Listening to your body

Systemic lupus erythematosus (lupus) is a complicated, unpredictable disease. Symptoms can vary from person to person — and over time, even within the same person. That's why it's so important for people with lupus to monitor their symptoms, even when they may seem minor, temporary, or unrelated to their other symptoms.

Only by listening carefully to your body can you truly understand how lupus might be affecting you. And unless you tell your rheumatologist precisely how you're feeling, he or she won't be able to judge whether a change is something that should be looked into more closely. Talking frankly with your rheumatologist is critical, because lupus and the inflammation it causes can affect the functioning of many of the body's organs and organ systems. Some of those complications can involve:

of people with lupus say they downplay symptoms to avoid upsetting their families.1*

  • Kidneys. Symptoms may include swelling of legs and/or feet; frothy and/or bloody urine.
  • Brain. Symptoms may include seizures; headache and/or dizziness; memory problems or confusion; sad thoughts; weakness/numbness on one side (for example, one arm weak or numb).
  • Lungs. Symptoms may include pain in the chest when deep breathing.
  • Heart. Symptoms may include chest pain; difficulty breathing; rapid and/or irregular heartbeat.
  • Eyes. Symptoms may include dry eyes; eye redness; some loss of vision.
  • Blood. Symptoms may include bleeding and/or bruising easily; infections.
  • Muscles and Bones. Symptoms may include muscle weakness; stiffness in joints; aching muscles.
  • Skin. Symptoms may include skin rashes; sensitivity to light; mouth or nose sores; hair loss.
  • General. Symptoms may include fatigue, fevers, weight change, poor appetite.

    Use the Lupus Checklist to record and communicate all of your symptoms, even if they seem small and insignificant.

* Data from the 2011 National Burden of Lupus survey funded and developed by Human Genome Sciences and GlaxoSmithKline. This survey included 957 people in the lupus community—502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists. Data on file, GlaxoSmithKline, 2011.

1. National Burden of Lupus Survey (46% describes very well/41% describes somewhat well), patient statistic "I minimize the pain or worries I experience because I don't want to upset my family."