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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. What your Aunt did that had a similar case to me 30 years ago to get better isn't interesting, it's an anecdote. I'm tired of hearing of woo remedies. If you have research, fine, I'll read it. One day. Maybe months from now. I am not your guinea pig. I am not going to change my treatment regimen based off your advice tomorrow.
Sorry, had to get that off my chest. It's tiring. More so than the pain sometimes.
I'd just like to say that, while I see people responding in exactly the way you and gwbas1c are describing, and trying to turn the criticism back around on you, you have made me think about my actions in the past and the way I express concern, and what sort of boundaries I should have with people. Reading about your experience, and seeing it happen in real time, has been extremely educational for me.
I hope it is heartening to know that you've inspired a self awareness in at least one person with this thread. Thank you for taking the time.
I'm less dangerous if I know nothing, but duly noted about how unwelcome medical advice can be
I was rereading _The Lord of the Rings_ a while back and one of the things that struck me was how seriously the characters take the giving of advice. In retrospect I think this is one of the biggest blind spots of American culture in general. We act like advice is cheap or even free, both in the giving and in receiving. It's not. Even when solicited. I think we'd all be healthier if we were slower to give advice, even outside of such extreme circumstances.
> It's because I don't want your advice on how to make the pain go away or to deal with it
Banana_giraffe isn't alone.
I had chronic obstructive sleep apnea and I quickly got tired of unsolicited woo-woo illogical suggestions to treat it.
Exercise and meditation doesn't fix problems with bone structure.
Sleep apnea is like knee pain in that loosing significant weight either makes a huge difference, or does nothing. Unfortunately, if it doesn’t work for you people will still constantly bring it up.
I hear that. It took a reluctantly ordered sleep study for doctors to even take my case seriously (since I was in incredible shape). Then when I picked up the machine they said they were expecting someone morbidly obese.
Sometimes people just get a bad luck of the draw, and no amount of "hard work" can fix genetics.
Exercise can help fix excessive body fat, which contributed to my apnea.
It’s actually pretty fascinating how many common and sometimes serious medical problems are known to be fixable with “woo-woo” advice like “don’t eat like shit” (advice that 95% of people don’t follow). E.g. type 2 diabetes and refractory epilepsy now have purely dietary interventions as front-line treatments. We have weak evidence that this will probably work for many other common diseases. But just 10 years ago you would probably have been accused of “woo-woo” for making this claim about epilepsy or diabetes.
And perhaps this is a thing everyone deals with to some extent for one thing or another: I have a very strictly controlled diet. It's the result of a lot of testing, and discussions with my doctors.
Most people that are around me enough get a sense of this. Most don't know the depth of it.
What gets old is when I deviate from the diet, by say having a glass of beer at a social function, it's a big deal. Everyone's concerned about me, which I appreciate, but I have to justify the beer by pointing out how it fits into my diet, and how I've planned for this beer. I have had to pull up my diet plan on more than one occasion to make someone happy.
If I was known to have problems adhering to my diet, and asked for this sort of help, then fine. I don't have that, and I've tried to tell people that I know what my diet is. I try to be nice about it, and ask people to just let me be.
Instead I get to defend every beer I have. So, now I'm the teetotaler in the office. It's just easier than the alternative. But it's damned annoying.
If your diet plan allows beer it’s probably not very effective.
Doctors aren’t going to be very helpful here - 95% are incompetent. You should probably try to come up with a good and efficiently computable a priori dietary strategy (e.g. evolutionary ancestral diet, with the goal of minimizing the chance of running into defective metabolic pathways). I can’t think of any such strategies I’m aware of that would allow beer.
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 harming you, you're someone online, but I try really hard to not be a burden on anyone I come in contact with. I actually try to be a net positive to the world, in my small way. It's already hard enough for me to wake up every day and face the world without just ending my pain. Don't make me debate my sanity while I'm at it.
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 help based on our experiences. That is life. I have offered my (unsolicited) help and knowing my condition some people have also seemed my help. That is again life.
What you and I need are skills to move on if not interested, but blaming people for trying to help in a social setting is probably not the right way to look at it. Apologies for being blunt.
No, the actual issue here is that people don’t understand that they need to have enough empathy to be able to follow a logical sequence of steps before speaking:
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.
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...
Nope. He does not need to cool down. He needs people to realize when "trying to help" is not helping. When it's actually about appearing smart or appeasing one's anxieties or showboating or controlling or getting nice points.
If you think somebody might benefit from your advice, you could ask. "Hey, I have been through X, would my opinion be useful?" But before you do that, maybe think about the vast number of people who have already jumped in to offer unsolicited, unhelpful, and unwanted advice. And maybe just trust that if a person needs your advice, they'll ask you for it.
> I think you need to cool down.
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.
I'm not sure about 95% of doctors being incompetent. If nothing else they are much better trained than the average person offering advice.
I wouldn't say most doctors are incompetent, but I _would_ say that most are automatons working to a checklist which probably hasn't been updated since they left school. Patient reports symptoms A, B, C? Order tests X, Y, Z, prescribe drugs 1, 2 and 3.
Now that's probably appropriate for (say) 70% of patients. But what about the other 30% of patients whose symptoms or conditions don't fit squarely in the checklist? That's when some kind of analytical/critical diagnostic skills are needed, and in my experience, very few doctors possess these skills.
Once you're in uncharted waters, they're not helpful. In fact, they're often actively _unhelpful_ because they refuse to acknowledge that some things might be outside their expertise and they either need to actually hit the books, or do the work to find a specialist who _can_ help you.
Great comment, sums up exactly what the issue is without resorting to shortcuts like "incompetent" that are more likely to offend than convince (something I've certainly been guilty of in the past). At this point, for mild to moderate healthcare-system interactions, I go to doctor's appt with a pretty accurate sense of what prescription and/or advice I'm leaving with. I basically consider it a fee I need to pay in order to get the legally-required prescription or referral I already know I need.
I wouldn't go as far as the comment you're referencing, but the bar for incompetence at _human medicine_ should be infinitely higher than "the average person".
Trained to do what? Cure chronic disease?
Edit: instead of answering, a bunch of doctors downvoted this question.
This entire comment thread seems like Exhibit A in why banana_giraffe doesn’t usually tell other people.
What's wrong with beer?
Contains gliadin and glutenin which promote the release of zonulin which regulates the tight junction in the intestinal epithelium. Disregulated tight junctions can lead to autoimmune disease.
At least that's the theory.
https://www.mygenefood.com/blog/zonulin-leaky-gut/
Just so you know, you're effectively complaining that people care about you too much. People can't put themselves in your shoes, but they try, and when they see you having a beer, knowing it could be bad for you, they try to support you in keeping away from it.
I can see how it would get annoying. If you view it as love, instead of nagging, it might get a little less annoying.
That’s not “caring about you too much”. It’s not knowing what’s appropriate.
As someone who had to follow a strict diet for a while, I know for a fact that the people who stuck their nose into my allowed indulgences did not care about me nearly as much as the people who actually cared and knew I was capable of managing my own diet.
It's virtue signaling, not caring. It's pretending to care and expecting to get pats on the head for it while actually being a burden to someone whose life is already overburdened.
It's the opposite of actually caring about a person. It's caring about them making you feel good about going through superficial "caring" motions while doing absolutely no good and lots of terrible harm when it is added up over time for the person with a chronic condition whom absolutely everyone wants pats on the head from for pretending to care while doing not a damn thing to actually make their life better in some meaningful way.
If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.
> If people care, they do what actually helps you rather than insisting you make them feel good for superficial bullshit that only adds to your suffering.
