ADHD-like symptoms
I was diagnosed with Systemic Lupus Erythematosus at 17, but I had symptoms even before that (extreme fatigue since around 16). Over the years I’ve had a range of physical symptoms like joint pain, inflammation, visual migraines, episodea of vision loss, fainting episodes, unexplained fevers, anemia, pleurisy, pericarditis, nephritis.
But what’s been most confusing and distressing is something that started around 2020. I feel like there was a pretty clear shift in my cognitive functioning, especially in what I now understand might be executive function. It’s like there’s a disconnect between intention and action.
What makes this worse is that before this, I was actually very disciplined. I knew how to study, I was organized, I passed all my first-year university classes. So this isn’t about not knowing what to do.
I’ve tried pretty much everything on the “behavioral” side: planners, to-do lists, productivity systems, studying with other people, online accountability tools. None of it fixes the core issue.
At the same time, I’ve also noticed more impulsivity and less self-control in general.
I have never come across anyone describing something quite like this. What I’m experiencing doesn’t feel like typical “brain fog” or confusion. It feels much more specific. It’s very similar to ADHD-type symptoms, but these started after age 20, which makes it incompatible with an ADHD diagnosis.
Over the years, I’ve repeatedly brought this up with my rheumatologist, and the response has consistently been that it’s “psychological” and that there’s no point in pursuing further neurological testing.
On the psychiatric side, I’ve tried an extensive range of treatments—honestly more than I can easily list. This includes: multiple ADHD medications (essentially all available options where I live) antidepressants, even at high/OCD-level doses, antipsychotics, benzodiazepines
Despite all of this, there has been no meaningful improvement in executive function.
At this point, what makes it even harder is the sense of isolation. Most people don’t understand lupus fatigue to begin with, and even fewer can relate to a cognitive issue like this. The combination of both has made it extremely difficult to explain what I’m experiencing or to feel understood.
It's also the trauma of having gone through chronic chest pain even after pleurisy and pericarditis had supposedly gone away.
After all these years, I’ve finally found a new rheumatologist who actually wants to investigate this properly. Ordering an MRI, looking into brain-related antibodies. But this is the first time in about six years that anyone has been willing to do that.
So part of this post is me asking whether anyone has gone through something similar, and part of it is just me venting after years of feeling misunderstood and not properly evaluated.