How I Manage my Never Ending Fatigue

How I Manage my Never Ending Fatigue

Raise your hand if you’ve ever brought up fatigue with your physician? Raise both hands if there was not a lot they could do to help you?

Yup, me too. Actually, if I had the dexterity I’d also lift my feet in the air for futilely trying to manage my symptoms and trying the “more coffee” suggestion…

…Be right back, I’m going to go make a cup now so I can finish this article!

Alright, I’m back.

There are no meds for it, I can’t anticipate it, and it controls me. So, how do I manage? The fatigue may wear out my body, which usually means a nice long nap but honestly, my brain doesn’t need rest of that kind very often. When sleeping isn’t an option and my body needs the rest I need something more to do than stare at the ceiling. Below are my tricks for fighting the monster we call lethargy.

 

Tips to fight fatigue

Books. Rheumatoid Arthritis might have taken my physicality but it didn’t take my mind. I am an avid reader, always was always will be. I keep a stack of books near my bed so I can have my pick any given day. I am a bit flighty so I do skip around multiple books. Please let me know if you do this too!!

Gather the fur. If the pets are sleeping they’re not getting into trouble or making noise. Nowadays, my sleep quality is always better when they sleep with me, which means my body recovers faster and better. I personally cannot sleep at all without them! Note: This may not work for everyone. Most people find animals in the room distracting.

Apps/Puzzles/Games. I love reading but I can’t do it every time I’m laid up in bed because my hands are too sore or I’m just not in that headspace. So, I have a multitude of game apps, I do Sudoku, crosswords, color or paint my nails! When I want to read I use a library app and prop my reader against pillows. If you’re into audiobooks those are also a good option.

Computer. I wish this wasn’t on the list because I spend entirely too much time on my computer.

I subscribe to a couple of online streaming sites and binge movies or series. I even come up with a little competition for myself and see how fast I get through a season or series. Yes, this is sad but it helps me justify all the time I spend watching something on my computer.

I write. I write whatever flows into my head. I write articles or write for my blog. I check other people’s blogs and social media. It takes up a surprising amount of time and I can connect with other people.

And finally, I embrace the nap. I have always loved to nap. One of the only clear memories of my childhood was taking a nap after elementary school and my dad waking me up when he came home from work. There was a brief spell, between the ages of 10 and 16 that napping just wasn’t cool but I rekindled my relationship with it in college. Napping is a sure-fire way to rest and recharge my achy breaky body.

I could kid myself forever but fatigue, it’s there, it’s not going away and the only way I can manage it is to acknowledge it and let my body rest when it needs to.

Fatigue. The one word that opens the flood gates in the Spoonie community. Let me know in the comments your tricks for managing exhaustion because I could definitely use some more!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (27)
  • PamelaP
    12 months ago

    I have a sleeping husband so I can’t hang out in bed at night. Or have the light on. And I can’t just lie there and cuddle because I have other illnesses (I refuse to use the words disease or deserve) which cause me other types of pain. Like Sjogren’s eye, ear and throat pain; Neurofibromytosis severe nerve pain; and more.So often the couch in the den is my other home.

    I have found that I must sleep 12 hours each 24 (sometimes adding a nap!) to be able to function the other 12. Once I refused to feel guilty about this, I found a peace I’d been lacking for years, especially since my daughter — an RN for Pete’s sake — resents my inability to be the grandmother she (and I) always thought I’d be. Like I’m not sad about it to the point of I try not to think about this, but that’s another story.

    Thank God I have an indoor hot tub which is great for my nerve pain, especially, even more than the muscle pain. During the nights I must get out of bed for I can’t be still. So it’s off the hot tub and then usually to read (I’m like you here, Monica) or look at magazines or go through junk mail. Then sometimes back in the hot tub before back to bed. I try to stay away from screens like we’re supposed to but…here I am! I wish I could make noise and be more productive; however, I’d never wish for my sweet husband not to be asleep in our bed!

    I, also, want something that has “Embrace the Nap” on it. Someone make some $$$ !!

    Thanks for this thread. Sometimes I think fatigue cheats me out of a normal life even more than my pain or other symptoms!

  • PamelaP
    12 months ago

    I have a sleeping husband so I can’t hang out in bed at night. And I can’t just lie there and cuddle because I have other illnesses (I refuse to use the words disease or deserve) which cause me other types of pain. Like Sjogren’s eye, ear and throat pain; Neurofibromytosis severe nerve pain; and more.

    I have found that I must sleep 12 hours each 24 (sometimes adding a nap!) to be able to function the other 12. Once I refused to feel guilty about this, I found a peace I’d been lacking for years, especially since my daughter — an RN for Pete’s sake — resents my inability to be the grandmother she (and I) always thought I’d be. Like I’m not sad about it to the point of I try not to think about this, but that’s another story.

