Living with sickle cell disease (SCD) can mean pain even on days when you aren’t having a pain crisis. You may wake up tired after a poor night’s sleep, miss work because of the pain, or have to put off activities you would normally do.

Even on days when the pain is manageable, you may find yourself planning around it, wondering how much you can do today or whether doing too much will make tomorrow harder.

When pain starts getting in the way of your daily life, it can be frustrating to feel like you still have to prove how much it hurts. If you’ve had your pain dismissed or not taken seriously before, you may also feel less comfortable speaking up — even when you need help.

Here’s a look at where chronic pain in SCD comes from, how you and your sickle cell care team can build a plan to manage it, and what may help with pain in your daily life. 

Tips for Building Your Pain Management Plan

When it comes to managing chronic pain in SCD, no one approach works for everyone. Your healthcare provider can help tailor your plan to your experience.

Track Your Symptoms

A daily symptom log can help you and your healthcare team understand your pain and identify patterns.

In your log, you may note certain details such as:

• Where the pain occurs and how it feels
• How intense the pain is on a scale of 1 to 10 and how long it lasts
• What you were doing when it started or got worse
• Anything that seems to trigger it, such as cold weather, poor sleep, or stress
• Which treatments help and how long the relief lasts
• How pain affects your mood, sleep, work, walking, or other daily activities

You don’t have to document every detail perfectly. Even a few notes about especially difficult or better days can give your care team useful information.

Set Goals That Fit Your Life

By setting small, achievable goals, you can measure progress by what you’re able to do, not just by how much pain you have.

Your goals might include:

• Sleeping soundly for six hours straight
• Walking for 15 minutes without needing a break
• Getting through a work or school day with fewer limitations

Some days, progress may mean recognizing your limits and giving your body more time to recover.

Communicate With Your Care Team

When you speak with your hematologist or other healthcare providers, describe clearly how pain affects your daily life, including your energy, sleep, and ability to complete tasks.

Sharing your daily symptom log helps them understand what helps, what doesn’t, and how pain affects your life so they can safely adjust your treatment.

You know what your usual pain feels like. If something feels different, more intense, or harder to manage, that information matters even if previous experiences have made you hesitant to speak up.

Have Strategies To Try at Home

Your pain management plan can include specific strategies you can try at home to help manage the pain. This might involve:

• Taking pain medication for flares exactly as prescribed
• Using safe heat therapy, such as a warm bath or heating pad
• Practicing deep breathing or relaxation techniques to manage flare-related stress
• Staying hydrated according to your healthcare provider’s advice

Plan for Pain Flares

Even with a good routine, you may still have times when your usual chronic pain suddenly gets worse, your typical pain management strategies aren’t helping, or a separate pain crisis occurs. Severe pain or other concerning symptoms may require urgent or emergency care.

You may need additional treatments to help manage the pain, such as stronger pain medication or other treatments based on what’s causing your symptoms. Your care team can assess your pain and come up with a plan to help.

Treatments for Sickle Cell Chronic Pain

Treatment for chronic pain in SCD focuses on reducing pain, helping you stay active and manage daily life, and addressing any underlying cause of the pain.

Medications for Chronic Pain

For adults with chronic pain related to SCD, your healthcare provider may consider different nonopioid medications depending on the cause of your pain and your needs.

These may include:

• Nonsteroidal anti-inflammatory drugs (NSAIDs) — Such as ibuprofen, especially for chronic pain related to avascular necrosis
• Medications that affect how the nervous system processes pain — Such as pregabalin, a gabapentinoid used to treat nerve pain
• Certain antidepressants — Including tricyclic antidepressants, such as amitriptyline, and serotonin and norepinephrine reuptake inhibitors (SNRIs), such as duloxetine

If other treatments aren’t providing enough relief, your healthcare provider may consider an opioid in some circumstances. Because opioids can have serious risks with long-term use, your treatment should be carefully assessed and monitored.

Behavioral and Mental Health Approaches

Research has found that certain mental health conditions, including depression and anxiety, can occur alongside chronic pain in people with SCD.

Because of this connection, addressing both can be an important part of the pain management plan. One approach that may help is cognitive behavioral therapy (CBT).

CBT can help you develop skills for managing chronic pain by changing your thought patterns and teaching you strategies for managing stress.

Mindfulness and meditation include practices such as deep breathing and guided imagery. These may help reduce stress and make chronic pain easier to cope with.

However, evidence for these approaches varies. They can be used alongside medications and other treatments for SCD, rather than as a replacement for medical treatment.

Physical and Integrative Therapies

Staying active can be part of managing chronic pain in sickle cell, but the right level of activity may depend on your symptoms, needs, and any complications you have.

A physical therapist can help you find exercises that match your abilities and any bone or joint complications.

Other complementary therapies that may help include:

• Massage therapy — May soothe aching muscles and promote physical relaxation
• Acupuncture — Uses thin needles placed at specific points and may help manage pain, although evidence in sickle cell chronic pain is still limited
• Aromatherapy — Uses essential oils, often through a diffuser, and may help promote relaxation and ease pain symptoms, although more research is needed

Consider asking your healthcare team before adding a new therapy, especially if you have a painful complication such as avascular necrosis or a leg ulcer.

Everyday Strategies for Comfort and Function

Chronic pain can make ordinary tasks require more energy than they used to. A few small adjustments may help make your day more manageable.

• Move gently — Regular, gentle physical activity may help you move more comfortably and reduce pain.
• Stay hydrated — Drink fluids regularly unless your healthcare provider has told you to restrict them. Dehydration can trigger a sickle cell crisis.
• Pace your activities — On days when you have more energy, it can be tempting to catch up on everything you couldn’t do before. Building in breaks may help you avoid pushing yourself beyond what feels manageable.
• Use warmth if it helps — A warm bath, shower, or heating pad may help relax tense muscles and ease pain.
• Make space for relaxation — Slow breathing, mindfulness, or meditation may help you manage pain and reduce stress.
• Lean on social support — Let trusted family or friends know what helps. They may be able to help with daily tasks when you need extra support.

When To Contact Your Healthcare Team

When pain is part of everyday life, it isn’t always easy to tell when something has changed enough to need medical attention. Knowing what is usual for you can help you recognize when a new symptom or change in pain deserves a closer look.

Talk to your healthcare team if your pain becomes more frequent or severe, lasts longer than usual, or becomes harder to manage with your usual treatment.

Seek emergency medical care if you have symptoms such as:

• Fever
• Chest pain
• Severe headache
• Trouble breathing
• Sudden weakness or numbness
• Sudden confusion, trouble speaking, or vision changes

If you’re worried about how you’ll be treated, consider bringing your symptom records, pain management plan, or a trusted support person to an appointment.

You can also ask your healthcare team to explain why they recommend a particular treatment, what you can expect from it, and what to do if your pain changes or gets worse.