Looking after yourself
There may not be a cure for scleroderma yet, but it can be treated and managed well, meaning that you can continue to live as normally as possible.
Here is some simple, straightforward advice on treating the most common symptoms of scleroderma.
Need more detailed information on treatments for specific organs or parts of the body? Please visit Scleroderma and your body.
Look after your skin
The skin becomes thickened in scleroderma, meaning it can become dry, cracked, swollen and less flexible. You can protect your skin from becoming too uncomfortable with creams, ointments and emollients:
- Creams are water-based so offer short-term protection, ointments are oil-based and give longer term protection.
- If your hands are severely dry, apply cream at night then cover them with cotton gloves.
- Use emollients in the bath, but take care not to slip.
- Treat itchy skin with Eurax or antihistamines.
- Avoid the midday sun, protect car windows on hot days, and use UVA and UVB-rated sun creams.
- Keep nails trimmed and filed and cover areas of calcinosis.
- Use aqueous cream instead of soap.
- Use gloves when you're washing up, or get someone else to do it!
Protecting Your Joints
Joint protection means protecting swollen and painful joints from stresses and strains that can make them hurt more. Lifting or carrying heavy objects for example can strain and hurt your joints.
Joint protection includes learning to perform daily activities in ways that will help your joints rather than strain them. Physical and occupational therapists can show you new ways to do activities such as opening doors and drawers getting out of chairs carrying packages ironing clothes and brushing teeth.
Joint protection may also include resting individual joints in removable lightweight splints to help control inflammation. Splints should be well padded to avoid pressure on any areas of the skin.
There are many devices that reduce stress on painful joints which you can purchase or make at home.
Keep Raynaud's attacks under control
The majority of people with scleroderma also have Raynaud's phenomenon, where the small blood vessels in the extremities are over-sensitive to changes in temperature.
There's lots of information on our Managing Raynaud's page, but here are some basic tips on keeping attacks at bay:
- Keep warm, wear gloves and use hand warmers.
- Maintain a stable temperature if you possibly can.
- Keep stress to a minimum.
- Speak to your doctor about medication – vasodilators can help.
Take action to prevent and treat ulcers
Dryness, calcinosis and digital pitting scars can lead to ulcers on the skin. It's important to try to prevent these, and to take action quickly if they appear, as they can become infected and take a long time to heal:
- Look after your skin and cover any broken areas with a clean plaster, Inadine or Mepilex.
- Keep warm with extra warm blankets.
- Keep an eye out for signs of infection in broken skin – yellow discharge, redness, swelling, pain and failure to heal.
- If you see any of these signs, contact your GP or local rheumatology team immediately.
- Keep a diary of where your ulcers appear – this will help your doctor to monitor and treat the problem.
Keep eyes and mouth from becoming dry
Many people with scleroderma have 'sicca' symptoms, meaning they have problems resulting from decreased tears and saliva production. These can cause pain and infections, but they can be treated.
For dry eyes:
- Avoid dry atmospheres.
- Humidify rooms.
- Wear glasses with side arms.
- Speak to your chemist about tear replacement drops, or your doctor about antibiotic eye drops if you have an infection.
For a dry mouth:
- Take sips of water rather than glugs.
- Avoid sugary drinks.
- Chew sugarless gum.
- Speak to your chemist or doctor about saliva replacement products and saliva stimulation tablets.
- Take a spoonful of sugarless Greek yogurt before bed.
- Speak to your doctor about the medications you are on, as some can worsen dry mouth symptoms.
Take care of your gut and bowels
Problems with eating, reflux, and a sluggish gut and bowel are common symptoms of scleroderma. Here are some symptoms to look out for, and ways to manage to them.
For pain when swallowing:
- Avoid foods that 'stick' like white bread, steak and chips, and speak to your doctor if it becomes unmanageable.
- Avoid eating for two to three hours before bedtime.
- Avoid drinking for an hour and a half before bedtime.
- If you are smoker, try to quit.
- If you are overweight, try to diet.
- Elevate the head of your bed and sleep propped up.
- Avoid fat, chocolate, caffeine and alcohol, and acidic foods like citrus fruits.
- Eat small meals often rather than three large meals a day.
For a sluggish bowel:
- Follow a well-balanced diet and avoid fatty, spicy, rich or dry foods
- Speak to your doctor about swelling, pain, diarrhoea or constipation.
- Try a probiotic drink or supplement.
- Keep up a good fluid intake.
Listen to your body
Because the symptoms of scleroderma are so diverse, it's important to look out for changes in your body and the way you feel. If anything is troubling you, it's worth taking the time to speak to your doctor about it.
Many people with scleroderma suffer from fatigue and feel overwhelmed by the condition at times, so it's important to take a rest when you need to, too.
- Look out for times and situations when you become more fatigued, and plan for them.
- Make sure you're getting enough sleep, and ask for help from your doctor if not.
- Notice any changes in your body and the way you feel, like breathlessness, palpitations or persistent coughs. Report anything unusual to your doctor.
- Try to maintain a positive outlook and to make time to do the things you enjoy. That's not always easy, we know. If you need to speak to somebody, our helpline number is 0800 311 2756.