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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.

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