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RA Fatigue Is Complex, Poorly Understood, and Not Treated

RA Fatigue Is Complex, Poorly Understood, and Not Treated

Hardly a day goes by on the rheumatoid arthritis Facebook site that a person doesn’t mention their persistent battle with fatigue. It’s one of the most frustrating symptoms of RA and there’s no treatment that directly affects it. Fatigue is a common problem seen in almost all autoimmune diseases.1 Your body feels completely wiped out, energy levels are low, it’s hard to move, and your cognitive function is poor. It’s difficult to communicate RA fatigue to those who don’t have the disease.

Fatigue has been ignored in RA treatment

Fatigue symptoms can come and go in seemingly random cycles.2 It’s silent and invisible to those around us. One of the best explanations of how it feels is to compare it to dealing with an infection like influenza. Depending on the study, it has been found that between 40-80% of RA patients experience fatigue and 40% experience severe fatigue.3 Pain and fatigue are among the two most common symptom complaints with RA patients. But while pain has been the target of treatment measures and systems, fatigue has largely been ignored.4

An increase in research focused on disease-related fatigue

Research on disease-related fatigue has increased dramatically over the past few decades. While there are numerous surveys (over 250 identified by one group of researchers!5) designed to measure disease-related fatigue, there is no consensus and commonly accepted measures.

Fatigue research is complex and multi-layered

One important finding in disease-related fatigue research is that it has many complex dimensions including mental, physical, motivation, sensory, mood, social, intensity, duration, quality of life impact, and activity impact.6 Researchers also believe that fatigue symptoms may be disease-specific.7

RA treatment doesn’t always lead to less fatigue

There has been a prevailing view amongst the medical community that if RA is effectively treated, then fatigue will automatically be lessened. But this simplistic and linear thinking was recently challenged by a study on the impact of treatment with an anti-TNF drug (e.g. Enbrel, Humira, Remicade).

Drug treatment explains a small portion of changes in fatigue

The researchers followed RA patients over a six-month period after they began anti-TNF treatment. They found that in some patients, fatigue did improve after treatment. But the drug treatment only explained a small portion of the changes in fatigue and the researchers stated that alternative explanations are needed.8 Unfortunately, fatigue is not usually viewed as a treatment target in spite of the fact that it is so debilitating.9

How to deal with RA fatigue

Fatigue is a real, incapacitating, and poorly understood aspect of rheumatoid arthritis. It’s important to learn how to deal with it. The Hospital for Special Surgery in New York proposed a detailed set of strategies.

  1. Acknowledge it and realize that you can’t predict or control it.
  2. Realize that those around you won’t understand it.
  3. Recognize that fatigue creates a feedback loop of symptoms-reactions-symptoms.
  4. Find balance and compromise when necessary.
  5. Adapt and give into fatigue when needed.
  6. Work with your doctor on medication adjustments.
  7. Try to rest and get sleep.
  8. Exercise as practical.
  9. Get help with depression.
  10. Adjust your work schedule.10

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.

  1. http://www.seattlecca.org/diseases/autoimmune-diseases-facts.cfm
  2. http://www.hss.edu/conditions_mastering-impact-fatigue-ra.asp#.U-T3QmRDuGc
  3. http://rheumatology.oxfordjournals.org/content/48/3/207.long
  4. http://www.ncbi.nlm.nih.gov/pubmed/8507213?dopt=Abstract
  5. http://www.hqlo.com/content/5/1/12
  6. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1808447/
  7. http://www.ncbi.nlm.nih.gov/pubmed/15016573?dopt=Abstract&holding=f1000,f1000m,isrctn
  8. http://onlinelibrary.wiley.com/doi/10.1002/acr.22387/abstract
  9. http://www.ncbi.nlm.nih.gov/pubmed/16208668?dopt=Abstract
  10. http://www.hss.edu/conditions_mastering-impact-fatigue-ra.asp#.U-T3QmRDuGc 

Comments

  • Eric P
    2 years ago

    A couple of years before I was diagnosed I went to my Primary care Dr. at the VA and complained that I was having a hard time with my memory. I was very concerned because I wasn’t just misplacing my keys, I was literally forgetting how to do things. I had some head injuries in the military, not serious, but I wondered what else could be causing my memory problems? She ordered a MRI but nothing ever came of it.
    Four or so years later, I have been diagnosed for two years, and I am still suffering a lack of ability to concentrate and sometimes, function. I wholeheartedly believe it is RA related even though I am dismissed when I mention it to my Dr. I also suffer from blurry vision which I believe is RA related also.
    Thanks for the article, it helps to see that its not just me.

