You may have some symptoms that really take over and make you feel awful. If these symptoms are with you most of the time they can really get in the way of getting better.
Pain can really take over your life. Whether it's muscle pain, head pain, stomach ache, or any sort of pain you get with M.E., the first thing to do is let your mum, dad, carer and doctor know about it. You need to be clear about how your particular pain affects you:
Where is it?
How often do you get it?
Is it sharp, burning, aching or cramping?
Does anything make it worse or better?
What have you tried so far to relieve the pain?
Write down in your own words how it is for you. You may find it helpful to rate your pain on a scale of 0-10 (0 = no pain, 10 = worst pain).
Your doctor can prescribe medication to help relieve the pain. If you have already been given a painkiller from the chemist, let the doctor know if it worked or not. If your doctor prescribes a painkiller, take it exactly as instructed. An easy mistake to make is to leave your pain to get really bad before taking anything. It will then take longer to get your pain back under control. It is quite common to get side effects when taking medication and people who have M.E. are thought to be even more likely to get them. Let your doctor know if you are getting any problems, as they can help find something that suits you.
If you are getting really bad headaches it may be migraine. When you have a migraine you usually get bad pain on one side of the head, you feel sick (nausea), find bright lights a bother and you may get strange changes in your vision such as flashing lights or zigzags.
Sometimes migraines can be treated with simple painkillers, but there are special anti-migraine treatments that may work better. Also, if you are getting migraines a lot, some regular medications can help to prevent them.
If you think you may have migraines, talk to your doctor. Reducing stress, improving your sleep quality and making sure you are drinking plenty of water everyday can also help. Some people also find that some foods can be a trigger for a migraine.
There are other ways of managing your pain and although it may not be possible to get rid of it, you may be able to find ways of making it less intense:
Massaging or rubbing the painful area
Resting in a quiet, darkened room
Distracting yourself with things that you enjoy - TV, music, chatting to someone, reading and hobbies
Putting a hot water bottle or heat pad on the area. Having a warm bath. Sometimes ice packs can help
Wearing comfy, loose clothes. Adjusting your mattress or bedding if this is a problem
Relaxation and visualisation
Complementary therapies
Above all don't keep it to yourself and bottle it up. Your doctor will only be able help your pain if you tell them how things are. Pain always feels a lot worse when you are tired, anxious, scared or worried, so make sure you share any of your worries with someone you trust. If you do get very low or upset, do let your GP know, as antidepressants can work well at reducing both the low mood and the pain. If you are having problems with sleeping see our sleep section.
Even though you may feel exhausted, it may be the case that you can't sleep when you want or need to. You may not be able to drop off to sleep at night or you may get off to sleep ok but then wake up in the early hours. You may find that you can't stop yourself from sleeping for most of the day and night. Or, you may be sleeping normally but waking up feeling just as tired as you did before you went to sleep.
Sleep problems are common in M.E. and need to be tackled by you and your doctor. Getting enough sleep on a regular basis is important for healing the body. Missing out on sleep can make you grumpy, fed up, irritable and depressed and may delay getting better.
The basics:
1. Routine
Go to bed at the same time every night and get up at the same time in the morning. Your body and brain like a routine and your brain will get used to switching off at a set time every evening.
2. Prepare
Start to prepare for sleep time one or two hours before your planned bed time. Have a warm bath and a hot milky drink. Avoid any food or drink containing chocolate, coffee or cola as the caffeine will keep you awake. Read a good book, listen to relaxing music or watch TV. Your body will get used to a routine which will help to establish a pattern.
3. Check out your environment
Make sure it's comfy - not too hot or too cold. If light stops you from sleeping, get someone to help you put up some black-out blinds or curtains or you could try an eye mask - the sort people use on long flights! Make your bedroom, or bed area, a place just for sleeping - try not to spend time in bed during the day unless you really have to.
4. Deal with your worries
Having M.E. is hard to deal with and it's normal to have worries and fears flying around your head. These usually become 10 times worse in the middle of the night or when you're trying to drop off to sleep!
Set aside some time every day to focus on your worries. You could write down each worry and then follow this with possible solutions or ways of dealing with them. Try and share you worries with someone you trust and who listens to you. If your worries are taking over your day and night, it may be time to ask for extra help. Having an illness is tough and it can really help to talk things through with others. Sometimes it's difficult to express this to people you are close to, so a professional counsellor can be really valuable. Check out our services or see links for other organisations that can help.
5. Day time sleeping and naps
Try not to sleep during the day time, especially if it seems to be interfering with night-time sleep. If you are really fighting to stay awake, short naps of up to 30 minutes can be a good way of recharging your batteries.
6. Talk to your doctor
If none of the above are working for you, you may need extra help in the way of medication. Sometimes very small doses of antidepressants can help people with M.E. who have problems with sleeping. If you have pain that is preventing you from getting off to sleep at night or waking you up early it is important to sort this out (see section above).
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Sometimes people who have an illness can get depressed. It can be because they miss things in their life that they used to enjoy - going out and having fun, seeing friends, going to school - the list is endless.
Sometimes it's the lack of control - not being able to plan the future, know when they will be better, know if they will ever get their old life back. It can be scary seeing all your friends get on with life while your life seems to be standing still.
Sometimes it can be pain, fatigue and poor sleep that can tip someone over into depression. It also works the other way round, so that if you are low or anxious, that can increase your pain and worsen your sleep pattern. Whatever it might be, and it is likely to be a combination of things, depression is more common than people think. Treating mood problems that occur is important to help you get better and to have less of a rough time on the way. It doesn't mean that your illness is due to mood problems like depression, just that if you do get low or distressed, it can make it all worse. See Feeling low for more ways of dealing with this.
Information produced July 2003
Updated June 2004
