Living with CIDP & autoimmune disorders
CIDP like all autoimmune diseases can follow a pattern of relapses and remissions with or without a gradual increase in symptoms. In a relapse new symptoms can occur or old symptoms may reappear or get worse. Relapses can last for several months and may be relatively slight or quite severe. A remission occurs when the symptoms experienced during the relapse disappear partially or completely weeks, months or even years.
CIDP can be progressive and symptoms can gradually increase over a period of many years and it may be difficult to identify `better' or `worse' times.
It is not possible to predict with certainty how CIDP is going to affect an individual in the future just like as in Multiple Sclerosis or any other autoimmune disease. The pattern of relapses and remissions varies greatly from person to person. A period of relapse can be very disturbing but many patients make a good recovery. Coping with uncertainty is the most difficult aspects of 'living with CIDP'. You should try and accept this variability without getting too worried about it.
You and your family and friends
A diagnosis such as CIDP of a chronic condition with an uncertain prognosis, may well throw a strain on family and other relationships. You have to learn to accept help when you need it. Ask for help from friends and family as well as support groups. You, family and friends should be able to speak openly and honestly with each other you will probably find that you are able to help each other through difficult times with the result that the bonds are strengthened.
Instinctively children are aware that something is wrong and that you are worried. It is important that their questions are answered as and when they occur. Older children can become surprisingly mature and a source of strength. Trying to keep your problems to yourself will not spare them any anxiety. Be open and communicate honestly.
Attitude to life
It is important to be as positive as possible about everything. Our emotional state plays a large part in our health and although the norms of life may have to change for a while, the majority of patients with CIDP can expect a good quality of life.
Modification of ones lifestyle may be necessary but it is better to emphasize strengths, undertaking what can be achieved rather than failing to achieve the impossible. It is a natural reaction to become frustrated but the acceptance and understanding of the problem is more than half the battle. Addressing the problems of CIDP can be seen as bringing a new challenge.
Being positive can take a lot of effort, determination and even courage and can be helped by a similar attitude in those that support and help you.
What you can do to help yourself
You should follow as healthy a lifestyle as possible. This will help to prevent other illnesses and infections which have been shown to trigger relapses.
A nutritionally balanced diet will ensure you are getting all the vitamins and minerals you require. There is no evidence of any special dietary requirements for CIDP sufferers. It is sensible to keep your weight down, since more weight is more difficult for weak legs to carry. (see our diet page for more info).
Regular exercise is important for overall health and should be taken according to individual limits and capabilities. Over exertion causes fatigue. However a little regular exercise will help to minimize muscle wastage and give you a good feeling of well-being. Any form of exercise that you enjoy and can comfortably follow will prove beneficial. Ask your physiotherapist to show you.
Adequate rest periods are essential to avoid fatigue. Stress and tension may irritate the symptoms of CIDP and therefore relaxation will allow you to unwind and `recharge'.
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