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When you have sickle cell disease (SCD), living with pain can be on ongoing challenge. Pain is common in people with SCD. It’s also the main reason for going to the emergency room or hospital.1 Pain can be agonizing and keep you from doing the things you want or need to do.
Living with pain can also be hard because it’s not something you can see. Your pain is often misunderstood by others. Knowing as much as you can about your pain and SCD can help you remember that the pain is not “just in your head,” but that it’s real.
Causes for pain.
With SCD, your red blood cells are sickle shaped. These sickle cells are hard and sticky and can get stuck in small blood vessels. This blocks oxygen and blood flow to the nearby part of the body. Without oxygen, cells get damaged or die. Pain is your body’s response to this lack of oxygen.
Pain can come on suddenly. This is called a “pain episode,” and can be a sharp, intense, stabbing or throbbing pain. It may last a few hours to days, or even weeks. You can have pain in any part of your body, but it often happens in the abdomen (stomach), chest, lower back, arms or legs.
Preventing a pain episode.
You don’t always know what starts a pain episode, which can be frustrating. Some things are known to trigger a pain episode, and that means you can help prevent them. Here are some triggers to avoid and tips on preventing them.
- Dehydration or lacking fluid in your body. Drink plenty of water every day. Drink even more when you feel sick, have a fever, exercise or are in a hot place.
- Infections. Stay away from people who are sick and wash your hands often. Be sure to get all your vaccines, too.
- Temperature change. Wear light clothing in the summer to avoid getting too hot. Layer in the winter or when you are in an air-conditioned place to avoid being too cold. Don’t swim in a cold pool or lake.
- Elevation. Avoid hiking in the mountains or flying in an unpressurized cabin (noncommercial flights above 10,000 feet). At high elevations, there is less oxygen in the air.
You can also take care of yourself to help prevent a pain episode. Get plenty of rest and avoid stress. Stay active without pushing yourself too much. Always take your medications as your doctor prescribed to feel your best.
Managing a pain episode.
You may still have a pain episode from time to time. You can often treat your pain at home. Work with your doctor or nurse to make a treatment plan. Here are some tips that may work for you:
- Drink a lot of liquids.
- Use a warm (not too hot) heating pad or take a bath.
- Try massage, meditation, acupuncture or other ways to relax.
- Take over-the-counter pain medication like ibuprofen, acetaminophen or aspirin. Always check with your doctor before taking any of these medications.
- Talk to your doctor if your pain isn’t controlled with over-the-counter medications. Your doctor may prescribe a stronger pain medication (hydroxyurea, glutamine, or crizanlizumab) to reduce the severity of pain or the frequency of pain episodes.
- Go to an emergency room if the pain gets worse and you can’t manage it at home. You may need to stay in the hospital until the pain is under control.
Your CVS Specialty® CareTeam is also here to help. You can contact them to learn what helps you and your pain.
This information is not a substitute for medical advice or treatment. Talk to your doctor or health care provider about your medical condition and prior to starting any new treatment. CVS Specialty assumes no liability whatsoever for the information provided or for any diagnosis or treatment made as a result, nor is it responsible for the reliability of the content.
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1Centers for Disease Control and Prevention. Complications and treatments of sickle cell disease. https://www.cdc.gov/ncbddd/sicklecell/treatments.html. Accessed April 13, 2021.