  • tckrd
    3 weeks ago

    Eric P that sounds just like me. I was sent to a neurologist and I was told it sounds like lack of sleep. Wow what a revelation. And then the arthritis foundation tells us not to take naps and all of the other standard tricks. Sometimes I just want to scream. If it wasn’t for naps I would get no sleep.

  • Richard Faust moderator
    2 years ago

    Thanks for writing Ericthewelder. RA can absolutely have an impact on mental functioning. This article from one of our contributors takes a closer look at this issue and the science behind it: https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/.

    In addition and related to the previous issue is what is often referred to as “brain-fog.” Here is an article from one of our contributors describing her experiences: https://rheumatoidarthritis.net/living/the-fog-in-mind/.

    You may want to ask you doctor about these issues and remember, no one will look out for you like you. If you are concerned about being heard, you are always entitled to a second opinion. Best, Richard (RheumatoidArthritis.net Team)

  • Philanthartist
    3 years ago

    I read this article in April and revisited it again just now. It is always comforting to know that this fatigue is real and so controlling.

    When will the the article be written on creative ways to get your spouse/partner to also read these articles?

  • Erin Rush moderator
    3 years ago

    That’s a great idea for an article, Philanthartist! Thanks for sharing your thoughts. We’re glad to have you here and so glad that this article continues to resonate with you. Best, Erin, RheumatoidArthritis.net Team Member.

  • Philanthartist
    3 years ago

    Plus, on top of all of this, many of the meds we take cause fatigue! That really makes it challenging.

  • Chihuahuamom
    3 years ago

    How do you get others to understand your fatigue? If I say I’m fatigued or exhausted they think i jut want to nap. It’s not that I’m sleepy, it’s that my body can’t physically go on!!! No one else in my family had ra or fibro so they don’t get it. It’s like I’m alone. I don’t know what to do or how to explain it to them where they will understand that I’m not sleepy or faking it. Any suggestions?

  • Lauren Tucker moderator
    3 years ago

    Chihuahuamom,

    Thanks so much for your comment. We really hear you when it comes to fatigue and people not understanding, you certainly are not alone. While our community members may provide you with some feedback I thought these articles might be helpful.

    “Managing RA Related Fatigue” https://rheumatoidarthritis.net/living/managing-ra-related-fatigue/

    In addition I thought this article “When people just don’t get it” might be helpful too.
    https://rheumatoidarthritis.net/living/people-just-dont-get/

    Please come back anytime, we are happy to have you part of our community.

    Best Wishes,
    Lauren (Community Manager RheumatoidArthritis.net)

  • 1k8a33o
    3 years ago

    my friends don’t understand why i move slower than everyone else . i just feel like i carry a heavy weight on my back and shoulders all the time . i can not help but just get angry over this . any thoughts on how to handle this problem ??

  • Jillian S moderator
    3 years ago

    1k8a33o,
    Thank you for sharing your experience with us. It must be quite frustrating to have friends who can’t understand how RA effects your life. It makes sense that you are angry.
    One of our site contributors has a great article on anger. Though this article focuses more on her anger toward the disease, the principles of how to handle the anger might still apply to you. Also be sure to check out the comments at the bottom of the article:
    https://rheumatoidarthritis.net/living/anger-comes/comment-page-1/#comments

    Additionally, here is another great article about friends: https://rheumatoidarthritis.net/living/invisible-illness-invisible-friends/

    Let us know if there is anything else we can help you with!

    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • Shirley Sanders
    4 years ago

    It is the part where those around you don’t have a clue what you are going through. My husband doesn’t understand it. He is often disappointed when I don’t want to run here and there. Anyone have any suggestions ?

  • Andrew Lumpe, PhD moderator author
    4 years ago

    Hi Shirley, unfortunately, unless someone has direct experience with a debilitating, chronic disease, it’s hard to understand how it impacts daily living. Have you tried sharing information about RA? I’ve found that over time, friends and family members begin to see the impact on me.

  • Lauren Tucker moderator
    4 years ago

    Hi Shirley,
    Thanks so much for your comment.
    We really hear you on people not getting it, you might appreciate this article https://rheumatoidarthritis.net/living/people-just-dont-get/
    Many people in our community like to share articles from our website with loved ones, so I hope our website may be helpful for you to share with others. You’re definitely not alone and many people understand what you are going through. Please come back and visit.

