What a sickle cell crisis feels like, and when to go to the ER

Warriors describe it in different ways: a deep ache that will not move, a pain that feels like being crushed, or something that starts small and builds for hours. A pain crisis, also called a vaso-occlusive crisis, happens when sickled red blood cells block blood flow and oxygen in small blood vessels.

No two crises are the same, and no two warriors experience them the same way. What follows is general information. Your own hematology team’s plan always comes first.

Common triggers

• Cold weather, wind and swimming in cold water
• Dehydration
• Infections and fever
• Stress and lack of sleep
• High altitude and air travel
• Overexertion

Winter in Canada brings its own risks. Our cold weather guide covers layering, hydration and getting ready for crisis days.

Go to the emergency room now if you notice

• A fever of 38.5°C (101.3°F) or higher
• Chest pain, coughing or trouble breathing
• Sudden weakness, numbness, confusion or trouble speaking
• A severe headache or a sudden change in vision
• Pain that your usual plan at home does not control
• A painful erection that lasts more than two hours
• A swollen belly, very pale skin or unusual tiredness in a child

Make a crisis plan before you need it

Write down your usual pain medicines, your hematologist’s name and number, your sickle cell type, your blood type and any transfusion history. Keep a copy on your phone and with someone you trust. Many warriors carry an individualized care plan or a short letter from their hematologist to show in the ER.

Pack a small bag in advance: a phone charger, warm socks, a blanket, a water bottle and something to pass the time. A Bright Box was designed for exactly these days.

Speaking up in the ER

Say early, and clearly, that you have sickle cell disease and that you are in a pain crisis. Ask for your care plan to be followed and for hematology to be consulted. If you feel unheard, ask for the patient advocate or patient relations office. You deserve timely pain relief and respect.

Our guide Is my doctor even listening? has scripts that warriors in Cells have found useful.

Questions people ask

This article is general information, not medical advice. Talk to your own hematology team about your care. In an emergency, call 911.