Although some of the symptoms of systemic sclerosis need specific medications, self-help measures like exercise and skin care are important aspects of your treatment.
One of the best things you can do to keep on top of systemic sclerosis is to follow a regular exercise programme. This will keep your skin flexible, reduce any tightening in your joints and keep your blood flowing freely.
Gentle exercises will help you to keep your joints moving. Although you may need to rest if your joints become swollen, it's generally helpful to keep moving as much as possible. You should do regular stretching exercises because they should help to reduce joint contractures. Your physiotherapist or a specialist hand therapist will be able to teach you the best exercises to keep your joints mobile and may also suggest using splints to help in managing hand contractures. You might be given special exercises to help keep your face mobile.
Read more about exercise and arthritis, looking after your joints, physiotherapy and arthritis and splints for arthritis of the wrists and hands.
Diet and nutrition
Eating a healthy diet may help skin ulcers to heal and ease Raynaud's symptoms. However, digestive problems can make it difficult to keep up a balanced diet and to keep to your normal weight. If you have heartburn or difficulty in swallowing, the following tips may help:
- Eat six small meals a day instead of three larger ones – this helps with digestion while making sure that your body gets the nutrients it needs.
- Eat slowly, chew thoroughly and drink plenty of water with meals.
- Taking your largest meal in the middle of the day can help you to avoid heartburn. If you do suffer with heartburn, see your doctor, who may prescribe a proton pump inhibitor (PPI) which will help reduce irritation of the gullet.
- Don't eat too much in the evening to make sure you have time for digestion before you go to bed.
- Raise the head of your bed a few inches to stop acid coming back up from your stomach into your gullet while you sleep.
If you find it difficult to fit in six small meals, maybe because you're at work during the day, you can eat a healthy snack instead. The key thing to be aware of is that you're getting all the nutrients you need and don't feel hungry.
Sometimes you may need nutritional supplements. They're usually taken by mouth, but occasionally they need to be given via a narrow tube directly into your stomach or bowel.
Read more about diet and arthritis.
Massaging the hands using warm paraffin wax can help to keep your skin flexible and reduce joint discomfort, although you shouldn't have a wax bath if you have any open finger ulcers.
Aside from this, there's no scientific evidence that any form of complementary medicine can help ease the symptoms of systemic sclerosis.
However, complementary and alternative medicines are relatively well tolerated if you do want to try them, though you should always discuss their use with your doctor before starting treatment. There are some risks associated with specific therapies though often they're more to do with the therapist than the therapy. 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.
Some people with Raynaud's find that taking vitamins can help to control symptoms. The use of high-dose vitamins E and C, fish oils and ginger or gingko dietary supplements can also help. If the vitamins don't help within three months you should stop taking them. Always consult your doctor before you try anything.
Supports, aids and gadgets
A number of gadgets are available that can help if you have trouble with daily activities like dressing or tasks that require good grip strength. If you're in doubt, ask an occupational therapist for advice on how to protect your joints from unnecessary strain.
If you struggle to open childproof medicine containers, ask your pharmacist to put your drugs in containers you can manage.
Some people find it difficult to handle coins when their fingers are sore or swollen. A coin purse that opens out to form a tray for the coins may help with this.
Read more about occupational therapy and arthritis.
Skin care and keeping warm
You need a good supply of blood flowing to your skin to stop it from cracking, peeling and developing ulcers.
- Keep warm from top to toe – this will help open the blood vessels to your arms, hands, legs and feet. Wear a hat to help preserve your body heat. Thermal clothes, hand warmers and electrically heated gloves and socks can also help.
- Remember that layers of clothing will trap heat and keep you warmer than thick clothes.
- If your skin is broken or painful, dressings can help to protect it.
- Don't use strong detergents or anything else that irritates your skin, and avoid soaps that contain lanolin. Try soaps, creams and bath oils designed to prevent dry skin until you find the ones that give you the best results in keeping your skin supple.
- If your hands are prone to dry skin, apply cream whenever they've been in water, either a water-based cream (for example E45 or aqueous cream), which is short-acting, or an oil-based cream (for example an emulsifying ointment), which is thicker and longer lasting.
- Smoking reduces the blood flow to your skin and is very likely to make Raynaud's symptoms worse, so it's best to stop.
Telangiectasia are the small broken red blood spots that you may see on your face, hands, and sometimes your chest and arms. You can use make-up to help cover them up if you want to, which shouldn't make your skin symptoms worse.
Changing Faces, a charity for people with conditions, marks or scars that affect their appearance, offers a skin camouflage service, giving advice on how to cover the marks with camouflage cream. Clinics are available throughout the UK and you can find information on the nearest one to you by visiting the Changing Faces website. The service is free (though donations are welcome) and is open to anyone. Some clinics ask for a letter of referral from your healthcare practitioner, while others will accept self-referrals.
Laser treatment can also help in some cases. It's available in the specialist dermatology units of some hospitals, and you may need several sessions to keep the telangiectasia under control.
Dealing with stress
There may be emotional difficulties connected with having a long-term condition, and the changes in the appearance of your skin can be upsetting. In addition, stress can reduce the blood flow to some parts of your body, so it can affect your condition, particularly if you have Raynaud's phenomenon.
Talk about any feelings of stress or depression with your family, friends or a healthcare professional. If you need help in handling stress or depression, your doctor may be able to help or can refer you for specialist counselling. You can also speak to a nurse in the rheumatology clinic – many clinics have nurses who either specialise in systemic sclerosis or have a special interest in it – or get in touch with a systemic sclerosis society, where you can talk with people who have the same condition.