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Who cares? (A brief guide for Carers)

'Flare ups' of pain are another problem that can make us feel low. We may be doing all the right things and suddenly the pain will increase. Often there will be no obvious reason, but at other times you will be able to identify the cause, usually overdoing some physical activity such as household chores, DIY or gardening. Short bouts of depression may occur from time to time, but this should not last more than a day or two; if it does seek advice from your Doctor. Sometimes counselling may be recommended. This is not because FMS is "all in the mind" but because the syndrome affects the whole person including the mental outlook. It is normal to feel afraid, angry and anxious when dealing with a chronic condition and talking to a trained counsellor allows these feelings to be brought into the open and dealt with.

No one medication will alleviate all the symptoms of FMS but a combination of medicines may help to relieve pain and promote sleep. At the moment there is no cure for FMS, and the best that a doctor can do is to give guidance in ways of coping and treating some of the symptoms.

Remember what suits one person may not suit another, so discuss the success or failure of medication with the doctor.

We may not be able to do all the things we used to do, but it is important to have fun and see the outside world. List ideas for short outings to places with room to move around; keep up with visits to and from friends; visit parks and gardens where a walk can be enjoyed and then rest on a bench. There are lots of places to go. Just getting out for half an hour can make all the difference.

It is important that you do not become isolated. You may not be as caring and understanding if you feel trapped and resentful make sure you keep up with your own social life.

FMS is a very individual illness. It affects people in many different ways and learning to cope is better for all the family. Discuss what action to take that will make life better for everybody.

Many people with FMS have very mild symptoms, they can lead a relatively normal life and can carry on in their employment, but they still need an understanding, caring partner. They will still have bad days.

You may have noticed that a person with FMS becomes easily confused and has short term memory blanks, perhaps forgetting a birthday or anniversary, getting words mixed up or missing them out altogether, sometimes stopping in the middle of a sentence completely forgetting what was being said. These symptoms are often more distressing than the pain and fatigue.
  • Writing can sometimes be difficult; the use of a computer or electric typewriter can assist;
  • Art and crafts can ease tension;
  • Crosswords and games can keep the mind working;
  • Keep a good supply of books and anything else that will entertain.
  • Encourage the learning of new skills. Change can be very rewarding
What are the tasks that people with FMS find the most difficult? Even carrying a shopping bag can cause us difficulties. Think about the jobs that you can do together with you supplying some of the muscle. Working together can be fun. If you can see that FMS is 'taking over', suggest a rest or a hot bath and have a cosy meal on a tray to continue the relaxation, it will unwind you as well. You can also help by making small changes around the home. Simple things like storing items on more accessible shelves will avoid excessive reaching and bending; keeping the floor area clear will avoid tripping or failing. Look around the home together, you will probably be able to identify several ways to make life easier and safer. Remember safety in the home is important for everyone.

As we have already said, rest plays a vital part in coping with FMS. Always plan day-to-day activities to include rest periods; do a little and rest a little. Gradual exercise also plays an important role in the management of FMS. Why not exercise together. Make it part of your daily routine. In order to cope we have to find out by trial and error what suits us best. Nobody else can do this for us but we do need your help and understanding.

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