New Insights on Fatigue

By Kelly Mack

3 min read

The struggle with fatigue and rheumatoid arthritis is persistent and well documented. Treating it, however, is very much lacking. The general practice has been to say that well-managed RA (also known as the elusive white whale) can result in less or zero fatigue.

In my personal experience, flares come and go, but fatigue is ever-present. Sure, I may experience variations in the severity. But, fatigue is part of my daily life with RA - well-managed or not. It’s there when I wake up (few people really understand how RA patients can wake up exhausted) and it’s there dogging me throughout the day. I am happy when I can get through to the afternoon before my bones start crying out for a rest.

Recent research on RA fatigue

For a long time, I have wished that researchers would delve deeper into RA fatigue to obtain a better understanding of this experience that could hopefully lead to possible treatments.

A new study was just published on the “Physical and Psychosocial Correlates of Severe Fatigue in Rheumatoid Arthritis” that verifies that factors outside the RA disease activity contribute to fatigue in patients.¹

Measuring factors related to fatigue level

Using a questionnaire, the researchers compared psycho-social factors (such as mood, self-efficacy, pain, disability, and more) self-reported by 228 patients and disease activity measures (such as Sedrate/ESR, C-reactive protein/CRP, and a joint disease activity score) to see how these various measures related to fatigue level.

Factors associated with fatigue

While it was a small sample, 42 percent of the patients reported experiencing severe fatigue according to the researchers’ scale.¹ These patients perceived their fatigue as frustrating or exhausting. They also scored worse on all the psychosocial measures compared to the patients not reporting severe fatigue.¹

Pain severity, role functioning (or being able to carry out their daily activities), depression, self-efficacy to address fatigue, worrying, helplessness, and lack of restorative sleep were all factors strongly associated with fatigue.

Fatigue levels similar to chronic fatigue syndrome

Interestingly, the researchers noted that a significant portion of the RA patients have fatigue at similar levels to chronic fatigue syndrome. Fatigue was also related to pain and functioning, not inflammation.

I can definitely relate to the helplessness and worry that accompanies fatigue. When it’s really bad, there is literally nothing I can do except rest and rest. The fatigue becomes an exhausting, frustrating cycle where I’m stuck not being able to carry out my activities and then struggle to carry on, which just worsens the fatigue.

RA disease activity is just one factor

It’s extra complicated or burdensome because there seems to be virtually no treatment for RA fatigue. The doctors tell us to take our medications and manage the RA, but for me, this does little when I have severe fatigue. Consistent management of my RA helps overall, but it doesn’t address the fatigue the way I need it to, nor does it help when I have a severe bout of it.

Not having a fatigue treatment definitely makes me feel low self-efficacy to address my fatigue because, outside of extra rest (which means putting life on hold), there is nothing that I can actually do that will make a difference.

Sometimes my fatigue arrives before joint pain and increased stiffness or problems functioning. It can be the advance notice that my RA is attacking. Other times, I just have the fatigue and the joint symptoms don’t change. But in my experience, fatigue is a significant and sometimes debilitating part of my RA experience.

We need to know more

I hope that researchers continue to study and better understand fatigue. Perhaps research on chronic fatigue syndrome may be translatable to RA patients. Or other conditions with fatigue as a symptom could contribute to treatments?

Wherever answers come from, in my book, they cannot arrive swiftly enough to alleviate the heavy burdens of RA fatigue.

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.

Join the conversation

Please read our rules before commenting.

