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Self-help and daily living for lupus

Although drugs are important in controlling lupus, there's a lot you can do to help manage your symptoms. The following lifestyle factors will help you reduce your risk of developing the more serious complications of lupus:

  • following a healthy diet
  • the right balance of exercise and rest
  • not smoking.

Managing a flare-up

Lupus is a condition that naturally improves and worsens at different times. Learning how to manage a flare-up of your symptoms lets you be more in control of your condition. The reasons for a flare-up can vary from person to person, but the following can play a part:

  • exposure to sunlight
  • too little rest
  • infections
  • stress.

Try to identify the things that lead to a flare-up and find ways of managing or avoiding them.

Fatigue

You may often experience fatigue and it can be a major problem. If your fatigue has a specific cause, such as anaemia or an underactive thyroid gland, this can be identified by a blood test and treated. If no specific cause can be identified, fatigue may be more difficult to deal with. Some medications, including hydroxychloroquine, can help. Learning to pace yourself – finding the right balance between rest and activity – will help.

Exercise improves fitness and stamina and can therefore help in overcoming fatigue, but you'll need to start very gently – ask to see a physiotherapist for advice about suitable exercises.

Smoking

Many of the problems caused by lupus can be made worse by smoking. For example:

  • Lupus and smoking can both cause blood vessels to narrow, causing circulatory problems and increasing the risk of strokes and heart attacks.
  • Lupus can make you more at risk of respiratory infections, while smoking leads to long-term lung damage, which can make these infections more frequent and severe.
  • If lupus affects the kidneys it can lead to high blood pressure. Smoking can also contribute to high blood pressure, increasing the risk of strokes and worsening kidney disease.

Giving up smoking is one of the most important things you can do to reduce the risk of the more serious complications. It can be extremely difficult to stop, but treatments are available that can help you. Talk to your GP or call a smoking helpline for advice.

Exercise

When lupus is active, you may not feel like doing very much and it’s important to rest when you need to. Too much rest, however, will cause the muscles to weaken and may make you feel more tired. You need to find the right balance between rest and exercise.

Walking and swimming are good exercises because they can improve fatigue, fitness and stamina without putting too much strain on the joints. Even when you're having a flare-up, a small amount of exercise is helpful. You should have some gentle exercises that you can do even on a bad day.

Read more about exercise and arthritis.

Diet and nutrition

There's only limited evidence available on the effect of diet in controlling lupus, though there's some evidence that a diet low in saturated fat and high in omega-3 oils, which is found in oily fish, may be helpful. You can also try taking fish oil supplements, but make sure you use fish body oil, not fish liver oil, supplements.

Be careful of any exclusion diets where large food groups are removed from your diet – you need all the nutrients that a well-balanced diet will provide. Consult a dietitian if you need more specific advice.

Read more about diet and arthritis.

Sunlight

Too much ultraviolet light from sunlight can cause a red rash across the cheeks and the bridge of the nose, often known as the butterfly rash. It can also sometimes cause problems with internal organs to flare up. Bear this in mind when you choose a holiday destination and talk to your rheumatology nurse specialist or dermatologist if you're in doubt. When you're outside, try the following tips:

  • Keep out of the midday sun and wear a hat.
  • Cover your skin or use a sun-blocking cream, SPF 50 or greater. This is available on prescription for people with lupus. You can also buy high-factor sun creams that include a tint and can be used as foundation make-up.
  • Be careful when sitting under sun umbrellas on a paved area because the sunlight will be reflected onto your face.

Raynaud's phenomenon

If you experience symptoms of Raynaud's phenomenon in your hands or feet, dress suitably for cold weather. Smoking is bad for the circulation and is likely to make symptoms worse. Regular exercise will improve your circulation.

Managing stress

Even if it doesn't affect the course of your condition, emotional stress can make it seem worse. Learn how to manage any stress in your life – you might want to try relaxation techniques such as meditation or using mindfulness CDs. Make sure you take time for yourself and talk to family and friends if you're finding things difficult. Support groups are also available. Your doctor may be able to refer you to a psychologist who can help with coping strategies.

Therapies such as cognitive behavioural therapy (CBT) may help. This is a talking therapy that can help you manage problems by changing the way you think and behave. It's most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems.

Regular exercise can improve feelings of stress, anxiety and depression, though you will need to balance this with rest due to fatigue and any other symptoms which your condition throws up.

If you have lupus, you may want to seek extra support at work. You could talk to your human resources department to see if there are any improvements that could be made to your physical working environment as well as any alterations to your working arrangements, which will help you manage your condition better and allow you to work to the best of your ability.

The Equality Act 2010 means that employers have to remove barriers in the workplace for people with a disability and financial support is available to help them do this. The Equality Act states that someone is disabled if they have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on their abilities to do normal activities.

You may not think that the term disability is appropriate for you, but lupus can fall under this remit, and additional support may help you in your employment or education.

Meeting others with lupus

Lupus is a difficult condition to live with and throws up many challenges, especially during periods of life when you may need more energy. Meeting others with lupus doesn't necessarily remove these challenges but it can help you to cope with them by sharing your thoughts and concerns with someone who understands.

You may have access to an education programme through a lupus nurse specialist or you may wish to meet others through patient support groups such as LUPUS UK.

Contraception

If you have lupus you should use contraceptive pills that contain only progesterone or low-dose oestrogen, or consider physical/barrier methods of contraception, such as condoms. This is because oestrogen can make the disease more likely to flare up.

If you're taking steroid treatment, you should avoid using the contraceptive medroxyprogesterone acetate (trade name Depo-Provera), which is given by injection. It increases the risk of developing osteoporosis because it reduces the oestrogen in your body, which helps prevent bone loss.

The Mirena coil, which is progesterone only, is often recommended to women with lupus.

Talk to your doctor if you're worried about your method of contraception.

Hormone replacement therapy (HRT)

In the past there has been concern about HRT increasing the risk of flare-ups of lupus. However, recent research has suggested that it's relatively safe to use HRT for short periods if symptoms of the menopause are severe and your lupus is otherwise well controlled.

Complementary medicines

There's no scientific evidence that suggests any form of complementary medicine helps to ease the symptoms of lupus. But if joint pain is a particular problem, acupuncture may help. The pain relief may only last a short time to begin with but repeated treatments may bring longer-lasting benefits. You may need to visit a private practitioner as the treatment may not be available on the NHS.

Generally speaking, complementary and alternative therapies are relatively well tolerated if you want to try them, but you should always discuss their use with your doctor before starting treatment. There are some risks associated with specific therapies.

In many cases, the risks associated with complementary and alternative therapies are more to do with the therapist than the therapy. This is why it's important to go to a legally registered therapist, or one who has a set ethical code and is fully insured.

If you decide to try therapies or supplements, you should be critical of what they're doing for you, and base your decision to continue on whether you notice any improvement.

For more information, go to www.arthritisresearchuk.org.
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