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Tired of Being Tired

Tired of Being Tired

A few months before my rheumatoid arthritis diagnosis in 2000, my body was struck by a number of symptoms I couldn’t make heads nor tails of. Studying abroad in England, my term at Oxford started with noticeable swelling in my joints, followed by aching pains. I knew that something must be wrong, but it wasn’t until I was hit with debilitating fatigue that I sought British medical care. I was so tired that I thought I must be ill. The doctor wasn’t sure what to make of my symptoms, and he did something he said was rare for him and prescribed antibiotics. Obviously antibiotics aren’t going to help an autoimmune condition, but not knowing that was what I was contending with, I was disappointed when the medication didn’t help. I felt so weak and tired that I spent most of my last two weeks abroad in my room, and started eating tons of protein and iron, grasping at dietary straws.

Considering the extreme fatigue I experienced before my diagnosis, it seems like I should always be conscious when this RA symptom is at play. Yet, even after 15 years with the disease, there are still times when I catch myself wondering why I’m so very tired, and then eventually, while drinking yet another cup of coffee or a vitamin drink, it will dawn on me: this is RA fatigue. The pain of RA demands so much attention that I never find myself wondering why my joints hurt so much. I always know it’s my RA. Pain is like a bucket of red paint thrown on the canvas of my body, whereas fatigue is like a thick layer of dust. It’s not as immediately recognizable, but it makes the picture dull and fuzzy. While pain roars in my face, fatigue talks about me behind my back.

Yet, there are times when the fatigue is so intense that it does rise to the forefront of my consciousness. While the pain may feel like a knife, like a vise, or like fire, fatigue can have the crushing weight of a sledgehammer. Lately I’ve been in a flare, and the fatigue has been like one of those heavy aprons used during x-rays to shield radiation. The weight of it pins me to the couch or the bed, and siphons away any motivation to move. I make it through the workday with difficulty, and when I come home I feel like I have no energy left, that I am running on fumes. My young children want my attention, but rather than play with them I watch them play around me as I lie on the couch. Sometimes we color together, with me supine and using a clipboard, while the kids sit at small chairs pulled up to the coffee table. Other times I’ll read to them, but when I can’t even summon up the energy for that I resort to audiobooks. I look eagerly forward to bedtime, and once it arrives I fall asleep along with the children at 8:30pm. Even after nine hours of sleep, I wake to the sound of my alarm wishing I could stay in bed all day. When the weekend comes, there have been days where I spend the majority of the day in bed or on the couch, yet the fatigue is like a voracious beast whose appetite is never sated in spite of how much it is fed.

It can be hard to communicate this to others, as the depth and the heaviness is so much greater than what I associate with the word “tired.” “Exhausted” comes a little closer, but still doesn’t do the feeling justice. I am eagerly anticipating the end of this flare and the waning of my fatigue, when I won’t have to try to find a way to describe how it is that I’m feeling and I can again have the sense that I have a good deal of control over my life.

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

  • wannabe-healthy
    2 years ago

    Tamara, Everything you said about fatigue is so right. I told my husband recently it seemed like I was made of heavy lead, and couldn’t move easily. Your descriptive writing skills are top notch. I’m sorry you have to understand this feeling with small children. I have 4 grandchildren who want my attention, but luckily my children are grown. It is difficult not to be depressed or feel guilty when I experience this fatigue. I am grateful that I was once active and I have great memories of the many places my husband and I have gone, and many things we have done. Right now I’m at a place that has me very down and out, but inside I know it will pass. I long for the day I have a bit of energy and hope it comes soon. Best wishes to you and your family, Donna

  • Tamara Haag moderator author
    2 years ago

    Hey wannabe-healthy,

    I’m sorry you’re having such a hard time! I definitely know what that’s like. I’ve been diagnosed for 17 years, and there have been many times when I’ve felt discouraged and disheartened. But as you say, these feelings pass. I also have gone to therapy to help process these emotions and work on my perspective, and that has been very helpful.

    Thanks so much for sharing your comment and your experiences. It’s always wonderful to hear that something I have written is helpful or validating for someone else.

    Gentle hugs,
    Tamara

  • Richard Faust moderator
    2 years ago

    Thanks for writing Wannabe-healthy, but sorry to hear that you are struggling. I am glad you are reaching out to a place you can get support and information.

