If you’re living with hemophilia, joint pain doesn’t have to control your life. While pain can be frustrating and tiring, there are many ways to manage it so you can live with fewer interruptions.

Keep reading to learn why many people with hemophilia experience joint pain, how to prevent joint damage from bleeds, and ways to manage pain. Everyone’s pain experience is different, so be sure to talk to your healthcare provider about the best pain management options for your specific symptoms.

Linking Hemophilia and Joint Pain

Many people with hemophilia can experience joint pain. In fact, two-thirds of people with severe hemophilia experience pain in one or more joints every day. For many, joint pain can limit daily activities and impact quality of life. But why does it happen?

The main cause of joint pain in people with hemophilia is hemarthrosis (joint bleeding). About half of people with hemophilia will experience a joint bleed at some point in their lives. Among those with severe hemophilia, up to 70 percent to 80 percent of bleeds happen in the joints. These bleeds can be caused by trauma (such as a fall) or spontaneous bleeding episodes, with no apparent cause.

When blood enters a joint, it fills the space between bones and surrounding tissues, which can cause tissue damage and lead to further bleeding. As more bleeds happen, damage can build up, causing long-term pain and mobility issues.

Early Detection and Treatment Is Key

While there are many ways to help prevent joint bleeds, avoiding them altogether can be difficult. Recognizing a bleed early and treating it promptly can minimize damage and pain.

You may be experiencing a joint bleed if you notice:

• Swelling
• Loss of mobility
• Warmth
• Tingling sensations
• Discomfort
• Pain
• Stiffness

Depending on your type of hemophilia and your doctor’s advice, you’ll likely need clotting factor replacement within two hours of your first symptom. This is an infusion that replaces the blood-clotting proteins your body needs to stop bleeding. You might already take this treatment on a set schedule as part of your treatment plan.

How To Manage Joint Pain With Hemophilia

Joint pain can make everyday tasks harder, but there are ways to manage it and protect your joints. Here are some simple tips to help you protect your joint health, reduce pain, and live more comfortably.

Stay Active

Physical activity is a great tool in managing joint pain. Even though you might worry that being active could cause a bleeding episode, the benefits often outweigh the risks. Regular physical activity can strengthen your joints, make treatments more effective, help prevent new bleeds, and support overall health.

One of the best ways to protect your joints is by strengthening the muscles that control them. Try gentle, low-impact activities, like:

• Walking
• Swimming
• Golfing
• Pilates

Talk to your doctor before starting any new activity. They can help you build a safe exercise plan. If you have joint pain, a physical therapist can show you how to move safely and suggest supports like braces or joint sleeves if needed.

One member of MyHemophiliaTeam with a long history of knee pain shared, “If I know I’m going to be doing a lot of walking on any given day, I wear very strong, knee-stabilizing compression sleeves.”

Treat Quickly

If you notice signs of a joint bleed, treat it right away to reduce pain and prevent damage. Use the PRICE method:

• Protect — Protect the joint from further injury by using a brace or bandage.
• Rest — Rest the joint and avoid putting weight on it.
• Ice — Ice the area to help control swelling and inflammation.
• Compress — Compress the joint with a brace or bandage to minimize swelling.
• Elevate — Elevate the joint above your heart to reduce swelling.

But don’t stop there. After using the PRICE method, make sure to call your care team and follow the steps in your treatment plan. You’ll likely need to infuse your prescribed factor replacement to stop the bleed and protect your joint.

If you have joint pain, you can also try nondrug strategies that use different approaches to managing pain. For example, long-term pain and stress often go hand in hand, so addressing both can make a big difference. Support groups, counseling, or other mental health resources can also be helpful parts of your pain management plan.

Other helpful strategies may include:

• Mindfulness exercises
• Relaxation techniques
• Cognitive behavioral therapy

A physical therapist can also guide you through other nondrug treatments such as gentle massage, exercise, heat and cold therapy, and transcutaneous electrical nerve stimulation (TENS).

Medicate Wisely

Not all pain medications are safe for people with hemophilia. If you’re having a joint bleed, avoid taking nonsteroidal anti-inflammatory drugs (NSAID) like ibuprofen, aspirin, and naproxen to control the pain. NSAIDS can make it harder for the bleeding to stop.

Instead, acetaminophen may be a safer choice for pain relief. Always check with your doctor before taking any medication to see which options are safest for your specific situation and when it’s best to take them.

Join the Conversation

On MyHemophiliaTeam, people share their experiences with hemophilia, get advice, and find support from others who understand.

Do you get joint bleeds and joint pain? How do you manage them? Let others know in the comments below.