    Thank God I have an indoor hot tub which is great for my nerve pain, especially, even more than the muscle pain. During the nights I must get out of bed for I can’t be still. So it’s off the hot tub and then usually to read (I’m like you here, Monica) or look at magazines or go through junk mail. I try to stay away from screens like we’re supposed to but…here I am! I wish I could make noise and be more productive; however, I’d never wish for my sweet husband not to be asleep in our bed!

    I, also, want something that has “Embrace the Nap” on it. Someone make some $$$ !!

    Thanks for this thread. Sometimes I think fatigue cheats me out of a normal life even more than my pain or other symptoms!

  • miaj
    12 months ago

    Thanks for the tips Monica, I HATE fatigue with a passion! 🙂 Especially that it’s so hard for other people to understand that it’s not the same as being tired. The ways I try to cope are to try and follow the same routine when I go to bed. I always try and wind down a bit about an hour before bed and then when I want to sleep I listen to a ‘sleep story’ (the Calm app has a whole range of them). I can guarantee within 10 mins of turning one on, I’m out like a light! 🙂 On the days when I can’t just wake up naturally I try and set my alarm for about an hour before I need to get up (I know — it hurts to give up that extra sleep! ;). But I find if I do that I can take my time working up the energy to actually get out of bed — often I do a 10 or 15 min meditation and then when I do get up I generally feel less fatigued than if I try and leap out of bed and get going straight away. I love your tip to cuddle with the furbabies. Mine love being on the bed and I swear they exude sleepy calm! xx

  • Richard Faust moderator
    12 months ago

    Hi miaj. Glad you like the article and tips. When I saw your comment on the sleepy calm exuded by the pets, I couldn’t help but think of this article from one of our contributors that looks at actual studies finding that the purr of cats can be beneficial: https://rheumatoidarthritis.net/living/the-potential-of-purr/. Best, Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator author
    12 months ago

    Thanks commenting on my article, miaj!! I do the same thing at night, timings and everything!

    I’m, unfortunately, one of those people who wakes up my alarm, decides how long something will take “oh, it will only take me 5 minutes to make my breakfast so I can snooze for another 10″…I am going to try it your way because that sounds really nice! If I can do it for my night routine, I’m sure (hopefully!!) I can do it in the mornings too 🙂

    Thank you so much!! ~Monica (RheumatoidArthritis.net Team)

  • Ann B Wall
    12 months ago

    I haven’t found a foolproof method of managing fatigue,I wish I could do more everyday. I’m home for work today because of Fatigue and stiffness primarily. Sometimes I despair that I will just spiral downward in my independence. I like the Yoga nidra ,my fears I know are zapping my energy but I must acknowledge them. I feel angry that understanding is in short supply.Even my rheumatologist who has been supportive doesn’t understand, it’s hard for people to get. I try to walk 5-6 days a week and that help’s me a lot mentally and physically. I have pain and I have trouble acknowledging the pain, often I just distract myself but pain is probably adding to fatigue. sorry to go on just some thoughts

  • Monica Y. Sengupta moderator author
    12 months ago

    Hey Ann! Thank you so much for commenting on my article!! I believe that acknowledging my fears is key to my mental health. I know that if I don’t those negative thoughts chip away but I also try to distract myself, like you! Why do you like Yoga? Does it distract or just calm the body/mind? I done a bit of it but find rock-climbing more fitting for me!

    Whenever you want to chat, please reach out!! ~Monica (RheumatoidArthritis.net Team)

  • Ann B Wall
    10 months ago

    Thanks Monica , Yoga nidra calms the mind and the body. i have a book , You are not your pain and a disc comes with it – i learned enough to do the Body scan mediation-it helps pain . I was doing it twice a day for a while, now sporadically. I found a yogi Sami on you tube- Yoga for fatigue ,again very helpful . My challenge is being consistent and making a habit of helpful activities. All these are helpful for fatigue. thank you so for listening. i keep forgetting my password. are you on twitter? always follow Lene Anderson too.

  • Luzille
    12 months ago

    I also sleep better with a cat pushed up against me. I find a small fan on low really helps me sleep threw the night. I keep Aspercream next to the bed for any aches at bedtime or during the night. I also keep Bach’s sleep remedy next to the bed if I’m having a super difficult time. Morning is another story. I can often nap within 45 mins of getting up. I have to be careful not to get too comfortable if it’s a work day.

    I have completely streamlined my morning routine to allow myself to sleep as possible in morning. I dress simply and only wear makeup if I have the engery. I have short easy to style hair with no fuss.

  • Luzille
    12 months ago

    Through not threw.

