With bleeding disorders, how do we know when pain isn’t ‘just pain’?
After weeks of lingering discomfort, I finally decided to infuse factor
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It started with a refrigerator leaking water out of the bottom and a YouTube video that made it seem like an easy fix.
You know the kind: “Just remove the freezer door.” “Melt the ice with a hair dryer.” “You’ve got this.” It didn’t seem like a big deal, but rather something I could handle. So I tried to fix it.
Somewhere during the process, whether it was while bending over, lifting, or twisting the wrong way, I felt an aching pain in my lower back. It was nagging enough that I knew to put the refrigerator back together and call a professional.
What started as an ache turned into something that lingered; while not severe, it was persistent. For nearly five weeks, I had ongoing discomfort in my back that began radiating to my right hip.
When you live with bleeding disorders, as I do, pain comes with questions. Is it a muscle bleed? Or could it be a joint bleed, something happening beneath the surface that I can’t see? And perhaps the most exhausting question of all: Am I overreacting — or not reacting enough?
I did everything I knew how to do. Because of my bleeding disorders, I can’t take ibuprofen or aspirin, so I took Tylenol. I’m also normally prescribed meloxicam as an anti-inflammatory. I alternated between ice, heat, and gentle walking, but relief was transient.
I tried to make an appointment with my primary care doctor, but he was booked solid through the end of the year.
Experts in doubt
Finally, the idea I’d been toying with, which had been simmering in the back of my mind, came to the surface. I decided to infuse factor IX — not because I was certain it was a bleed, but because I wanted to see if it would help. Maybe all the women who have sung the praises of prophylaxis had finally gotten my attention. I figured I had nothing to lose. Yet, even with decades of experience, I still hesitated.
Within minutes of infusing, my back pain improved. And sure enough, as the factor wore off, the pain gradually returned. This wasn’t just pain.
People assume that if you’ve lived with a bleeding disorder your whole life, you must instinctively know what’s happening in your body, and that you can easily tell the difference between a bleed and something else. But it’s not always that simple. Over time, many of us become experts not only in our condition, but also in doubt.
There’s also a quiet pressure that comes with treatment. Factor is lifesaving, but it’s also something we’re taught to use thoughtfully and not waste or overuse. So sometimes we wait, monitor, reassess, and try to be “sure.”
This is especially true for women, who are still too often underdiagnosed, dismissed, or told their symptoms don’t quite fit the textbook definition of hemophilia. We are used to questioning ourselves and being questioned by others.
I don’t have a perfect formula for knowing when pain is “just pain” and when it’s something more. I still get it wrong sometimes.
For five weeks, I lived with that uncertainty, hoping it would resolve, and wondering if I was overthinking it. It wasn’t until I chose to act that I found clarity. I haven’t infused again yet, but I will, because now I’m listening.
Perhaps that’s the lesson I keep returning to: Not everything is as simple as it looks — not the YouTube video or the “quick fix,” and not the pain that follows.
What seemed like a small moment — a minor refrigerator repair, a simple movement — turned into something much more complicated, something I couldn’t see but could feel. Sometimes, trusting ourselves is the most important fix we can make.
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 consult your physician or another qualified healthcare 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.
Paul Clement
Determining the cause of back pain can be tricky: it is usually caused by a strained muscle, nerve compression (due to herniated/ruptured disc, spinal stenosis, etc.) or both. Pain due to a strained muscle tends to decrease over a period of several days. Lower back nerve pain often starts in the back or buttocks and may travel down one leg; it is sometimes felt as a sharp, shooting pain and may be accompanied muscle weakness, tingling, or numbness. Nerve pain is often chronic and may take weeks to months to resolve and although most cases resolve within a year, this pain may become permanent.
Regarding the treatments you chose: icing or heat may temporarily help reduce the pain of a strained muscle or nerve pain, but should not be used if a bleed is suspected. Icing inhibits clot formation (https://pubmed.ncbi.nlm.nih.gov/22913708/) and heating increases blood flow to the area, both of which increase bleeding. Given the nature of your pain (pain from back radiating down to your hip), lack of trauma, and the fact it lasted more than five weeks indicates that your pain was likely due to a compressed nerve. Infusing factor after five weeks for nerve pain will have no effect, and the temporary relief you felt is likely due to the placebo effect. But your story carries an important recommendation: you should always infuse at the first sign of a bleed. This is especially true for parents of non-verbal toddlers who are not on prophylaxis: if your child is favoring or not using a limb, infuse immediately and don’t wait to see if it is a “real bleed.”