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Who cares? (A brief guide for Carers)

Chief Characteristics
  • Widespread Pain
  • Non-Restorative Sleep
  • Morning Stiffness
  • Chronic Fatigue
It can be difficult to live with and care for a person suffering from a chronic painful condition like Fibromyalgia Syndrome - (FMS), but you need not cope alone. The Fibromyalgia Association UK not only cares about those diagnosed with the condition, but also cares about you, the people who live with and look after us.

This leaflet has been prepared to allay some of your fears and help you to gain a better understanding of some of the problems we face. FMS affects people in different degrees. Those with mild to moderate symptoms can lead a relatively normal life. If the symptoms are severe our lives are changed drastically, but FMS is not life threatening.

Now that your friend, partner or relation has been diagnosed with FMS you will be asking "What is it and what does it mean?" The word Fibromyalgia means pain in the muscles and fibres, fibro (fibres) my (muscles) -algia (pain). FMS is called a syndrome because it is recognised as a collection of symptoms rather than by one specific symptom or malfunction. The many ways it can affect the various systems of the body are explained more fully in our leaflet "What is Fibromyalgia?".

In view of the constantly changing levels and sites of pain you may have thought that the person troubled with FMS was going mad or simply being idle. Don't feel guilty if you have, for many of us have had the same thoughts about ourselves. How can we look so well and feel so bad? FMS is often referred to as "the invisible condition" or the "irritable everything syndrome" because there are no visible signs but inside we are hurting and our self esteem can be very low. We may feel that we are letting everyone down. Try to talk about these feelings and learn to recognise mood swings and down days. Work together to reduce daily levels of stress; the whole family will benefit.

The two main symptoms of FMS are pain and fatigue but muscle stiffness is also a very troublesome symptom. This usually occurs after sleeping or lying in one position. Once we get moving the stiffness will normally ease in an hour or two, but in some people it can last all day. Stiffness and pain can also occur if we sit in one position for too long. Consider this when planning outings.

'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.

Family and friends can help a great deal in the management of FMS by learning as much as possible about the condition. Not only does the person diagnosed with FMS have frustrations, so do the people who are trying to understand the problems we face.

Discussing problems and working together can make such a difference to our lives and the lives of those who give us their love and care.

It can be difficult to keep cheerful when your life style changes and relationships can become strained. We all have stress at some time in our lives and it is often difficult to 'complain' when a member of the family is unwell. Have you got another family member or good friend you can talk to? It's good to talk.

It can also be difficult to remember that we are not just a collection of symptoms but whole people with dreams and ambitions like everybody else. We don't like having FMS but we have found that, by taking positive steps, people are learning to cope and manage the condition. Research is now taking place all over the world; the future is brighter and the only way is forward.

The goal is to live life in spite of FMS rather than having no life because of it. Take each day as it comes and make the most of it.

Latest research has identified a deficiency in Serotonin in the central nervous system and a resulting imbalance of Substance P. The effect is Disordered Sensory Processing.

With these advances comes the added hope that a cause may now be found and hence a cure or more effective treatment.

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