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Patient Booklet

 

For Those Who Care

It can be difficult to live with and care for a person suffering from a chronic painful condition like fibromyalgia – but you need not cope alone. Fibromyalgia Association UK not only cares about those diagnosed with fibromyalgia, but also cares about you, the people who live with and look after us.

This section has been written to allay some of your fears and help you gain a better understanding of some of the problems we face. Fibromyalgia affects people in different degrees. Those with mild to moderate symptoms can lead a relatively normal life, with a few adjustments.

If symptoms are severe our lives are changed drastically, but fibromyalgia is not life threatening.

Symptoms

Now that your friend, partner or relation has been diagnosed with fibromyalgia 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). The many ways it can affect the various systems of the body are explained in the section “What is fibromyalgia?”

We Look so Well

In view of the constantly changing levels and sites of pain you may have thought that the person troubled with

fibromyalgia 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?

Fibromyalgia is often referred to as the invisible condition or the irritable everything 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: everyone will benefit.

The two main symptoms of fibromyalgia 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 after 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. This needs to be considered when planning journeys.

We Have Our Bad Days

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 we 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 the doctor should be consulted. Sometimes counselling may be recommended. This is not because fibromyalgia “is all in the mind” but because the syndrome, especially the constant pain, 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 fibromyalgia but a combination of medicines may help to relieve pain and promote sleep. At the moment there is no cure for fibromyalgia, and the best that a doctor can do is to give guidance in ways of coping and treating some of the symptoms. The treatments and medications that work vary from one person to another and the person with fibromyalgia is the only one who can tell what is working. It may take a long time and many appointments to discover the right mix for any individual.

Making the Most of a Good Day

We may not be able to do all the things we used to do, but it is important to have fun and mingle with the outside

world. List ideas for short outings to places with room to move around; keep up with visits to and from friends and family; visit parks and gardens where a walk can be enjoyed and then a rest on a bench (or more comfortable seat). 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.

Team Work

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

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

You may have noticed that a person with fibromyalgia 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 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 fibromyalgia find most difficult? Even carrying a shopping bag can cause us difficulties. Think about the jobs that you can do together with you supplying the muscle. Working together can be fun. If you can see that fibromyalgia 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 or at work. Simple things like storing items on more accessible shelves will avoid excessive reaching and bending; keeping the floor area clear will avoid nearly tripping or falling which can jar the muscles. Look around the home or workplace together and you will probably be able to identify several ways of making life easier and safer. Remember safety at home and work is important for everyone.

As we have already said, rest plays a vital part in coping with fibromyalgia. 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 fibromyalgia. Why not exercise together. Make it part of your weekly routine. In order to cope we need to find out what suits us best by trial and error. Nobody else can do this for us but we do need your help and understanding.

The Future

Family and friends can help a great deal in the management of fibromyalgia by learning as much as possible about the

condition. Not only does the person diagnosed with fibromyalgia have frustrations, so do 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 that 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, friend or work colleague is unwell. Have you got another family member or 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 a whole person with ambitions and dreams just like everybody else. We don’t like having fibromyalgia but we have found that by taking positive steps, people are learning to cope and manage the condition. There is an area on our forums that is specifically for carers and family that you might benefit from participating in. 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 fibromyalgia rather than having no life because of it. Take each day as it comes and make the most of it together.

 

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