Patient education: Sickle cell disease pain in adults – Discharge instructions (The Basics)

What are discharge instructions? — Discharge instructions are information about how to take care of yourself after getting medical care for a health problem.

Why does sickle cell disease cause pain? — In people with sickle cell disease, some of the red blood cells have an abnormal shape (figure 1). These "sickle cells" have sharp edges and can cause the blood vessels to get blocked. When this happens, the red blood cells don't bring enough oxygen to the body's organs. This is what causes pain.

Pain from sickle cell disease can be felt in the bones, chest, or other parts of the body. The pain can be mild to severe and can last hours to days. Some people also have other symptoms with their pain.

How do I care for myself at home? — Ask the doctor or nurse what you should do when you go home. Make sure that 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:

●Use the pain medicines you were prescribed. This might include strong pain medicines like opioids, as well as other medicines like acetaminophen (sample brand name: Tylenol). Make sure that you know the dose, when to take the medicines, and what side effects to watch for.

●Use warm compresses as needed. Do not put ice packs or cold compresses on the area of pain unless your doctor tells you to. Sometimes, cold can make pain worse by causing more sickle cells to form.

●Get enough rest, and drink plenty of fluids to stay hydrated.

●Try to find ways to manage stress. Having people who support you can help. If you have symptoms of anxiety or depression, talk to your doctor. There are treatments that can help.

●Take all of your regular medicines as instructed, including hydroxyurea and other medicines.

What side effects should I watch for? — Different pain medicines have different side effects.

●Opioid pain medicines can cause constipation and itching. Tell your doctor if you are having trouble with constipation or other side effects. Antihistamines can help with itching. Your doctor can review other side effects of opioids and what to watch for.

●"NSAIDs" are medicines like ibuprofen (sample brand names: Advil, Motrin). These usually are not the best choice for adults with sickle cell disease. They can cause kidney damage. Typically, you would not take an NSAID to manage your pain.

What follow-up care do I need? — Your doctor will want to see you again soon. They will review your treatment and make changes if needed. Make sure that you know when to schedule your next appointment and where to go.

If you are having chronic pain or more frequent episodes of severe pain (more than 2 or 3 times a year), talk to your doctor. They might recommend other treatments to reduce pain episodes.

When should I call the doctor? — Your doctor will tell you what to look for and when to call for help. In general, someone should call right away if you have any of the following problems. Do not wait to call, even if it's the middle of the night, because it's important to get treatment right away.

Get help if you:

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

●Have symptoms of a stroke, such as:

•Severe headache

•Seizure

•Not being able to wake up

•Trouble speaking

•Drooping of the face on 1 side

•Weakness in an arm or leg

●Have pain that doesn't get better after it is treated at home – You don't need to wait until pain gets severe before getting help.

●Have a fever or have other signs of infection – These might include feeling very tired, loss of appetite, stiff neck, headache, trouble breathing, or cough.

●Have other problems related to your sickle cell disease – Your doctor will tell you what to look for and when to call.

More on this topic

Patient education: Sickle cell disease (The Basics)