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Patient education: Sickle cell disease pain – ED discharge instructions (The Basics)

Patient education: Sickle cell disease pain – ED discharge instructions (The Basics)

What are discharge instructions? — 

Discharge instructions are information about how to take care of yourself after getting medical care in the emergency department ("ED").

What should I know? — 

You came to the ED for pain caused by sickle cell disease. This is called a "sickle cell pain episode" or "sickle cell crisis." But do not wait for pain to become a crisis before you get help.

Sickle cell pain can happen in the bones, chest, or other parts of the body. It can be mild or severe, and last hours to days. You might have other symptoms, too.

How do I care for myself at home? — 

Ask the doctor or nurse what you should do when you go home. Make sure you understand exactly what you need to do to care for yourself. Ask questions if there is anything you do not understand.

You should also do the following:

Call your regular doctor and tell them you were in the ED. Make a follow-up appointment if you were told to.

If you have to go to the ED for pain more than 2 or 3 times a year, talk with your regular doctor about ways to reduce pain episodes.

Take all your medicines as instructed.

To treat your pain:

You might need to take strong pain medicines called opioids. Follow all instructions for taking them. They might make you constipated. If so, you can take a stool softener.

You can take acetaminophen (sample brand name: Tylenol) to relieve pain. Check the package label carefully to make sure you take the right dose.

Ask your doctor if you can take NSAID medicines to relieve pain, like ibuprofen (sample brand names: Advil, Motrin) or naproxen (sample brand name: Aleve). These can cause kidney damage in people with sickle cell disease. But you might be able to take these safely for a short time.

Drink plenty of fluids each day to avoid getting dehydrated.

Do not put ice packs or cold compresses on the area that hurts, unless the doctor tells you to. Cold can make pain worse.

Try to get enough sleep each night.

Try to find ways to manage stress. Having people support you can help.

When should I get emergency help?

Call for emergency help right away (in the US and Canada, call 9-1-1) if you:

Have signs of stroke, like sudden:

-Numbness or weakness of the face, arm, or leg, especially on 1 side of the body

-Confusion, or trouble speaking or understanding

-Trouble seeing in 1 or both eyes

-Trouble walking, dizziness, or loss of balance or coordination

-Severe headache with no known cause

Have symptoms of "acute chest syndrome" – These include shortness of breath, new chest pain or cough, or a new fever.

Have very severe pain that starts quickly or continues to get worse

Are having so much trouble breathing you can only say 1 or 2 words at a time

Need to sit upright to be able to breathe, or cannot lie down

Return to the ED if you:

Have a fever of 100.4°F (38°C) or higher, or other signs of infection – These might include chills, feeling very tired, loss of appetite, stiff neck, headache, trouble breathing, or cough.

Feel very weak

Have trouble breathing when talking or sitting still

Have blood in your urine or bowel movements, or have black or tar-colored bowel movements

When should I call the doctor? — 

Call for advice if you:

Still have pain after taking pain medicines

Have other problems related to your sickle cell disease

Have new or worsening symptoms

More on this topic

Patient education: Sickle cell disease (The Basics)
Patient education: When your child has sickle cell disease (The Basics)

This topic retrieved from UpToDate on: May 11, 2025.
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