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Beating fatigue

You may not be aware that fatigue is a well-known symptom of XLH. This article explains what fatigue is, what causes it and looks at how to ease it.

Feeling tired is one of the side effects of our busy, modern lifestyles. Research by market analysts Mintel reveals a quarter of us are worried about tiredness – but when it tips over into fatigue, this can have a real effect on your wellbeing.

What is fatigue?

“Fatigue is more than just feeling tired and drowsy,” says Pippa Crouch, occupational health specialist and founder of Global Occupational Health Solutions in Sussex, UK. “It can be described as feeling exhausted during, or after, usual activities like cooking or washing, or feeling like you just don't have enough energy to carry out your normal activities.”

Think of your energy levels like a reservoir; we all have a certain amount to keep us going. But if you keep pushing yourself, without topping up your reservoir, after a certain point it becomes depleted. Then you can be hit with a crashing wave of fatigue that sweeps you away, leaving you feeling helpless, frustrated and often guilty too. “However, learning some tools can help keep you afloat until the wave passes and even take on the next one,” says Crouch.

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Why do I get fatigue?

You may not realize it but fatigue is a well-known symptom in those with XLH and can significantly get in the way of life for many. 

A respected study published in the European Journal of Endocrinology found that fatigue – often caused by muscle pain and underlying conditions like osteomalacia – can alter the quality of life for 86% of XLH patients. This is because muscle pain and musculoskeletal issues have a knock-on effect, meaning you may not be able to sleep properly or find it difficult to exercise, which triggers fatigue.

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Fatigue can affect your emotions too

Fatigue has psychological effects too. Pippa says, “Because other people can't see it, there’s a perception that it doesn’t exist. But trying to explain fatigue to others is tiring in itself. You can also get stuck in negative thought patterns, such as; 'I should be doing more.' 'There’s nothing really wrong with me.' or 'I keep letting people down.' This can lead to anger at yourself and others, and feeling guilty that you should be able to cope.” 

You could also feel sad or lonely that you're missing out, while even simply coping with your condition all day, every day, can feel exhausting. But the good news is you can learn strategies to help you manage fatigue.

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Give pacing a go

Pacing means dividing up the jobs you have to do every day and giving each ‘unit’ an amount of energy that it will take. By spreading your units out over the day, you can help avoid fatigue. 

“It’s about understanding your own units and reservoirs of energy,” says Pippa. “So rather than working flat out all day and then needing two days in bed to recover, you may need to work for two hours a day for five days.” This is also known as ‘spoon theory.' We only have a certain amount of spoons of energy available each day and need to think carefully about how to spend them. You can recharge your spoons with rest, but also use them to describe how much energy you have to friends and family. For example you might say, “I've only got two spoons left so I need a nap”.

Pippa says, “Once you know how many units or spoons each task will take, you can gradually increase your energy levels as you learn how to manage your reservoirs.” 

You can keep an eye on how much you’re doing every day by wearing a pedometer, which counts your steps or an activity tracker which measures how much you move around, how many calories you burn and how much sleep you get, to help stop you wearing yourself out.

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Ask for support at work

You may be coping with fatigue at home, but your employer also has a legal duty to make sure your condition does not disadvantage you at work. “Have a discussion with your occupational health department to ask for reasonable adjustments to help you do your job,” says Pippa. These could be taking more breaks to rest during the day, a chair to sit on if you work on a production line, working from home, or flexible working hours.

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Take regular exercise

Although you may not feel like it, regular exercise can give you more energy! A recent study by the University of Barcelona discovered that a physical exercise program helped improve the strength, balance and quality of life for those with chronic fatigue syndrome. 

“Activities like walking, stretching, and general aerobic exercise can all help,” says Pippa. "Don't overdo it, but make sure you do it often enough. Sticking to a regular exercise pattern – little and often – is key to managing fatigue.” 

For tips and tricks on getting started, read our article.

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Stick to a healthy sleep routine

Maintaining good sleep hygiene can also help. Pippa says, “Try not to nap too often during the day, as you won't feel tired at night, but if you need to rest, stick to a power nap of around 30 minutes.” 

You should also ban TVs and computers from your bedroom, avoid using your smartphone before bed, keep your room cool and dark at night, avoid caffeine and alcohol, and have a relaxing bath about two hours before bed. 

If you're really struggling to get a good night’s sleep, try keeping a sleep diary for a few weeks. This can help your family doctor spot any patterns or triggers, and recommend helpful solutions to help you catch more zzzzs.

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Eat for energy

Regular meals can help manage your blood sugar levels during the day, avoiding energy slumps, while certain foods can boost your energy. 

Azmina Govindji, registered dietitian and spokesperson for the British Dietetic Association, says, “Vegetables, beans and pulses have a low glycemic index, which means they're more slowly digested – often called slow-release carbohydrates. Research suggests that low-GI carbs can help you feel fuller for longer, and keep your energy levels up over a longer period of time.” Pulses, if you're not sure, are edible seeds that grow in pods.

It is important to speak to your specialist doctor before making changes to your diet.

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Ask for expert advice

Don't be afraid to ask for a little extra help from your healthcare team. For example, your family doctor can refer you to a cognitive behavioural therapist who specializes in fatigue. There is evidence that cognitive behavioural therapy (CBT) is effective in treating chronic fatigue syndrome, so it may work for you too. 

“CBT helps change your mindset and behaviour to set up a cycle of positive thoughts, where you start to feel you can manage your fatigue,” says Pippa. 

Your healthcare team can answer any other questions about your fatigue or other symptoms too.

Although fatigue can feel overwhelming, making changes to your lifestyle will help. Pippa says, “Fatigue is a very real issue, but with the right treatment and management, you can improve it.”

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What to do if your fatigue changes

You should always see your family doctor or healthcare team if your fatigue changes. “If you notice it has got more severe, or you're following your normal routine and it becomes unusual, get it checked out,” says Pippa. “It could be linked to an underlying condition like depression. Having XLH doesn't exclude you from developing other health issues."

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