Are you tired? Really tired? Me, too. Most of us with multiple sclerosis are.
How many really tired people is most? A small new study of 44 people with one of the progressive forms of MS found the answer is a little over 86%. (I’m surprised the number isn’t higher.) Those people described their fatigue as “tired,” “exhausted,” “wiped out” and having “little or no energy.”
Half of patients reported feeling tired all the time. More than 90% reported being fatigued at least once a day. For slightly more than 38%, fatigue was the MS symptom that bothered them the most.
The second and third most frequently mentioned symptoms were trouble walking and muscle weakness. I’d list the same two symptoms after fatigue, in the same order. I have no doubt they are the reason for some of the fatigue I feel every day, some days more and some days less.
Being really tired can lead to isolation
Fatigue definitely has put a crimp in social activities for the people in this study. Some described themselves as “homebodies,” too tired to socialize much. They also reported depression and anxiety, which they attributed to their fatigue.
The mean age of those surveyed is 52.5, they’ve been living with MS for about 15 years and nearly 80% are unemployed and/or are receiving disability. I suspect that younger and less disabled people with MS would report a much lower degree of fatigue impact.
For the most part, I think I do pretty well for a 71-year-old who’s lived with MS for about 40 years. I’m much less disabled than those in this survey, but even so, there are plenty of times when I’m too tired to go out and socialize or to invite friends over. I’m ready to hit the sack by 9 or 10 o’clock most nights, and some days I’ve been too tired to write this column. But I think exercise in the gym and swimming have helped me be less tired than I might be otherwise. Cutting back on my exercise due to COVID-19 restrictions has proven to me that I’m right about needing to stay in shape.
What can you do about MS fatigue?
Professor Gavin Giovannoni, who writes at the Barts-MS Blog, suggests that we need to understand the physiology of MS to help us create a plan to deal with our fatigue. Giovannoni notes that, “MS fatigue relates to (1) active inflammation and (2) the consequences of the damage that inflammation causes. If we acknowledge this then we are half-way towards treating and preventing MS-related fatigue, i.e. treating MS early (before too much damage occurs) and effectively (NEDA [no evidence of disease activity] and beyond).”
He believes this is why people treated with highly effective disease-modifying therapies (DMTs), such as Ocrevus (ocrelizumab) and Lemtrada (alemtuzumab), regularly report improvements in their fatigue and brain fog. That’s been the case with me.
But beating fatigue is much more complicated than just being treated with a DMT. According to Giovannoni, it “needs a systematic approach to be treated and managed correctly.”
“Be careful,” Giovannoni says, “or at least wary when your neurologist simply wants to reach for the prescription pad to get you out of the consultation room as quickly as possible.”
Diet, exercise, and importantly, the amount of sleep you get all play a role in handling fatigue. To some extent, all of these are in your control.
What’s been your experience with fatigue? If you’re not too tired to write right now, let me know.
(A version of this post first appeared as my column on the MS News Today website).
