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333 points glasscannon | 1 comments | | HN request time: 0.309s | source
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nwienert ◴[] No.44464404[source]
As someone who had years of undiagnosable pain and after many years (and more than one doctor trying to suggest it was all in my head) I just want to say to anyone reading who has it -

Don’t let yourself be gaslit that it’s all mental. It seems some do have that, but there are also many hard to diagnose and completely valid physical health conditions that cause terrible chronic pain. And don’t give up on trying to find out what they are. Once I did, I was able to largely manage mine, and more importantly, to stop constantly questioning my own sanity.

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CoastalCoder ◴[] No.44464523[source]
Would you mind sharing a little detail about what the physical malady turned out to be, and why it took so long to diagnose?

Sounds like an interesting medical mystery.

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nwienert ◴[] No.44465188[source]
Combination of two autoimmune conditions, one Ehlers Danlos.

Actually EDS is interesting because it became a fad I guess on TikTok to claim you had it like Tourette’s, further exacerbating the above issue.

It’s got a wide spectrum. My dad had it so lightly he was just considered “double jointed”. I gained a further thing from mom’s side, which seemed to interplay poorly. Spent 19-26 basically having extreme nausea and vomiting episodes every month or two, often having to go to the hospital to stop it. Had other weird symptoms and pains before that and during too.

Did every scan, met tons of specialists. Kept getting referred down the GI side, had gallbladder removed for no reason.

At one point I was convinced it was psychological. This was after a second doctor suggested it. It sent me down a dark path for a few years of trying to figure out what was wrong with me - didn’t help my mental state was terrible from all the uncertainty, and I had developed anxiety about eating since basically any meal could end up in hours of extreme pain. I was a total wreck. Then it just cleared up finally at 26.

It wasn’t until years later I got the EDS diagnosis, and then a genetic test showed the other immune condition. When looking at the two lists of symptoms it was such an intense moment in my life, finally having closure.

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theshackleford ◴[] No.44465470[source]
> At one point I was convinced it was psychological.

I ended up thinking the same thing after a prolonged period of symptoms that didnt make sense. I 100% began to think I was losing my mind and imaginging it. Turns out I had a spinal cord injury. The problem is, not knowing that for as long as I did ultimately did impact my mental health in other ways.

It was nice to find out ultimately that no, I was not just going insane.

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1. nwienert ◴[] No.44465919[source]
Cheers brother, not many people know that specific nightmare. Glad you’re over it.