Topic Overview

Pain is a long-lasting problem for people who have sickle cell disease. Bouts of severe pain can last for hours to days and are difficult to treat. Pain can be exhausting for caregivers as well as for the person in pain. A pain management plan can help a person cope with chronic pain and with pain caused by a sickle cell crisis.

Your doctor or a pain treatment specialist can help you make a pain management plan. This plan includes instructions on how to treat mild pain at home. And it tells you when you need to go to the hospital if your pain gets worse.

Your management plan:

• Clarifies your and your doctor’s preferences ahead of time.
• Explains your needs to other health professionals who care for you.
• Offers you some predictability and control during times of crisis.

How can you prevent and treat pain at home?

Treatment of pain at home is a way of life for most people with sickle cell disease. Sickle cell pain varies from person to person, from mild to severe, and from occasional to constant. Some people experience numerous sickle cell crises, or painful events, a few times a year. Others experience none.

In many cases, you can treat mild to severe sickle cell pain at home with a combination of pain medicines, plenty of fluids, and comfort measures such as heating pads or hot water bottles. Do not use heating pads with children.

Painful events can become severe and last for days to weeks. Such extreme pain requires aggressive pain medicine that must be monitored in the hospital. If pain is increasing and isn’t relieved by treatment at home, call your doctor and seek emergency medical care.

Preventing pain

Mild to moderate body pain and some sickle cell crises can be prevented by:

• Drinking plenty of water and other fluids, especially before, during, and after exercise or strenuous activity and when you have a fever or infection. Drink enough so that your urine is light yellow or clear like water.
• Getting plenty of bed rest.
• Keeping warm. Cold temperatures make pain worse.
• Exercise with care. If you exercise strenuously, rest when you feel tired and drink plenty of fluids to prevent dehydration.
• Try to reduce and manage stress in your life.

Treating pain

Pain can be treated at home with:

• Pain management skills. These skills can help you and/or your child focus away from the pain. They can also enhance the effect of pain medicine. A pain specialist can teach you pain management skills. These skills include:
  • Guided imagery.
  • Relaxation.
  • Distraction.
  • Deep breathing.
  • Positive, encouraging self-talk.
• Medicine. Use the pain management plan you developed with your doctor to help decide what type of pain medicine to use. You are probably the best judge of when it’s necessary to use a stronger prescription medicine.
  • For mild pain, use over-the-counter ibuprofen (such as Advil) and/or acetaminophen (such as Tylenol). Children and teens younger than 20 should not be given aspirin, which can cause Reye syndrome. Be safe with medicines. Read and follow all instructions on the label.
  • For moderate or severe pain, you might take pain medicine prescribed by your doctor. Prescription pain medicine includes oral medicines such as codeine and ibuprofen, or codeine and acetaminophen. Some people might take oral controlled-release morphine at home.

For more information, see the topic Chronic Pain.

How is pain treated in the hospital?

If you go to the hospital, you will be treated with a strong pain medicine. This might be an opioid medicine, such as morphine.

• The medicine is given directly into a vein (intravenously, or IV) and may be patient-controlled, allowing you to push a button and release a dose when needed.
• When you feel less pain, IV opioid medicine is gradually reduced and replaced with a less powerful oral medicine. These actions prevent a person’s body from going through sudden drug withdrawal symptoms.