Hemophilia bleeding isn’t always the root cause of our joint pain

In the fall of 2023, I was at a work conference in Indianapolis and headed down to the hotel lobby to meet a colleague for lunch. I was excited, as we were going to eat my favorite food: Ethiopian! Suddenly, I felt a sharp, shooting pain in my hip. It made no sense at all — I was just walking. But every time I took a step, I was in significant pain. Walking hurt, sitting hurt, standing hurt. If I got into just the right walking stride, the pain would lessen momentarily, but then come back with a vengeance.

As a person with hemophilia, I must rule out internal bleeding whenever I’m in intense pain. It’s important because I need to take factor VIII (FVIII) replacement products to help my blood clot if I’m bleeding. I have FVIII deficiency, also known as hemophilia A, and need to infuse extra factor during a bleed to ensure proper healing.

I infused FVIII right away, but the pain remained hours later. Usually, if I catch an active bleed and take my medication quickly enough, I feel a difference within an hour or so.

I called my hemophilia treatment center (HTC) to get its input, as this continued pain confused me.

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Finding the source of the pain

Over the next few days, medical professionals from my HTC asked me a lot of questions over the phone, including whether my symptoms aligned with my past bleeds. My answer was “maybe.”

As the week wore on, the pain got worse and it became harder to walk. By the third or fourth day, I was experiencing common symptoms of a hip bleed — a familiar feeling of spreading heat and tingly sensations that felt like soda bubbles. At that point, it was clear I was bleeding. But had this situation started out as a bleed?

Once I got home from the conference, I connected with my local physical therapist (PT). While I’d ended up with a bleed, I learned that the sharp pain I initially felt was a hip subluxation, or partial dislocation, that was possibly pinching my labrum. Had I been home (instead of at a conference), I could’ve seen my PT sooner and resolved the issue expeditiously. Instead, my hip remained subluxed for days, resulting in a bleed.

In this case, if I’d addressed only the bleed, I wouldn’t have solved the underlying problem and likely would’ve kept bleeding off and on indefinitely. I also would’ve remained in pain.

My dad, who also had hemophilia, dealt with hip pain for years and used a cane to help him walk. When he went to his HTC, a PT helped him learn how to walk properly with the cane. It turned out that he was using the aid incorrectly, significantly exacerbating his hip pain over time.

Treating the root cause of joint pain

I share these narratives because I’ve heard many similar stories over the years. Often, when people with hemophilia experience joint pain, we assume it’s a bleed. Some will go to their HTC and demand factor replacement, even if their hematologist hesitates. While it’s critical that people are able to access factor replacement products when necessary, it’s also important to pause and listen to our providers when they think there may be alternative causes for joint pain.

Maybe we have underlying issues causing bleeding, such as my subluxation. There may be other sources of pain, requiring a referral to a PT, orthopedist, or other specialist. One thing is clear to me: We must find the root problem. FVIII helped ease my pain when my hip started bleeding, but it couldn’t get my subluxed hip back into alignment.

Understanding all the issues at play is key to obtaining proper treatment and preventing a future recurrence.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.