There are times I almost wish my undiagnosed fatigue issues were more comprehensive and debilitating. It’s tough enough for people dealing with ME/CFS to get doctors to believe them. What chance does my mediocre version have?
Today I had my first in-person appointment with my pulmonologist (we’ve talked by phone), who I’ve been seeing as part of the whole sarcoidosis thing. Prior to this appointment, I’d had a lung function test where everything came up normal, which is the sort of thing that leaves me scratching my head given my bouts of becoming winded or out of breath from what most people wouldn’t really consider exertion.
For just under a decade, my primary care physician and I have tried to come up with things to explain the fatigue, beyond the fact that my autistic brain (and later we added dyspraxic to this) simply needs to do a lot of extra work to manage the ongoing conflict between resources and demands.
(It’s possible, of course, that there simply isn’t another explanation, and that’s the sum total of the causation. It’s going to be tough, though, to convince Social Security that being autistic and dyspraxic is fatiguing sufficiently to be disabling.)
Despite explaining to my pulmonologist that my capacities have been dwindling for six years or so (even beyond what they were before), and despite relating that, for example, my daily walks last spring and summer routinely and regularly hit a wall at half an hour and a mile and a half, and despite mentioning what the past week has been like, he really seems set on the idea that my windedness with exertion likely is “deconditioning”, and that all I probably need to do is keep pushing a little more each time.
It’s a little bit as if he didn’t hear, even with repetition, that my daily walks simply could not go beyond that half an hour and mile and a half. That was the wall. Day after day after day. There was no pushing. That was the pushing.
(We didn’t even reach the fact that with exertion and effort that approaches or even a little bit passes my limit, there’s also an immediate and marked increase in cognitive and motor flubs. My resources are drained. My overall capacities are nearly nil.)
For people (not me) who deal with ME/CFS, it’s pretty common for the “exercise more” recommendation to be completely unworkable, as it reportedly just makes things worse, not better. To be clear, again: I do not have ME/CFS. I’ve read enough stories about and by that community to know that my fatigue issues aren’t nearly as deeply impactful.
Nonetheless, they are real and they are limiting. Will I return to the daily walks with the improving weather? No doubt. Will I be able to push beyond half an hour and a mile and a half? I guarantee the answer is, “No.”
So all I can do is wait and see what he says when I report back in two months that, yes, like I said, I have an exertion limit. I’d just like one way or another to be able definitively to explain why.
In the meantime, we’re running more bloodwork (because for years I’ve had low white counts, and if we do end up needing actively to treat the sarcoidosis, it’s tougher to do so in patients with a low white count); getting a cardiac ultrasound; and I’ve been prescribed an inhaler to use before exertion, to see if that has any impact.
Down the road, there’s the potential (although it wasn’t clear to me how likely) of an MRI, but as it would be one that lasts an hour and I had a panic attack just going neck-deep into a CT scanner, he agreed that’s not a direction to go in until and unless it’s somehow necessary. Although don’t get me started on the fact that also I still have old-school metal crowns.