Action for M.E.

What does it feel like?

People often say M.E. is feeling like you've got really bad flu that just won't go away. Or like trying to run a long race on top of having the flu.

You can have all kinds of symptoms when you have M.E. Symptoms are things that you feel or notice about your body when you have an illness.

Common symptoms

Feeling really tired and worn out after doing things that didn't used to make you feel like this. It might happen straight away, or it may take a day or two to show. Doing things like school work or watching TV can make you feel really tired as well as things like playing sport
Pain and aching in your muscles and joints
Headaches
Sore throat and swollen glands
Problems with your tummy - feeling sick, not feeling hungry, pain
Sleep problems - not being able to sleep at night, needing lots and lots of sleep, waking up still feeling really tired
Problems with how you think and concentrate - forgetting things, not being able to concentrate, fuzzy thinking, difficulty saying what you are thinking
Hating bright lights and noise. Even sunshine can be a pain!

It's important to tell your doctor, your mum or dad, or the grown-up who looks after you, if you have any new symptoms.

M.E. can make you feel exhausted and too tired to think straight, so you may end up missing out on school and seeing friends. What makes it even more frustrating is that you may feel much better on some days than others. Symptoms can come and go and it's normal for them to change from hour to hour and day to day. So just when you think it's getting better you may feel you've gone back to square one just a day later. It's important to stay positive as you will start feeling better over time.

Different things might affect your symptoms such as the food you eat, pills you take and your mood. Not resting enough and trying to do more than your body can manage can make it worse - as can doing too little.

How do you cope with symptoms?
Tips from other young people

'I try and go at my own pace and ignore people who try and make me do more than I feel capable of doing'

'I don't push myself too much'

'I have learned to listen to my body'

'My doctor has given me tablets that help with the pain and sleep difficulties. They don't get rid of the symptoms but they have helped to lessen them which has been great'

'When I get a lot of pain I know it gets worse when I get upset and frustrated. So now I try and relax, take lots of deep breaths, and try and take my mind off the pain by listening to my favourite music or thinking about things I want to do when I get better'

'I always try and stay positive and think about positive things'

'I don't keep my problems to myself as this can make my symptoms worse. It really helps me to talk to other people with M.E. as they understand how I am feeling and often have good tips on how to cope with them'

For tips on how to deal with the symptoms better, take a look at the Treatments section

Read how other young people with M.E. describe their symptoms in Reality Bytes.

Information produced July 2003
Updated June 2004