Chronic Fatigue Syndrome - living with it
chronic; fatigue; syndrome; myalgic; CFS; encephalitis; encephalopathy; encephalomyelitis; ME; tiredness; depression;
Contents
Treatment of Chronic Fatigue Syndrome (CFS)
- If you have long lasting tiredness, it could be CFS - but it is essential that you seek medical advice to diagnose and treat it correctly.
- It is important that all causes of fatigue are investigated.
- Most people with long lasting fatigue do not have CFS. In many parts of the world, most people live with chronic infections, insufficient food and anaemia, and these all cause chronic fatigue.
- There is no specific treatment for CFS.
- Many things have been tried to treat fatigue, such as medications which boost or suppress the immune system, and medications that alter control of blood pressure, and antidepressants.
- Some people may be helped by these treatments, but most are not.
Counselling and support groups
- Because CFS can have such a profound effect on a person's life, it is usually helpful to make contact with a counsellor who knows about the illness.
- A counsellor can provide information, ideas that may make a difference, plus support when you are trying to negotiate changes at home, school or work.
- There are support groups for young people (the Australian support groups can be accessed through the ME/CFS Society website below).
Chronic Fatigue Syndrome and depression
It is not unusual for people with CFS to feel depressed.
- This may be due to the illness directly.
- More often, people feel depressed due to:
- missing out on doing things and being with friends,
- frustration at not being able to do things which used to be so easy,
- and lack of support for an illness which others cannot 'see' and for which there is no test. Other people often have trouble believing that a person with CFS really cannot do things. They may think that the person with CFS could manage if only she just tried.
- Many people with CFS try antidepressant medication.
- Even if a person with CFS is not clearly depressed, some will feel better on antidepressants. This may be because they sleep better or because of other effects that are not yet understood.
What to do for yourself
Here are some ideas of what may help someone who has CFS.
- It is usually best to try to do something each day. Spending a lot of time in bed will, by itself, make you weaker.
- Pace yourself carefully and try to avoid unusual physical or emotional stress.
- A regular daily routine seems better than pushing hard to do something and then 'paying' for it by being even more tired for several days afterwards.
- Even on 'good days', it seems important not to do too much.
- Maintain contact with your friends.
- Sometimes the depressing feelings can make you want to be alone, but keeping in contact with your friends over this time is also important, so that you do not become withdrawn.
- Make sure you have a balanced and nourishing diet.
- Elimination diets (cutting out things such as milk products, meat, etc.) do not seem to help most people, and it can be hard to maintain good nutrition if you cut out too many things.
- If your family, friends, school or work colleagues do not understand, and are not giving you the support you need, you could ask your doctor to talk to them, or print an information sheet from the Internet (this topic, or an information sheet from the references below).
- Remember, you do not look sick, and it will be hard for them to believe just how bad it feels.
- CFS does not affect the immune system, and you should be no more likely to get colds, etc. than you were before.
- It is important not to blame everything on CFS.
- If you are getting sick, maybe there is another cause.
- Avoid smoking or being around smokers.
- Some therapies people have tried include acupuncture, homeopathy, naturopathy, chiropractic, tai chi, meditation, and massage. They have not been shown to be useful for all people with CFS, but some people have found them helpful.
Mel says:
“Having an illness like CFS can be tough because people just think you’re lazy. That’s their problem, and you don’t have to defend yourself all the time. Stay positive - you will get better sometime. Hang out with friends who support you and build some fun time into every day. Concentrate on what you were able to do each day and not what you aren’t able to do - YET!"
School and CFS
Many school systems now have guidelines about the support they can provide to young people who are unable to attend school full time for many different health reasons, including CFS.
- You may need fewer classes per day, distance education (working mainly at home) or extra time with assignments.
- Check with your year coordinator, school counsellor or the principal.
- Usually you will not be able to get these supports unless you have been seen by a doctor.
Resources
South Australia
MedlinePlus (National Library of Medicine, US). Chronic Fatigue Syndrome topics:
http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html
Centers for Disease Control and Prevention (US). Chronic Fatigue Syndrome:
http://www.cdc.gov/ncidod/diseases/cfs/
Myalgic Encephalomyelitis Syndrome Society Inc. information used with permission. http://www.sacfs.asn.au/
The information on this site should not be used as an alternative to professional care. If you have a particular problem, see a doctor, or ring the Youth Healthline on 1300 13 17 19 (local call cost from anywhere in South Australia).