Pain Is Hard, and Worse Without a Diagnosis to Explain It

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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Living with pain is exhausting. However, those living with pain have numerous ways to manage their condition, seeking relief through medication, physical therapy, massage, chiropractic care, and even hypnosis. Knowing the cause of that pain is helpful for doctors and patients as they work to find ways to cope and maneuver in the world. But when the source of the pain is unknown, it’s overwhelming to find ways to manage the pain and life.

In September, my family was in a car accident. Fortunately, we didn’t have significant injuries, but I believe the impact hurt my youngest son, Caeleb, who is 16 years old and lives with severe hemophilia A with an inhibitor. When the car sideswiped our vehicle, Caeleb braced himself with his right arm.

A trip to the emergency room revealed that the only injuries sustained were minor and not cause for alarm. Yet over the next few months, Caeleb developed pain in his arm. This pain is not revealing itself as arthritis or even soreness; it’s excruciating.

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After numerous doctors’ appointments and testing, there’s still no evidence revealing an injury. Of course, I don’t want anything to be wrong with my son, but not discovering the cause of his pain is frustrating.

Caeleb began summer rehearsals with his school band, and after the third day of modifying his workouts, he called to come home early. His pain was off the charts. A warm shower and soak in the hot tub helped to relieve his pain. I feel terrible for my son. I’m doing everything I can to get answers, and the time it takes to get scheduled for MRIs and appointments is ridiculous.

Ten months have passed since our accident, and we’re no closer to a diagnosis than in September. Caeleb begins a new round of physical therapy soon, focusing on his arm. I pray that this will help him find ways to stay in rehearsals and classes without disruptions.

As a person who also lives with chronic pain, I sometimes feel like I’m going crazy. Is my pain real? Do other people feel this way, and do I need to toughen up? Am I making too much of my condition?

Yes, pain is real. However, not everyone lives with the level of pain that Caeleb and I endure. And the pain each of us has is very different. It’s personal. As for making too much of the condition, I think it’s a necessity. If people don’t speak up about their pain, the sad truth is that no one will be able to help. Pain is invisible and frustrating.

I can see how the pain overtakes Caeleb through the tears that often well in his eyes. I want nothing more than to take on his pain, but that’s impossible. I’ll keep working to help him find answers and ways to make his life easier.

It just breaks my heart to see my son suffer.

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.


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