This is a very simplistic way to look at people. A lot of people are misinformed or not thoughtful or don't fully understand your experience or frankly not that bright. The idea that people who genuinely care never do any damage is beyond ludicrous.
That's a ludicrous interpretation of my remark.
People who actually care will be okay with being told "This isn't helping. Please just stop." But that's not what the vast majority of people do.
The vast majority of people want it acknowledged that they are _good_ people because they _care_ about you and _are trying to help_ and all this shit.
If they cared, they would drop it when asked instead of doubling down on trying to demand that you make them feel like a good person for fucking with your life and trampling your boundaries.
I also have a serious condition. No, most people absolutely do not actually _care_ about my welfare.
I have tons of firsthand experience with this and I'm not budging one inch.
Yes, excessive body fat is known to cause sleep apnea. It's not the only cause.
I had to go through jaw surgery. It was worth it.
In that case it is modern medicine that is woo-woo since we had dietary treatments for serval things before we had medications for it, like for epilepsy.
Counter-point: the number of people with a sleep disorder who are determined to try every folk remedy they can get their hands on before seeing an actual doctor
While we're getting things off chests. I have a condition that's barely a condition; it causes minor, barely pain but it's always there. The problem for me is I am also pre-disposed to catastrophizing and that makes everything worse. My problem is as much (if not more) mental as it is physical. I've received help on both ends (for physical and mental health) but eight months of living with this discomfort and I can't help but think that it's forever, will never go away and in fact will get worse. I fear that the physical activities I love will disappear from life and that I won't be able to play with my kids.
Perhaps it's nothing more than future snakeoil but claims that humans will be able to CRISPR pain signals away in the not too distant future gives me hope. Opiates scare the living sh*t out of me.
I love Scott, I've followed and read him for a long time. From his involvement in the diabetes community and his glucose tracking projects, to advocating for .NET and MS, and just opening doors for others, it's clear he's a wonderful person.
From his posts, he's got an amazing family and I wish him and them all the best.
Sorry to hear this. Mind if I offer a meta-woo remedy?
There are communities out there who value deep and non-judgmental listening. They recognize that it can be an act of aggression to offer unwanted advice. They have a healthy interest in others and know when to yield when it's really not their business to know.
If you could find such a community, you might feel better. You might feel understood.
Most online support groups for medical conditions are terrible. I know a few principles that are constructive, but I don't know how to get traction with starting a community where people genuinely talk about useful information in a genuinely supportive fashion that's not invasive.
I'm agreeing with you, if that isn't apparent. This is a topic near and dear to my heart and I keep trying to figure it out and ...failing.
My Reddit has five members and no traffic, basically. I am stilling thinking on how one would position and promote such a thing.
(Edited for accuracy.)
Honestly, thanks for that.
The last community I joined ended poorly when I didn't, err, react well to the advice that I try going to church more.
I do need to work on my mental health side, and a community is a good way. I'll dig into that.
I'm in a fair bit of constant pain from Ehlers-Danlos syndrome, and what's helped me is finding support groups of the "life hacks" variety.
Everyone in the group has EDS or is a caretaker, so they "get" it. It's consent-oriented because people won't give you advice unless you post asking for it. It doesn't turn into a pity party because the forum is about asking questions and getting answers. The post history has everything from wheelchair tips to relocating joints. Direct medical advice is banned, only suggestions of what to ask doctors are allowed. It's nice.
Sometimes I really want somewhere I can scream into the void about my pain and degeneration though. I'm not sure of a psychologically-healthy way to scratch that itch.
EDS outright fucking sucks. I have EDS and Thoracic Outlet Syndrome likely caused by it. Also being treated for a recurring visualizable CSF leak.
Literally have to drive 3+ hours/fly for the majority of my major treatments so far.
Yup, I have TOS too. It's not too painful for me, but prevents me from lifting my arms for more than a minute or so. So far I've avoided most of the other common complications besides POTS and nerve stuff, and I've been managing okay with lots of PT and bracing.
Hang in there, I hope they can patch your leak!
Just in case you're not aware, a pretty cool dude named Dr. Ian Carroll has been finding that a fairly substantial amount of POTS cases in EDS end up being a CSF leak, even though sometimes quite miniscule and very hard to identify. Not to say that POTS and EDS aren't a thing though. Very much is.
I was initially thought to just be suffering from POTS by some pretty well respected docs at Cleveland Clinic, but there were some outlying symptoms that just didn't add up. Ended up getting to see Dr. Carroll at Stanford and Dr. Wouter Schievink at Cedars-Sinai and they were able to visualize a leak, still in the process of trying to get blood/glue injections to work until I get through TOS surgery. After that it may end up coming to surgery for CSF as well.
Also, I hate to sound pessimistic but just want to try to give advice - from what I've heard anecdotally, TOS will slowly progress, especially in those with EDS. The younger you have surgery, the better the outcome as well. I tried to stick it out with some pretty seriously targeted physical therapy and bracing until I was 20 but shit just kinda hit the fan and I've had to opt for surgery.
There are 5-10 surgeons in the U.S. that are at the point of having really great outcomes, most notably Dr. Dean Donahue at MGH. I waited like 9 months to initially consult with him. As much as I loathe Facebook, here are some great groups with regards to knowledge of good surgeons if you ever decide to pursue that route. A bad surgeon for TOS is definitely a bit of a death sentence.
https://m.facebook.com/groups/15231937182
https://m.facebook.com/groups/205345126171314
P.S., apparently there's been a good amount of POTS cases induced by COVID-19 and not responding well to treatment. Doctor at Cleveland Clinic mentioned it to me, said they were a bit dumbfounded. Will definitely be interesting to see how things play out long-term, will hopefully end up giving POTS some more awareness it deserves. Also, I have great hope in Neuralink for EDS pain in the future. Hopefully.
I occasionally limp due to a chronic condition. The last thing I want is any comments about it, because a few days later I might not. Unsolicited commentary is usually met with a sigh and a brush off, not telling the truth. The truth is I have built up defense mechanisms and anybody trying to point out my weaknesses can get a face full of their own by way of training watching Triumph the Insult Comic Dog.
"Mind your own business" is something that could use a little more respect now and then.
This is rather off topic, but your post reminded me of it. In Uni, there was a professor who had a very pronounced limp. Whenever I saw him around, it was the only thing about him I'd notice.
In the 3rd year, we had a class with him. After the second lecture, I had so gotten accustomed to him that if you had asked me who the professor with the limp was, I would have honestly replied that I didn't know any professors like that. The fact that I had gotten to talk to him and see him teachn so I knew more about him than justn "has a limp" probably played a part.
I guess I have no point to make with this anecdote, take from it what you will.
Just want to voice my support. I deal with that too, and it’s _almost_ as tiring as the pain some days.
Thank you for saying this. I've experienced the same thing. Like you, I seldom mention my chronic pain as a result. You're right, it's exhausting.
I try to remind myself that it's more about the other person's insecurities than my own pain, and I try to be gracious. Sometimes I still snap at people who don't take the hint.
Re the reactions to your pain, I think there is a belief deeply embedded in the American psyche that most any problem can be solved. And mentioning a difficult problem brings out this aspect.
In almost all cases, I like this quality and the underlying optimism it implies, but I also understand how it can be annoying and often come across as unconsciously insensitive.
Sometimes, expressions of sympathy are all that's needed or wanted.
What would you hope people do if you did tell them? My guess is "Damn that sounds awful. Let me know if I can help" and then dropping it entirely?
Pretty much. If you want to talk to me about what my symptoms are, and what I do to treat it, fine, I'm happy to discuss things most of the time, with the understanding that it's me telling you about my life experience, nothing more.