  • Monica Y. Sengupta moderator author
    12 months ago

    Hey Luzille!

    What about the fan makes it easier for you? Does it bring down the temperature or is it for the white noise?

    I agree wholeheartedly about mornings. For me, I’m just not an AM person so it’s always tough to get myself going (also add in stiffness and pain) and I’m ready to crawl back under the covers!

    Thanks for commenting on my article! I really appreciate it! ~Monica (Rheumatoid Arthritis.net Team)

  • KarenG.
    12 months ago

    I like the part about Embrace the Nap….. that would make a nice sign….. thanks for the article and suggestions!

  • Monica Y. Sengupta moderator author
    12 months ago

    Oooh! I kind of want this one a tee shirt now!! Thanks Karen! 🙂

    I really appreciate you taking the time to comment on my article ~Monica (RheumatoidArthritis.net Team)

  • Patrica Pagel-Wheeler
    12 months ago

    I have two words: Yoga Nidra, also sometimes known as Integrative Rest (it’s not yoga) You can download a 20-30 minutes guided relaxation session to do laying down. There are downloads on I tunes or through Mindful Yoga Therapy (they support Veterans with PTSD). The rest achieved with Yoga Nidra can be more effective than sleep and deeply restorative for mind, body and soul. I use it myself and also guide others. Highly recommend it.

  • Marny
    12 months ago

    Good article. I find that if I take a dose of sublingual B-12 (2500 units) after lunch, it perks me up. A great cup of coffee mid afternoon helps too! I also use a CBD ointment on my hands and other sore places. It has been shown to reduce inflammation and pain. That helps keep me moving so I can sleep better at night. Sleep is always a good thing!

  • lhlegz
    12 months ago

    I, too, battle with the sleep robber. Bingeing and computer time are not an option: the blue screen undertones are enervating to me. Books are my main refuge but I feel bad about flipping on lights in the bedroom,and my half-polar bear hubby keeps the house so cold at night that I need to stay in bed to keep warm. My remedies: 1) I fight lethargy with movement. I tire myself out in a positive way with water exercise for an hour 2-3 times a week. Gentle on the joints and great for my body and attitude. I usually sleep well on those nights. 2) Visualization: I go mentally on a trip I’d enjoy — I travel business class (even in fantasy I can’t imagine paying 1st class prices!!), plan my wardrobe, think about where I’ll eat, what I want to see, etc. This sometimes! gets me in a good headspace and I drift off. 3) Self hypnosis: I start with my toes and try to sense everything about them, urging them to be warm and toasty. Then I urge that sensation to slowly move up to my instep, to my ankles, to my shins, and so on. It works about a quarter of the time. 4) melatonin: Sometimes all I need is a little drowsiness to send me to dreamland. But even with these strategies, sometimes I am wide awake at 2 a.m. and stressing about the day ahead because my brain can be my worst enemy.

  • kayjaybee13
    12 months ago

    My sleep pattern is erratic. I work 40 hours a week and fortunately have a manager who accepts what I can and cannot do. It’s not easy. Sleeping. That can be such a rare commodity. I go to bed. If I can’t fall asleep in bed I’ll end up in the recliner with a rather loud sound machine perched very near. White noise has a very calming effect. Shuts out the tinnitus too. I’ll sleep for a few hours in the recliner and then I somehow awake groggily and stumble back upstairs to bed and sleep a little longer. I’ve always explained or described fatigue as not so much being tired, wanting to sleep, but an almost complete and total lack of energy. Maybe that’s just me.

  • Monica Y. Sengupta moderator author
    12 months ago

    Hey kayjaybee13! Thank you so much for commenting on my article! I completely agree that fatigue is not just sleep disturbance but low energy…I don’t think I talked about that in either article, though!!

    I’ve heard from others that sleeping in different positions like sitting up helps them fall asleep. I need to try it because laying down isn’t working!

    I’m glad the white noise gives you some relief. Are there any specific noises that you enjoy over others? I like the sound of rain but crashing ocean waves always keep me awake!

    Thanks again! ~Monica (RheumatoidArthritis.net Team)

  • Oscarblue
    12 months ago

    Yes, yes and yes! I wake in the wee hours and have my quiet computer time. Then I rest a bit until the stiffness and ache ease up.
    I must have my little fur buddies in bed with me. They are warm, comforting and totally nonjudgmental! If it’s an especially bad day, they are willing to stay with me all day.
    I do like to binge occasionally on Netflix, and love to read, but on those awful can’t even think days, I resort to earphones and music to “zone out”.
    I get the greatest support from this site. It’s amazing how much people (including docs) don’t understand about the real, day to day of RA.
    Keep it coming,

  • Monica Y. Sengupta moderator author
    12 months ago

    Hey Oscarblue! Thank you so much for commenting on my article and the lovely compliment! I’m really happy you enjoyed my article.

