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Warning: Wall Ahead

Warning: Wall Ahead

Exhaustion can hit anyone. I imagine that any person in a busy phase of life can feel worn out. However, living with rheumatoid arthritis/rheumatoid disease (RA/RD) often means that I experience these times more often than my healthier peers, and that exhaustion has additional physical ramifications.

For instance, when my husband is working long hours and not getting enough sleep, he is tired in the evenings and wants to go to bed earlier than usual. However, after a good night’s sleep, his energy is back to normal. When I feel spent of energy, I experience fatigue that goes beyond exhaustion. A good night’s sleep may be unattainable due to the achiness that often accompanies this fatigue, and even if I am able to get significant rest, it may not put a dent in my fatigue.

Battling exhaustion from RA

This experience is common for people with this disease. While pain and inflammation are the celebrity RA/RD symptoms, fatigue is a belligerent B-lister that can wreak havoc on people living with this condition. RA/RD fatigue can be as problematic as pain, making it difficult to make it through a day, a task, or even a full-fledged thought.

Consequences of pushing the limit with exhaustion

In addition to fatigue, if I overdo it I experience other physical consequences. As RA/RD is an autoimmune disease, my immune system doesn’t function optimally. Instead of solely fighting germs and viruses, my confused immune system is instead targeting my joints and tissue. Over the years I’ve realized that when I am run down, I am at a higher risk of having a flare or getting sick. I’ve also realized that there are some physical warning signs my body gives me that it is running on empty and headed toward illness or a flare.

Warning signs of RA exhaustion

Susceptibility to flares or infections

If I have one busy day or engage in a strenuous (or strenuous-for-me) activity, I’m prone to what I call an “activity hangover,” where I have mild fatigue and achiness that lasts a day or two. However, when I’m really run down, these symptoms last day after day. In addition, I experience recurrent low-level infections such as cold sores and yeast infections. I also begin to lose my voice, sounding raspy but without a sore throat.

These warning signs are like the gas light that comes on when a car’s fuel tank is near empty. However, unlike a car, if I fail to fill my tank with some much-needed rest, my body won’t slow to a stop. Rather, it will crash into the wall of a flare or a significant viral or bacterial infection.

Thankful for the warning signs

It’s really hard to take time to rest in the midst of a busy and/or stressful phase of life. However, if I ignore my voice that’s become husky, telltale cold sores, or fatigue, my body will become so sick or in so much pain that I have no choice but to rest.

RA/RD is extremely unpredictable and can flare up without any warning whatsoever. That being said, rarely does it work the other way around where my warning signals do not result in significant consequences should I fail to heed them. While I often feel frustrated that my energy level becomes depleted more quickly than my peers, I’m trying to realize that my pesky and unpleasant physical warning signs are actually a gift that can help me avoid some illnesses and flares if I take heed and give my body the rest it needs.

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

  • Bets
    1 month ago

    I find the fatigue and exhaustion almost unbearable at times. Still struggling to cope with RA, the ongoing flares feel like I just keep getting knocked down. It’s hard to not become depressed. I am trying to count my blessings but it just really sucks to feel ill so often and have my hair fall out to. It takes a serious toll on my self esteem. Best wishes to everyone dealing with this disease 🙂

  • Lawrence 'rick' Phillips moderator
    1 month ago

    Bets, it is difficult. I hope you find that with good fortune and the help of your rheumatologist you might find the secret sauce for you. I do not know anyone who has this thing totally nailed. We keep pressing forward and then it seems like one day it seems like you get out of bed and you forget, maybe just for that minute you do not hurt.

    I hope you find that place sooner than later. I trust you will.