    Best of Luck,
    Lauren (RheumatoidArthritis.net Team Member)

  • Mary Blooms
    4 years ago

    Thank you for the article. When I talk to my Rheumy about fatigue she assumes the biological I am on isn’t working. But I have had RA for about a dozen years and on my 3rd biologic. The fatigue never goes away.

    I have recently had to stop working due to a change in my duties that included reading hundreds of pages of documention a day and lots of data entry. I also had a new stress in my life (husband with terminal cancer) that caused severe depression.

    Since I long and short term disability through my work they of course wanted information on all my issues. They specifically stated that fatigue was not covered as It was “subjective.” I was actually being treated for it but it was just brushed aside as if that wasn’t important in trying to work an 8 hour day! The only reason I had been able to work for so long was due to the fact that my husband took care of almost every thing else.

  • Andrew Lumpe, PhD moderator author
    4 years ago

    Mary, so sorry for the major issues you’ve had to face. 🙁 Fatigue is a major aspect of RA. Are you seeking Social Security Disability? Most people don’t get it the first try and have to appeal.

    I hope you find some relief soon.
    Andrew

  • jopilc52
    4 years ago

    Thank you!! I read this article and responses thinking Wow! I wish there was a way to get family and friends to understand this fatigue. We know what needs to be done, housework, running errands, and just plain enjoying life as they do. I also suffer from depression and it is a constant struggle some days to even get out of bed and know that there are things to do but I just can’t. Like it’s a concrete weight around my waist. Again, thank you for this article.

  • JS Stephens
    4 years ago

    Thank you so much for ‘verification’ of the awful fatigue
    that goes hand in hand with RA. I have had RA for 20 years now and suffer with most all the symptoms daily. I am happy to have confirmation of the horrible fatigue from you because I just asked my rheumy about it last week since I finally took early retirement & that was a major factor. He said that fatigue is usually connected with fibromyalga & so he nixed the fatigue factor for me since I don’t have fibro! Seriously? I have a lot of brain fog & was starting to find it difficult to do my work effectively. Sometimes I feel like a lone ranger in this journey…so thank you for this invaluable tool of RANet!

  • Andrew Lumpe, PhD moderator author
    4 years ago

    Suzette, glad you found the article worthwhile. Fatigue is a very real, and documented aspect of RA and any doctor who doubts that doesn’t understand the disease that well. Thanks for being a part of the community!

  • GingerS
    4 years ago

    I too am battling fatigue every day. I wake up and make an assessment on the fatigue. Some days are better than others. The level of pain I’v found is directly related to the fatigue I feel. Thank you Andrew for all your wonderful articles. As newly diagnosed with RA. I find they are very helpful. Along with the readers replies.
    The question I have is about drug interactions. I was on blood pressure medication only when this first started. Now I am on 10 medications every day. I have often wondered how one drug is interacting with another. Thank God I do not have depression but am fighting the pain and fatique every day. It really helps to read these articles and every ones replies.

  • Andrew Lumpe, PhD moderator author
    4 years ago

    Aw, shucks Ginger, thanks for the kind words! Sorry for your recent diagnosis. Hang in there.

    Most of us take multiple meds. Make sure your doctors all know what you’re taking and ask about potential interactions.

  • Traci Judy
    5 years ago

    The fatigue and brain fog issues are really making things hard on me while trying to work full time, lately. No one I worked with understands when I try to say anything about how the workload and my fatigue has me overwhelmed. They try to be understanding by saying things like don’t let it get it to you, just do the best you can, etc but I still have to get the work done and that it takes more energy for me to get the same amount of work as they do with half the effort. As everyone one here knows it takes a lot of extra energy to focus through the brain fog. I’m thinking I will have to shift my career or stop working completely soon. Sorry this is such a rant, I haven’t had anyone who really understands this to talk to about it.

  • sadie
    5 years ago

    The biggest challenge for me is working a full time job while experiencing chronic fatigue.My boss does not understand RA and has no sympathy,and therefore is not accommodating to my needs for time off.I am looking into using FMLA or the ADA for back up as I fear loosing my job. Somedays I feel that I am sleepwalking through the day!

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Sorry Sadie. FMLA and ADA were written to protect you so do rely upon them. And work with your doctor as needed.

  • debbie payne
    5 years ago

    Yes fatigue is bad. But I also have large granular lympsatic? leukemia from the RA. This keeps my white count below 2 most of the time. Does anyone else have this?