    What kind of music do you listen to? I especially like listening to my movie soundtracks (especially LotR) but find myself watching the movie in my head!!

    What kind of pets do you have?

    ~Monica (RheumatoidArthritis.net Team)

  • Oscarblue
    12 months ago

    Hi Monica,
    I like almost all kinds of music, but for distraction purposes I listen to instrumental or oldies ( from the 60’s). Giving my age away there!
    I have two Shih Tzu mix pups Gabby is black and Oscar is white. Their 12 pound size is manageable for me and they give me so much comfort.
    I would have a miserable journey with RA without them and my husband, the most undemanding,compassionate person I know. Sure got lucky there!
    Thanks for asking-means a lot to have people who understand your journey.

  • Beckie Abbott
    12 months ago

    Thanks for the ideas. I purchased a phone/tablet holder that attaches to my bed. Now, I can stream movies without holding anything! A couple of ideas to while away the time I must rest are a bird feeder outside the window to enjoy birds and adult coloring books. I find it calming and print the finished products onto note cards to give in bundles for gifts. (A great activity to enjoy with children, too!)

  • Monica Y. Sengupta moderator author
    12 months ago

    Ooh! I want one of those!! I didn’t know this device existed but I’m not surpised that it does. It also sounds really good for my back. Right now I’m hunched over my computer table.

    I love coloring books! I switch between markers and gel pens. I love that you give your creations as gifts. They make the gift so much more personal!

    Now that the weather is clearing up the birds are chirping outside my window and it makes me so happy!

    Thank you so much for commenting on my article, Beckie!! Much appreciated ~Monica (RheumatoidArthritis.net Team)

  • rockcandi
    12 months ago

    All great tips in your article Monica. And no, you’re not grasping at straws! Having someone, whether of the flesh or fur type, to keep you accountable and moving really does help. Before I had my son 2 years ago I definitely spent WAY too much time sitting and unfortunately the majority of that time was spent on watching TV. There’s absolutely nothing wrong with giving your body a rest, in fact things tend to go wrong when you don’t listen to your body’s cry for rest. But because I don’t want to look back on my life (or my son to look back on his childhood) and see myself being “lazy”, I try to be sure that I’m fighting fatigue whenever I can. I am getting to a great balance of activity and rest that I really don’t think I would’ve ever achieved if I didn’t have my son. He gives me the best reason ever to get up in the mornings! I know that pets can do the same thing. I’ve had pets that were just as much like friends and kids as people were. One thing I have found too is that if it’s possible, most days it is, I must give my mind a rest too. On those days when I just can’t quiet my mind even though my body has to lay down, I don’t feel nearly as refreshed as when I’m actually able to get a little sleep during my and my sons nap.

  • Monica Y. Sengupta moderator author
    12 months ago

    Thank you for your support, rockcandi!! I don’t have kids yet so my furry friends act like children and make me wake up in the morning!

    My mother had Lupus and I remember some days she would take a “cat nap” every few hours. She would sit and close her eyes and actually sleep! I tried to talk to her once and she very fiercely said “I need to rest. Do not talk to me for 20 minutes.” At the time I didn’t know she was ill so I marveled that she slept sitting up! I never thought she was lazy because she was always awake with me otherwise. I don’t think kids really think that way of their parents and when they get older they understand!

    How do you rest your mind? Today I found none of my usual tricks worked. I tried to nap because I woke up unusually early but my mind was racing a mile a minute and I couldn’t calm it!!

    Thanks again! ~Monica (RheumatoidArthritis.net)

  • Lawrence 'rick' Phillips
    12 months ago

    I fight fatigue using Sheryl. No not that way,, 🙂 Sheryl my wife of 40 years is busy, she is on the move and moves. She has never let me just collapse without great reason. Sheryl is sympathetic and kind, but darn she wants to keep me and us moving.

    What I love about this system is that Sheryl falls asleep watching TV and I take a nap in the morning. Which leaves is roughly noon to 8PM to do things together. We make it work and as such she keeps me honest. Ahh fatigue in limited motion.

    OK, sometimes that way as well.

  • Monica Y. Sengupta moderator author
    12 months ago

    I need a Sheryl!! This is going to sound weird but my pets (more so my cats) do the same thing. They’re always on the move as well and keep me going. I honestly don’t know if someone lied to me and said pets slow down as they get older or I just can’t keep up with them anymore.

    I’m glad you have a routine and someone to hold you accountable. I think that helps in controlling fatigue a little. Or maybe I’m making that up and grasping at straws!!

    Thanks for commenting on my article, Rick!!

  • Poll