Tuesday, 14 March 2017

Fatigue in MS - things you should know

J Behav Med. 2017 Mar 9. doi: 10.1007/s10865-017-9840-4. [Epub ahead of print]

Tracking daily fatigue fluctuations in multiple sclerosis: ecological momentary assessment provides unique insights.

Powell DJ, Liossi C, Schlotz W, Moss-Morris R.

Abstract


Studies investigating the prevalence, cause, and consequence of multiple sclerosis (MS) fatigue typically use single measures that implicitly assume symptom-stability over time, neglecting information about if, when, and why severity fluctuates. We aimed to examine the extent of moment-to-moment and day-to-day variability in fatigue in relapsing-remitting MS and healthy individuals, and identify daily life determinants of fluctuations. Over 4 weekdays, 76 participants (38 relapsing-remitting MS; 38 controls) recruited from multiple sites provided real-time self-reports six times daily (n = 1661 observations analyzed) measuring fatigue severity, stressors, mood, and physical exertion, and daily self-reports of sleep quality. Fatigue fluctuations were evident in both groups. Fatigue was highest in relapsing-remitting MS, typically peaking in late-afternoon. In controls, fatigue started lower and increased steadily until bedtime. Real-time stressors and negative mood were associated with increased fatigue, and positive mood with decreased fatigue in both groups. Increased fatigue was related to physical exertion in relapsing-remitting MS, and poorer sleep quality in controls. In relapsing-remitting MS, fatigue fluctuates substantially over time. Many daily life determinants of fluctuations are similar in relapsing-remitting MS and healthy individuals (stressors, mood) but physical exertion seems more relevant in relapsing-remitting MS and sleep quality most relevant in healthy individuals.

Figure 1: Average fatigue trajectories over time in the relapsing-remitting MS group (red solid line) and the control group (green dashed line).

Last week I posted on memory and intelligence in MS, and this week I'll be looking at fatigue. Fatigue is not a tangible symptom, sometimes it is difficult to pin point when it all started and you loose sight of (over time) of when it will end. However, the accepted definition of fatigue in MS is: "a subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities” (Multiple Sclerosis Council for Clinical Practice Guidelines, 1998).

To my knowledge this is the first study looking at the diurnal (during the day) variation in fatigue. Powell et al. report that on balance in relapsing-remitting MS compared to controls, there was a quicker increase in severity earlier on, peaking in late-afternoon; Figure 1 (although this was not the case in everyone). In those without MS, there was steady increase in fatigue throughout the day. Real-time fatigue increased with a negative mood, or decreased positive mood. Specifically, being discontent at work and lack of social recognition - that is increased exposure to stressors, worsened fatigue.  Interestingly, they also noted that physical activity in the last 30min lead to increased fatigue, reminiscent of post-exertional fatigue reported in chronic fatigue syndrome. Of note, the exertion question was a binary one (yes/no), and there is no detail on the intensity of the activity, so not sure what this means in real-life terms. You only have to speak to a runner (MS and non-MS alike), who chase their next endorphin hit that this is a complicated one to answer. Something more easier to understand is that in those without MS, lack of sleep is a big culprit.

The findings of this work are not to be taken as gospel, but simply a point of reference. I grew up believing that rules existed to be defied; often eschewing the traditional approach for the less conventional approach (MD has alluded to this in the past over my rock climbing antics!). But I tell you, happiness can define more than a moment of your life, it also allows you to see those moments with greater clarity.

12 comments:

  1. Fatigue is extremely difficult to cope with and it is not easy, or should I say impossible, to measure. All day long I force myself to do things. Most of the time I'm please If I have been able to do one important task a day, just one! I make to do lists, a new one every day just to get things done. I am unproductive, although I work all day just to get that one thing done. It is very hard to explain how fatigue feels, how it feels to be so unproductive. The fatigue caused by MS needs much more attention. Thank you Neuro Doc for posting this study.

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  2. Dear NDG, may I propose a new treatment for fatigue ... my "MS brain on steroids" is wonderful. I got mega doses with SoluMedrol with Lemtrada last week and suddenly life is good again. I am my old creative happy self, energy is flowing, I am asking for more things to do at work. When the effect of this wears off I definitely want more!

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  3. NEDA (no evidence of disease activity) in action I think!

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  4. But you know, that alemtuzumab has not yet had a chance to work - so it is all steroids. And I did not have a relapse immediately before Lem. Anyway, nice to be properly awake and kicking again.