    Fatigue ranks right up there with pain at the top of problem issues brought up in the community. This article from our editorial team looks fatigue, with some ideas on management: https://rheumatoidarthritis.net/symptoms/fatigue-and-weakness/.

    The emotional and mental aspects of RA often get overlooked, but are extremely important. In this article from one of our contributors she writes on the importance of not neglecting these aspects: https://rheumatoidarthritis.net/living/dont-neglect-mental-health/.

    Finally, feelings of guilt are more common with chronic diseases like RA than many think. This article from one of our other contributors looks at dealing with these feelings and realizing that it is o.k. to need rest, to take care of yourself, and simply fo the best you can: https://rheumatoidarthritis.net/living/not-guilty-2/.

    Please know that you are always welcome here and keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • GLAKATOS
    3 years ago

    I think it should be called pathological fatigue.
    I feel like I’ve had it for at least 6 months. There’s so many things that take much longer to do…or don’t get done. I know for me it interferes with my life.
    Pathological fatigue and pain definitely has affected my quality of life.

  • Tamara Haag moderator author
    3 years ago

    Thanks for sharing! Yes, I know just what you mean. It can seem impossible to feel “on top of things” when every task is a struggle. Know that we understand and are here for you any time you want to share what you’re going through! Wishing you all the best, Tamara

  • Gayla McCann
    3 years ago

    Has anyone ever asked about or considered Adderall? I’m going to ask my rheumy on my next visit. I’m experiencing the same things, the fatigue, the brain fog…its just so frustrating. I have a non RA friend who has recently started this drug and he swears by it. Says his thoughts are clearer and energy way up. Just curious if anyone else has tried it, I’m so sick and tired of being sick and tired!

  • Tamara Haag moderator author
    3 years ago

    Hi Gayla,

    Thanks for reaching out with your question! It’s an interesting one, as I hadn’t heard of Adderall for fatigue. However, I did take it for several months (not for RA), and it is true that I had more energy and experienced less brain fog.

    Unfortunately, it was really hard on my stomach and affected my emotions/mood, as I became increasingly depressed while taking it. I thought I was depressed from the impact RA and my stomach issues were having on my quality of life. When I went off of Aderall to see if it had anything to do with my GI issues, I was amazed to discover that 48 hours off of the drug the severe nausea I’d had for months disappeared completely as did my depression.

    So Adderall did not end up being a beneficial drug for me. That being said, my doctors said the stomach issues I had were rare and the depression very rare, however a psychiatrist I consulted said he had seen the same thing with two other patients (among the many, many patients he’d treated who did not experience mood swings from Adderall).

    Therefore, if your doctor ends up recommending Adderall for you, just bear in mind that it, like most if not all medications, can affect different people in very different ways. That being said, it is entirely possible that you might tolerate it well and not have any of the issues I experienced.

    Thanks again for sharing with our community. I do wish you all the best in your search for relief from the ravages of intense fatigue.

    Take Care,
    Tamara (Site Moderator)

  • MaryMF
    3 years ago

    They need a new name for it. When you say fatigue people think your tired, but this is way beyond that. It makes you crazy, guilty, and it’s so bad you feel you can’t live through it. That’s scarey. I don’t even know atm how many RD’S I have. I have AS, and fibro, with possible RA, and Sjogrens poking it’s head up. I can’t remember alot! Whole days, I forgot stuff to say lol. This site somehow shows up when I need it. It’s the only thing that helps, if you don’t have it you will never understand it. Thank you everyone!

  • Tamara Haag moderator author
    3 years ago

    Hi Mary,

    Thanks so much for sharing your experience and perspective! I agree that the word “fatigue” is often lumped in with much more mild symptoms. It is s a term that has been watered down over the year, and no longer describes the intensity of the symptom as we with RD experience it. A new term for fatigue and for Rheumatoid Arthritis could help more people understand the complexity of our experience.

    I am glad to hear that you find this site helpful. It is true that people who don’t have the disease just can’t understand all the ins and outs of living with RD, and some people don’t even have a general idea of what it’s like to have a chronic condition, much less an autoimmune one. I’m glad you’re in our community and that we can all validate one another’s experiences living with this disease.

