I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors…
I think you're being unnecessarily dismissive of good, reliable information coming your way. Anecdotal advice is some of the most reliable, trustworthy advice that we come across. All those studies are affected by agendas from dozens of individuals and organizations, not to mention potentially poor procedure and general incompetence. You're being gifted information which was transported to you graciously from an actu…
How to deal with extreme physical pain
181–190 of 362 posts
Re: How to deal with extreme physical pain
#182Earlier quoted context omitted.
This is exactly what I'm talking about. One beer every 3 months is proof my diet is a problem? For a condition you know nothing about? Really. Fine, then it's useless, and I've surrounded myself with idiots, all of my careful testing and attempts to understand my condition have failed. This kinda of nonsense, where I debate the very meaning of "me" to some extent is tiring. Even if I'm wrong in all of this, I'm not h…
I think you need to cool down. We live in a complex world. Some of us know the health side well a lot of us don't. Then we get an issue, like I had a heart attack and stents, and besides what the doctors and the family say, we read and read and read. And then when we see all the healthcare industry is trying to do is to make money from our sickness, when we see a friend in similar or really tangential pain, we try to…
I think this is unfair. The response is probably calmer than what I would have passed back in my best effort, had I been the one engaged.
> move on if not interested, but blaming people for trying to help in a social setting
On HN (and with a higher bar), I would be blaming people for talking past me in seemingly bad faith.
Re: How to deal with extreme physical pain
#183I was diagnosed with fibromyalgia ~15 years ago. Since then, having started an immunosuppressive for something else and it seemed to help with the pain- now the doctors think it is psoriatic arthritis. I am in constant, mild pain. Some days it is nearly, but not quite debilitating. Some people think I am making it up, exaggerating, or that it is all in my head. There is no certain test for either condition- in partic…
> There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense. FM is young (around 1990 it got its name), so a lot of what we know has changed, especially in fifteen years, but it is no longer the case that there isn't a test for it (there's multiple), and it should not be the diagnosis of last resort when nothing else makes sense. T…
https://www.healthline.com/health/fibromyalgia/blood-test#re... (Feb 2020)
Neither the American College of Rheumatology nor the Mayo Clinic appear to indicate it as an option, yet; both continue to claim that FM is a label after other options have been exluded:
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/...
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseas...
In fact, the The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" that you refer to are still incredibly generic; basically it's just an extended period of pain, accompanied by poor sleep or mood to the exclusion of other possible causes. Naturally, months of chronic pain will contribute to feeling poorly rested and / or an altered mood, fibromyalgia or no.
I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized.
The thing that surprised me the most about this conversation (and the quick research it forced me to do) is that there is a curiously high level of co-incidence between psoriatic arthritis and fibromyalgia. One of the more annoying effects I suffer (most frequently when I was younger, less so now) was a heavy "fibro fog" cognitive decline typically triggered by high levels of stress.
Maybe I have both? Who knows. Yet another website claiming that neither psoriatic arthritis nor fibromyalgia have a reliable test: https://www.everydayhealth.com/psoriatic-arthritis/living-wi...
(I just might ask my doctor about getting one of those FM/a tests though!)
Re: How to deal with extreme physical pain
#184Re: How to deal with extreme physical pain
#185I’m dealing with chronic pain that’s bringing my current career to its end. I’m still unsure how active I’ll be able to be in the future due to it. In my case it’s autoimmune; my body has decided it’s going to destroy itself from the inside out. Arthritis, psoriasis, GI issues. It’s getting worse fast enough that I’m being transferred to a hospital for care (Military, stationed overseas) and preparation for retiremen…
It's a shame how hard it is to appreciate the times we're in good health. Though probably an essential adaptation else we'd be in sheer amazement at all times while healthy if we could truly internalize how bad things could get. How would we get anything done if we could truly marvel at peak health if we knew what ultimately awaited us somewhere down the road.
Re: How to deal with extreme physical pain
#186Earlier quoted context omitted.
This is exactly what I'm talking about. One beer every 3 months is proof my diet is a problem? For a condition you know nothing about? Really. Fine, then it's useless, and I've surrounded myself with idiots, all of my careful testing and attempts to understand my condition have failed. This kinda of nonsense, where I debate the very meaning of "me" to some extent is tiring. Even if I'm wrong in all of this, I'm not h…
I think you need to cool down. We live in a complex world. Some of us know the health side well a lot of us don't. Then we get an issue, like I had a heart attack and stents, and besides what the doctors and the family say, we read and read and read. And then when we see all the healthcare industry is trying to do is to make money from our sickness, when we see a friend in similar or really tangential pain, we try to…
First, realize that the person with the chronic health issue has probably put a lot more time and effort into addressing the complexity of their experience.
