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What are the symptoms of systemic sclerosis?

Systemic sclerosis can cause a range of symptoms affecting many different parts of your body:

  • increased sensitivity to the cold
  • changes in the skin
  • pain or stiffness in the joints or muscles
  • digestive problems.

Sensitivity to the cold (Raynaud's phenomenon)

Most people with systemic sclerosis develop an unusual sensitivity to the cold, known as Raynaud's phenomenon. Your fingers or toes turn white then blue in the cold. Just walking into a cold room or reaching into the fridge can make this happen. The colour returns to normal as your hands or feet warm up.

Raynaud's phenomenon is caused by your blood vessels narrowing (constriction), which reduces the blood supply to your fingers or toes. Stressful situations can also cause the blood supply in your hands to reduce and bring on a Raynaud's attack.

It's possible to have Raynaud's without having systemic sclerosis, but most people with systemic sclerosis will have symptoms of Raynaud's at some time during their illness, and it's often one of the first symptoms to appear. It can sometimes appear years before the onset of systemic sclerosis.

Changes in the skin

The most common changes include:

  • the skin on your hands, arms and face thickening and hardening – about 95% of people with systemic sclerosis will notice these changes
  • your hands and/or feet swelling, especially in the morning
  • shiny skin, without its usual creases
  • the skin on your face stiffening, making it difficult to open your mouth wide, and sometimes your lips becoming thinner
  • small red blood spots (called telangiectasia) on your face, hands and arms.

Less frequently, or later on in the condition, symptoms can include:

  • thinning of the pads at your finger tips and the soles of your feet
  • peeling, cracking or open sores (ulcers) in your skin and flesh over your fingertips, caused by poor blood supply
  • small, white chalky lumps under your skin (calcinosis), caused by calcium-containing deposits, often on your fingertips.

Digestive problems

Systemic sclerosis can affect the connective tissue of your internal organs, for example your digestive system, resulting in:

  • difficulty swallowing, caused by the weakening of the muscles in your gullet (oesophagus)
  • heartburn/reflux, caused by acid leaking upwards from your stomach into the lower part of your oesophagus.

Most people with systemic sclerosis have some problems with swallowing or heartburn. Less often, other parts of your bowel may be affected, leading to symptoms such as:

  • abdominal bloating
  • diarrhoea
  • constipation.

Pain or stiffness in the joints or muscles

Systemic sclerosis can cause the tissues around your joints to stiffen, which makes the joints contract. It can also cause inflammation, which may lead to:

  • pain
  • stiffness
  • swelling
  • tenderness.

Muscle weakness (myositis) is also sometimes a symptom of systemic sclerosis. About 1 person in 5 with systemic sclerosis will also have symptoms of a second rheumatic condition such as rheumatoid arthritislupus or Sjögren’s syndrome.

People who've had systemic sclerosis for a long time may find that their joints can tighten into a bent position because of the tightening of the skin and tissues surrounding the joints. These are called contractures and can occur in your fingers or elsewhere in your body.

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