Emergency Room: Sickle Cell Pain

Tell Staff

• You have sickle cell disease
• Your pain is either:
  • Similar to past pain crises
  • Different than usual
• Anything else that is new or concerning

How you might say this: “I have sickle cell disease. I’m having severe pain that I can’t control at home.”

Tell Staff

• Your Pain
  • When it started
  • Where it is: “My pain is in my [back/chest/arms/legs]”
  • How bad:
    • Pain scale: “My pain is [number] out of 10”
    • Compared to other times: “This is much worse than usual” or “This is severe like my other acute pain events”
  • Any differences: “I have sharp chest pain that I haven’t felt before.”

Why You’re in the ER

• If you can’t control the pain at home
• If the pain feels different 
• If you have other symptoms like fever, trouble breathing, chest pain, etc.

What You Tried at Home

• Include medicine and anything else you tried
• For each tell them
  • Did it help?
  • What was your pain like after?
  • Did it help another symptom?

✷ If You Have Been to the ER for pain or Have a Doctor – Tell staff what worked for you in the past. Give them your doctor’s phone number.

You Should Get Treatment for Acute Sickle Cell Pain Within 1 Hour

After 30 minutes: “It’s been 30 minutes and my pain is getting worse. I’m worried about getting pain treatment soon.”

After 1 hour: 

• Ask to talk to the charge nurse (the nurse who manages that part of the hospital)
• Focus on your concerns and safety:
  • “I’m worried about waiting. My doctor told me fast pain treatment is important”
  • “Can you tell me why my pain hasn’t been treated yet?”
  • “What are the hospital protocols for acute sickle cell pain?”

What usually happens: You’ll have blood tests to check for complications. These are often normal during acute sickle cell pain events.

Other tests: You might get additional tests if you have symptoms that suggest other problems are happening, like:

• Chest X-ray if you have trouble breathing
• Urine tests to check your kidneys

What to Expect

They will ask about your pain, examine you, and talk about what next steps should be.

Be Ready to Tell Them

• Where your pain is and how it feels
• How this compares to your usual pain events
• What treatments have worked before
• Your doctor’s contact information

If You Feel Unheard or Need More Help with Pain 

• Ask questions to understand their reasoning – “I’m trying to understand your approach to my pain management” or “Can you explain your treatment plan?”
• Stay calm and factual – Focus on what hasn’t worked and what you need
• Ask for communication help – “I don’t feel like we’re understanding each other. Is there someone who can help with our communication?”
• Reference your established care – “Can you call my hematologist to discuss my usual pain plan?”

What Should Happen

• You’ll get pain medicine to make your pain manageable
• IV fluids if you are dehydrated
• Other tests or treatment if needed

If Treatment Isn’t Working

• After trying the first treatment: “The medicine isn’t bringing my pain to a manageable level. What has worked before is [specific medication/dose]”
• If pain continues: “My pain is still not manageable. Can we try a different approach or adjust the treatment?”
• If you need more help: Ask to speak with the charge nurse (the nurse managing that part of the hospital)
  • “I need someone to reassess my pain management”
  • “Can you call my hematologist to discuss my pain plan?”
  • “What other treatment options are available?”

Questions You May Want to Ask

• What were my test results and what do they mean?
• What medications should I take at home?
• What activities should I avoid? For how long?
• What symptoms should make me come back to the ER?
• Who should I follow up with?