I know I'm coming off rude here, but the truth is, I don't want your advice on how to fix things, or worse, your advice that it's not as bad as I think it is, and that I can do whatever activity that I know will cause me problems tomorrow.
You're really not coming off as rude at all.
It's actually helpful. The bottom line is that I want to be supportive. And if I don't know how, I might make a guess at it and that guess might be the natural response of "try to help fix their problem."
It makes sense that you just don't want to hear that. I can empathize avec depression. Just listen to me and be patient with me. You can't fix this and it's kind of insulting that you try, as if I was too dumb to think up your idea.
(This also relates to software reviews too: I've spent a week on this problem. You suggesting I'm doing it wrong after five minutes of review can be really insulting)
> I know I'm coming off rude here
On the contrary, this is excellent advice! I know I feel a tendency to want to share my knowledge with friends and family because I think it may help. I should know better, because I do not like being given advice, and yet I have a lot of trouble avoiding giving it myself. When I try, I am accused of being aloof or uninterested. A hard line to walk, keeping my mouth shut is enough work all by itself ;-)
From my own chronic health issues, I think I just want pain to be seen and appreciated. Understand I need space/time to work on it. And whatever appropriate accommodations to be able to do my job.
My employer had me go through training that had this video as part of the curriculum. Though I already understood the ideas, the video was still useful for me. It's less than 3 minutes long.
https://www.youtube.com/watch?v=1Evwgu369Jw
In short, sometimes people need connection to others; problem-solving mode isn't always the most useful path.
My wife once said to me, "I don't need an engineer I need my husband." And it clicked. She doesn't want a fix. She just wants a hand to hold and for me to hear her frustrations.
I can tell already that I do this and I should stop. My wife just hasn't said it yet.
I just always default to problem solving....
Oh man, this was the case for my (former) sleep disorder. I appreciate the suggestions, but trust me, if you'd heard of it, it's something I'd tried a few years ago.
Hear, hear! Well put. That goes for small things like colds, too, which despite science everyone seems to have a cure for.
People do the same stuff with my vision loss. I have usher's syndrome, it's not curable right now but everyone has some answer for me. Of course I don't want to go blind, so yes, I have researched options and studies, thank you.
The main thread is that people that tell you about their pains just want you to hear them, not solve their problems. They want empathy by being a good listener and just acknowledge with empathy
When I tell people I'm in pain (or similar), I'm usually trying to convey "Hey, sorry I am not at my best. I'm not trying to be rude. I'm not trying to bark at you. If I'm failing to get all the info, it's not for lack of trying or being too lazy or disrespectful to pay attention. I'm just doing the best I can right now and the best I can isn't that great."
And that's usually not how it gets interpreted so I do a lot less of that than I used to do.
Good luck. I hope things take a turn for the better.
I have to admit, one of my thoughts was 'Is there anything I can recommend'.
I get that. I'm like that too. If I see a problem, I want desperately to try and help fix it.
This has absolutely taught me that sometimes the best answer is "Wow, that really sucks. If you want to talk about it, let me know" and move on to some other subject.
I am very, very familiar with this exact feeling. Hopefully at least those who are close to you understand this a little better and support in better ways.
I am exactly the same way. When people ask, I just say "I'm doing ok." and that is usually the end of the asking.
Ah, people are just trying to relate and help. I get that it's frustrating, though.
Care by simply expressing someone wasn’t in pain is enough. No need to try to be the fixer.
Right, right. Just explaining. Not justifying.
And it’s not always wrong to try to help like that. But just want to give people another option.
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 actual human being who maybe actually had your problem and found something useful to help with it.
I think if I were you, I would reconsider how you view these situations.
You just saw somebody saying they've had too much advice, too many opinions from strangers on how to handle situations those strangers know nothing about. What made you think the best response was to assume you understand their situation and offer them advice?
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 figures (licensed doctors) over information from someone who is actually in the same boat as you, which seems foolish to me. Certainly un-hacker-like.
By the way, if you look at actual studies, results of surgery done for pain are not very encouraging -- less than half result in pain actually going away.
At the risk of being a jerk: Have you read the book The Mindbody Prescription by Dr. Sarno? [1]
I sound like an infomercial pitchman but that book changed my life. I had a massive structural issue that was either going mean a knee replacement or dealing with "you won't walk right ever again". Well, it turns out there was a third option.
[1]
https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...
It sounds woo, I know. I was so fucking tired of people giving me their quack advice too. This was the one thing that made sense. And it literally changed my life.
I’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 retirement.
I had a bad day yesterday; out taking care of errands to leave and everything flared. Sometimes there’s no discernible reason. It damned near floored me, but since I don’t have a vehicle I had to walk the couple kilometers back. It’s hard to describe how much ongoing pain changes who you are. It’s a constant struggle to not be an asshole because DAMNIT JUST LEAVE ME ALONE. It’s overwhelming and demoralizing. That’s before we get to the questions of what can you still do to make ends meet.
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.
"A healthy man wants a thousand things, a sick man only wants one."
I absolutely agree.
The positive I take away from it is that I DO appreciate the good days, and my family, and the life I have more. It sounds trite, but the silver lining is there.
I am also dealing with a at least one autoimmune condition (TBD what exactly is the full story) that causes chronic pain and is seriously damaging my career. I suspect I'm not in as bad a way as you, but know that you're not alone. Sending good thoughts. One day at a time; hoping for more good days than bad for you.
I started Taltz to deal with my psoriasis, and found out what I had thought was something else turned out to probably be psoriatic arthritis, because the pain definitely went down after starting it.
It isn't a cure, but perhaps you might find some relief there if you haven't tried it.
> It’s hard to describe how much ongoing pain changes who you are
This is definitely true. I spent years getting back to being myself, I hope you find your way as well.
Part of the reason they are transferring me is so they have the freedom to try some of the immune suppressing drugs. Being deployed overseas means they can't.
I'm terrified, but hoping something will help.
Ah, i had forgotten about the being deployed bit. Being on taltz does mean having to take a tuberculosis test every 6 months, so I imagine that would be rough.
One suggestion is to not be pressured into a biologic before you do some research on incidence rates of side effects. Newer ones seem to be WAY safer than even those that came out a few years ago, but the insurance companies don't seem to care.
In fact, it isn't covered at all for me, but the manufacturers have a card you sign up for that lets you get it for $25 (or reduces your copay to $5 if you have a deductible).
I'm not sure what access to this stuff is like overseas or through VA, so I am curious and hope it pans out well!
Just wanted to send you good thoughts. Stay strong. Rooting for you!
Thanks! Positive support with no expectation that I listen to a miracle cure or something is one of those things that really helps on rough days!
Sorry to hear about that. Sending you positive thoughts, I hope it gets better.
Thanks! Positive support with no expectation that I listen to a miracle cure or something is one of those things that really helps on rough days!
A few years ago I fell and broke my elbow. It was a mess and had to have emergency surgery to put it all back together. After surgery I'm sent home with a "ball" around my neck that is a reservoir for some pain meds that are being fed into my body via a catheter that was threaded into a vein in my neck. So I am sitting on my recliner a few hours after the surgery , awake but groggy. Anesthesiologist calls me on my cell phone to check in on me. So the pain med ball has a valve on it calibrated from 1 to 10. It's on like 9. He asks me how the pain level is. I say "no pain". He say's "great, what's the setting our your valve" I say 9. He says "whoa! you need to turn that down! At that level it will be used up in about 10 hours and you need it last for at least 48 hours" I say "okay." He then hangs up. So being a groggy engineer, I think "okay, I will dial it down to like 2 and then as pain arrives adjust up to needed level" So I turn it down to 2. About 45 minutes later I am in the most excruciating pain I have ever experienced. Think teeth clenching. Sweating. Tears. I immediately turn the dial up to 10. The pain lasted for 2 hours. I'm an atheist, but let me tell you I was coming to Jesus in those two hours. Once the pain subsided, I call him back. He says "Oh yeah, you should have slowly backed down on the dial." Upside is that I have a lot of empathy for folks who say they are in pain. Seriously, if that pain had continued I would have taken anything, Heroin, whatever!!!