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Debbie, l’m sorry you’re dealing with a double whammy of RA and leukemia. I know that the large granular type is associated with RA but I’m guessing the numbers aren’t real high. Are you currently being treated? Your white cell counts are probably low and contribute to fatigue.

  • Jane Burbach
    5 years ago

    Good article! It seems that fatigue is as bad or worse than pain for me. The fatigue has improved with MTX and plaquenil since diagnosis over the last year but it’s not anywhere near what has been my normal. It doesn’t seem to fully register with my rheum doc. I wonder if meds like modifinil or adderall or wellbutrin might help. It’s interesting to consider. I don’t take any pain meds other than OTC so it’s not like that. Fatigue is the worst thing affecting my quality of life. And it can be depressing too. Good article.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Hi Jane, thanks for the compliment about the article.

  • Sedders
    5 years ago

    This is a relief. My pain and disease activity have been steadily improving for 4 years, but I’ve been overwhelmed with fatigue for the last 1.5 years. The comments here also name it so well. I have an amazing rheumy, but he denies the fact fatigue is from my RA.

    Am I reading this wrong, or is this sentence incomplete? “But this simplistic and linear thinking was recently challenged by a study on how treatment with an anti TNF drug (e.g. Enbrel, Humira, Remicade).” Treatment with an anti TNF drug does what?

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Good catch on the wording. It was supposed to just say how anti-TNF’s impacted RA. I reworded it.

  • Jan
    5 years ago

    Thanks for the article on fatigue. I liked the strategies set by the Hospital for Special Surgery in New York, especially that fatigue is unpredictable at times. Although, sometimes it hits just when I want to do something. It’s almost like the excitement and planning before the event gets me tired. The morning of the big event, I wake up exhausted and sometimes I can barely get out of bed. Other times it comes on suddenly and all I can do is drag myself to bed. There seems to be different types of fatigue too. Sometimes I feel like I ran a marathon but I’m not sleepy, other times I feel like I’ve been walking through Jello or with cement shoes, just “pooped out”. Other times I can’t stay awake and I HAVE to close my eyes & nap for a bit. Argh. Very annoying!
    My question: the article stated fatigue may be disease-specific, can you share more info on that? Ie: which diseases and how each are affected by fatigue?

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Glad you liked the article Jan. I do not like it when I wake up tired. Sleep is supposed to be restful! Jello or cement shoes is a great analogy!

  • Wren moderator
    5 years ago

    Hi Andrew,

    You’ve identified an RD symptom that truly, few researchers have given much attention to.

    Not long ago, I didn’t think much about fatigue. Others with RD wrote about it frequently, pointing out how hugely it affected their lives. I understood, but I didn’t really get it. I read the famous “spoon theory” and wondered what it was all about.

    Because for me, the main symptom had always been pain. Just pain, whether it was a little or a lot. And I figured, sure, when I hurt, I’m going to get tired more easily. Sure, when I hurt, I don’t sleep very well, but I have to keep on with life. When I hurt, it makes sense that I feel fatigued. Who wouldn’t? And then, yes, I just kept on keeping on, in spite of it.

    NOW, however, I get it. Because now, I find myself frequently fatigued–just plain ol’ worn out–often when there’s little pain to blame it on. With help from my rheumatologist, I sleep better than I did, only really having trouble when my pain levels are higher (as they usually are at night). I frequently wake up tired in the morning, even when I’ve slept really well. And yes, there’s pain, but it’s usually under control by the time I’m ready to start my day. (You know, plenty of coffee, a warm shower to loosen everything up, sleepiness fading as the brain kicks into gear…)

    So yes. Now I understand the spoon theory. NOW I consider how whomped I’m going to feel after a day taking Mom to doctor’s appointments, looking at new prospective dwelling places, and earning my livelihood, preparing meals, driving all over the place… I end up dragging before it’s even half over.

    Maybe some of this is simply that I’m older now. Maybe it’s because I’m not in very fit, physically. Maybe it’s just that ol’ RD fatigue, finally checking in and saying “Hi, Wren. Pleased to meetcha. I’m planning to stick around awhile, so get used to me.”

    Fatigue adds stress, too, because it slows me down and sometimes, being slowed down affects others in my life. And stress can cause new–or more–pain.

    Yes. I hope researchers will start studying fatigue with more (heheh) energy. It’s a very real problem. And to all you folks out there who’ve dealt with this now for many years, I’m sorry I didn’t get it. I sure do, now.

