[monort]

Can't find it - it was a long time ago. I was getting strong headaches while traveling, it was a caffeine withdrawal, but I didn't know it until someone here mentioned the possibility. I started drinking caffeinated beverages while traveling, and the problem was gone.

[DoreenMichele]

Thank you for trying to find it and for replying.

Please note that you getting strong headaches while traveling due to caffeine withdrawal really doesn't fall under what I was describing.

I'm talking about people with much more serious, chronic conditions where the entire world would like to act like "Your genetic disorder would totes go away if you would just eat this thing here/take this supplement/read this article!"

And I struggle with this myself because I actually have a genetic disorder and it actually has responded well to dietary and lifestyle changes, so I am prone to wanting very much to spread the good news and it tends to not go over well with other people. So I've had to learn to curb my own enthusiasm.

I'm not suggesting no one should ever offer unsolicited feedback on Hacker News. I'm just suggesting people be a little sensitive when talking to folks with overwhelming and incurable problems who have probably heard your suggestion umpteen other times and will probably just find it to be an imposition, not a brilliant insight.

Most of the time, they aren't commenting about their condition because they are hoping some random stranger will know the miracle cure that they hadn't heard of and be able to somehow back it up credibly. Most of the time, they are just trying to distract themselves from unremitting agony by engaging in a little discussion and their medical situation is something they happen to know something about, so they offer their two cents worth in hopes of feeling like a normal human being for thirty seconds.

Intruding on that with "Have you tried X! You should totes try X!" tends to be a super negative experience in most cases for such people. It robs them of their moment of normality that they were reaching for as someone who can simply talk to other people, just like anyone else.

You have a great day.

[hermitdev]

Thanks for your several thoughtful replies.

I'm certainly engaged with my medical professionals. I see about 7 docs routinely! Saw my primary care physician just this morning. I'm more engaged now that I'm married (nearly 2 years now), before I mostly grin and bared it.

I also have a genetic condition that affects my liver, but thankfully so far, it's just a monitor it quarterly or so.

For, me, at only 38, my cervical and thoracic arthritis has been my greatest challenge. My genetic condition doesnt cause me problems day to day, and can be easily managed with diet, and if need be, scheduled phlebotomy.

The arthritis, I cannot control. Most meds dont work, and the ones that do put pressure on my liver. Opiates wouldn't even really help me, I think, because I dont think they help with nerve pain which is about 95% of my problem. I have a sufficient pain tolerance I can ignore a constant burning sensation along my spine. I cannot ignore the very sharp shooting nerve pain I get that travels down an entire side of my body.

I can cope with that to an extent when it's constant. Where it really gets bad is when I get random sharp stabbing pains in my arms and legs. Bad enough I've bruised my knees hitting them against my desk from reflex.

Like I said, I'm working with my various docs to manage things, but its tough. Medically, I see: Primary care Gastroenterologist (also his nurse practitioner) Hematologist Neurologist Orthopedist

Point is: I'm trying to make things better, but what a lot of what afflicts me cannot be made better, and has to be managed, and I'm trying. Not always succeeding, but trying.

[DoreenMichele]

I hope you find better answers.

I was fortunate to be diagnosed late in life with a relatively mild form of a serious genetic disorder. This meant I had my own mental models already for what was going on in my body before I got a label.

It allowed me to bring fresh eyes to the problem space and I've healed a lot when doctors say that cannot happen. The only real downside: The world is quick to act like I'm making that up and call me crazy.

I've had good results healing nerve damage where I had issues like numb spots in my feet, so I'm convinced a lot more is possible than is currently believed to be possible.