“Supporting Fatigue” at the 2016 American College of Rheumatology Annual Meeting

The American College of Rheumatology (ACR) is a professional organization committed to improving the care of patients living with rheumatic diseases. Each year, ACR hosts a meeting attended by rheumatologists, researchers, and other rheumatology healthcare professionals – the 2016 meeting in Washington D.C. had over 16,700 attendees! This year I was pleased to see a session focusing specifically on the issue of fatigue and how doctors can help their patients better manage it.

Fatigue is very different than normal tiredness.

The speaker was Dr. Sarah Hewlett, the Arthritis Research UK Professor of Rheumatology at the University of the West of England in Bristol UK. Dr. Hewlett began her session by emphasizing the enormous impact that fatigue can have on patients living with rheumatoid arthritis. She explained that fatigue is very different than normal tiredness. Instead, it is overwhelmingly physical (weary, exhausted, drained, heavy, struggle) and overwhelmingly cognitive (can’t think or follow what’s going on, brain fog, absent presence). Fatigue also creates major consequences in patients’ lives – patients tend to withdraw, become unpredictable, refuse to plan anything in advance or commit, roles are altered, relationships may suffer, and there is an emotional toll when it feels like no one understands and professionals aren’t helping. While a 2004 study showed that 65% of patients prioritized fatigue, Dr. Hewlett pointed out that doctors too often focus on pain and ignore fatigue.

Dr. Hewlett and her research team have been working to raise the profile of fatigue in RA treatment, resulting in international agreement that fatigue must be measured in all clinical trials. There are many related factors – such as mood, pain, disease activity, depressive symptoms, sleep quality, and physical inactivity – that make it difficult to develop an accurate model of fatigue. But through qualitative interviews, focus groups, cognitive interviewing, and testing, her research team has developed the Bristol RA Fatigue scales (BRAFs).

Measuring Fatigue

The BRAFs are the first measure of fatigue that provides not only a global score but also a score for four different dimensions of fatigue: (1) living with fatigue, (2) physical fatigue, (3) emotional fatigue, and (4) cognitive fatigue. In addition, the team has developed numerical scales that measure fatigue coping, severity, and effect. The BRAFs have been translated into 36 languages and are freely available for academic and clinical use.

Dr. Hewlett encouraged the doctors in the audience to validate their patients’ experiences of fatigue by asking what fatigue is like for each individual and listening attentively. She also provided daily activity charts that can help patients identify trends, address boom and bust behaviors, and find a balance between activities that use too much energy and activities that refresh. Discussing fatigue in more detail may allow doctors to help their patients identify priorities and set measurable, achievable, and realistic goals. She also encouraged doctors to provide resources for managing stress, improving poor sleep, and incorporating regular exercise.

Fatigue is a complicated experience…

Overall, Dr. Hewlett’s presentation and published research has shown that fatigue is a complicated experience for patients and that many patients are struggling to manage fatigue at both a physical and cognitive level. Unfortunately, her research also shows that patients feel healthcare professionals are ignoring the impact of fatigue. Hopefully, with more data on the various dimensions of fatigue, doctors will be better able to support their patients in the future.

What has been your experience with fatigue? What has your doctor done to help? What do you think your doctor could do better?

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 (12)
  • lanikai13
    1 year ago

    Fatigue is my worst symptom but my doctor never even asks me about it! Sometimes fatigue comes from serious bouts of pain. So.etimes floods bouts of sleepless nights. And still other times just overtakes me, for what seem a like no reason at all. The worst part is that litterally no one gets yhis as a devastating symptom. Recently I had my job “downgraded” people reported to my boss that I often just looked out of it. Huff. I was so devastated and embarrassed. My answer, yes well I am ill! When I tell people I’m too exhausted to do something it’s as if they think I’m making up excuses.