    Great post, Andrew. Thanks. OH–I wonder if whole-body inflammation causes fatigue (along with/without other symptoms)?

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Thanks Wren. I believe that there is a pain/fatigue/stress interaction. And yes, inflammatory processes have to be a main contributor to fatigue. It’s similar to when someone is fighting off an infection.

  • Connie Rifenburg
    5 years ago

    This article sure hit home with me. It may sound funny/strange to others, but I’ve been “trying” to do swimming exercise for 7 months. In those 7 months, I’ve managed to go 3 times. I’ve loved it…when I go, the key is to find the energy, desire, transportation, time, and pain level, all on the same day. I make excuses. I know, because I have to drive to the gym with a pool, and I say to myself, “if I had a pool where I live, I would go in more often”. But is that true? Or is it the fatigue that makes the effort of going to the pool a vicious circle of excuses? I don’t know, but I’m trying to find a way around my own excuses. Now that I read that fatigue is particularly frustrating to other RA patients, I don’t feel quite as guilty about my excuses.

    Andrew, as usual, you hit the bullseye with this issue. It is just as your title states: “Complex, Poorly understood, and not treated”

    So many of my medications have a side effect of sleepiness, or fatigue. I sometimes feel like I could sleep away my life with small interludes of wakefulness. That’s not how I want it.

    I have discussed moving around some of the medicines to be taken in the late afternoon or evening. But I have sleep apnea, and when I add all my “depressants” at bedtime, I’m a little afraid that I will depress my breathing past what the Cpap can even overcome. So, I have to take some of the pain medication during the day, I take it sparingly, but can’t just wait until the pain is so bad. I have to take it to “prevent” the pain level from reaching critical level.

    So others on here have the same issue with medications interfering with their normal wake cycle, as well as fatigue. Are we adding to the fatigue caused by the RA by taking medications that depress the system too?

    If so, what are the answers? There are 4 meds that particularly affect my brain function. Lyrica, Prozac, Oxycodone, and Klonopin. With all that in my system, plus Aldactone,Prednisone,Pramiprexol,and Protonix… I’m a walking pharmacy! Not to mention the OTC vitamins,etc.
    I also get a monthly infusion of Orencia, an injection in my eye monthly of Avastin, and drops daily for Glaucoma.

    I think it’s unrealistic to believe that the human body can overcome all these drugs, plus the disease by just “wanting to”, so unless someone here has a better idea, I’ll just keep trying to get to the pool —- even if it’s only 5 times this year. 🙂

  • Kathleen Pimlott
    5 years ago

    Your response to this article really hit home with me. I maintained an expensive gym membership without using it for over a year for all the reasons you outlined so clearly, but canceling meant (in my mind) that I had given up. Finally, the financial reality became more important than my pride and I admitted that I just did not have what it took to get there and use the pool. It is not possible to overcome this disease with any of the simplistic approaches that people who do not know this disease from the inside suggest. I agree that just “wanting” to is not enough. If “wanting to” feel better was sufficient, none of us would still be suffering from this malicious disease. I know I shouldn’t, but I get so frustrated with well-meaning friends who make suggestions. “You should get out more.” “You should drink more _____ (fill in the blank).” “You should stop eating _____ (fill in the blank).” “Have you tried _____?” Do they think it is that simple, and the rest of the world hasn’t figured it out? If that were true wouldn’t this disease be a dim memory?
    I am just coming off a bad flare and the fatigue was just crushing. While everything was so inflamed all I wanted to do was sleep. It is SO nice to have a forum for RA warriors to talk and support each other. Thank you for your post.

  • Carla Kienast
    5 years ago

    Thanks, Andrew. I often think about fatigue as the “invisible elephant” in the room because so many RA patients have it but, as you pointed out, it’s seldom addressed. Fatigue can be just as or more debilitating than actual pain, impacting the quality of life. (Just ask me, I know!)

  • JoAnn Clarke
    5 years ago

    Loved your article on fatigue! I myself try to gauge my day the moment my feet hit the floor. My feet will tell me how my day will be-realizing this- I have also learned low-impact water exercise really increases my endurance & stamina. It’s been a long battle- but since my diagnosis over 20 yrs ago- I know I must pace myself to conserve energy! It takes time & a lot of patience-just hang in there!

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Thanks JoAnn! Exercise can help with endurance and stamina. Sometimes I just don’t have it in me to do it!

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