Symptoms and energy

Common ME symptoms

Everyone's energy reserves – their batteries, if you like – are different. Having ME means that yours might vary from day to day, and even hour to hour.

The range of symptoms you experience might also vary - that's why ME is known as a fluctuating condition.

The following is a list of symptoms you might experience - they sound scary but please remember that you may not have all of them, and some may come and go.

• Young people with ME experience "post-exertional malaise" which is the delayed response to any exertion or activity – often by one or two days. This doesn't just have to be from physical activity, but can also be affected by mental and emotional tasks such as watching TV or feeling stressed.
• The fatigue that comes with ME is totally different from "normal" exhaustion. Fatigue levels can go up and down during the day, and you might suddenly need to sit or lie down very quickly wherever you are.
• Despite being so fatigued, you might find it difficult to sleep, or experience "sleep reversal" (where you sleep during the day, and are awake at night).
• Young people with ME frequently experience pain, including headaches, muscle and joint pain without redness or swelling, especially in the legs. You might also feel skin crawling and pins and needles. A recurring sore throat is quite common among young people with ME as are tummy pains, including nausea.
• You might find it hard to remember things, and get confused or mentally tired. It's hard to concentrate and plan ahead, and you get stuck on words or working things out. People with ME call this "brain fog."
• Your temperature might fluctuate without any obvious reason, and you might get dizzy easily, especially when getting up from sitting or lying down. You might find things are too bright or too loud for you or you become sensitive to touch.

If you are experiencing these symptoms, please remember that you and your family are not alone, and we are here to help with information and support.

Stop and recharge

The most important thing is to learn what your limitations are, so that you stop and recharge your batteries before you use up all your energy. This can be particularly challenging when you are first diagnosed.

The functional ability scale is an important tool to help you work out where you are with your ME. You can use it to help you describe and measure how much you can do.

If you are someone whose symptoms vary a lot, you may want to make a note of where you are on a good day, as well as where you are on a bad day. The scale will help you to see how you are doing, and to better understand yourself.

Remember, though, if you push yourself too hard, it can take many days to recover afterwards.

There are times when you will stay at the same level, and times when you may go up and down on the scale – sometimes slowly, and sometimes in a jump. But over time, with the right sort of careful support and management, you will hopefully be able to see what improvements you've made.

It's important not to be too disappointed if you see a drop, ME is a fluctuating condition that varies over time.

Using the Functional Ability Scale

Don't forget that the functional ability scale is a tool – not an exact guide.

One young person with ME told us:

"I tried to push myself and do a lot more than I was really capable of. It was a natural reaction for me, but now I realise that it wasn't wise. If you do that, you end up feeling worse than when you started. Then I learned to manage my activity and tried to avoid the urge to complete a task in one sitting. I alternated small mental tasks with small physical ones because I soon learned that it was as important to rest my brain as it was my body."

If you are at 50%, for example, this does not mean you can only walk half the distance of a healthy person. You may be in a different place physically to where you are mentally on the scale: many people fall between two categories.

Part-time means a few hours – only you will know how much is right for you. There is no predictable pattern to ME - ups and downs will happen, even over short periods of time.