jeanbean Member
I’m an RN and also have RA. I’ve done a lot of research. I think the fatigue is a related to the malfunctioning immune system, as the immune system brings on fatigue when activated. (think of how you feel when coming down with flu). I also have sever allergies and so I notice that during allergy seasons my fatigue is far worse. I have friends with MS and they are also challenged with extreme fatigue. Unfortunately, doctors don’t seem to take in account how debilitating fatigue can be. I get told to exercise and watch diet all the time as though it were that easy. I do make efforts to exercise but the fatigue stand in the way a lot. It’s also worth pointing out that methotrexate is a chemo drug and can cause fatigue and brain fog, etc. I’m not sure about other RA drugs but some of what we deal with are side effects of drugs used to treat us. Doctors often don’t take that into account either.
1. Kelly Mack Moderator & Contributor
 Hi JeanBean, I think that is a really solid idea. It totally makes sense to me that the immune system exhausts us to create fatigue. Agree that I wish there was a better medical understanding and treatments. Thanks for sharing your thoughts. Best, Kelly (RheumatoidArthritis.net Team)
L rick Phillips Moderator & Contributor
Kelly, I think you are so right about needing more research. RA is its own chronic fatigue syndrome. It is so difficult to have one of those days, which seems to last every day. What causes it? Is it medicine, the disease process, or something else. I hope someday we will learn. rick - moderator
1. Kelly Mack Moderator & Contributor
 Thanks Rick! 😀
casmere Member
Hi Kelly Mack, I fully understand the fatigue. The varing level of fatigue. I have recently had a couple weeks of reduced after months of extreme fatigue with an occasional day or two of lesser. My fatigue has come back but not to the extreme as before. As you say it has no collation to joint pain and swelling. I myself have little swelling but do have the pain going on. That could be because I am on Celebrex. Back in 2016 I did have lots of swelling when I went into a bad flare. The only thing I was on then was plaquinel. Thank you for your incite, knowledge and information on the study. Blessings Casmere
1. Kelly Mack Moderator & Contributor
 Hi Cashmere, thanks for sharing your experience and thoughtful comment. Hoping the fatigue is manageable for you! I find I sometimes need to take it one day at a time. Best, Kelly (RheumatoidArthritis.net Team)
asf2 Member
Thanks so much for this article. I also struggle with fatigue. It's the most troublesome and debilitating symptom I experience. It is a daily challenge. Now, seven years since I was first symptomatic and six since diagnosis and ongoing treatment, swelling and extreme pain are minimal. But the symptoms that might be managed by exercise-range of motion, loss of strength, stiffness-continue to be problematic. And very hard to tackle because after I do what I need to do to take care of myself and be with my family I cannot muster up the energy to stick to any kind of exercise routine. Like a lot of us, I'm a person who used to thrive on big hikes, lots of physical work, constant activity. The other thing that suffers, and contributes to my own suffering, is my career (or lack thereof). I'm an artist and I continue to make art. Fallen by the wayside, though, are the schmoozing, connecting with other artists, going to shows, taking or teaching classes- the things that make a career. They're also enriching. But they're gone. I don't like complaining, but it's very frustrating and upsetting. Depression, worry, et al may contribute to fatigue, but for me I'm pretty sure it's the other way around: fatigue causes sadness, frustration, isolation, depression, worry. I definitely experience all of those feelings. Lastly, I also have wondered about how my fatigue compares with the fatigue of people with chronic fatigue syndrome. From what I've read and heard, they're a lot alike and, sadly, both continue to be untreatable.
1. Kelly Mack Moderator & Contributor
 Thanks for your comment asf2. Yes, indeed. It is really hard how work and other important parts of our lives are negatively affected by the RA fatigue. I just try to tell myself to do what I can, little by little. Eventually it seems to add up and helps. Here's another article I wrote about research confirming that fatigue harms our ability to work: <a href='https://rheumatoidarthritis.net/living/fatigue-adversely-affects-work/' target='_blank'>https://rheumatoidarthritis.net/living/fatigue-adversely-affects-work/</a>. Hang in there and keep on fighting. Best, Kelly (RheumatoidArthritis.net Team)
fordownr Member
The Medical community in general does not acknowledge the level of impairment that RA fatigue causes. Like you, I wish they would do more in-depth research on fatigue and it's cause and effects.
1. Kelly Mack Moderator & Contributor
 Thanks Fordownr. Hopefully our voices will help raise the importance of this issue! Best, Kelly (RheumatoidArthritis.net Team)
sjowens05 Member
It is very frustrating because no one does not understand how exhausting it is being in pain all the time, up all night because of the pain. I am beyond tried all the time and it interferes with my life enormously. I have had several different medicines and treatments but nothing seems to help. It does bring out depression and I am one that tries everyday to get out there and work and stay upbeat but by the time i get home my family suffers because of the pain i am in. I do not have insurance so it makes it even harder, the studies that are out there require you to be on methotrexate which i found i am allergic to, so i feel like i am stuck in this rut and cannot get the help i need. My RA is just progressing worse and worse from head to toe. I was diagnosed 14 years ago and I am just looking for some type of relief and sleep
1. RHall Community Admin
 <inline-mention username="sjowens05" user-id="4155100"/> sorry you're going through this. It sounds like you feel like you're stuck on a loop without an exit. I just want to say I completely get it - and the experiences of some other community members here rings similar. One thing that may help is our new hub on RA Fatigue that has a host of articles that could be insightful if you haven't seen them already: <a href='https://rheumatoidarthritis.net/fatigue-tired' target='_blank'>https://rheumatoidarthritis.net/fatigue-tired</a> As for your statement about methotrexate - I would talk with your doctor. MTX isn't the best treatment option for everyone (so some never try it, some have) - and is really unique to the individual and their personal medical history. So you could work with your doctor to explore other treatment options outside of MTX. This treatment page can give you a good overview of different options: <a href='https://rheumatoidarthritis.net/treatment' target='_blank'>https://rheumatoidarthritis.net/treatment</a> Hope this helps! - Reggie (RheumatoidArthritis.net Team Member)
2. Kelly Mack Moderator & Contributor
 <inline-mention username="sjowens05" user-id="4155100"/>, really sorry to hear about your struggles and understand. I was recently flaring and the pain was keeping me from sleeping, which meant the next day I felt even worse and so forth. It took a lot of rest and extra prednisone to break the cycle. On the treatment issue, some of the drug companies provide treatment at low or no cost to people who qualify for their assistance programs. It may be worth looking into those options. I hope you find some relief very soon. Best, Kelly (RheumatoidArthritis.net Team)