  • TLTrujillo
    2 months ago

    Tamara, this article couldn’t have come at a better time. I have RA/RD and fibromyalgia. I’m having one of those weeks of extreme exhaustion because I haven’t listened to my body and those warning signs you talk about. I’ve had such a busy several months and so many changes in my life and routine recently, that it’s all catching up with me now. I got married at the end of March and are still trying to clear out his house, which is three and a half hours away, and prepare it for sale. So we’re making trips about every other weekend. On top of that, we decided to adopt a new puppy to keep our other dog company. That has proven to be quite a chore! as much as I love him, the training and care is mostly up to me, since I am home. I’ve taken rest days here and there because I have seen the signs but they haven’t been enough and I’ve been pushing myself. I’ve also had kidney stones and a lithotripsy for them in April and a severe infection a couple of weeks after that took more than 1 antibiotic to get rid of and several more weeks to gain any amount of energy! So now I’m paying for all of this. This week I have been in more pain than usual, suffering extreme exhaustion, brain fog, migraines and insomnia. And now loss of appetite (that’s when you know things are bad! Lol!) While my husband says he understands because I’m not one to complain so if I’m in bed saying how bad I feel, it must be bad, I don’t think he really gets how bad it really is. He still thinks I can just get up and go at a moment’s notice. I think it confuses him because he cannot see any outward manifestation of my illness. All he knows is I’m not being as perky as usual and want to sleep a lot. Anyways, enough complaining although I feel like I can express my feelings here because they will be understood. Thank you for the article and allowing me to know I’m not the only one.

  • Tamara Haag moderator author
    2 months ago

    Hey TJTrujillo,

    Wow, you really have had quite a big few months! Congratulations on your marriage and for keeping your head above water with all the changes and challenges since. During the first year after I got married, my meds stopped being effective after 7 years of treatment and I had a severe flare that rendered me unable to work for three months until my new treatment started taking effect. I thought, “Man, I’m really putting the ‘in sickness and in health’ part of marriage vows to the test in short order.” Luckily, in the 13 years I’ve been married my husband has learned a lot about what RA/RD is like for me. Of course he doesn’t know what it’s like first-hand, but he knows that it can strike suddenly, that I’m more likely to have a flare or a lower-level “activity hangover” after a big event/exertion of energy, and that it can impact me in different ways at different times.

    In case any of these articles are helpful for you and/or your husband, here are a few that came to mind as I read your comment:
    – “You Have Rheumatoid Arthritis” is an article I wrote in the hopes of explaining to people who do not have the disease what it is like https://rheumatoidarthritis.net/living/have/
    – “Tired of Being Tired” describes RA fatigue https://rheumatoidarthritis.net/living/tired-of-tired/
    – “The Activity Hangover” describes the fallout after a big day https://rheumatoidarthritis.net/living/activity-hangover/
    – “The Neglected RA Symptom: Infections” as you mention you’ve been struggling with infection https://rheumatoidarthritis.net/living/neglected-symptom/
    – “Faking It” is about the nature of living with an invisible disabilty.

    I wish you all the best as you heal and cope. I hope things will settle down soon so that you can go back to the everyday challenges of living with RA, versus the current intense challenges of living with RA while dealing with stressful circumstances.

    Yes, we definitely understand here, so please continue to share any time you need to vent to people who “get it.” We definitely get it.

    Rooting for you,
    Tamara

  • Kelly Dabel moderator
    2 months ago

    Thank you for sharing your story TLTrujillo. So glad this article was helpful to you and reminded you that you are not alone in this. Congratulations on getting married! You have certainly had some big changes recently, a new puppy too! Sounds like this week has been especially difficult. Wishing you relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • MikeinOZ
    2 months ago

    I can relate too. My problem is that my rheumatologist thinks I also have fibromyalgia as well as ME! You can have “post exertional malaise “ which is overwhelming fatigue,

  • Kelly Dabel moderator
    2 months ago

    Thanks for sharing and commenting MikeinOZ. You are not alone here. In addition to speaking with your doctor, this article may be helpful to you: https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/fibromyalgia/. Wishing you some answers and relief soon. Best, Kelly, Rheumatoidarthritis.net Team Member

  • JAK1016
    2 months ago

    Tamara thanks for your insight of what we all encounter on a daily basis. I used to work at hummingbird speed but now exhaustion does dictate my activities.I have learned to take advantage of good days and not fret the bad ones. I am without a doubt a type A on working level that has changed to a type RA worker for my health. The signals truly are a gift!

