Managing Pain & Fatigue

Building a foundation of healthy habits can help you live a full life and enjoy many activities with sickle cell.

Sickle cell is a complex condition that can be difficult to understand. Good medical care from doctors and nurses who are familiar with the condition can help prevent serious problems. It is a good idea to include a hematologist (a blood specialist) in your care plan. You can find a specialist here, and ask your current healthcare provider about routine checkups. Be sure to always talk to your healthcare professionals about your symptoms and care plan.

Common illnesses like the flu can be dangerous when you have sickle cell. Practice good hygiene daily with hand-washing and food safety.

Hydration and nutrition are very important for people living with sickle cell. Staying well-hydrated may help prevent dehydration (when one has too little water in the body) -- which can be important as dehydration may lead to a pain crisis. It’s especially important to drink plenty of water before, during and after exercise or physical activity. Eat a well-balanced diet with plenty of calcium-rich foods like low-fat milk, yogurt, cheese, leafy green vegetables and calcium-fortified foods like soy milk, orange juice and tofu. It can help to add nutrient-rich, high-calorie foods like dried fruit, nuts and smoothies to your diet as well.

To help with fatigue, it is important to practice a good sleep routine, which means building healthy habits that support sleep. Some of these habits include:

Try not to get too hot or too cold. Physical activity should be part of your life, but don’t overdo it. Listen to Dalilah and Mekhi talk about how they pay attention to their bodies.

Your family and friends can help you check your health and be there to listen to you. Even if you’re the only one in your family with sickle cell, like Dalilah, your family can still help. You may want to find a group or community organization that can provide information and support (you can see a list of groups here). Talking with people who know what you’re going through can make all the difference. It can provide a network of people to learn from.

New clinical studies about sickle cell are starting all the time. Ask your healthcare provider whether any studies might be right for you. 

The severity of pain caused by sickle cell can range from no pain to mild pain to severe pain. Likewise, the methods to relieve pain also can be different. Here are some good general rules to follow:

Discuss your symptoms and create a plan to help relieve your pain. This may include medicine and other relief methods, including heating pads or physical therapy.

Every time you’re in sudden pain, try to figure out what may have caused it. Although it may not be obvious at first, keeping a log over time can help you identify triggers.

You might find that you can get pain relief with options other than medicines. It is important to discuss all pain management approaches with your healthcare provider to figure out what is best for you.