I've spoken with a few PWME's about their scariest symptoms, and the answers vary widely.
For me, without a doubt, it's brain fog. I rarely get serious brain fog, and when I do, I usually know the reason. Often times it's when I've increased vitamin B12 intake without increasing potassium. The last time, it was when I tried a Pregnenolone/DHEA supplement (100mg/50mg). So when it does happen to me, it seems to be more of a side effect of treatments rather than a direct ME/CFS symptom. But I wonder, if I had taken those same supplements before getting ME/CFS, would I have had the same brain fog? Almost certainly not.
I dread brain fog because it's the one symptom that profoundly interferes with my mood. I could be having terrible flu-like symptoms, or crushing shortness of breath, and still manage to be in a good mood...more or less. But brain fog is different. When I have it, I'm just not myself. The simplest mental tasks become challenging. I struggle to find the right words to form even basic sentences. That leads to more frustration.
I've always suspected that I have naturally high levels of seratonin or dopamine, or whatever it is that makes us happy. I've been a traditionally happy-go-lucky person, for the most part. And on days when I'm not feeling particularly happy, I can often consciously redirect my thoughts to more positive territory, turning a bad day good. But on those rare occasions when I'm hit with brain fog, none of that seems to work. I've tried to consciously control my mood on brain foggy days and find that it is simply impossible.
Nothing in my pre-ME life prepared me for brain fog. I've experienced flu-like symptoms before. I can even relate shortness of breath and other symptoms to various pre-ME experiences. Brain fog, on the other hand, is completely foreign. I wouldn't know how to begin to explain it to someone who hasn't experienced it.
When other patients tell me they have brain fog on a daily basis, my heart goes out to them. And I hope they're not talking about the severity of brain fog that I get. I can't imagine living with that every day.
(By the way, if I had to choose a second-worst symptom, it would be the nerve problems I occasionally experience in my hands and feet. I lose coordination in my extremities for a day or two at a time, and I have no idea why).
I'd be interested to know what symptoms rank as the worst for others...
Has anyone found any success controlling brain fog? For me, it seems to be about getting my electrolyte and mineral levels balanced, but this is just a working theory.