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    1. I'm a week ahead of you. Steroids is luffely. Sadly they're wearing off :-(

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    2. Too bad :-(. I am having the time of my life ( or at least best time in the past 10 years) on a Solu-Medrol "high" ( did you get 3 or 5 doses?). I know I will crash at some point, but I am enjoying life without the depressing inflammatory soup in my head, asking myself why neurologists don't use corticosteroids more often.

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    3. They're bad for your bones long-term.

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    4. CD20 just 3, I'm on round 2 (unusual to get 5 lots of steroids even on round 1 in the UK, I think). Although they're wearing off a bit, based on my round 1 experience, I've a few more weeks before I crash properly. BUT once the too-tired-to-leave-the sofa bit is over, if the Mab does its work I'll then have some months, maybe even years of feeling better. I'll still have crappy walking, but the 'soupy' feeling of constant inflammation will be gone. At least that is what round 1 did (for 10 months before the beast returned). Are you on round 1 or 2? Hope it does the business for you.

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    5. Hatty Beanbag tell me what I should expect and plan for the next few weeks - at the moment I am high as a kite and life is so good. So when is the crash landing? -like 5 weeks from the infusion week?
      This was my first one :-)

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  5. No only bones, they affect blood sugar and lipids and may cause weight gain and Cushing like moon face and weaker muscles and thinner skin and what not. But being some sad shadow of my former self is not good for me either :-(.
    All guidelines say "use lowest dose and for the shortest time in a given clinical situation". But we (rheuma tribe) use corticosteroids more than neuros. On average. It is a tribe thing...
    BTW, there are treatments for osteoporosis, too. ( cheapo alendronate actually seemed to reduced all cause mortality in observational studies, which is funny because you can ask why and how does it do it?)
    And then there are mabs for osteoporosis. Pharma does not sleep, where a buck can be made it will be made :-)

    Actually, you could have a little feature on osteoporosis here - MS raises the risk and even newly diagnosed MS patients have lower BMD than age-matched controls. (this may have something to do with vitamin D metabolism genetics in MSers? or less physical activity? or some other "unknown unknown")

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  6. I learned I have MS four days ago. Nobody from my neurologist's office called to tell me my brain MRI results. I learned when I logged into my account on the portal online. There was an option for test results, I clicked on MRI and read the MRI report. It was devastating. I called my neurologist's office asking for someone to explain some things two days straight. Both times I was told someone would call but they never did. The third time I called I was transferred to the office manager who scheduled an appointment for me to see the dr next week.. All three employees with whom I spoke insisted that someone called me Monday. They said it's noted on my chart. I keep repeating, nobody has called. I think the person who was supposed to call noted that she did on my chart to cover her ass. I'm taking a receiver from my landline to show them caller ID. I'll show them caller ID on my cell phone as well. I don't appreciate people implying I'm a liar.

    To confirm it's MS they want to spinal tap me. The thought of it scares me. Anyway.... talking with friends who have MS has been very enlightening. They described their symptoms and the fit me to a T. I wondered why my calves have felt tight and weak. I've felt fatigued on and off for well over a year and blamed depression. This beast has affected my eyesight. My ophthalmologist says my eyes are healthy and told me to see a neurologist and have a brain MRI. That was when I realized something in my brain had gone haywire. Before the scan, having googled my symptoms for days, I realized my symptoms are classic MS. One of my friends said she needs surgery on her knee but refuses to undergo surgery because it can trigger MS and symptoms become worse. That was a light bulb moment for me because my symptoms went into overdrive after I had a septoplasty to repair my deviated septum. I convinced myself I was still recovering from surgery. I was having some balance problems pre-surgery but they became more frequent. I saw my ENT. who ruled out an inner ear imbalance. My EX PCP summarily dismissed my symptoms. That's the background.

    I know I write WAY too much, perhaps because I was an attorney in a past life. I've been on SSDI for about four years because I have PTSD and bipolar disorder, the latter is "depressive type". Today may be the worst fatigue I've experienced so far. I'm 62, never had kids and my 89 year old mother can't help. We took her car keys away after she went missing for several hours. She'd had a stroke. So, I'm on my own for the most part. My dog and cat are lifesavers. Some of my friends offered to help but it's difficult for me to ask for help. I've been independent my entire adult life. This is hard, very hard, but I know I'm preaching to the choir. Apologies for writing a dissertation.

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    1. I am sorry to hear that you have had a poor response from your health care professionals. I found this post in spam, explaining our delay in responding. We can't comment on individual cases.

      However to address one point and that is the risk of MS after surgery. I found this work

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651719/

      They say "we found a small but statistically significant and clinically important increased risk for developing multiple sclerosis, in those with tonsillectomy and appendectomy at ≤ 20 years of age. There was no convincing evidence to support the association of other surgeries and the risk for multiple sclerosis."

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