Looking after yourself
Information on managing common symptoms
Many people with scleroderma also experience Raynaud's phenomenon. This is a condition where there is poor blood supply to the fingers and toes, and sometimes to the nose and ears, because blood vessels have become narrowed.
Initially, people usually notice that their fingers become white and numb in the cold. They then sometimes turn blue, then red as they warm up again. This can be quite a painful process.
Keeping a steady, warm temperature can help. Using specialist clothing such as silver lined socks and gloves can be effective. If you are a smoker, quitting is a good way to also manage Raynaud's. Medication may help as well, so speak to your GP if your Raynaud's symptoms are becoming unmanageable. There's more information on managing Raynaud's syndrome in the Raynaud's section of this website.
A digital ulcer or finger ulcer is a break in the skin. Digital and finger ulcers in people with scleroderma most commonly occur at the tip of the finger, sometimes extending underneath the fingernail, or over the finger joints. They can be extremely painful and can become infected, mainly due to the poor circulation and poor healing capacity. This makes daily activities very problematic.
Finger ulcers normally appear after prolonged or frequent Raynaud's spasms have damaged areas of tissue, or after a cut or knock to the finger.
They can also develop over areas of calcinosis (calcium deposits).
You should always seek medical advice if you develop a finger ulcer. You may be prescribed antibiotics if the ulcer is infected, and it may be necessary for you to have an intravenous infusion of a medication called Iloprost. This involves attending hospital for several days to receive the medication. Iloprost is very effective at improving finger circulation.
Surgical treatment is occasionally required but this is very rarely necessary.
Calcinosis is a collection of insoluble calcium salts within or beneath the skin, that feel like hard, chalky lumps. It often occurs in people with systemic sclerosis, especially with the limited type. Calcinosis tends to occur over pressure points, for example at the fingertips.
Usually calcinosis is obvious on examination, and so no special tests are required. However, if your doctor is not sure then an x-ray may be arranged – this will demonstrate calcinosis very clearly.
There are currently no medications known to help calcinosis, but some people do find that paraffin wax baths help. The warmth from the wax and its softening action can help expel deposits, but it needs to be done regularly.
Sometimes infections can develop around an area of calcinosis, requiring treatment with antibiotics. Occasionally surgery is required rather than removing it completely. It is worth noting that even after treatment, the calcinosis may come back.
Many patients with scleroderma experience patches of thickened skin, and these patches may be found on the feet, commonly on the dorsum (top) of the foot.
You may also notice that your skin generally becomes dry and itchy.
Sometimes calcinosis breaks through the surface of the skin and a soft chalky substance is released which often eases the discomfort. It is very important not to attempt to treat these yourself but to keep an eye on the calcinosis for signs of infection, which may need treating by your doctor with antibiotics.
Many people also experience skin tightening on the hands and fingers due to fibrosis, calcinosis, sclerodactyly or erythromelalgia.
For advice on treating and managing skin symptoms in scleroderma, visit our skin page.
Some people with scleroderma may find that they are more prone to developing infections, and that infections take a long time to get rid of, even with prompt use of antibiotics.
It is very important that you visit your GP promptly if you notice any sign of infection, like heat, swelling, pain or redness.
Many people with Raynaud's develop chilblains. The skin becomes itchy, then red, swollen and tender to touch.
A chilblain occurs from poor blood circulation on exposure to cold. They usually appear on extremities like fingers and toes, where they can cause problems with getting out and about. An infection can occur if the skin breaks down.
To prevent chilblains try to keep warm with heatpads, wearing several layers of thin clothes such as leggings. If symptoms develop, cover bare skin with loose, dry dressing and avoid clothing that rubs.
Creams and ointments containing camphor or local anaesthetic can also be used for relief of pain if the chilblain is unbroken. Balmosa cream, available on prescription or at the chemist, can be effective. Make sure you discuss the treatment with your doctor or podiatrist.
Problems with hands and fingers can be very disabling. To keep fingers healthy, finger exercises are recommended as well as moisturising with hand cream daily to keep the skin supple. It is often helpful to also see a physiotherapist and/or occupational therapist. Discuss this with your doctor or specialist nurse.
There are many things you can do to look after your feet. Here are a few pointers: