So, I'm reading my Facebook this morning, and not for the first time, I get a sense that someone is advocating that _everyone_ cut out something that made _them_ feel bad. Not a day goes by (except the rare day that I don't have any online time at all) that I don't see something similar. Everyone needs to eat low carb/vegetarian/paleo. Everyone needs to quit caffeine, quit smoking, take up a gentle exercise routine but don't overdo it. Everyone should be avoiding this med/that med/pain meds/all meds. Everyone should be taking this med, that med, this herb, that illegal substance, because it really helps.
I'm not knocking the help it gives the one person, but I am knocking the armchair physician-ing. I'm also knocking a one-size-fits-all approach to chronic pain that a lot of actual physicians have. Patients, over time, become most familiar with their own care. We elimination diet and figure out what foods we shouldn't and can't eat and what makes us feel better and worse. After more than a decade with a chronic pain syndrome, I've tried a lot of medications and therapies and I have an idea of what will work in the long term and what won't.
Anyway, the reason I bring this up is that I thing it's important to remember two things as someone living with chronic intractable pain:
1. No experience is unique. You are not alone, and whatever your body is doing, the answer to the question "does/is anyone else..." Is yes. Someone else is or had gone through the same thing. So skip that part and instead ask what you really want to ask. "What's a caffeine sensitive girl to do for that 2:00 feeling?"
2. Everyone's experience is individual. Don't judge. Don't assume that every user of a med/food will have your experience with that med/food. Some will, but many will have better success with a different combination of diet/exercise/meds than you. Sharing an experience is great, don't mistake me (oh, I also had an awful time on med y, ask your doc about med q, it was much better for me at least). But running roughshod over someone else's medical decisions and care is not OK.
I'm not knocking the help it gives the one person, but I am knocking the armchair physician-ing. I'm also knocking a one-size-fits-all approach to chronic pain that a lot of actual physicians have. Patients, over time, become most familiar with their own care. We elimination diet and figure out what foods we shouldn't and can't eat and what makes us feel better and worse. After more than a decade with a chronic pain syndrome, I've tried a lot of medications and therapies and I have an idea of what will work in the long term and what won't.
Anyway, the reason I bring this up is that I thing it's important to remember two things as someone living with chronic intractable pain:
1. No experience is unique. You are not alone, and whatever your body is doing, the answer to the question "does/is anyone else..." Is yes. Someone else is or had gone through the same thing. So skip that part and instead ask what you really want to ask. "What's a caffeine sensitive girl to do for that 2:00 feeling?"
2. Everyone's experience is individual. Don't judge. Don't assume that every user of a med/food will have your experience with that med/food. Some will, but many will have better success with a different combination of diet/exercise/meds than you. Sharing an experience is great, don't mistake me (oh, I also had an awful time on med y, ask your doc about med q, it was much better for me at least). But running roughshod over someone else's medical decisions and care is not OK.
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