It's amazing what doctors don't think to explain. Like, buddy, I know you've seen this a million times before, but _trust me_ this is the first time I've ever done this...
A 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 results using kratom in a severe pain situation, but that's anecdotal and not quite analogous to his condition.
Wishing you the best, Mr. Hanselman!
That's amazing. I've followed Scott for about 10 years and he's always seemed like an incredibly compassionate person. I'm really hoping his PT starts working and he's able to recover soon.
That is a lovely story. He does come across as a genuinely good guy.
Yeah, he's great!
We needed just a couple insulin reservoirs for a Medtronic pump and he brought a bunch of them, and quite a few blood glucose strips (which can be ridiculously expensive), and gave us a little demonstration about a closed-loop "artificial pancreas" system based on open source software and relatively cheap hardware. I'd definitely never have heard about Tidepool or OpenAPS if it weren't for his visit.
I'm going through other pancreatic issues ([idiopathic/undefined] acute pancreatitis resulting in several necrotic masses and another(s?) unidentified nodes)— would you be so kind as to share some of your info? Are the two items you mentioned the projects?
I'm hoping diabetes (or worse) isn't in my future, but you never know. Doctors don't have as much time lately due to Covid either to spend time with me on it until next year. In the interim it's just pain management...
edit: I had a look. I guess those have more to do with insulin management than a wholistic pancreas... really interesting nonetheless! This is the kind of effort that amazes me with regard to what we're really capable of with technology. Well if any one else knows of anything of a wider scope...
My partner hasn't actually implemented any external pancreas programs for a few personal reasons, I mostly bring it up because it's something that's solidly in the "goals" column and we're both excited about the possibilities in the future. (And it is very much the future as far as I can tell)
Yes, Tidepool and OpenAPS are both generally focused on insulin management, so if you're looking for something that involves glucagon-like things I've got no idea.
Honestly, Scott Hanselman is the guy I'd ask.
"A healthy man wants a thousand things, a sick man only wants one".
There are so many forms of illness where this is true. I've never experienced anything nearly as persistent and painful as frozen shoulder.
The worst thing I've experienced was probably Sciatica as a teen. It was particularly frustrating since the pain was intermittent and invisible to others. Through fairly substantial lifestyle changes, I haven't had issues in more than a decade.
I hope everyone in this thread (and the author) is able to become well enough to return to their lives.
I had severe sciatica from ages 25-30 and it was like another lifetime. I don’t know where it came from or where it went, but that was a remarkably worse period of my life.
Reflecting on it I wish I wasn’t dragged down so much. But in all honesty I think I’d handle it even worse now. It was agonizing at times. I remember laying on the floor squirming in pain, no idea what to do. Hours of it. Thinking about it makes me a little anxious. I should be more grateful that I’m healthy again.
I am struggling with sciatica related to my SI joint right now. It's not nearly as excruciating as most of the other posts but it has rendered me unable to work at all. Am not able to sit for more than an hour before the pain is too much. Lying down is only slightly better. It's been quite some time since I have been able to get a good night's sleep without having to wake up with the pain buliding up slowly.
More than the pain, it's the fact that I'm prevented from being able to work on my computer that frustrates me so much. After a point the boredom becomes worse than the pain.
While am not seeking medical advice from someone on the internet, I'd love to know what you did to get "healthy again".
Someone I know is dealing with sciatica now and it's not going well, do you have any insights on what helped you?
I had disabling sciatica for a year and I thought a break from work would do me good; perhaps 3 months of exercise, no slouching over a computer, no deadlines, etc. would improve the situation. Nothing worked. In desperation, I consulted many, many specialists, even chiropractors, but nope, no change.
Alas, I had banked on _something_ changing in 3 months, so I had planned a walking holiday in Western Ireland (Dingle) before rejoining work. I wasn't prepared to cancel the tickets, so I went anyway. I took along a plywood board to help me sit angled on the seat to avoid having to sit at right angles!
Started the walk on The Dingle Way in a dubious frame of mind. I knew I was doing it only because I was too cheap to cancel tickets. Then magic happened. The place is so exquisitely beautiful that I walked 25 kms on the first day, even sharing a backpack with my wife. That evening, everything was hurting, but not in the usual places I had been conditioned to expect. The sciatica was GONE! I couldn't believe it, but it didn't recur the next morning. It has been 20 years now.
It is possible mine was a simple case that just required a structural realignment. But I had tried walking before, and many other strategies to improve posture etc. In hindsight, the only difference is that my brain in Ireland was fully engaged in the beauty of the place and people, and disengaged from the pain. Perhaps exercising my back without being focused on a cure is what worked.
Who knows? Perhaps this anecdote is of some value to your friend.
Thank you, Ireland!
My situation was unusual, so I'm not sure my solutions would generalize. Sciatica in teens is very unusual. The cause, likely, was a series of fairly involved surgeries I had had as a young child combined with overuse. None of the orthopedists I saw were particularly sure about the cause, nor were the physical therapists.
The long term solution was to avoid triggers and increase core strength. The short term solution was NSAIDs and correcting sleep posture (getting an 8-9 hour reprieve from loading the muscles that spasm remains very helpful).
Long-distance running was a trigger for me (particularly running slowly, oddly enough), so I haven't run in basically a decade. I used to run 5 days a week. It was pretty clearly part of my identity.
Years later, I picked up rock climbing (2-3 days a week) and my problems incidentally went away. Whenever I stop climbing for a while, I get periodic minor flare-ups. Fortunately, the short term fixes can nip this in the bud, particularly if I start exercising again.
I don't know the details of their situation, but I would encourage them to seek out a physical therapist. And to change therapists if it doesn't work. It took me a while to find someone that could actually help. I have no idea why the first therapists did not suggest improving sleep posture.
About ten years ago I had around 9 months (maybe a little more) of chronic testicular pain. It felt like someone had kicked me in the crotch about 10 minutes ago, all day every day. I've been in more pain from some injuries I've had (bike accident), but this lasted for much, much longer.
It also made sleeping difficult, as for some reason lying down was extremely uncomfortable. I ended up sleeping in a chair for several months.
I ended up cancelling a conference visit and talks just because I felt so awful and I wasn't even sure I could sleep in a hotel away from home.
One thing I look back on and realize now is that it really changed my behavior. My temper was shorter and my judgement about how to interact with others was much poorer.
Fortunately, it eventually resolved itself. I used to have flareups for a week or two every few months, then for a few days less often, and now it's been a few years since I've felt it.
All of which is to say I feel for the author. This sort of thing sucks. For anyone else who's experienced any sort of similar pain, I would encourage you to continue looking for solutions. If you can, enlist family or friends to help you do so.
I think that after a while you forget what it feels to be pain free, and it becomes easier to accept your current state. But once my pain resolved itself I realized how much of a difference it made in my life.
Another person with orchialgia here, it sucks. Mine's been on and off for almost 20 months now. After three urologists I found something that worked (and it's like a miracle).
Something you touch on here implicitly is how much it changes little things in your life. For me it was long commutes, I can't sit for extended periods of time.
