Why Pain Happens in Sickle Cell Disease
Sickle-shaped red blood cells get stuck in blood vessels and block blood flow. Without enough blood and oxygen, your tissues hurt.

Types of Pain:
Acute – sudden, severe pain attacks (called a crisis)
Chronic – pain that lasts a long time

Goals of Pain Management

• Relieve pain quickly and safely
• Prevent complications
• Improve quality of life
• Empower self-management at home

• Goals of Pain Management
  • Relieve pain quickly and safely
  • Prevent complications
  • Improve quality of life
  • Empower self-management at home

  What You Can Do at Home To Manage Pain

  • Hydration: Drink plenty of water (8–10 cups daily) to reduce sickling.
  • Warm Compresses: Apply gentle heat to painful areas (avoid ice).
  • Rest and Gentle Movement: Rest during severe pain but do light stretching when possible.
  • Pain Medications: Take prescribed pain medications as directed (e.g., acetaminophen, non-steroidal anti-inflammatory drugs).
  • Do not wait until pain is unbearable, start early.
  • Avoid triggers of pain crises (stress, extreme cold or heat, over-exertion)
  • Stay warm and prevent infections.

  When to Seek Immediate Care

  • Pain not relieved by home measures
  • Fever higher than 38°C
  • Chest pain or difficulty breathing
  • Severe headache or weakness

  Signs of Infection:

  • Fever of 38.3°C (101°F) or higher taken orally
  • Fever of 37.8°C (100°F) or higher under the armpit
  • Chills or sweating
  • Sore throat

What to Do When You Arrive at the Hospital Emergency Department

To ensure health care proviers can assist you quickly and effectively, follow these steps:

1. Tell them you have Sickle Cell Disease, say clearly: “I have sickle cell disease and I am having a pain crisis.”

2. Describe your pain and use simple words: where it hurts, how bad (0–10 scale), when it started, and the type of pain (sharp, throbbing, stabbing).

3. Share the warning signs: fever (use thermometer to measure and tell them the number), chest pain, shortness of breath, or weakness—tell them right away.

4. Bring identification and health card: this will help staff access your records quickly.

5. Keep a small folder with your pain plan, medication list, and emergency contacts. Show to the first nurse you see.

Chronic Pain Strategies

• Regular follow-up with the sickle cell program at NorWest Community Health Centres
• Take medications as prescribed by your health care provider
• Physical therapy and exercise
• Mental health support (stress and anxiety worsen pain)
• Complementary approaches: relaxation, mindfulness, self-pacing

Medication Safety

• Follow instructions regarding medication
• Do not share medications
• Report side effects immediately

Communication Tips

• Keep a pain diary (location, severity, triggers, and relief methods)
• Share your pain plan with all care providers, your support system, and substitute decision maker.
• Advocate for timely care. Ontario standards require equitable and respectful treatment

Actionable Checklist for Clients

• Drink water daily
• Take medications as prescribed
• Use heat packs for pain
• Avoid cold and dehydration
• Seek help for severe pain or fever
• Keep your pain diary updated