Almost 75% of people with MS experience fatigue daily, survey finds

Almost three quarters of people with multiple sclerosis (MS) experience fatigue on a daily basis, according to a new survey by MS-UK, with emotional stress and anxiety cited as the leading trigger for the symptom.

Other major triggers were having a busy day, which 83% of people said leads to fatigue, followed by a warm climate (75%), physical exertion (72%), and lack of sleep (70%). Almost half of those questioned (45%) said a warm bath or shower was a common trigger of their fatigue.

MS fatigue is one of the most common invisible symptoms of the condition. It is an overwhelming exhaustion, rather than the normal day-to-day tiredness someone may experience if they have been busy or not slept well.

There are many different factors that contribute to MS fatigue. Primary ones include brain and spinal cord damage from the condition. Researchers think passing messages from the brain to the body around nerve damage uses up extra energy.

Secondary fatigue comes as an effect of other MS symptoms such as disturbed sleep or chronic pain.

This was reflected in the survey results, with participants citing “Having long conversations with people without a break,” and “whole work days with sustained hours, as opposed to large rest breaks in between,” as being major triggers for fatigue, whereas other people cited missing sleep due to night-time spasms or restless leg syndrome.

One respondent whose MS fatigue impacts her daily is Rachel Batten, 52, from Cardiff. Diagnosed with MS last year after being misdiagnosed with a different condition for the past 12 years, Rachel struggles everyday to maintain her full-time job at a housing charity. “No matter how much sleep I get, I always wake up exhausted, feeling as though I haven’t slept in a fortnight,” she says. “On a bad day it feels like I am walking through treacle and cannot focus.”

Rachel now has to set her alarm to wake her two hours before she needs to get up. She tries to be proactive and took part in a fatigue management course. “I also try to make sure I am hydrated and eating healthily – I batch cook on a good day so when I do have a bad day I still have something healthy to heat up in the microwave.

“I also try and go swimming once a week – even if I feel tired beforehand – as often when I come out I feel more energised. However, if I have planned to go swimming one day and feel fatigued as the day goes on, I’ll swap my day, so I don’t force myself. I am lucky to have a gym that allows me to freeze or cancel my gym membership where I only need to give a week’s notice and pay £5 cancellation fee.”

If you or someone you know is living with MS fatigue, our booklet is bursting with information about this symptom. We’ve just launched our revised Fatigue Choices booklet – check out the latest information here.