What I would add is that doctors can be great for things they recognize and can treat. With something like chronic pain that can manifest due to numerous causes and doesn't outright kill you, doctors can be very unhelpful. It took a really bad bout of pain to see a new urologist who diagnosed it as a damaged nerve and prescribed a device that works.
Not everyone is the same, but my experience led me to believe that if you suffer from chronic pain you just have to keep shuffling specialists until you find someone that's read different research than the others that works.
Yeah, regarding doctors I'm not sure anything they suggested help. The first one I saw that it was an infection and gave me antibiotics. That didn't seem to do much.
Then as it persisted another urologist thought it might be urine backflowing down my vas deferens and I took beta blockers to improve my urinary flow.
Finally the urologist basically said that sometimes after you have an infection you can have idiopathic pain for a long time afterwards.
And maybe that was it. It pretty much went away on its own. I feel quite fortunate for that, because it really sucked. If it had persisted I suspect I would've seen quite a few more urologists!
I had a similar problem, no urologist could tell me anything meaningful. After some time and a gigantic load of stress, I randomly stumbled upon a guy who had the exact same problem as mine. He did a shit ton of analysis, tests and scans. In his case, it ended up being a pain coming from a herniated disc. Coincidentally, he had the exact same disc being herniated as mine - L5S1. Once he told me about that, it all clicked for me, as I usually had pain sitting in a weird position. My brain just couldn’t identify the origin of the pain, and I thought it’s coming from my balls.
Given that it resolved itself on its own, I'd assume that wasn't the case for me. But it's very interesting how referred pain can be so confusing!
I had something like this that landed me in the ER. I got a diagnosis of deferred kidney stone pain at the time. I too was all about which way to sit in a chair. I can't imagine that going on for weeks.
What worked?
No joke, a vibrator applied to the inguinal area. It's a little uncomfortable and probably has a hefty dose of placebo effect but I'm told it's like a reset button for the way the brain interprets pain from the damaged nerve. Like sending it garbage data to trick it into clearing its cache.
Self reply to add an addendum ... I almost forgot the follow up.
I've also experienced weird GI pain with no cause and reflux without any indication of reflux (throat looks fine, swallowing is fine, etc.).
For the GI pain, my GP prescribed a relatively low dose (20mg) of Amitrypyline, which is an old anti-depressant. Later, the GI specialist I saw recommended I double this to 40mg.
Apparently it's good in treating idiopathic pain like mine, and I it may have helped me. It's really hard to say because a lot of my pain issues have occurred on and off over long periods of time. So maybe the improvement is just a natural resolution of some underlying issue, or maybe it's the medication.
The theoretical mechanism of the drug is that when taken before bed it helps you sleep more deeply, and during good quality sleep your body is better able to repair itself.
Absent any reason not to, I'll just keep taking it.
You're describing exactly what I went through! Two rounds of antibiotics, pain meds. Finally gabapentin was the only thing that worked and now I'm slowly weening myself off of it. It's been hell. I had to sleep on the couch elevated. I could barely walk. Everything looked fine down there physically, two ultrasounds, MRI, nothing looked odd. I'm really hoping it never comes back because it was like either someone was squeezing it off and on or someone replaced the boys with pine cones. The pain was just so bad I wanted to get rid of them. Thank god for the lock down because I was working from home during this. I probably would have lost my job or something had I had to go to the office.
Yeah, I did consider some surgeries like an epidydymectomy (the doctors though that was where my pain was coming from). Fortunately it did slowly resolve itself and I didn't have to do that.
I hope your pain resolves itself soon. It just sucks so much to have to deal with this.
That sounds horrific. Did you ever find out what the cause was?
See my other comment here -
https://news.ycombinator.com/item?id=24948175
The only thing that made sense was that an initial infection triggered idiopathic pain long after the infection was gone.
I don't have extreme physical pain, but I do have chronic pain in the form of a constant, low-to-medium grade headache that sometimes turns into a crippling migraine-like pain for a few days. It flares with weather changes and stress, but on a 1-10 pain scale it's a 3-4 every day of the week 24/7. At times it surges to a 7-10. There is nothing modern medicine can do for me but turn my consciousness off -- which I refuse to accept.
I've learned to tune it out, but the fatigue it creates is sometimes overwhelming and I find myself crashing frequently on whatever surface I can find to rest on. I struggle mightily in the mornings to make it to work.
When I was in my teens I was part of an NIH study into chronic headaches, but doctors in general waive it away or don't know what to do about it. Constant back and neck stretches and 800mg of Ibuprofen daily seem to be the only things that alleviate it somewhat, bringing the average from a 4 out of 10 to a 3 out of 10.
Strangely, the first time I went headache free in my adult life was a week-long period in the Bay Area when I was interviewing for a few jobs. The headaches went away for a few glorious days I felt what it felt like to be "me", unencumbered by chronic pain for the first time in my adult life. It was absolutely glorious. I sometimes wakeup, in soaked sheets, sweating about the bizarreness of dreaming about that week. I once had a root canal without anesthetic, because it wouldn't take effect -- tuned it out -- I have nightmares still from the experience.
But I didn't get the jobs, I live on the East Coast, and despite a strange semi-immunity to anesthetic, probably a result of the same condition and genetics (I can get a cavity filled by using the same "tune it out" mental skills I learned dealing with absolutely disabling head pain) without fighting over if the anesthetic is working or not. Most dentists have no idea why the novocain isn't working.
My mother has an unspecified autoimmune disease that causes her global minor joint pain. Whatever she has, I'm sure I inherited it. Medical practitioners are universally unable to do anything at all about it. I sometimes drink too much so I can sleep once or twice a week despite (to spite) the pain.
It sucks and I hate it and I wish I had gotten those jobs in SV even if it meant I had one week a year, pain free. But now COVID-19 so....
Only posting this in case it helps anyone else. I am aware it is a single point of data in my case but it is backed by research and accepted medical advice (
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3412202/
). I had severe chronic pain from herniated disc that was not a perfect candidate for immediate surgery.
My GP prescribed Cymbalta (
https://www.cochrane.org/CD007115/NEUROMUSC_duloxetine-treat...
) and I was surprised to find out that the depression med actually is known to help with chronic pain.
It took a few days/weeks to really kick in but it absolutely worked for me. What it did was dissociate my conscious self from my in-pain self. I was always aware that my body was in pain but frankly it didn’t bother me.
This allowed my body the time to properly heal itself without me consciously trying to adjust my position and movement to minimize pain. After about 9 months, I got off the meds, completely pain free. Cymbalta does have a ton of side effects and I experienced a number of them, especially when tapering off. However it was all worth it to get rid of the literal pain in my neck. Sounds like a parody to say “Ask your doctor about Cymbalta” but honestly if you are in chronic pain, don’t want to be addicted to opioids, have tried every rational thing but this, it is not a woo crystal oil gimmick. It is a risk that may be worthwhile to you.
When I'm done yelling, I'm trying to sit quietly and meditate about this pain. What is it trying to tell me? Can I mentally follow the nerve from the location (referred pain or otherwise) to my brain and determine what the body wants me to know? Am I being told there's danger?
For many chronic pain conditions this is a vital step, and that acceptance can be a huge boost, allowing you to get through a day.
Unfortunately for many of us... It isn't. I'm in pain now, chronic and debilitating, but there's no known cause. There's no message my body is trying to send other than the equivalent of every light on the dashboard turning on. Something is malfunctioning, so the body is misbehaving, and I'm in agony.