    Wishing you all the best,
    Tamara

  • pardyfalcone
    3 years ago

    I too have been in a never ending flare. We sold our home, moved and life has been non stop. By the time I get into bed, it’s hard for me to even communicate to my brain to move my arm to pick up the remote (i watch a little TV before I fall asleep). My brain is so tired, it no longer relays the messages to the rest of my body. It’s actually a scary feeling.

  • Tamara Haag moderator author
    3 years ago

    I’m so sorry the fatigue has been so intense for so long! A move is indeed a huge enterprise. I wrote an article about “activity hangovers” (https://rheumatoidarthritis.net/living/activity-hangover/), and it sounds like all the activity involved in a move is like being on an activity bender, with an activity hangover every single night. That’s intense, as I know what how hard it can feel to keep up with my normal life, so keeping up with a much longer to-do list and all the stress involved in moving can really pull a whammy on anyone. I do hope that as you get settled in your symptoms will decrease. In the meantime, I wish you much rest and comfort as you soldier on. Wishing you all the best, Tamara

  • Lisa Butcher
    3 years ago

    It’s nice to actually know I’m not alone in this and I’m not crazy.
    My family “knows” the symptoms, but understanding is another thing. They are usually great, though, especially my husband! I’m so lucky to have him.

  • Tamara Haag moderator author
    3 years ago

    Thanks for sharing Lisa! Yes, knowing and understanding definitely don’t always come together. I’m so glad you have a supportive husband. I am likewise fortunate in that department, and life would be so much harder without his help and support. Here’s an article he inspired that might be of interest to you: https://rheumatoidarthritis.net/living/love-letter-supportive-spouses/. Thanks for being a part of our community!

  • Cathy at arthritiswisdom.com
    3 years ago

    It is my opinion that fatigue is not appreciated to the extent it can interfere with day to day living. Specifically, I notice the inability to get my thoughts to the speech center in order to verbally communicate. I can think alright, but I can’t retrieve words I need to convey my thought. This all gradually improved after getting a DMARD and biologic on board. It really improved after a surgery. My theory is inflammation just wears me out!

  • Tamara Haag moderator author
    3 years ago

    Hi Cathy, Thanks so much for sharing your experience and thoughts! I agree that the impact of fatigue of quality of life tends to be underestimated. As you mention the difficulty in word recall, I thought you might be interested in reading this article on “brain fog”: https://rheumatoidarthritis.net/living/the-fog-in-mind/. I’m so glad yours improved with surgery! It’s fascinating how these symptoms respond (or don’t) to various interventions. Thanks for being part of our community!

  • Deena
    4 years ago

    Tamara I can completely relate. I was already Battling with RA but had no idea what True Fatigue was. I don’t know if my situation is “Not of the Norm” or not but I started having gastrointestinal problems along with my other symptoms. I was losing 2-4pounds a week and just could not function at ALL!!!. Test after test then I was finally diagnosed with H pylori/peptic ulcer.It has taken right at 2 years to just begin to feel like myself. People that have never experienced this type of fatigue have no idea and it’s impossible to even try to compare it to anything else. I am fortunate because I have an Awesome husband who was willing to sell everything we have worked for and own to find Someone, Anyone who could as he put it “Fix Me”. I truly hope that you have the same type of support. My children are grown,Thank God, but my oldest grandson had some difficulty understanding why I wasn’t able to Play like we used to. Out of All of this Battle that has Hurt me the most. I’m preying I’m on the upside now since I truly believe the only way I could have been worse is if I was Dead and believe me at times I wished I was..My saying was I’m Sick and Tired of Being Sick and Tired so I’m proof that there is Hope that there will be Better days…Hang in there!!!..:-)

  • Candy
    4 years ago

    Deena They want tp test me for the Hpylori…yuck. what did they give you to get over that. not sure what it is so any info you can give would be great!

  • Tamara Haag moderator author
    4 years ago

    Hi Deena, thanks for sharing these challenges you’ve faced! It sounds like it’s been a very rough road, but I’m so glad to hear that you’re getting to a better place with your health. Yes, I too am blessed with a very supportive husband, and I shudder to think of life without him. I’m so glad you have your husband’s support. It makes such a huge difference!