  • Tamara Haag moderator author
    2 months ago

    Thanks so much for sharing, JAK1016! I can relate! And as a fellow type A person, I especially appreciate your “type A to type RA” comment. Please continue to share any time you feel so inclined, as it is so helpful to know we’re not alone. All the best, Tamara

  • David Advent moderator
    2 months ago

    I’m glad this article resonated with you, @jak1016! Wishing you the best on your journey with RA,

    -David (RheumatoidArthritis.net Team Member)

  • BeccaFloyd
    2 months ago

    I can certainly relate! On Saturday, my husband and I went kayaking for the first time in 3 years. We used to go often, but life intervened and so I was very excited about getting back on the horse (kayak). We chose a river route just outside of the city where we live, that we had heard was for beginners, and that offered beautiful scenery along the way. They were right about the scenery, an adult moose came down to drink just feet from us, we saw white tailed deer, and innumerable species of birds and water fowl. However, 6 miles of constant paddling later, I was just about in tears from the pain emanating through my wrists and shoulders. A “beginner’s” paddle, it was not! I have no regrets in undertaking this adventure and chance to make memories with my husband, however today, four days later and our 10th anniversary, I’m unable to muster the energy to simply get ready for a nice dinner out to celebrate. Instead, my wonderfully understanding husband is bringing the nice dinner home, to enjoy in the comfort of my yoga pants and heating pads! Life with RA is a constant juggling of deciding which activities are worth the repercussions I will inevitably face. Each decision has its consequences, whether it be the guilt of feeling like I’ve missed out on a important event or a chance to experience something new, or the flip-side of taking the leap and doing it anyways, and paying the price through increased pain and fatigue. Only we can know what is best for us in these situations, and it’s a constant learning curve. I’m doing the best I can to learn the right balance each and every day.

  • Kelly Dabel moderator
    2 months ago

    Thank you so much for sharing BeccaFloyd. I know that your story will be such an encouragement to others here. So glad to hear that you were able to get out and have an amazing Kayaking adventure and see so many beautiful creatures and scenery. Those are memories you’ll have always. You are so right that one can only do what they feel is best for them when making the difficult decision to take a leap or not. Wishing you relief very soon. Happy anniversary to you and your wonderfully understanding hubby. Best, Kelly, Rheumatoidarthritis.net Team Member

  • flyingcars
    2 months ago

    Great article, sadly no one will really understand! I can see my husband reading this saying, “yeah I know!”, but then getting upset when I can’t form sentences, or do chores. It makes me feel better knowing my experience isn’t unusual though. I feel my RA never really goes away & its the fatigue that disables me the most. The pain sucks too, but the fatigue/insomnia & constant need for solid/good sleep/rest is what no one really gets! I sometimes can only sleep for an hour or 2. And just because I was sleeping, or trying to sleep, is no guarantee I will feel better, but it’s all I have to feel better. And when it does work, I feel so elated that I have a half a day or even a few hrs of energy, or just mental/physical “clarity”.

    I even stopped taking my pain meds because I thought they were causing my sleepiness, but 6 weeks after weaning off, I’m even more exhausted than ever! I went thru a sleepy phase for almost a week, like I could barely stay awake if sitting down! I had no choice but to sleep. But I have serious insomnia most of the time, these weird sleep fests are like every 6 to 8 weeks & usually last a week. I’m usually extra stressed, but not always, so it really makes me wonder how controlled my RA really is.

    Pain is probably the biggest unmitigated stressor though, I wish people would understand Rx pain relief is generally effective & safe with supervision & common sense. We have real chronic pain, not just chronic complaining about it. I hate summer too, it’s the worst for me!