Every moment, of every day, for the last fifteen years, the pain is there are increasing. As you learn to tolerate the pain, the body learns to increase the signal because it thinks there's something that needs to be addressed... But there's not.
Sometimes... There's simply no escape. And learning to live with that is a harder truth.
I 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 particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense.
I am definitely sympathetic to people with chronic pain, because i know first-hand the extent to which it changes your personality, stress and anxiety tolerance, cognitive ability and focus.
You are not alone. It sucks, big time, but you are not alone.
> 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. There are specific diagnostic criteria.
For testing, we have things like the FM/a blood test (since 2012), and for diagnosis you need to fulfill "The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" (2010), or similar.
FM also falls into four categories:
+ Extreme sensitivity to pain but no associated psychiatric conditions (usually treated by attempting to de-sensitise the nervous system)
+ Fibromyalgia and comorbid, pain-related depression (usually treated as the above, whilst also utilising an anti-depression regime)
+ Depression with concomitant fibromyalgia syndrome (usually treated as the above)
+ Fibromyalgia due to somatization (usually treated with psychotherapy)
The fourth category is sort of what everyone assumes the entire illness is like, at least in my experience. It also happens to be the least common form of the illness since we began standardised diagnosis.
---
I fall into the first category. I am not intending to provide any advice whatsoever, because that's one of the most infuriating things about living with the illness. I've been learning to deal with this for half my life, the person talking to me may be frustrated and want to help... But the chances of you coming up with anything I'm not aware of are practically zero. And an insult to my intelligence and determination.
However, fibromyalgia shouldn't get the stigma of being the "random disease" anymore. It isn't. Unless you fall into the fourth category, there are neural structures unique to sufferers, and blood markers that are unique to sufferers. This is a condition, not a wastepaper basket for people that are just too hard to diagnose.
The illness can already ruin you, don't let the stigma burn you as well.
It sounds like the FM/a test is still experimental- at least in the sense that abnormally low levels of cytokenes are a potential indicator of FM.
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!)
> or that it is all in my head
I sometimes end up wondering that about myself. I have near-constant headaches of varying intensity (ranging from a barely noticeable ache to feeling like somebody a vice round my temples) with no known cause, and I occasionally find myself asking if I'm imagining it or it's psychosomatic. I think it stems from my frustration at not knowing the cause, but starting to doubt what you are sensing like that is an unpleasant feeling.
Well, if it makes you feel any better, being psychosomatic doesn't mean it's not "real", it just means that there's an extra step in the causality. Like psychosomatic itching - you are genuinely feeling the irritation, it's not imaginary, but you can retrain yourself not to indulge to fix it. The same thing is true with other psychosomatic illness.
Many people act like psychosomatic illness is in the same category as malingering, delusion, or antisocial behavior. It's not. It's a real thing that you're really experiencing, not some kind of moral failing, it just happens to have a root in neurology and psychology instead of a different causative origin. Is a headache any less real or painful just because it's caused by stress instead of a hangover? I would say no, if anything, the opposite.
Same goes for psychosomatic nausea, high blood pressure, eczema, psoriasis, pain, dizziness, any of at least a dozen things. They're real things you're experiencing, that might have more to do with mental health than physical health, depending on the exact situation. But they're still all real - nobody with high blood pressure from somatic issues is imagining their numbers higher.
So, trust yourself. What you're feeling is genuine, regardless of the source - the fact that that source might be on one or the other side of the extremely fuzzy line of "mind versus body" is no reason to question your own experience.
Hello, Scott Hanselman.
Thank you for writing this. It has fostered some good discussion on HN on a very difficult topic that usually goes poorly, so you must have done something right.
I hope you get well soon, even if it takes some kind of miracle (in the sense of "wondrous happening," not necessarily in the sense of "intervention from god" if that second thing isn't your cup of tea). Sometimes people do get medical/health miracles.
All my best,
Some Random Internet Stranger named _Doreen_.
Fuck. 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 now. The residual pain is a reminder that I don't have time for nonsense anymore. A pain in the arm is enough, I don't need a pain in the ass also.
I'm also viciously dismissive now of any legislation or practices that limit controlled substances. I'm not an addict and I shouldn't be punished for other peoples acts.
> I'm also viciously dismissive now of any legislation or practices that limit controlled substances. I'm not an addict and I shouldn't be punished for other peoples acts.
I find myself agreeing with this. Opiate overuse and addiction is certainly a problem, but I also question some of the negativity I see regarding their use (from a UK perspective). I was on tramadol (200mg/day) for about six months, and was told, by my consultant, that coming off them "will be worse than quitting heroin". I just stopped taking them, and saw no ill effects. I've twice been on codeine (240mg/day) for around 8-12 months, and was given similar, albeit less severe, warnings about withdrawal. In both cases, there were no side effects upon stopping. I have to wonder if such warnings make withdrawal symptoms more likely through the nocebo effect[1].
They certainly have been misused in many ways, but they also have their place and make long-term pain much easier to deal with.
[1]
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3352765/
I've also been similarly able to cold turkey quit opiates taken for chronic pain. I know from listening to medical call-in shows that depending on the dose and frequency, that can be a very bad idea. I feel like there must also be some kind of other variable that factors into whether or not you'll experience adverse effects, or otherwise our experiences wouldn't be possible.
If it's a real concern then managing coming off the pills should really be part of the treatment. Don't just leave people to wing it. Did they offer that to you?
I've had unexplained knee pain for almost a decade. I've done everything people recommend, stretches, PT, rolfing (which is great to be honest) etc. I was and am currently in great shape and stretch for 30-60 minutes a day. The only thing I've ever found to work for bad days is over the counter 8mg Codeine tablets you can get in Canada. I can't get them in the US or even for a doctor to consider it, they're terrified of prescribing pain medicine. Because of Covid I haven't been able to go to Canada for a while and I'm worried what will happen in the next few months. The over reaction to opioid abuse and other people abusing the system has really punished people with chronic pain. I have friends who have been on opioids of pain management, veterans, getting cut off cold turkey by their physicians.
I need azulfidine (sulfasalazine, salazopyrine) to control my arthritis flare ups. It suddenly disappeared from pharmacies due to messed up logistics of precursors. It really made me aware of how totally dependent I am on this product of complex globalized industry and how if it was a fun or addictive recreational drug someone would have come up with a way to cook it in your backyard
Sometimes it ends up being over a decade and more than half your life when you're not even in your mid 20's yet because U.S. healthcare accessibility is fucking garbage, especially for those with abusive domestic situations.
I started getting cluster headaches a couple of years ago. The level of pain that they inflict completely changed my pain scale.
I started doing something that I read in a fiction book series (The Dresden Files) - basically a little visualization that helps me compartmentalize the pain. It helps a ton, though the fact that the attacks are relatively short probably help in that regard as it takes a lot of concentration.
The reason I bring that all up is that people tend to discount what they can do about a problem, mentally. You’re not going to get rid of the pain, but you might be able to work out a way to deal with it better.
I saw the title of the article, read it, and came back to the comments to find fellow clusterheads.
Wishing you pain free days!
The author of this article is in far more pain than I have ever experienced. I will, however, try to pitch in because I have had chronic intestinal issues and I've found a few hacks to make it feel better.
For me it helps to consider how many people have had it worse. It's cynical, I know, but knowing that diarrhea killed more people than guns in the USA civil war is comforting. The Union soldier who died squatting over a pit while cannons boom and flies descend makes me remember how comfortable my climate-controlled bathroom is.
Another thing I've learned is to not feel guilty when I've abandoned whatever I was up to before the pain started. I'm lucky to have a partner who is very forgiving when we are traveling or doing leisure activities and I have to rush to the nearest bathroom. It's not your fault that you're not doing what you were supposed to be doing. Don't hesitate to curse your maladies for interrupting your life. It feels good to stick it to the man, even when the man is your own digestive system.
