What does sickle cell disease pain feel like?

Pain may be sudden or build over time, often affecting the bones, chest, back, arms, legs or joints. It can vary from one episode to another. Dehydration, infection, cold exposure, low oxygen or physical stress may contribute, although an episode can occur without an obvious trigger.

People with sickle cell disease may also experience fatigue or pale skin because red blood cells can break down faster than usual. Pain in someone with the condition should be assessed in the context of their personal care plan rather than judged by appearance alone.

Follow the pain plan agreed with your sickle cell team. Rest, keep warm, drink fluids if you can, and use prescribed medicines exactly as directed. Record where the pain started, how it changed and what you took. A clinician may assess oxygen levels, hydration, infection and the need for additional treatment.

Get urgent help if pain is severe, unusual for you, not improving with your prescribed plan, or accompanied by chest pain, breathing difficulty, fever, faintness, confusion or weakness. A painful erection lasting several hours also needs urgent assessment.

Ask which home measures are suitable, when to take prescribed pain relief, and which symptoms mean you should attend an emergency department. Ask how your team will check for infection or chest complications during a severe episode.