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Pain Crises and Sickle Cell Disease

 
 

Pain crises (acute vaso-occlusive crisis) are the most common complication of sickle cell disease. The pain from this crisis is different from:

  • Cancer pain
  • Pain after having surgery
  • Pain caused by trauma or injury

Pain related to sickle cell disease can happen at any time. Pain crises can keep your child from daily activities, like family time, meals, or school. 

You can help your child manage mild to moderate pain at home. Severe pain needs to be treated at the hospital. Your child may need to be admitted to the hospital for pain control.

If your child is having a pain crisis, it’s important to get it treated as soon as you can. Treatment can reduce or control pain. 

Sickled cells blocking blood flow

Types of pain in sickle cell disease

Acute pain 

Acute pain crisis is the most common type of pain. It is unpredictable, comes on suddenly, and can occur without reason. 

Pain severity varies, too. It could be mild, or it could be severe and debilitating. The pain can go from one part of the body to another part.

Acute pain can last for several hours to a few days. If your child has other health problems from sickle cell disease, the pain crisis can last for weeks. 

Chronic pain

Chronic pain is pain that is experienced on most days and lasts for 6 months or longer. It normally becomes more severe as people get older. More than 50% of adults with sickle cell disease experience chronic pain. 

What causes pain? 

The most common cause of pain in people with sickle cell disease is the sickling of red blood cells.  When your child’s body is exposed to certain conditions, red blood cells containing hemoglobin S can become banana-shaped, hard, and sticky. These conditions can include:

  • Too little fluid in the body
  • Infection
  • Low oxygen levels

As the hemoglobin releases oxygen, it causes the red blood cells to change from a normal round shape to an abnormal banana shape. This is also called a sickle shape. 

The sickle-shaped red blood cells will stick together. They will clog tiny blood vessels and slow the delivery of blood and oxygen to the tissues.  

Pain happens when the body’s tissues do not get enough oxygen. This is called an acute vaso-occlusion or pain crisis. 

Keep in mind that your child may have pain that has nothing to do with sickle cell disease. Like everyone else, your child can get headaches, sprains, and other aches and pains that have nothing to do with sickle cell disease.

Assessing pain in sickle cell disease

When assessing acute and chronic pain, your child’s care team will want to know:

  • Their current and history of pain
  • How long that the pain lasts
  • How the pain was treated before 
  • How well your child responds to pain medicines

Your child will be asked to rate the pain on a pain scale if they are able. You can learn more about how your child’s care team measures pain here. 

Treating pain at home

  • Take pain medicine as directed.
  • Mild pain can be treated with ibuprofen.
  • Acetaminophen with hydrocodone can treat moderate pain.
  • Drink plenty of fluids, rest, and apply a warm blanket or towel to the painful area.
  • Severe pain requires treatment by a doctor.

Pain treatments work differently for different people. 

These tips can help you ensure your child is taking their prescribed medicines safely: 

  • Do not take more medicine than prescribed.
  • Do not take pain medicine more often than prescribed.
  • Do not take pain medicine or any other medicine that was not prescribed.
  • Do not crush pills that should not be crushed, cut, or chewed. If you are not sure if the pill should be crushed, ask your child’s care team.
  • Do not add any other medicine, over-the-counter medicine, or herbal remedies without first talking to the care team.
  • Do not continue pain medicine at home for more than 24 hours without talking to your doctor.
  • Pain medication can also lead to constipation. Drink plenty of fluids, increase dietary fiber intake and if required take medications for constipation (laxative, enema) as prescribed by your care team 

If the pain cannot be controlled or is severe, call your child’s care team.

Common questions

Will my child become addicted to pain medicine?

You may worry about your child becoming addicted or hooked on pain medicine. 

Opioids can be highly addictive. Your child’s care team will take precautions to help prevent addiction, such as prescribing opioids for a brief period to decrease exposure. Your child’s care team will assess risk factors for addiction while developing a pain treatment plan. 

You and your family need to be aware of the possibility of addiction. Your child should only take opioid medicines when they are truly hurting.

If my child takes large doses of pain medicine now, will it stop working later when they really need it? 

No. The medicine will not stop working. But sometimes your child’s body might get used to the medicine. This is called “tolerance.” 

If this happens, talk with your child’s care team about your child’s pain treatment plan. 

Other pain relief

Here are some things you can try with your child when they are dealing with pain. These techniques are not a substitute for pain medicine. But they can help the pain medicines work better.

Technique How it works Examples

Relaxation

  • Relieves anxiety
  • Reduces muscle tightness
  • Good for episodes of brief and/or severe pain
  • Deep breathing 
  • Muscle relaxation
  • Meditation
  • Soothing music or nature sounds
Distraction
  • Focus attention on something other than pain
  • Counting, singing, praying
  • Watching television or movies 
  • Talking to family
  • Listening to someone read
  • Playing video games
Reframing/ Thought Stopping
  • Evaluate negative thoughts and images and replace them with more positive ones
  • "I've had similar pain, and it got better"
  • “I’m strong. I can do this!”
Imagery/ Hypnosis
  • Concentrate on the image of a positive experience or situation or a favorite memory
  • Ask your child to be specific in describing the details of the imagined experience (colors, sounds, smells, tastes, feelings)
Modeling
  • Learn from someone else's successes
  • Have your child observe another child managing their pain and anxiety by staying calm and talking through their coping techniques.
Heat
  • Increases blood flow
  • Warm baths or towels. 
  • Consult your doctor before using heating pads.

Questions?

Remember to contact the Hematology Clinic or the hematologist on call if the pain medicine is not helping to relieve your pain.

If you have other questions or concerns about pain, call the Hematology Clinic. If you are calling Monday–Friday 8 a.m.–4:30 p.m., dial 901-595-5041. If you are calling after hours or on the weekend, dial 901-595-3300 and ask to speak to the hematologist on call. Outside Memphis, dial toll-free 1-866-2STJUDE (1-866-278-5833) and press 0. 


 

This document is not intended to take the place of the care and attention of your personal physician or other professional medical services. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your physician.

St. Jude complies with health care-related federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.

ATTENTION: If you speak another language, assistance services, free of charge, are available to you. Call 1-866-278-5833 (TTY: 1-901-595-1040).

ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-866-278-5833 (TTY: 1-901-595-1040).

تنبيه: إذا كنت تتحدث باللغة العربية فيمكنك الاستعانة بخدمات المساعدة اللغوية المتوفرة لك مجانا. .يرجى الاتصال بالرقم. 5833-278-866-1  (الهاتف النصي: 1040-595-901-1).

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