How Do You Deal With The Fatigue?

I’ve always been a huge fan of incorporating lifestyle measures, stress reduction, mindfulness-everything, gentle exercise (which I’ll admit, is the one item on this list where I can use the most improvement) and a healthy diet into my rheumatoid arthritis treatment plan. What is your experience with these issues and their relationship to fatigue? When my RA is most active, nothing seems to help but frequent naps…but on more mild days, I’ve found that all of the items mentioned above really help. Dr. Irwin Lim–a rheumatologist from Australia–asks the same, in the following post.

By Dr Irwin Lim, Rheumatologist

Rheumatoid arthritis, as well as the other inflammatory arthritides, are very much better treated in this day and age. And yet, it’s common to hear patients speak of tiredness or fatigue. Sometimes, this is profound and crippling.

When the disease is active, and I can detect objective signs of inflammation, the disease activity is an easy scapegoat. The more active the disease, the more systemic the symptoms. Fatigue will likely occur.

However, it’s much harder to explain when the disease seems well controlled. This is especially true if the disease is felt to be in remission.

If I cannot detect swelling of joints, and the patient denies joint symptoms, and the monitoring blood tests are all normal, how do we explain continuing fatigue?

I don’t have that answer.

Sometimes, it’s attributed to a side effect of the medications used. Sometimes, fibromyalgia is diagnosed as a coexisting problem and this is blamed.

I don’t think the answer lies in more medication.

Instead, I think lifestyle issues need to be addressed. Patients who have lived with a chronic disease, become deconditioned. Pain and stiffness reduces normal activity. Over time, muscles, tendons and ligaments become weak. In some, weight gain is an issue. Tolerance of effort reduces.

I believe it’s important to act early in the disease to encourage mindful eating and regular, targeted exercise to address these issues.

Randomised control data? I’m not sure that exists but it does seem to make common sense.

Medications can only improve one aspect of rheumatoid disease. Lifestyle measures remain an important, but unfortunately, often forgotten goal.

If you’re a patient, please share your experience with fatigue. If you’re a doctor, please share how you deal with this difficult symptom.

Dr. Irwin Lim obtained his fellowship with the Royal Australasian College of Physicians in 2003 in the specialty of Rheumatology. As director of BJC Health, Irwin developed the initial clinic in Parramatta to a multisite and multidisciplinary group. He strives to develop innovative, effective treatment solutions for patients suffering from chronic disease.

For more information, please visit www.bjchealth.com.au.

9 Comments
9 comments
  1. Amy says:

    Big topic, here. I am always fatigued, but have had hard to manage RA for the past ten years. Despite biologics and dmards, it’s been a consistent flare with fatigue being a constant for the better part of three solid years. I began a gentle work out regimen at one point involving swimming and bike riding and flared worse. My dr told me to hold off until the disease was better managed. That was 2 yrs ago. Also whenever I exert myself physically I get more tired….I never get that rush of energy some people get. The only way I cope is sleeping as much as possible, eating well, taking my meds, and plugging through it, every single day. I try to walk as much as possible and have responsibilities that keep me moving at work, which is good, but the fatigue and pain have taken most fun and enjoyment out of my life. Coffee helps a bit in the morning! I wish there was a magic trick to make it all go away.

  2. abcsofra says:

    For me getting my thyroid issues under control did help some but there are days were I just have to sleep and sleep and sleep. Sometimes I think the fatigue reflects our body fighting itself. It is just tuckered out.

  3. Jules says:

    Fatigue is my biggest issue. I have often said, I can live with the pain, it’s the fatigue that really bothers me both physically and emotionally. Being constantly ehxausted tends to steal your life!

  4. fridawrites says:

    I feel that there is a big disconnect between physicians and patients regarding fatigue. As with back pain, fatigue is not very quantifiable (perhaps it needs a scale as well), and that’s probably part of the problem. There’s:
    1. generalized more minor fatigue–Superwoman syndrome, patient does too much and doesn’t realize it
    2. moderate fatigue–patient has to self-limit activity (limited “spoons,” maybe 20 per day) so as not to have a major crash and burn
    3. then there’s dripping, I-can’t-get-up **fatigue.** (patient operating on 5 spoons or less; 2 spoons for getting dressed, can’t warm meal, sleeps 12+ hrs, etc.)
    I think sometimes patients are complaining of something close to #3 and physicians see it as #1 because the patient is busy and active but is beginning to become very ill.