I had pretty extensive shoulder repair surgery a year and a half ago. I was amazed at how much recovery hurt, and I can't take opioids (too many physical and mental side effects).
I ended up smoking a ton of weed. It really helped __so much__.
The funny part was going from an occasional recreational smoker to using it medicinally. At first I was like, it's 7 in the morning, I don't want to get stoned, this sucks. But it worked at managing pain. I was not in pain and I could rest; I could rest so I could heal.
End result was anger and frustration at our stupid drug laws, mostly. But also, my shoulder works again, and I know how to manage pain, if anything happens again.
Weird thing that I've observed. I'd never suggest it. I've met several masochists (the m in bdsm) who live with chronic pain and participate in the kink community because, as far as I can understand, it's a way to reframe the chronic pain that they experience. Or maybe, it's like getting out of a boiling hot car into the relative cool of a blazing summer day. The people I've met under these circumstances have had extreme pain tolerance, to the point where their sadists tread a fine line of giving them enough without doing damage. I know that many masochists experience (and seek) a significant endorphin response, and I've long wondered if exercising that somehow increases their endorphin production capacity -- and if that would provide an enduring benefit to those who live with chronic pain.
I know exactly where he is right now.
I broke my clavicle and had it plated back together. It was only for 8 months until I had the hardware removed, but it was constant, jaw clenching, phone-ringing-in-the-ears white-out pain that lasted for months.
There's no position in you can sit in to relieve it. You can't move or adjust to make it go away, even for a minute (there were a few times it went away, but very few). It's not like when you cut yourself doing something dumb and the initial pain subsides. This pain just. kept. going. Initially I was on Dilaudid, and then morphine, but the constipation was awful, and mental disassociation and hallucinations were scary. I started Oxy, but was scared of addiction so I didn't take it as often. I just kept popping Ibuprofin like candy. I even meditated, but it didn't do much because it's hard to learn something like that on-demand.
The pain finally went away after the hardware removal. But you know what? I have a persistant fear of being like that again. I can't imagine what I would do if it was every day and there was no known source like OP.
I am also recovering from a frozen shoulder, but thankfully it was not nearly as bad as the author. This is also my second time having it. Both times have required months of PT, mostly stretching and some strength training.
As for the pain during PT, I found it helpful to talk to the physical therapist, which distracted my mind from lower-level pain. When the pain increased, I’d temporarily stop talking and free my mind of thoughts, trying to reach a near-meditative state. I’d let the pain come and go, like clouds in the sky. Some days that was easier than others. Perhaps it helped that I had already learned some meditative techniques years ago.
How do you recover from this? Isn’t this a genetic disease?
Unknown.
Most common in post menopausal women with an autoimmune disorder such as diabetes or thyroid problem. i.e. not me but I got it anyway.
You "recover" when your body stops recognizing the soft tissue around your shoulder as the enemy and it has a chance to heal. For most it takes 9-18 months (per shoulder) and stops when it does regardless of physical therapy. The one thing that seems to help is a cortisone shot _early_ which seems to knock about three months off the the disease's course. Shots later do not have the same effect.
Logically it is an auto immune response, to what I have no clue. Starts like any strain you don't quite remember how you got and just keeps getting worse.
If you get it in one shoulder you are very likely to get it in the other. But you are more likely to recognize it early and get that cortisone shot.
In my case, the recovery required physical therapy. My shoulders have also improved somewhat on their own over time. From what I’ve read, it’s not genetic. My shoulder injuries were each caused by a specific physical event, and then gradual loss of range occurred along with increasing pain.
Thank you Hanselman for saying this and sharing this. “Not everything is code.”
I work with cannabis and CBD/CBG/CBN/CBDV/CBN-D.
I understand that others view may be that this has been marketed to death (in some very MLM-esque ways).
These products either help you or they don't. Some people with ocular pressure disorders can see large improvements to quality of life (vision) by using crude oil CBD. Nerve damaged individuals sometimes see relief with CBG. People with chronic sleep disorders can sometimes find relief with CBN / D9THC combos, while still others utilize D9 THC by itself to stimulate appetite, and still others may use products that contain D9 THC / THCV combinations to lose weight.
I just wanted to state that most of the stuff regarding everyone and their brother using CBD products to relax and have reduced anxiety is bullshit lifestyle business snake-oil, but those same products can immensely help a small fraction of the population struggling with life-altering pain management issues. Please don't discount the above cannabinoids when searching for solutions.
Thanks. I have some minor nerve pain that sometimes flares up to moderate nerve pain, and another issue that makes taking NSAIDs contra-indicated (so I just grin-and-bear-it). I’ll look into this as a possible backup solution.
oh my. yes.
first it will end.
Get full range of motion back? maybe not,
but more than enough how much it will not hurt.
Biggest thing I wished they mentioned is that constant pointless pain changes your brain in
ways it is difficult to see from inside.
Consider mitigating that earlier.
If anyone is still tolerating you at home or work
tell them I promise that you they knew will be back someday soon. (but no hugs)
In the bright side once it has run its course through both shoulders you will never have to worry about getting it again.
Wow. Not chronic pain, but I've dealt with chronic debilitating lack of sleep (brought on by a strong urge to urinate all night). I got to some places of really deep despair with feeling complete exhaustion but no ability to sleep for any substantial period of time.
It took a while before I found some things that worked between sleep doctors, urologist, physical therapists, primary doctors etc. It was particularly frustrating because frequent urination was seen as a kind of low-level thing. Still it was causing great difficulty where I could barely keep functioning.
Ultimately, what ended up mattering was (1) enlisting family to help advocate for me to my doctors (2) getting 2nd and 3rd opinions (3) being persistent and continuing to try new things, not being stuck with one doctors opinion
I got the impression that unless you/someone is advocating for you strongly and working actively to solve the problem, continuing to keep going back to the same doctor over and over and trying to give them the benefit of the doubt doesn't work.
Frozen shoulder is no joke. I didn’t see the domain name when I clicked on the heading. I have dealt with frozen shoulder off and on for about 2 years. Fortunately I think I’m on the downside of the pain but it can be a mind####. I was otherwise healthy but I couldn’t raise my right arm over my shoulder. It can cause a spin out of worry which I’m sure makes it worse. Thanks Scott for sharing your story.
Funny how you don't think about pain and how debilitating it can be until you experience it. I had some kind of bizarre arthritis in my ankle at the beginning of the year. First they said it was gout. When gout remedies didn't help, they took a fluid sample. Not gout, not rheumatoid arthritis, not another kind of arthritis. Basically they were stumped. Luckily it went away after about a month. But it was utterly debilitating while I had it. No good sleep angle, couldn't walk, couldn't get it off my mind. Changed my life.
Sympathies for everyone out there dealing with ongoing pain.
I suffer from a chronic autoimmune condition that causes left-side chest pain (sometimes quite severe). Despite _extensive_ medical workup, we have not been able to get it to go away.
One thing you don't hear about very much: more than a full third of people with atypical chest pain develop anxiety or panic disorders. I did.
I thought people could get used to anything, but years later, I am not used to it. Bodies suck.
Scott was a huge inspiration for me when I was a .net developer. I've recently become reacquainted with his work and his youtube computer explainers are great. Its sad to see him debilitated like this.
