• mateomaui
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    7 months ago

    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.

    • pimento64@sopuli.xyz
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      7 months ago

      “hmmm have you considered that chronic pain isn’t real and you’re lying? Don’t worry, I’m still going to bill your insurance for the full price of an office visit.”

      • SeaJ@lemm.ee
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        7 months ago

        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.

      • mateomaui
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        7 months ago

        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.

    • Fal@yiffit.net
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      7 months ago

      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

      • mateomaui
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        7 months ago

        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 Some will only refer to their huge out-of-date drug encyclopedia and if it’s not there you’re SOL.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.

          • mateomaui
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            7 months ago

            And even then there would still be blind spots.

            • Ghost33313@kbin.social
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              7 months ago

              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.

              • mateomaui
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                7 months ago

                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.

            • BolexForSoup@kbin.social
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              7 months ago

              I’m not sure the solution is pharmaceutical companies getting to advertise. There has to be a better way lol

              • mateomaui
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                7 months ago

                I’m not saying I like those ads, far from it, but the reality is the medical landscape updates so frequently, and doctors are so overwhelmed already, that sometimes an ad is the only way patients learn about new things. Reality sucks sometimes. Maybe one day the information pipeline to doctors will improve, though you still have to depend on them keeping up with everything.

                • BolexForSoup@kbin.social
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                  7 months ago

                  Then the NIH should get funding to do PSA’s on medical diagnoses and/or potential treatments. Not drug companies pushing their solutions regardless of efficacy or relevance.

                  I agree on the problem, my issue is the currently installed solution that is only a solution as a secondary consequence.

        • FaceDeer@kbin.social
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          7 months ago

          Most people don’t even Google their medications or illnesses. “Ask your doctor about” is frankly not bad advice much of the time.

        • EatYouWell@lemmy.world
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          7 months ago

          I was so happy when I heard my doctor schooling a few pharma reps on how the drug they were pushing actually works.

          • mateomaui
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            7 months ago

            Unclear… do you mean for the better or worse? Could go either way.

              • mateomaui
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                7 months ago

                how the drug they were pushing actually works

                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?

                • EatYouWell@lemmy.world
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                  7 months ago

                  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.

                  • mateomaui
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                    7 months ago

                    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.

      • treefrog@lemm.ee
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        7 months ago

        There’s several chronic pain conditions, such as fibromyalgia, that we don’t often know what the underlying problem is.

        So, we give people medication that reduces the chronic pain they live with everyday.

        And as one of those people, I’ll keep taking nerve blockers if it means I don’t spend half the week praying for death.