and feet were swollen, all my joints were achy, my fingers were useless and my aching wrists couldn't support a book, those things wouldn't have stopped me as completely as the fatigue always does! One can suffer through pain, one can take pain killers, one can do things with pain that helps get one's mind off it and onto something else, but with this extreme weakness, one is utterly helpless!

    I have been very lucky with employers! One had me build a resting room for me when i designed our new facility and offices! How lucky can one get? Another, my best employer, where i remained twenty years, made a loveseat in the president's office available to me when I could no longer be horizontal. In addition, when I had a flareup, even one lasting around six months, they gave me the time off and didn't pressure me, while still letting me know I was missed! Again, extraordinary luck for someone with this bewildering disease! Not everyone gets this, and my heart goes out to them. It's hard enough to be in pain and have this profound fatigue, but to then be subjected to the stress and fear of possibly losing the job because of something one has no control over? That's hard, and unfair. We don't choose this! And stress will increase or lengthen the flareup, so lay off someone with lupus!

    I was diagnosed in late 1982, and in all that time i never found a remedy for the fatigue! Don't listen to people in the world who tell you that exercise helps it go away! Yes, that is true for healthy people! But when we are in a flareup, our immune system is raging like someone's with a flu! Would these same people suggest that a person with a flu should go out and do some jogging? All there is, is giving into it, accept that you're going to be down for the count, and don't add to your stress by beating yourself up over it. Find something you can do that will help you focus on something outside of yourself.

    It's hard with pain, i know -- pain exists to draw attention to itself! That's how it rings the alarm for conditions we can treat! But with a chronic disease one is likely to have chronic pain, always ringing the alarm and drawing attention to itself! Rest and sleep and maybe read a great book, or even watch mindless television. The more involved and fascinated you are, the more likely it is that you wont be plagued as much, at least for the minutes it is gripping! That's something.

    But the fatigue? I think there is no answer. Rest.

    Hope you can get the rest you need and find peace with that unresolved answer...
    Kiewi5 and Jessica1 like this.
  8. Jessica1

    Jessica1 Moderator

    Very well said, Gisele, I couldn't have put it better if I'd tried!
  9. lazylegs

    lazylegs Moderator

    Welcome Gisele,

    Exercise does give me an energy pick up but it is not something I would recommend during a flare. My physical therapist gave me some exercises that can be done even in bed to help you not lose as much muscle tone or or flexibility. During my bad times I do the Isometric ones isolating certain muscles at a time. Band work or leg lifts get added as I feel better. Some might not even consider such movements as exercise but they do help me transition from bed to standing once I am feeling better.

    Take care,
  10. Gisele Zeitler

    Gisele Zeitler New Member

    I did the same, Lazylegs. As a former dancer and artistic skater, i was always intent on staying in shape, and being powerful and well-balanced. Lupus completely changed my world. The control i had over how my body would look and work, that i had assumed would be mine forever, was gone! Prednisone resulted in huge weight gains (the first 45 pounds in three months!), and as i lay there trying to get a grip on what all this meant to my world and my plans -- including those for my two sons -- i was losing muscle tone and turning into everything i had always avoided! Yes, it wasn't too long before i recognized that while the fatigue was constant, there were short periods when i was less so! Those were the times of which i had to take advantage. That was when i would do leg stretches while holding on to the kitchen counter! When I'd do upper body stretches and twists, and when I'd raise myself up on my toes over and over, to strengthen my calves. I would do plies to strengthen my thighs, and also kitchen counter push ups. It wasn't much, but it was something! And it represented my triumph over an illness that wanted to minimize me and make me irrelevant!

    The fatigue always returned, especially during that first year, but i could accept it better, having exercised just a bit of control over it! My struggles continued with 16 years on prednisone, and thereafter milder disease, but not without flareups. I was on plaquenil first for nine years, then off for maybe fifteen, and since then more on than off. The longest flareup was a five-year one, which was not the worst, but for which lupus fatigue was the main symptom, which was bad enough to keep me from work long enough to retire (though the entire time i was hoping to go back to work!). I lived on the couch in my husband's study for those years. His study was right next to my painting studio, which i couldn't use because I didn't have the strength to stand up at an easel! Could get up the steps (a bad hip exacerbated that issue). I spent those five years learning digital photo editing, digital painting (even taught an online portrait painting class), beaded jewelry making, sculpting puppet heads including portrait puppets, and a few other things I no longer do because I'm no longer shackled to a couch!

    Writing this on my cell on the train to NYC, so writing has been a challenge. Going to a ballet tomorrow. I'm sure glad i didn't give into those dark feelings i had at times when existence seemed too hard! Life is good now. Glad I stuck around to live it.
    Last edited: Feb 1, 2020
  11. Kiewi5

    Kiewi5 Member

    Do you feel better being in a plant based diet? I have been a vegetarian for 14 years but due to a nut allergy and a serious love of cheese I have not gone vegan except for a a short period years ago. I’m working on reducing the amount of processed foods I eat to be healthier over all.
  12. Kiewi5

    Kiewi5 Member

    Thanks for your response! I’m sorry you have had to deal with the crushing fatigue, too. It sounds like you had some wonderful employers! I’m afraid to let my employers know about my illness unless it becomes critical that I do. I’m not sure why, maybe because I’m afraid they won’t think I can do the job as well? It makes sense not to exercise when in a flare (it would be too painful really when I’m having the dreaded hip pain anyway) but ahh this prednisone weight gain!! It’s finally starting to very, very slowly come off now that I have been off of it for more than a month. Wishing you all a wonderful day!! Thanks again for the replies!
  13. countrylass

    countrylass Registered

    Sorry busy moving home.
    Sorry Gisele I can't read long replies due visual vertigo.
    Hugs thinking of you.
    Rest helps fatigue yes

    Yes plant based eating works wonders for energy levels I'm lactose intolerant so I have vegan cheese or lactose free cheese.

    I have fibromyalgia rheumatoid arthritis as well.
    So my sle is overlap of 4 things. Raynaunds bring 4th.

    Slow reply as moving hope once moved settled be on more chat you all.
  14. countrylass

    countrylass Registered

    Definitely avoid processed foods I feel it if eat them..
    My tum thanks me for reducing things like fizzy drinks sugar wheat.
    Which I don't tolerate I bloat badly so I went gluten dairy free.
    Vegan I'm edging back towards it.
    So much choice now to eat healthy as vegan.
    My constipation gone by adding ground chia seeds my Oats.

    Just 1 spoon full. Less if to much for you.
    Il be on more once moved settled in. I'm suffering tennis elbow. So getting my arms injected soon. 13th march
  15. pagespark

    pagespark New Member

    I have this same symptom of fatigue and flares. I too really appreciate the advice I found in here thanks!

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