    Honestly, as much as would like not to feel as if I’ve got the flu on and off, I’d be thrilled if people could simply understand. (That includes my doctor). It is demoralizing having ppl who’ve k own me for many years believing I’m lazy or stupid.all of a sudden. 🙁

  • CaseyH moderator
    1 year ago

    We hear you, lanikai13. I’m so sorry to hear about this, and to hear how frustrated you are. Please know we’re here for you anytime you need a friend to talk to (or a kind ear to vent to!). I’m so sorry to hear that your doctor isn’t listening either. Is it possible for you to see another physician? I know it may be difficult, however, feeling heard and valued by your provider is so important! Sending hugs and positive thoughts your way! Thank you for sharing with us! -Casey, RheumatoidArthritis.net Team

  • Piplover
    2 years ago

    Fatigue was one of the main reasons for my diagnosis. It got better for a bit after I started Methotrexate, but lately I’ve been struggling again. The last time I brought it up with my doctor she agree that the current meds aren’t enough, so she put me on Humira. I’m hoping it helps, since I would like to not feel like I’m constantly coming down with something. At least I’m lucky enough that my doctor didn’t brush me off.

  • Kelly Dabel moderator
    2 years ago

    Thank you for sharing your experience Piplover. So glad to hear that your doctor listens to you and is willing to make changes as needed to your treatment plan. Wishing you some relief soon. In addition to discussing with your doctor, this article on Humira may be helpful to you: https://rheumatoidarthritis.net/treatment/humira-reviews-how-well-it-works/. Kelly, Rheumatoidarthritis.net Team member

  • Lawrence 'rick' Phillips
    2 years ago

    My doctor talks often about pain and stiffness. He almost never talks about fatigue. Yet Fatigue is more important to me. In my experience, there is a clear disconnect.

  • Mariah Z. Leach moderator author
    2 years ago

    Hi Rick ~

    I agree that fatigue doesn’t get focused on as often as it should – especially considering how much it impacts our daily lives! The good news is that this session at ACR was packed with rheumatologists and rheumatology health care professionals! So maybe we can hope for a change in the future!!

    ~Mariah~ (Site Moderator)

  • MNwithRA
    2 years ago

    Thank you for writing about this. For about 4 years I have been devastated by my degree of fatigue. I made doc check thyroid, blood sugar, etc. but no suck luck. I’ve had RA for 28 so it was bound to happen. But, this is one of the big reasons I can no longer work. What a shock it was. I can never really plan ahead these days cause I have to assume I won’t have energy. I sleep 12 hours a night! Still tired. My doctor does listen. Wish there was a solution. I know exercise helps but not too much… an interesting balance indeed.

  • Mariah Z. Leach moderator author
    2 years ago

    Hi MNwithRA,

    I’m sorry to hear that you are dealing with so much fatigue – but I am glad to hear that your doctor is listening! I hope that you can continue to work as a team to find ways to improve your energy levels!

    Best,

    ~Mariah~ (Site Moderator)

  • GingerS
    2 years ago

    My Dr never asks me about fatique. Even though it plays a day to day factor in my life. I have to plan each day’s activities around my fatique. Example if I have errands to run, grocery store, library. I have to plan how much I can do before reaching the point of resting. Even my husband gets concerned because he knows when the energy goes I’m useless. It doesn’t always require I sleep. Just sit down and wait for the fatique to leave my muscles.

  • Mariah Z. Leach moderator author
    2 years ago

    Hi Ginger,

    That’s really frustrating that your doctor never asks you about fatigue. I would recommend trying to bring it up next time if it is having such an impact on your every day life. And, if your doctor doesn’t take you seriously, you can always refer him/her to Dr. Hewlett’s research!!

    Best of luck to you!
    ~Mariah~ (Site Moderator)

  • Peggychef
    2 years ago

    Totally ignored. Always throw in sleep apnea. …I have probably quit mentioning it much. Family just goes oh yeah I’m tired too…..

  • Mariah Z. Leach moderator author
    2 years ago

    Hi Peggychef,

    Sorry to hear that you feel your fatigue is ignored – I do understand the feeling. I agree that it can be particularly difficult for friends or family members to understand fatigue if they’ve never personally experienced it. But if it’s having a negative impact on your life, I encourage you to bring it up again with your doctor! And if your doctor doesn’t take you seriously you can always direct him/her to Dr. Hewlett’s research!!

    Best wishes,
    ~Mariah~ (Site Moderator)

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