Lupus - Fatigue and Lifestyle in Lupus

Fatigue and Lifestyle in Lupus

put together by Stephanie Heaton, Lupus Specialist Research Nurse.
Edited for the web by Emma Henderson.

These are all questions that are commonly asked when a diagnosis of any illness is made. The answer to these and many more questions is , it's important to learn to cope with changes in a way that least effects your life and lifestyle . The aim of this page is to give potential suggestions and advice to help these changes to become minimal.

What physical activities will I be able to continue with

The thing to remember is that some activity can strengthen your stamina without causing stress to the joints and muscles. These activities include swimming to provide an all over fitness , walking and cycling. Activities to avoid include jogging as this may prove too strenuous.

It is always advisable to ask the advice of your physiotherapist and or Occupational Therapist when thinking of starting any exercise regime.

What can I do to help with Fatigue

Fatigue is one of the commonest symptoms of Lupus with almost 90% of people experiencing it.
These symptoms may vary from severe , fleeting or persistent. It can become a vicious circle if you are tired and you don't feel like exercising but if you don't exercise then often you become tired and lethargic.

The simplest suggestion is to include balance between exercise and rest. For example, a short session of exercise like swimming, and then a rest as the body allows. Your body tells you when it is time to rest. Increasing stamina allows you to gain more strength and muscle tone .Remember that rest is also needed to restore energy.

What changes will I have to make to my Lifestyle

Remember you are not alone in making changes there are people who can help you. Everyone is individual and will cope with their illness in different ways. Lupus itself can alter the way you will cope emotionally. This may also change from day to day. Talking to other people may be an important way to cope this may be with family and friends, your hospital Consultant, Nurse or other Health Care professionals. However, you may need to talk to someone who has experienced what you are going through first hand, this is a good reason to join one of the branches of Lupus UK, which can be a great support. These groups not only offer a chance to talk to other people with the illness but provide you with an up to date awareness of changes and developments in Lupus treatment and care.

Family members and friends also need help and support to enable them to understand the difficulties you are facing.

There is always someone who will spend time with you even if you don't want any answers and all you want is someone to listen to your fears and anxieties.

What about work

The most important thing is to listen to your own body it will let you know when you need to take a rest. There is no doubt that some changes to your lifestyle will have to be made, however, how you learn to cope with these changes will be an important part of the process of change.

Take time to think of the activities you did before you had Lupus, there may need to be changes made but these need not be negative ones. By learning to cope with your Lupus and taking control of it and not letting it control you will enable you to act with a positive attitude.

It may be that you can not manage to work the hours you used to work, but this may not be an option due to financial commitments. There are other ways to overcome this hurdle like spreading the hours you work over more days or being able to take a break in the day like many continental countries do.

Remember it is now more than ever crucial to look after your body it is no good pushing yourself to the limit, learn to pamper yourself a little. Learn to accept help when offered and don't push yourself to do anything that may be unnecessary ; some things can wait until tomorrow.

Remember the body also needs time to rest and rejuvenate to start again.

What Changes will my family have to make

Lupus may bring on the need for changes in your family life. Some of these may be permanent others may be more temporary. There may be some friction within families, this may be because you are no longer able to do all the chores you used to be able to do. You may have to ask for and accept more help. Your family will no doubt be worried about your health and go to the extreme of not letting you do any of the things you used to do. This will lead to you feeling under valued and make readjusting your lifestyle harder. Try to think of how this change is effecting your family , they also will need time to adjust. Make sure you find time for your family and try and share your fears and anxieties with them. Consider how you would feel if the change was effecting them. Allow time for the things you enjoyed together before you had Lupus and continue to enjoy them.

What about my Sex Life

There is no doubt that your behaviour will change with Lupus, and some patients' appearance may change slightly also. You may feel more sensitive to these changes and feel that your partner doesn't understand. You need to be able to communicate what you are feeling, what anxieties you or your partner have and if you can't solve these alone then perhaps it is time to seek professional help.

Lupus can certainly effect your sex life and the closeness of your relationship. There may be psychological and physical reasons for your sex life to become effected. physically you may be affected by muscle and joint pains and not feel able or want to move around. pain can restrict the activity of love making therefore it is important to try and find ways to relax muscles and reduce pain. Massage , warm baths , relaxation and aromatherapy may help. You may need to try different positions to put less strain on joints. Learn to talk to your partner about what is comfortable for both of you. Taking into consideration the time of day you make love , if you experience early morning stiffness and muscle pain you might want to restrict your love making to afternoons or evenings.

Fatigue, as previously mentioned, can effect 90% of Lupus sufferers. If you are tired you may not enjoy lovemaking so talk to your partner and let them know why you don't want to make love. Being close to someone in their arms can also be a loving experience. Other problems that may be encountered are:


some painkillers can make you feel drowsy, find time when you have adequate pain relief without feeling drowsy.


the restriction of the blood circulation in Raynaud's may also cause you to feel pain and uncomfort during love making. Warm baths and a warm atmosphere can help.


with Sjogren's syndrome patients develop sore eyes and mouth, you can also develop a sore and even sometimes ulcerated vagina. Treatment may be required for ulcers and it is best, however embarrassing, to seek medical advice. Soreness and dryness may be overcome with longer foreplay to increase lubrication or by using lubricants such as KY jelly. If this soreness and dryness carries on for a long time then it may be necessary to seek medical advice. Remember you will not be the first person to ask your doctor these questions.

Social life and Friendships.

Many lupus patietns complain that they have difficulty explaining their condition to friends and contacts, either because they have never heard of lupus or because you can often look quite well. It is up to you how much or how little you think your friends need to know.

As for social life let your body lead you in this do as much as your body allows and continue to enjoy your life like many others with Lupus do.

Lupus and Finances.

If you find you are unable to work for long periods of time it may be that there are benefits you can claim. A social worker should be able to help you with any enquires you have. You will often have to give the name of someone who knows about you and your condition on these forms, this is often you Lupus Specialist , Nurse or Gp. Remember if you don't ask then you won't know if you are entitled to this help.

Hopefully this has helped with some of the questions you have to do with the changes to you lifestyle and how to cope with fatigue, but remember you never have to be on your own, there is always someone to listen to your fears and anxieties. Here are just a few, family and friends, your Lupus Specialist or Nurse and Lupus UK and Local Lupus Groups to name just a few of the important people who will help you come to terms with your condition.

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