    Perhaps patients should write out what they are able/not able to do on a typical week. And whether the fatigue is more like a severe flu that is disabling or whether they have difficulty doing what they used to: walking 3 miles, working 40-50 hours a week, volunteering at the kids’ school, etc. The process itself could be illuminating to both patients and physicians.

    Level 3 fatigue can be a hallmark of all kinds of scary illnesses like leukemia and more short term viruses such as mononucleosis and should be investigated. Level 1 and 2–exercise, strengthening, but not overstressing yourself/trying to take on the world. Sometimes mild or moderate fatigue is caused by doing too much, not too little.

    Disabling fatigue was one of the first symptoms right before my spondylitis reached its worst–and I didn’t understand why and felt guilty and “lazy” though I kept trying, trying, trying.

    Fatigue at this point is a hallmark of illness and it’s difficult to push beyond it; it flares in the same way that pain and fever do. I have to push/build up after I begin to recover (while doing all I can do while you are sick) or you flare worse and then can do nothing.

    My body seems to have a set point with fatigue, pain, and exercise that I cannot move/build up beyond with graded physical therapy or water exercise. They do help, but there is that frustrating set point. (With #3 fatigue, true exercise is not possible–it’s like a severe flu.)

    My 12-year-old son also had sudden-onset disabling fatigue for 1 1/2 years despite being very active before that. He’s just now able to build up his capacity/endurance. He started sleeping 15-16 hours a day and expressed a lot of pain. It was very scary as a parent to see that, but he is beginning to recover.

    I don’t know how my experience compares to that of other rheumatology patients; I have complicating factors and other conditions. My experience with over-pushing myself is that I destroyed my health–patients must definitely show moderation.

  5. Dr Irwin Lim says:

    Fatigue is really hard to deal with as a physician as well. It’s such a common complaint from all, not just rheumatoid patients.

    It’s hard to explain why.

    What I’ve become aware of as I become more attuned to listening to my patients, and as I read patient’s experiences on blogs, etc, is that it is a huge problem.

    I don’t have an easy answer but I thought I would share some initial thoughts. Thanks to RA Guy for posting these.

  6. Annette says:

    There’s a book I read 20 years ago called The Arthritis Exercise Book by Semyon Krewer. You can get it for $1 or so at abebooks.com second hand.

    He wrote the book back when you were often confined to bed if your RA was bad and he outlines a lot of exercises that take very small effort but they do make your muscles stronger. He used them to keep some muscle tone so that when he improved he could get up and move around better. So you can do these exercises in bed.

    Gradually he covers the whole body

    He’s pretty chatty and was a nuclear physicist I think. His physio collaborated.

    Annette

  7. ronnocs says:

    Really interested I what you’ve said. I did three things when first diagnosed:
    1 Gave up full contact martial art
    2 Lost around 40lbs
    3 Took up yoga
    Not taking anything for RA (though this is likely to change v soon), and managing my disease, rather than letting it manage me.
    Fatigue is harder to explain to fiends an family than the swelling and pain.

  8. Ruca says:

    Honestly the best thing for me is to not struggle so much against it. I take multiple minisleeps as often as I need them. Sometimes I feel its like a panic attack, the more you fight it the worse it will get.

    So if I can, I just give my body what it wants.

  9. Lisa says:

    This is a tough issue. The doctor says “exercise and you will feel better. The pain will even ease with exercise.” But it is not that simple. The pain eases in my knees and hips while I’m working out, but usually flares up worse everywhere else. And the fatigue… I had mono in the 10th grade. It’s a lot like that. I used to be a night owl and never took naps. Now it’s not uncommon to sleep 10 hours and take a nap. If I sit still totally unoccupied for more than a few minutes I doze. And I find that the more “normal” stuff I do in a given day, the worse I feel the next day. And it builds up. By the weekend I’m usually exhausted and miserable. And it’s not as if I’m running marathons each day.

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