Second, realize it is in fact exhausting to constantly get unsolicited advice.
Third, realize you presumably are not the only person this person with a chronic health issue interacts with and that most people do not take special care to avoid giving unsolicited advice.
Fourth, realize this means you should assume that this person is getting a lot of unsolicited advice.
Stop for a moment before speaking at this point. Ask yourself, is your additional one iota of advice is highly likely to be both completely novel to this person and efficacious for their issue? Your advice is unlikely to be both those things simultaneously but instead forces this person’s focus back on an issue they are likely trying to avoid thinking about.
Okay, given all that, I am not saying “don’t ever give advice”. All I would request of people is that most of the time, ask first. If your advice is critical, novel, and highly likely to succeed, perhaps intervene immediately. But otherwise, the person will appreciate this opportunity to decide whether or not to interact with input regarding their chronic issue, it’s very unusual that anyone takes care to consider how it feels emotionally to be constantly the person who needs to be told how to live.
Imagine you were telling someone what you had for lunch. You had a sandwich. They ask what toppings you had. You say you had these particular toppings. The person then says “you should try next time adding this other topping, that would have made your sandwich better and in fact would greatly improve the quality of your life”. Unfortunately, you’re allergic to this additional topping, which you dutifully inform the other participant in the conversation.
Okay, that’s fine. Maybe it would have made the sandwich better in their opinion, and sometimes that kind of stuff is okay to let go. But now imagine this conversation happening with multiple people every lunch every day for the rest of your life. Pretty soon you’d start wondering why the fuck all these people have such strong opinions about your lunch. You would also notice that none of these people ate any sandwiches with the topping they insisted would improve your life so much.
I have a chronic health condition that is better managed now, but at one point caused debilitating pain. I stopped talking about it and tried to avoid giving any indication I was unwell at all outside of intimate social settings, because the sheer volume of unsolicited input I got about how the right way to deal with the fact that a surgeon shredded the nerves in my abdomen was to take ginger and rub lavender essential oils on it, or just use CBD, or have you tried hopping up and down on your left foot on a Tuesday immediately following the vernal equinox...
Re: How to deal with extreme physical pain
#187I have a chronic condition that causes pain. One of the things I've learned, in as much as I can, is I don't tell anyone. I'd rather be rude than explain I'm in pain. Not because I don't appreciate sympathy. Not because I'm ashamed. It's because I don't want your advice on how to make the pain go away or to deal with it. I'm tired of advice. I've got too much advice. I try things, I research issues. I talk to doctors…
Re: How to deal with extreme physical pain
#188A few years ago, my partner ran out of critical insulin pump supplies and I appealed to the internet for help. Eventually, Scott drove quite a way to our apartment to give her (a complete stranger) what she needed (and more!) He's a stand-up grade A really nice guy, and I genuinely wish him the best. I wish that I had more expertise to help with this issue, as the only thing that comes to mind is I've had good result…
Jesus.
Re: How to deal with extreme physical pain
#189Fuck. Shit sucks. I myself have dealt with long lasting (> 1 month) pain and it's horrific. Your whole perspective changes, you think life will never be the same. I can't imagine what it's like when these issues stretch into the years.
Had invasive surgery on my humerus that involved drilling & cutting into bone and muscle. The pain following the nerve block wearing off was indescribable. Groaning was about the most I could do. The pills might as well have been made out of sugar. You're right, perspective does change permanently. There weren't "seeing the light" moments but I certainly know now who my friends are. I have an interesting view of life…
My anecdote was I once asked for a prescription for 1 Percocet per month for the one time a month I need serious pain relief and was referred to physio therapy after having already done 2 years of it. I even had my previous prescription from the surgery with 40 out of the 60 pills remaining to offer as proof of my none addiction. I often wonder how many live with chronic pain because of similar circumstances.
Re: How to deal with extreme physical pain
#190Earlier quoted context omitted.
The only way to fix my ankle arthritis is to have the joint replaced, which is not ideal nor a consideration. Anything otherwise is not good, nor reliable information. It's kind of like me saying to you, "Hey, your advice is stupid, maybe you should go take some smart pills so you don't infect others" in seriousness, instead of as an off-hand reply gifting you with information graciously.
(With the disclaimer that I still think that unsolicited medical advice is kind of rude.) If someone is giving you advice which worked for an unrelated condition, you're still ignoring useful information which may help someone you know if you actually bother to pay attention and remember it. If someone is giving you advice for the same condition you have been diagnosed, you're taking information from authority figure…
Did you try (increasing exercise/water intake/sleep/just not sucking)? How about (decreasing gluten/carbs/aspartame/"toxins"/bogons)? it's just low-hanging fruit.