Dusty, due to your latest post on this I've not only seen that you'd already given a short impression of your doc experience regarding meds, but going into more depth now shows how it gives
@Fibromale's thread title "Don't make the same mistake I made" a deeper touch and I'm realizing I cd repeat certain doc experiences of mine here again.
Regarding meds, but also supps & herbs what I've found is that neither docs or pharmacists have never helped me with side effects (sfx), interactions & contraindications, neither knowing what I take, nor when I ask, nor when they are recommending something. Sometimes if I ask for the shop owner I will get a better answer in a pharmacy.
Recent experiences: After my acupressurist didn't tolerate a zinc supp, I looked up for her and saw what a lot of sfx are possible, it then surprised me that she didn't know, nor my GP who just generally recommends taking zinc, esp. when feeling an infection coming on.
Biggest experiences: I’ve had docs prescribing the same med again, and upon my objection a similar one, even after having said I’d gotten considerable sfx… None know
anything about how
my focal seizures work except praps my neurologist, none about how my skin works, none about my acid & IBSD (none about my back, bladder etc.). My biggest flares on top of my long continual one were caused by doc treatments, esp. meds, smaller shorter ones were supp & herbs treatments done by myself. Shows I am just too complicated.
My explanation is that docs & pharmacists need to know a bit about a lot of substances and concentrate more on the fx. Also unfortunately if we are told about sfx before we take things, or read them up we will sometimes get them (nocebo effect). However my experience, after all I’ve tried, deliberately not looking at the sfx before is I very often get sfx, and used to look them up too late unless my skin or seizures were exploding. Now I try to know beforehand what to expect and can do something about it quickly. I get
less sfx now than before, because I start treatments more carefully.
And if at all, docs or pharmacists may know a few of the 10s of sfx of meds, which wdnt help me even if they recognized them (I often get the more unusual ones), and they know hardly any of the sfx of supps & herbs, not even those they recommend, like my GP recommends zinc without measuring the zinc level first.
The problem is also that they only tell me it might be 1 of the sfx of a certain med
if I ask exactly that. If I just complain of a symptom, they will first give me something new to put on the pile (meds or operations). If I ask if it cd be a sf of
something, they will need a reminder and long look at what I am taking, incl. supps&herbs, altho it’s not much. And if I say what I am suspecting, then I’ll still usually be better or just as well off using the web. But to get that far, I need to know what I am looking for…
And I’m not bashing here. As I keep saying: Modern medicine is quite good, but only for easy monocausal conditions, and that’s not its fault, it’s just the human body is much more complicated. Functional / alternative / holistic medicine etc. may be better at seeing the complexity, but still doesn’t have ‘enough’ answers and often dabbles in vagueness and a too fixed mindset. I say that from always having had a very complicated human body myself, the mystery of which medicine of all types has unravelled only a small bit, despite my 45+ docs in 1.5y, but also having had quite a lot of insight into what medical training entails and also how practitioners think and what they know, as I can talk with them at eye-level because of that. It’s often a case of me educating them so they can educate me back with background I don’t yet know.
So it’s only DIY sleuthing for me, watching my body (fairly) closely and using the experience of people (more users, occasionally practitioners) on the web and trying everything sensible carefully with a sense of proportion - with success, not like before. But talking with my docs/practitioners about all of it, and using their occasional ideas too. OK, even their last ideas weren’t good for me, but I’m always up for trying something new…
But fibromale's thread is written as advice. I don't like giving general advice, because I'm different and can work on things differently to others. And I don't want to be more than one voice in a good choir. But I myself remain am wary of the fact that docs make a lot of mistakes and the self-advocacy fibromale referred to means taking responsibility for my treatments too and only going a certain way with the docs, while educating myself as much as I can. My main pain doc made some big mistakes regarding my seizures, but at least she advised me that. That said, I want to stress that
I still ask my docs for opinions (no longer ideas) (well-knowing that they usually won't be able to answer except my sleep lab psychiatrist
) and always tell all my docs what I'm trying out. If only to educate them...
