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this post was submitted on 21 Nov 2023
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While I agree in principle, there are people with fibromyalgia who wouldn’t know medications exist for it otherwise, because their doctors barely understand fibromyalgia.
You could always do like I do: not be a woman. No fibromyalgia for me at all. My mother and sister keep ignoring that advice.
But on a more serious note, that really has to suck. Autoimmune diseases are much more likely to affect women and are more likely to be ignored. There was a cool Radiolab episode on them. A hypothesis is that women have an overall more sensitive immune system because their immune system is suppressed during pregnancy so having a more sensitive one means you are less likely to get sick during pregnancy. Use of hormones like estriol seem to be helpful. But if you suffer from fibromyalgia, you probably know a good amount/all of that info and more.
That is exactly it. One of my family members suffered from it for years before finding out about it online, and eventually had to switch to a new doctor that didn’t try to convince them it was all in their head. It’s hard to accept that the weight of a thin bed sheet on your legs being painful is just in your head, yet that’s the line they were given repeatedly.
This is true for a lot of other cases too. People live with chronic conditions because they either don't know that it's an issue and there's treatment, or they sought treatment and there wasn't any help at the time, and since then there have been new drugs release
There’s so much new stuff coming out that most doctors don’t know anything about it until someone mentions it or they go look it up on the internet. Some will only refer to their huge out-of-date drug encyclopedia and if it’s not there you’re SOL.
I know a few people with fibromyalgia who didn’t know that’s what they had until they saw a commercial for it. Doctors never mentioned it as a possible diagnosis.
Almost as if doctors need CE training, huh?
And even then there would still be blind spots.
As someone who worked in the medical CE space, oh yea. The doctors who have the most pull are the dinosaurs who have been using the same techniques for decades. Meanwhile the doctors with fresher views and novel techniques based upon new evidence struggle to get a dozen doctors to attend.
Especially for general practitioners. If you’re a specialist with a narrow focus it’s ~~easier~~ not as difficult to stay current but if you’re expected to know enough about everything to refer patients to those specialists, there’s a lot to stay current on, even if you’re motivated to do so.
Most people don't even Google their medications or illnesses. "Ask your doctor about" is frankly not bad advice much of the time.
I was so happy when I heard my doctor schooling a few pharma reps on how the drug they were pushing actually works.
Unclear… do you mean for the better or worse? Could go either way.
I'm not sure I understand your confusion.
Does that mean he/she was explaining the mechanism by which it works and it was good? Or was she/he explaining negative side effects they failed to mention or didn’t understand? Something else?
Ah, she was just correcting them on the mechanism of action, so I don't think it was a good or bad thing. I was paying and leaving, so I couldn't stay for the whole convo.
Thank you for coming back to this! Yes, that sounds like a great doctor, good to hear she wasn’t having to school them on how it was causing harm or something like that.