Back in the “old days” before prophylaxis (prophy), hemophiliacs were treated on demand when they had a bleed. Max is just old enough to fall into that category so he didn’t switch to prophy until he was five years old. By then he had already had enough bleeds in his left ankle that the damage was done. He had this funky gait and could never really run very well.
Even after he started with regular treatments he had lots of breakthrough bleeds in that ankle. When he was seven he had the first MRI of the ankle, then another at 12 years old that identified his arthritis. Sometimes he would say he didn’t know if his pain was a bleed or arthritis. I would play the game of swelling or no swelling; If it was swelling and hot it must be a bleed, if it was just aching and painful, well it must be the arthritis. Not a very scientific method but there really wasn’t another to tell, other than x-rays or an MRI every time he bled.
I was accustomed to hearing the words “my ankle hurts;” I took it for granted that his ankle always hurt. I came to understand that sometimes when we were planning something that involved walking, I would end up going without him. Sometimes he would know it was definitely a bleed, others he would feel pain and treat just in case. There were times that I could see he was having a bleed by the way he walked even before he would realize it. Maybe the limp was different?
We tried to stop the arthritis from progressing. Max had two rounds of steroid injections, and finally one P32 (a radioactive fluid) injection between 11 and 16 years old, before we finally accepted that was not going to work. The MRI he had when he was 16 showed very progressed degenerative arthritis. It was so obvious that I could see it clearly. That was when the orthopedic doc said he would need an ankle fusion. The “good” news was that Max could wait until the pain got to a point that he couldn’t bear it and that it would be up to him when to have the surgery.
What caught me off guard was when Max started saying “my hip hurts.” Wait, what? Your hip? Because of the years of an irregular gait his hip started having bleeds. That MRI showed a spur on his hip, which of course was caused by bleeds, which lead to arthritis. Just as with the ankle, the doc said someday it would need to be replaced but it would be up to Max when that would happen.
When Max was 19 the pain did get great enough and the ankle was fused.The fusion only restricts the up and down range of motion, and there is still a small amount of side-to-side, which means there is still arthritis in there. Sometimes that ankle will swell even more than it did before the fusion. We still have to ask ourselves, is it a bleed or is it arthritis?
Max describes the differences being very distinct, for the most part, between arthritic pain and pain due to a joint bleed. He says that arthritis is a much more constant, persisting and somewhat dull pain, compared to sharp, precise onset of pain during bleeding into a joint or muscle. Also, when having a joint bleed, the pain from moving the joint is very noticeable and acute. Although Max says he can sometimes determine the exact onset of a bleed, he still sometimes has trouble distinguishing the two different types of pain when he wakes up with a breakthrough bleed or if a bleed sets in slowly. Max explained to me, that when pain is always present it’s good to get to know your body and what it’s telling you so you can go about treating it the appropriate way.
There’s no way to really answer the question, “Is this a bleed or is this arthritis?” It is something that depends on the individual. I bet if you asked six people you’d get six different answers because it’s such a hard question for someone who deals with it every day.
Because each person’s pain is unique to them, maybe there is not an exact way of knowing the difference between arthritic pain and bleed pain. Listening to your body, and learning what the different pains feel like to you, is an ongoing and important step to keeping your body as healthy as possible.
Maryann and her adult son, Max, live in New Hampshire.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.
