(From the London & South East Christmas Meeting)

This talk which was given at the above meeting is called "Surviving Christmas with Scleroderma". However it applies to any festive / celebratory occasion throughout the year.

Nearly 200 years ago Charles Dickens found it difficult to conceive of anybody not looking forward to Christmas. However, for people with scleroderma the problems which they face all year can sometimes become even more overwhelming at this season. There are lots of ways in which people can help themselves to overcome some of these difficulties and give themselves the best chance of enjoying every minute of their lives, whatever the season.

Keeping warm is very important for people with scleroderma, particularly in terms of preventing uncomfortable and debilitating Raynaud’s attacks and digital ulcers. Also some people complain of feeling "cold to the core". First and foremost check that you are sticking to all the recommended advice; stop smoking and reduce caffeine as these substances cause the small blood vessels to constrict, triggering Raynaud’s attacks. Wear lots of warm clothes, mittens are often better than gloves, and a hat is important to keep the overall temperature of your body higher. Handwarmers, heated gloves and insoles should be on your wish list if you have not already tried them. Try all the different supplements available (see box). These can usually be taken alongside most prescription medications, but always check with your doctor or pharmacist before starting a new tablet.

Reflexology, acupuncture and biofeedback have all been used with some reported success in Raynaud’s phenomenon and other circulatory disorders. As with all complementary therapies it is important to ensure that your practitioner is approved by the regulatory bodies. All these treatments will help to prevent and to heal digital ulcers as well as reducing Raynaud’s attacks. However one of the best ways to guard against digital ulcers is to ensure that your skin is in the best condition possible. Scleroderma can significantly dry the skin as well as causing tightening so physical protection is important. This includes the use of gloves for washing up, gardening or other occasions when damage may be caused to the hands, and also the use of a high SPF sunscreen to prevent damage to the skin by the sun. Ordinary soap and bubble bath can be very drying to the skin and should be swapped for cleansing products which are soap, perfume and alcohol-free as these can all be very irritant to the skin. Bath or shower water shouldn’t be too hot and after your bath or shower pat your skin dry rather than rubbing it. Moisturise at least three times a day using a "lotion" rather than a "cream". Lotions are oil-based and are more effective moisturisers. If your skin is very itchy then use one of the itch-relief preparations available and take an antihistamine tablet such as piriton or atarax at night. Application of 99% aloe vera gel or avocado oil may help to soften and moisturise the skin, and products which contain over 10% urea are usually effective moisturisers. Urea also has anti-inflammatory and anti-septic properties.

Skin tightening, digital ulcers and joint pains can often cause problems with everyday functioning. However there is a wide range of products available to make life easier. Pens, scissors and electrical plugs which you don’t need to be able to grip, long curved handled brushes and combs to help you reach the back of your head, long handled dustpan and brushes for those who have difficulty bending. Your local pharmacist should be able to give you the name of a shop near you that sells these types of products, or they can be ordered on the Internet.

Eating and drinking is often a problem for people with scleroderma but at special occasions people are prone to forget the rules and eat, drink and make merry and then regret it. Avoid dry foods, such as dry chicken or turkey, plain bread or crackers. Choose the softer moister foods (particularly fruit and vegetables), or add plenty of gravy, sauces, custard or cream. Don’t forget to only take small mouthfuls and chew well. Drink plenty of water with your meal to help you swallow, but not alcohol as it is likely to cause heartburn. To try and avoid or reduce heartburn only eat rich, spicy or fatty foods in moderation and eat smaller meals as a distended stomach can weaken the sphincter between the oesophagus and the stomach. Don’t lie down for at least two hours after meals and in bed at night try and raise the head of the bed six inches, using a foam wedge underneath the mattress. Lying on your left hand side will also help to direct stomach contents away from the oesophagus.

After any meal or snack you should clean your teeth. People with scleroderma often suffer with a very dry mouth, and that in combination with loss of hand function, and mouth tightening can mean that you are more prone to decay. Fluoride mouthwashes, twice a day, can help prevent cavities. Your toothbrush should be electrical with an easigrip handle. Using chewing gum can help to stimulate production of saliva and if you have dentures it is important to make sure that they fit properly.

Moving down to the other end of the gastrointestinal system, constipation or diarrhoea can often be a problem and for many people it is both. Constipation should be treated by non-tablet means if possible: increasing exercise, water intake, fruit and vegetables and roughage should all help. Laxatives should not be used regularly as over time they can cause the bowel to become dependent on them. If the problem is often diarrhoea then you should speak to your doctor because you may require antibiotics. Otherwise make sure that you are drinking enough water to prevent dehydration. Some people find that they have a problem with faecal leakage. If this is so then you should make sure to speak to your doctor as there are often things that can be done to help medically. In any case pelvic floor exercises can help you learn to have more control over your ano-rectal muscles, keeping things in for that vital few more minutes until you manage to get to a toilet.

Fear of embarrassment is one of the reasons that people with scleroderma can sometimes become worried about attending social gatherings. Parties should be a cheerful prospect but for some it strikes fear into their heart. Most people are happy with family groups, but attending their own, or a partner’s, work party can be a daunting prospect. To reduce tiredness do less during the day on the day of the party, and have a nap in the afternoon. Eat before a party so you don’t have to worry about choking when you get there, and if it’s not too depressing then stick to soft drinks so that you don’t spoil the evening with heartburn. Make sure you wear clothes that you know you look great in, and although an extra expense it may be worth getting your hair or make-up done professionally as this will boost your confidence. A mobile hairdresser can even come to your house to save you having to go out. Details of these can be found in local papers.

Another big problem for sufferers of scleroderma is fatigue. Ensure good nutrition, as without fuel your body won’t function at its full capacity. Plan ahead for occasions or functions when you know you will need energy and make sure you don’t overdo it beforehand. Don’t be afraid to ask for and accept help from family and friends, especially for special occasions. Host a family get together but ask everyone to bring a dish. The Internet is a very useful tool which enables you to do shopping without leaving the home. If you don’t have access to the Internet at home then you will have a friend or family member who does, all libraries have the Internet now and Internet cafes cost about £3 per hour. This can save a lot of energy battling around shops. If you are stuck at home or feeling isolated then the Internet can also be a good way of keeping in touch with the world. Many local authorities have free classes on how to get the best out of the Internet.

Hopefully with all of this advice you will be able to make some small adjustments to your lifestyle which will help you to enjoy life more.

Rachel Vincent

Centre for Rheumatology Royal Free Hospital