If you’re living with sickle cell disease (SCD) and develop intense pain, you may be having a sickle cell pain crisis. Unlike chronic (ongoing) pain, which occurs on most days, a pain crisis can start suddenly and may require medical care.

If this feels familiar, you may already know how difficult it can be to decide whether to seek care, especially if your pain hasn’t always been taken seriously. It may help to understand what a pain crisis is, what can help you get through one, and when to get emergency care.

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What Does a Sickle Cell Pain Crisis Feel Like?

A sickle cell crisis can feel different from person to person. It’s often described as a severe, sharp, pulsing, or piercing sensation that lasts for hours or days.

The pain commonly shows up in the:

• Joints
• Bones of the legs and/or arms
• Back
• Abdomen
• Chest

A pain crisis can affect any body part. In young children, the hands and feet can be common sites of pain and swelling. Doctors call this hand-foot syndrome or dactylitis.

During a sickle cell crisis, the pain location can also shift, so you may feel it in different areas over time.

A milder pain crisis may still allow you to keep up with your usual activities. More intense pain can make everyday activities difficult or, at its peak, be totally debilitating.

Even when a pain crisis eventually eases, chronic pain can continue between crises. If you have pain that continues between crises, talk with your healthcare provider about treatment options.

Possible Triggers

A pain crisis doesn’t always have an obvious cause. When triggers are known, they can vary from person to person.

Certain factors may play a role, including:

• Infections, such as a cold or the flu
• Sudden shifts in weather, especially cold or windy conditions
• Pregnancy or menstruation
• Low oxygen levels, such as at a high altitude
• Dehydration
• High levels of physical or emotional stress

Even so, paying attention to what happens right before your own pain crisis can help you recognize patterns specific to you.

Try keeping a simple log that includes:

• The date and time each crisis starts and ends
• How severe the pain feels, on a scale of 1 to 10
• What you were doing and conditions (the weather, a stressful situation) right before it started
• How you were feeling physically and emotionally

If you notice a recurring pattern, bring your log to your healthcare provider. This process can help you identify triggers and decide whether your pain management plan needs to be adjusted. You can also ask for help avoiding or managing triggers.

When Should You Seek Emergency Care for a Pain Crisis?

If you’re having a pain crisis, certain symptoms may mean it’s time to get medical care right away. These include:

• Severe pain that isn’t improving with your usual treatment
• A fever reaching 101.5 degrees Fahrenheit (38.5 degrees Celsius) or above
• Chest pain, coughing, or difficult breathing
• A painful erection that doesn’t go away within four hours
• Sudden, severe dizziness or extreme weakness
• Nausea or vomiting that makes it difficult for you to stay hydrated

If you notice any of these signs, seek emergency medical care right away.

Although these symptoms can have different causes, they may sometimes point to a complication of SCD, such as:

• Acute chest syndrome (a serious complication that affects the lungs)
• Serious infections
• Splenic sequestration (a sudden buildup of blood in the spleen, more common in children)
• Severe anemia (low red blood cells)

These complications can require prompt treatment, so it’s important to get checked rather than manage these symptoms at home.

At the emergency department, the healthcare team can assess your pain, check for other complications, and give stronger pain medication or other treatment as needed.

If you’re able, bring your pain management plan and medication list. It can help the healthcare team know what you’ve already taken and what works well for you.

Whether you go home or stay in the hospital depends on how you respond. If your pain improves and there are no signs of a complication, you will usually be able to return home.

What Can Help During a Sickle Cell Pain Crisis?

If you’re having a sickle cell pain crisis, your immediate focus is on managing the pain. A few strategies may help.

Stay Hydrated

Drink plenty of fluids, such as water or clear broths. Staying hydrated may help keep blood flowing through the blood vessels during a sickle cell crisis.

However, staying hydrated alone may not be enough to manage a severe sickle cell crisis. If your pain isn’t easing despite staying hydrated and resting, talk with your healthcare provider.

And if you’re not sure how much to drink during a crisis, ask your healthcare provider what they recommend.

Take Pain Medication as Directed

Your healthcare provider may recommend ibuprofen, acetaminophen, or other over-the-counter medications to help manage mild pain from a sickle cell crisis. For moderate or severe pain, they may prescribe stronger pain medication.

If you don’t have a pain management plan, ask your healthcare provider about creating one. Always follow your care team’s instructions, and never take more than your prescribed dose unless instructed by your healthcare provider to do so, even if the pain feels severe.

Other Steps That May Help

A few other approaches may help you cope with pain during a sickle cell crisis, including:

• Resting in a comfortable position
• Keeping warm
• Gently massaging the painful area, if it feels tolerable
• Using relaxation techniques, such as meditation, deep breathing, or other calming activities
• Applying warmth to the affected area, such as with a heating pad
• Distracting yourself by talking with friends or family, watching movies, or listening to music

If your usual treatment isn’t easing your pain or your symptoms are getting worse, contact your healthcare provider or seek emergency care.

Could Frequent Pain Crises Mean Your Treatment Plan Needs To Change?

Frequent or recurring pain crises may be a reason to review your treatment plan with your healthcare provider. Some treatments can reduce how often pain crises happen.

However, there isn’t a specific number of crises that means your treatment needs to change. Your healthcare provider can consider:

• How often you’ve had pain crises recently and how severe they were
• Any patterns or triggers you’ve noticed in your symptom log
• How well your at-home pain medication is managing your symptoms
• How your pain crises affect your work, school, sleep, or other daily activities

Depending on your situation, your healthcare provider may adjust your pain management plan or recommend other treatments to help reduce how often crises happen.

If your pain crises are becoming more frequent, more severe, or harder to manage, make an appointment with your healthcare provider to review your treatment plan.

Can Treatment Lower How Often You Have Pain Crises?

Yes, some treatments for SCD can help reduce how often pain crises happen. These are sometimes called disease-modifying treatments because they target processes involved in SCD that contribute to pain crises.

Your healthcare provider may discuss hydroxyurea as one option. This medication can help you have fewer pain episodes, and it may also reduce the need for blood transfusions in some people.

Other treatment options, such as crizanlizumab (Adakveo) and L-glutamine (Endari), may also be available to help people have fewer pain crises, depending on your age, symptoms, medical history, and other factors.

Your healthcare provider can explain which options may be right for you, along with their possible benefits and risks.