as small as a world and as large as alone

10:37am May 26, 2014

bittersnurr:

youneedacat:

lysikan:

youneedacat:

kristenpurgeswords:

Pain pain pain.

And everything is coming back normal or negative.

“Maybe it’s something that’s bit showing up”
“Maybe it’s something psychological”
“Maybe your mind is producing pain for you”

There are lots of kinds of pain that do not show up on tests.

Most medical problems do not show up on tests, in fact.  The things we can diagnose with tests are fewer than the things we can’t.

Assuming that because something doesn’t show up on a test, then it must be psychological, is ridiculous and bad medicine.  Especially since I think they’ve actually studied it, and when they really did lots of testing of people diagnosed as having psychosomatic conditions, they almost always uncovered a physical cause if they did enough tests for long enough.  Meaning “This is psychological” is usually a doctor’s lazy way of saying “We don’t know” — actual psychological things manifesting as physical things are vanishingly rare in comparison.

And the idea of pain that’s psychological is almost 100% bullshit.  Pain is physical.  It can come from various parts of the body, it can come from nerves, it can come from the brain (central pain), but all those things are physical.  And lots of painful things don’t show up on tests.

And even when something does show up on a test, you have to do the right test.  I had severe untreated adrenal insufficiency for years.  At minimum, six years.  And they did lots and lots of tests, but it took them six years to do the right test to find it.  So just because something isn’t on a test now doesn’t mean it won’t be sometime down the road.

But mostly “We don’t know the cause so it’s psychological” is ableist BS, not the actual practice of responsible medicine.  (And yes, I know that psychological things are just as real as physical things.  But that doesn’t change the fact that something like 99% of things diagnosed as psychosomatic, aren’t psychosomatic at all.)

Yup! Look at fibromyalgia for an example of a real problem that doctors for a LONG time called “psychological” and the symptoms “psychosomatic”.

Doctors even though of multiple sclerosis as psychosomatic/hysterical before they finally found the cause.  They have a track record of doing that, especially for diseases more commonly found in women.

Fibro kind of terrifies me because I was diagnosed with that for a few months and at that point doctors stopped looking for other causes and stopped trying to treat me with anything other than “fibro specific drugs” (read: psyche and seizure ones).

I actually have mitochondial disease. Which can be fatal. That is scary. If I had just listened to that doctor I may have died.

I’ve seen articles saying some fibro patients come back with abnormal results from CPET tests similar to mito patients and I wonder how many other people are having that happen to them too. And a lot of the fibro treatments made me worse.

For some horrifying reason, in my experience doctors don’t care about the “why” anymore. They just treat the individual parts. For some reason this is satisfying enough as improvement for them. It’s not for me.

I feel less scared knowing I could die from this because there is a “why”. Even if there isn’t much for treatment now I know the ones I am on is actually actively slowing damage not just hiding it and that gives me more hope for having a future.

In my case, I was misdiagnosed with chronic fatigue syndrome for a very long time.  And it turned out I had severe secondary adrenal insufficiency, meaning my pituitary wasn’t making ACTH so my adrenal glands weren’t making cortisol.  By the time anyone thought to test my ACTH and cortisol levels, they were too low to be measured at all.  And by that point I had almost died many times over, and was in danger of dying still.  Luckily, I’m doing a lot better since going on a steroid to replace the cortisol I’m not making.  

So I, too, am extremely wary of some of the ‘trashcan diagnoses’ that are out there – the ones that are basically diagnoses that say “We don’t really know what’s wrong, so let’s give you the most vague diagnosis possible instead of continuing looking.”

My neurologist still wants to test me for mito disease for other reasons, but I’m hoping I don’t have that.

But honestly getting a real answer, any answer, even a potentially fatal answer, was so much better than getting no answer.  There was awhile where they thought the problem might be a tumor, and even that felt like “You know what, even if it’s a tumor at least I’ll know.”  Luckily it was not a tumor.  But at this point, I feel like knowing what’s wrong is more important to me than whether I live or die in the end.  I’m really happy, though, that currently it’s looking like I have much better chances of living a normal lifespan than I had a few months ago.

But back when I was being diagnosed with CFS, I saw a guy who was supposed to rule out gross neurological dysfunction.  And instead of just doing his job and running a neuro exam, he asked a lot of questions and then wrote up a report saying that my parents and psychiatrist were clearly hiding from me the fact that I had no physical problems, and that my problems were all psychiatric in nature, and that only if I got intensive psychiatric treatment would I ever get over this mistaken idea that I had lots of physical diseases.

Then, year after year, I ended up getting test results that validated the fact that I had lots of physical diseases.  I have a much better track record that way than most people with legit physical diseases.  And yet people still act sometimes as if it could be psychological.  The first time I went to the ER in near-adrenal crisis (I had gone completely limp and couldn’t even open my eyes, didn’t respond to pain, etc.) the EMTs had already decided it was psychological before I’d even gotten to the hospital.

But if that one guy had done his job, then maybe we’d have figured this out a lot sooner.  And with the sort of shit he wrote in my medical record, it meant other doctors stopped taking me seriously.  Including repeated urinary tract infections due to a spastic urethra – stopped taking me seriously because I’d described it as “forgetting how to urinate” and he’d said “you can’t forget how to urinate, urination isn’t voluntary”.  (If it’s not voluntary then why aren’t people pissing at random wherever they’re standing at the time?)

So… yeah that kind of attitude pisses me off.  And even the jump to go to the most vague diagnosis first, makes me quite nervous.  Because CFS is about as vague as you can get.  (I know it has specific symptoms, but those symptoms can exist in a number of different diseases.)  And in my case the CFS diagnosis delayed the accurate diagnosis of adrenal insufficiency until it was so severe that I could have died.

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