  • Kimberly
    4 years ago

    This article was just what I needed today. Lately, my fatigue has been so bad that it’s messing with my memory and causing me to forget some pretty important things. It’s been noticeable enough that my husband actually went with me to be rheumatologist appointment today. While he was exploring drug side effects and depression as possible causes to my forgetfulness, she reminded him that I have this disorder that puts my body in constant pain. (I have fibromyalgia on top of the RA). Plus, it appears that I’m going through a flare in my feet right now and retaining a boat load of water from something. Your article reminded me that I’m not crazy and that my fatigue is real and not necessarily caused by anything but what it’s always caused by. Thanks!

  • Tamara Haag moderator author
    4 years ago

    Hi Kimberly, I’m so sorry that you’re having a rough time, but glad that you found this article helpful! I know exactly what you mean about feeling like you’re crazy (I also sometimes suspect myself of being a wimp as well), and I’m glad that we can validate one another in these reminders that this is not in our heads! I hope you find some relief soon, Tamara

  • Linda
    4 years ago

    Hi! Tamara. You posts often speak to me. I sometimes feel like you must be able to read my mind! It’s so comforting to know that others struggle with fatigue as well. My fatigue is so incredibly strong and disabling at times that it severely impacts my ability to do my job (I’m a therapist). A few months back a colleague with lupus suggested I ask my rheumatologist about a drug called Provigil. It is primarily prescribed for narcolepsy or excessive daytime fatigue due to sleep apnea wherein fatigue is not entirely resolved with a Cpap but seems like it can really help with autoimmune related fatigue. It has truly felt like a life-saving miracle to be able to take something that helps. I only take it on work days. Without it I’m not sure that I would have the ability to continue working. If your fatigue does not abate soon it may be something for you and your doctor to consider. Thanks for your posts. Warmly, Linda

  • Tamara Haag moderator author
    4 years ago

    Thanks so much for that information, Linda! I’d never heard of a drug for fatigue. Thank you for sharing this tip and your experience. I’m so glad you found the article to be helpful! Wishing you all the best, Tamara

  • Roylan
    4 years ago

    THANK you !!! I loved how you described the weight of RA fatigue. It IS more than exhaustion. I have often described it as magnets pulling me down. Tired sounds lazy or a good nights sleep will cure…… RA Fatigue is WORSE than joint pain!!!! Thanks again, I printed it for my hubby to read. He just doesn’t get it!

  • Tamara Haag moderator author
    4 years ago

    I’m so glad you found the article to be helpful! Yes, it can be so hard to describe. I hope this article helps your husband understand. Wishing you all the best, Tamara

  • Sharon Grooms
    4 years ago

    I really feel for you Tamera. The fatigue is horrible in itself but I go on really bad guilt trips by not being able to do the simplest household task. Thank God for a wonderful and understanding husband. I don’t know how you manage everything with 2 small children.There are times when a person is unaware that they are losing blood (or not producing enough). This is more common than you might realize. I just had a transfusion of 4 units about 3 weeks ago. This has happened about 6 times since 2007.Even though hemo going up, still have that awful fatigue. People should be sure to let their doctor know when they are experiencing extreme fatigue. RA is a horrible disease that the average person just doesn’t seem to understand is so much different from Osterarthritus. Hope you feel better soon.

  • Tamara Haag moderator author
    4 years ago

    Thanks so much for sharing this interesting additional cause of fatigue, Sharon!

  • Steppiemum
    4 years ago

    Wow, your timing is terrific, or mine is for reading this! I get hit about 2:00 pm with unbelievable fatigue, that even sitting in a recliner is too much effort. I started Rituxan a month ago and waiting for something to celebrate. Even if it does help, I have Sjogren’s as well, so I have double fatigue if that is possible. I hate to say it, but misery does like company.

  • Tamara Haag moderator author
    4 years ago

    I think we all find it helpful to know that we’re not alone in our struggles, as it’s validating to hear that others feel the same way we do. I hope the Rituxan starts kicking in soon! Wishing you all the best, Tamara

  • joan
    4 years ago

    You have beautifully described the monster of fatigue. I too find myself saying “Why am I so tired?” all the time.

  • Tamara Haag moderator author
    4 years ago

    I’m glad you found the article helpful, Joan! Thank you for sharing!

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