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Vent session: my frustrations with lung pain
Lung pain. I’m guessing that most of us here are quite familiar with it.
For years, I’ve had pain in two specific places (sometimes, other places as well, but these have long been known as my “bad spots”). It always made sense to me, what with the scarring and bronchiectasis we know I have. I was always pretty in tune with what was happening in those areas and when I had a pain flare up, I could do extra treatments and some targeted CPT to work mucus out of those bad areas, relieving some of that pain.
When I started Trikafta, the pain in my chest increased. Not only in those areas, but all over. Again, this made sense to me. I talked with a care provider who agreed that Trikafta could cause things to change — more air and mucus movement in areas where that wasn’t happening before — which can be uncomfortable or even painful. Two months later, as the pain continued, I had some imaging done in an attempt to find the cause. We found a spot of pneumonia which was a surprise to everyone, but it wasn’t near either of my painful areas and we determined it was likely not the cause. Now, nearly a year later, I still experience the same pain off and on.
Here’s the extra frustrating part for me — I used to be able to work extra hard to get mucus out of those areas to help with my discomfort, but that no longer happens. As I’ve mentioned before, I have little to no mucus production! I’ll go for months without coughing anything up, not for lack of trying. It simply isn’t there anymore! While this is absolutely incredible, it also leaves me questioning… what is causing the pain?
Yesterday, I discussed this with my doctor during a telehealth appointment. She shares my confusion. Together, we looked at my most recent CT scan and while there are some visible abnormalities, once again, they don’t seem to be related. *ugh*
Do you experience pain like this? How do you treat lung pain? Have you had pain that simply doesn’t resolve, even when there’s not an explanation for it?
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