Too Tired To Even Read This? Fatigue and MS

Most of us would take a duvet day given the choice. After all, when life is so hectic and sleep is such a luxury, tiredness affects us all. But feeling a bit drained and experiencing fatigue are two very different things – as anyone living with MS will tell you. Tiredness is typically the result of overexertion and is usually relieved by a few extra hours of sleep. Fatigue on the other hand is a daily lack of energy; an extreme weariness that no amount of sleep seems to ease. It can happen for short periods of time (a month or less – “acute” fatigue), but in some people it can last much longer (up to 6 months or even more – “chronic” fatigue). Unfortunately, this overwhelming feeling of exhaustion is one of the most common symptoms of MS, reported by at least 75% of people with the condition at some stage.

Fatigue in people with MS is complex and can have a combination of different causes brought on by different symptoms of MS. Muscle changes such as stiffness and weakness can make physical activity more challenging, for example, which contributes to fatigue; while bladder problems or pain experienced at night regularly disrupt sleep. Depression – which affects around half of people with MS is another common cause of fatigue. But at times it can just feel like you’re running on empty and even the simplest physical and mental tasks are a struggle, for no particular reason at all. Researchers are starting to identify a very specific type of fatigue that only people with MS experience. They’re calling it “lassitude”, and what makes it different is that it doesn’t seem to be related to any physical impairment or depression. This MS-related fatigue is usually experienced every day and can be much worse than ‘normal’ fatigue. It can get worse as the day goes on, and can be aggravated by heat and humidity. It can even occur early in the morning, despite a good night’s sleep.

Brain Changes and Fatigue

As with so much in MS, exactly why it causes fatigue is unknown. Some experts believe low energy levels are a result of the brain adapting to damage. The presence of lesions or scarring in the brain (another symptom of MS) appears to be a factor. MRI scans of people who have fatigue show they use larger areas of the brain to carry out activities than people without fatigue. In other words, where there’s damage the brain appears to be finding alternative pathways for nerve messages to get through, which takes more energy – similar to when you take a detour in your car to avoid a road blockage, but in the process you use more petrol. But lesions aren’t the only way MS affects the brain. Everybody’s brain shrinks as they get older, but in people with MS this process happens at a slightly faster rate. Experts now think there may be a link between this gradual change in the brain’s structure and lassitude. A study in people with MS found damage to the axons in the brain appeared to be associated with fatigue, because the brain’s compensation for the damage can make it feel like the effort required to perform a certain task is disproportionately high. Changes to the parietal lobe (the part of the brain responsible for processing sensory information such as touch, pressure, temperature and pain), in particular, seems to be linked with chronic fatigue. The brain is an incredibly complex organ and more research is needed before we can fully understand the processes at play in chronic fatigue. In the meantime, the impact of brain shrinkage is an area of growing interest for neurologists and it’s hoped that sometime in the not too distant future we’ll be able to prevent this form of damage altogether.

MS and Quality of Sleep

Another reason you might feel like your batteries are flat is lack of sleep. Unfortunately, many of the symptoms of MS (such as bladder and bowel issues, muscle spasms, and even depression) can keep you awake at night. Even if you are getting plenty of shut-eye, the quality of your sleep might be poor thanks to a condition known as sleep apnoea (pronounced APP-nee-uh). Brain changes brought on by MS can affect breathing during sleep which becomes uncoordinated, and the airways can also become obstructed. As a result, oxygen levels are lower than they should be during the night and sleep doesn’t refresh the body in the way it should. A recent survey showed that 1 in 5 people with MS have been formally diagnosed with sleep apnoea, while a previous study that evaluated the sleep patterns of people with MS found that more than half actually had the problem.

Treating Chronic Fatigue

If lack of energy is making life difficult, it’s important to speak to your doctor about the problem. He or she will be able to address sleep apnoea if this is an issue, as well as rule out other medical conditions such as an underactive thyroid or anaemia. If the fatigue appears to be a symptom of your MS, your doctor will discuss the options with you.

In the meantime there are plenty of things you can do to improve matters yourself:

Prioritise – scale back your to-do list to include only essential tasks, and factor in as much rest time as possible.

Take a siesta – if you’re not sleeping well at night then a short afternoon nap can help to boost energy levels and get you through the day.

Cool off – fatigue in MS seems to get worse as body temperature rises. Avoid overheating by wearing layers you can easily remove throughout the day.

Strike a balance – fatigue is one of the main reasons people with MS give up work prematurely. Speak to your employer about flexible hours that make the best use of your energy levels (it may be helpful to start and finish earlier, for example), and discuss how realistic your workload is. Working from home might also be an option to explore.

Stay active – yes, it might be the last thing you feel like doing when you’re tired, but regular exercise has been found to reduce fatigue in people with MS. Even just moderate activity such a gentle stroll or swim boosts blood flow and triggers the release of endorphins, brain chemicals associated with a feeling of wellbeing.

Lay off the junk – when you’re tired, it’s tempting to reach for stodgy, calorie-rich foods like biscuits and crisps. In fact, refined simple carbohydrates like these make matters worse as the sudden release of sugar into the bloodstream triggers the release of insulin which leads to an energy crash soon after. For a more even supply of energy, opt for complex carbohydrates as found in wholemeal bread and pasta, vegetables, pulses and whole grains. These complex carbohydrates give a slower, more sustained release of energy, which will help you avoid that afternoon slump.

Reach out – if you’re struggling to keep up with things, ask for help. Friends and family will be only too happy to do their bit while you recuperate. Talking to other people with the disease about how they manage their energy levels could also be helpful.

Above all, be kind to yourself. Fatigue may be an invisible symptom of MS, but that doesn’t make it any less real. Listen to your body – and if that means taking regular duvet days, then so be it.

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