Fatigue, energy levels, and sleep

Fatigue is a feeling of extreme physical and/or mental tiredness. It may feel like you’re running out of energy and never seem to have the time to complete activities. Most of us feel tired after a long day, but if you have a long-term medical condition such as arthritis you may experience a tiredness that’s more intense which doesn’t always improve after rest .
Some of the people we interviewed suffered from fatigue, low energy levels and sleeping difficulties. Not everyone had these problems, and sometimes the problems would come and go. In this section we talk about people who had these problems and what they did to try and overcome them.
Describing fatigue
People who talked about fatigue described it as a feeling of extreme tiredness or exhaustion. They sometimes said that fatigue was like having a flu-like virus which drained them of energy. Fatigue could make people’s limbs feel “weak”, “heavy” or “slow”. Fatigue could also be mental; people described having difficulties concentrating or getting motivated. They described themselves as being “grumpy”, “moody”, “low”, “crabby” and “upset”. Catherine got more headaches when she was fatigued. Kyrun would slur his words and people wondered if he had taken illegal drugs.
Causes of fatigue
People who experienced fatigue described a range of things which they felt had caused it. Sometimes people noticed that one thing in particular could bring on fatigue or make it worse (such as having a bad flare up). Usually people talked about a combination of factors contributing to fatigue. These included:
• Joint inflammation 
• Medications which caused drowsiness or light-headedness 
• Pain (especially if it went on for a long time) 
• Doing too much (physically or mentally) 
• Doing too little and becoming unfit; worry or anxiety 
• Lack of sleep 
• Not eating healthily (or not eating at all) 
Sometimes a different condition such as anaemia, diabetes, chronic fatigue syndrome or depression contributed feeling of exhaustion.
Pain and sleep
Some of the people we spoke to didn’t have a problem sleeping. Others said they needed a lot more sleep than the average person. For example, Cat said that she used to sleep for 15 hours a day before her hip replacement. People talked about going into “hibernation” during a flare up and sleeping lots day and night.
Sometimes people had difficulties sleeping because they were in lots of pain and struggled to get comfortable. People also struggled to sleep if they were worried or anxious about something. Staying asleep could be a problem for some because lying still made their joints “lock up” and ache. People who had joint injections sometimes said the area injected was sore afterwards and this could keep them awake. When Deni was younger she had splints on her legs to keep them straight and found them very uncomfortable in bed. Not getting enough sleep sometimes made the pain worse.
Having stiff joints first thing in the morning was a problem for some of the people we spoke to. They talked about waking up an hour before they needed to in order to loosen up their joints and get moving. People who had difficulties sleeping said they sometimes struggled to get out of bed. A few accidentally fell asleep on buses, at university or even during dinner.
Impact of fatigue on daily lives 
Fatigue can have a significant impact on day-to-day life. The people we talked to sometimes had difficulties concentrating in classes or exams or at work.  They sometime lacked the energy to exercise or eat healthily. People could be clumsy and dropped things or accidentally hurt themselves. Some found it difficult to get motivated and sometimes became down or depressed. Going out with friends could be difficult if others had lots of energy. Small things like catching a bus or standing for long periods could be a problem for some.
Sometimes people are determined to fight fatigue and make the most out of life. They work hard in school, college or university, choose to travel the world or apply for challenging jobs and volunteer. Some of the people we interviewed have done these things.
Coping strategies
People who suffered from fatigue, low energy levels and disturbed sleep discussed different ways they tried to cope.
People said that eating and drinking healthily and exercising regularly helped with fatigue. People at work or college took regular breaks and some said drinking coffee helped. Pacing yourself throughout the day and resting was important. People could learn about their energy levels and plan the day so they didn’t use up all their energy in one go. Being able to make your energy go further is also important, for example sitting down to do activities rather than standing, and rearranging your environment to reduce reaching, bending and walking. It’s a good idea to rest throughout the day if people wanted to attend a party or go out in the evening.
Having time out at home and napping was also important – though people said that they struggled to get to sleep at night if they slept too much in the day. Cat used to have a nap at school on the nurses sickbed if she was very tired. Some people had an early night in order to get as much sleep as possible. Resting and learning how to relax rather than napping could help avoid sleep disturbances if people are unable to get to sleep at night.
Before people went to bed they drank hot chocolate, had warm baths with Epsom salts, listened to soothing music, and lit scented candles. When some people went to bed they read books which took their mind off the pain and helped them relax. Others used memory foam mattresses, laid on their sides, put pillows between their knees for support and wrapped themselves up in duvets to keep warm. Lucy’s mum, Tina, used to rub cream on Lucy's sore joints before bed.

Last reviewed November 2018.
Last updated August 2015.

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