  • Tamara Haag moderator author
    2 months ago

    Hi flyingcars,

    Thanks so much for sharing about your experience, as it helps us to know we are not alone. As fatigue is such an intense symptom for you, you may find you can relate to this article: https://rheumatoidarthritis.net/living/tired-of-tired/. It is definitely worth talking to your doctor about both your fatigue and your insomnia. You may have already done that, but I find that doctors often don’t ask about energy level and sleep quality, so these often have to be brought up by the patient. Also, over the nearly two decades I’ve lived with this disease, I have found that stress and RA activity both feed into one another. RA symptoms stress me out and stress increases my RA symptoms. I’ve taken steps to decrease the stress in my life (going to therapy, using a meditation app daily, doing some light yoga, quitting a really stressful job, practicing the ongoing work of not over-committing myself), and this has made a big difference in my symptoms. It certainly hasn’t eliminated them, but I have seen a definite decrease (especially after I quit the stressful job), so it is worth exploring ways to decrease your stress to try to stop the RA-stress downward spiral. This is an article I wrote several months before quitting that job: https://rheumatoidarthritis.net/living/stressing-about-stress/ in case it is at all helpful.

    Thank you for sharing your challenges, and I send you all the best as you contend with them.

    I’m rooting for you,
    Tamara

  • Indigo2
    2 months ago

    yes, fatigue & the “invisible” pain that no one else can understand….keep on moving as much as we can

  • jack5225
    2 months ago

    This is the best article I have ever read about the discriptions of RA and the various hazards that can take you down for days or even weeks. I knew this but have such a hard time trying to explain to friends and family. Thank you! Great writing, Tamara Haag.

  • Tamara Haag moderator author
    2 months ago

    Thanks so very much, jack5225! It is hugely rewarding to hear that my words help another person coping with this challenging disease. I appreciate you taking the time to share that! All the best, Tamara

  • Kelly Dabel moderator
    2 months ago

    Thank you for sharing your feedback jack5225. So glad this article was helpful to you. Please do feel free to share this with others if you’d like. Wishing you the best, Kelly, Rheumatoidarthritis.net Team Member

  • 2mra
    2 months ago

    You’re right as rain Tamara(supposed to rain today 🙂 ). I dislike this subject since it has wrecked many of my plans. I should be feeling fine and yet, I am not.

    This is one of our weeks vacation. I was at the cottage with the rest of our family but I had to leave after three days. They are up earlier making noise so that I couldn’t sleep. I even wore my ear plugs
    which didn’t help much. They didn’t mean to make noise but life is noisy. I asked my hubby to drive me back home because I NEED MY SLEEP.

    Thankfully, they are old enough to look after themselves. They’ll be home on Sat. I enjoyed myself just as much being home, having naps when I need them. I’m still tired but rested. f that makes sense. Thank you for the article Tamara and get some sleep. 🙂

  • flyingcars
    2 months ago

    When your vacation is no longer a vacation, one clearly has a nasty chronic illness. I don’t even try anymore. Home is where it’s at for me!

  • Tamara Haag moderator author
    2 months ago

    Hi 2mra,

    I’m sorry that you can relate and that you had to upend your travel plans, but bravo to you for taking care of yourself, listening to your body, and giving it what it needed. I hope that the time alone at home was restful and nourishing. I am getting over a travel hangover myself (https://rheumatoidarthritis.net/living/the-travel-hangover/), so I feel you . . . literally!

    Thanks so much for sharing your experience, as it helps all of us contending with this disease know that we’re not alone.

    Wishing you all the best,
    Tamara

  • Lawrence 'rick' Phillips moderator
    2 months ago

    I also lose my way when my tank hits empty. Thankfully, Sheryl tends to help me over these times. I wonder what might happen if the price of the refill might hit an embargo and the fuel tank may remain empty.

    So for me, I am working on a strategic Rick refill reserve. So far it includes 4 cases of peanut butter. But just so we keep this a secret dont tell anyone who is hoarding Peter Pan Peanut butter. I am just saying.

  • Indigo2
    2 months ago

    so cute…peanut butter can be a life saver 🙂

  • Tamara Haag moderator author
    2 months ago

    Oh Rick, your comments never fail to bring a smile to my face! Thank goodness for supportive spouses . . . and peanut butter. 🙂 Thanks for sharing!

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