I had chronic, severe, debilitating pain for years until I read the book: The Mindbody Prescription by Dr. Sarno [1]
Someone on HN suggested it in a "carpal tunnel" thread. I didn't have carpal tunnel. I had a completely destroyed knee. No more cartilage. Bone on bone with every step I took (confirmed by MRI). Cortisone didn't make a bit of difference. I couldn't walk 20 feet without mind boggling pain.
That book changed my life. I can walk 10 miles (mostly) pain free now. I still don't have any cartilage. I never had surgery or did PT. The book explains it all, but the TLDR is that it's the brain that's causing the issue. You can have incredible structural issues. Herniated discs in the back. Zero cartilage in the knee. And the reason you feel pain isn't the structural issue, but your brain's response to it.
I wager that book would be life changing for 90 percent of chronic pain sufferers if they gave it a chance.
(Yeah, a lot of people are going to chime in and say that their pain is different or an MRI confirmed their structural issue or whatever. Yeah, I get it. I was there too. Frozen shoulder is almost certainly a manifestation of TMS, at least for some large number of people. For those who understand the mechanism, it's clear that 2020 is going to be a bad year for people in terms of chronic pain. It doesn't need to be.)
[1]
https://www.amazon.com/dp/B00FOTRPJQ/ref=dp-kindle-redirect?...
Thank you for sharing. I've recommended Sarno a few times on HN and always wrestle with the guilt of offering unsolicited advice. But I figure if it helps even saves just one or two people from months/years/decades of pain, it's worth it.
My left knee occasionally locks up and if the little dance I perfected over the years to unlock it doesn't work, I have to straighten my leg with one swift move - something that brings pain which I am only able to describe as "magical" or "surreal".
USG yielded no results so I've been sent to have an MRI done, but corona got in the way of that.
Exercise helps in my case fortunately. My friend wasn't so lucky and once he started experiencing chronic pain, it never went away, despite efforts in this direction, and eventually started affecting his career.
Pain changes you. Especially if it's sudden and unpredictable. Anxiety sets in eventually.
Have had neck and back pain for 10 years now, I've learned to live with it, sometimes it hurts so much that I'm wondering if I'm going to get paralyzed, or if I'll be in 5-10 years, and sometimes I forget the pain until it comes back. No doctor has been able to help, some doctors want me to do PT, some want me to do chiro, none helped. Some doctors don't want me to do X-rays, some are OK with it, after some X-rays some say I have an inverted vertebra, some say that I don't. At this point I have learned to understand that no doctors understand back pain, and that unless I'm willing to pay top money for high-end hospitals, I'll probably live all my life in pain until it gets so bad I'll end up killing myself or something. Well we'll see...
What seems to work for me sometimes: jogging and deep breathing.
I have also had trouble with lots of inconsistent information from doctors. In my case urologists. Interstitial Cystitis / Chronic Pelvic Pain Syndrome. Some doctors say it's an allergy thing. Others tell you to do pelvic floor PT. Some tell you its an anxiety thing. Every doctor takes a different tack.
People wonder why folks question doctors, it's because for many issues, we often are forced to substitute our own judgment of what works from trying a menu of inconsistent medical opinions.
I'm really sorry for everyone here suffering. Just want to voice my support.
I wish you to get better and pain free some day.
As migraine sufferer, I find relief in only two thoughts:
- my migraines last 4 hours and happen once every 3-6 months, and there are people who have 72hs long migraines, or migraine every few days
- I could've had cluster headache instead. People suffering from those call them "suicide headache" and are known to hit their head against different objects, because losing consciousness or felling other pain is preferable to it:
https://www.youtube.com/watch?v=OO5oDaG45kE
I get cluster headaches (as part of a larger pain condition). The easiest way I can think of describing it is that it starts out feeling sort of like a painful headache on one side of your head, that rapidly becomes more painful and _never stops_. The attacks can last literally months (My attacks tend to be 2-months long, two or three times a year).
The nickname of "suicide headache" is absolutely earned. Your face contains some of the most painful nerves in your body. Light them all up like a christmas tree, and keep it lit for months. Drive an icepick into your eye and keep that pain there for months. There is no escape. The pain can and will drive you from sleep, and there is basically no pain medication that will do anything noticeable.
I would never wish this upon anyone. Friend or foe.
---
All that being said, pain is a deeply personal thing. If your migraines are putting you in the worst pain that you know, then that's the very worst thing that you know. Coping with it means that you're dealing, and deserve sympathy, and understanding.
I don't get migraines, never have, so I don't understand what it's like. You have my sympathy for it. I am sorry that you suffer is this way, and I wish that it wasn't something that you consider part of your normal. I wish there was something I could do to ease your pain. Your living with it, is something to be proud of.
I get both! Mostly clusters, but on occasion I'll have a looooong headache that I can't shake, and after a while I start feeling the nausea and realize it's a migraine.
https://startingstrength.com/article/aches-and-pains
I don't have physical pain thankfully, but I have severe tinnitus.
I'm unable to work for more than a few hours. I'm having a hard time to fall asleep.
The fear of it getting worse is generating a large amount of stress.
Wonder if he's able to code. I have Thoracic Outlet Syndrome (TOS) and work at a FANG. Everyday and every line of code is a challenge. Planning to push through for a few more years before I can find a new career where I don't haave to type as much but I don't know what yet. Really sucks.
Haha, I actually just sent him an email about TOS just in case he'd never heard about it. Large amount of people with TOS also having frozen shoulder as a down the chain issue.
Have you been seen by a good TOS doc yet/considered surgery? I have bilateral NTOS + left sided VTOS. I'll soon be having a first rib resection (FRRS) and scalenectomy, possibly a pec minor resection down the line, with Dr. Dean Donahue at Boston Massachusetts General Hospital. Donahue is arguably the _best_ surgeon in the US, taking in a large amount of cases that have already had a botched surgery and being able to give them nearly total/total recovery.
There's around 5-10 great surgeons within the US though, and this unfortunately seems to be a condition it which surgery is mostly the best option. As much as I absolutely despise Facebook, here's two really great groups for TOS info/resources/top surgeons if you're not yet aware.
https://m.facebook.com/groups/15231937182
https://m.facebook.com/groups/205345126171314
I'm fortunate not to be in any significant pain, beyond the standard aches of nearing 40. Just wanted to say that I empathize with the OP and those of you in the comments here who are dealing with real pain and disability. The fortitude shown in the post and in many of the comments is impressive. I hope things improve for you.
I didn’t realize how privileged I was until a relatively minor bike crash left me with a hard limp for a week or two. There’s a lot of lessons there (how can we design streets better? why don’t we focus on accessibility? why is the healthcare system hard to navigate?) but honestly the one that really hit me is how privileged I am to be healthy.
This also honestly makes me wonder how hard it must be for wild animals who get injured, and need to worry about predators throughout the whole recovery process.
A serious injury that limits mobility is certain death from starvation for many or most species. Adults of most species don't feed each other. This is true enough that finding a body or fossil with a healed fracture of a long bone is very interesting as it implies something about social behavior.
That's such a horrible death. Nature is brutal. One would wish there were a kill switch if you knew you were both in pain and going to die of starvation. Having that might even save some of your species members so that predators can't guess where the rest of the healthy ones are.
It's also strange that social behaviors didn't evolve in more species. They seem to have the brains to migrate thousands of miles and borrow homes, yet they don't have the brains to help members of their species, which would help them proliferate.
There's a reason most wild animals don't live more than 5 or 6 years. Imagine living as long as a toddler, tops, because your body is completely worn out.
It's remarkable how many people I know, including myself, had significant bicycle-related trauma. I broke my ankle in three places due to a fall (do not recommend by the way, once the shock wears off the pain is pretty bad, and then after a while you have to walk on your still partially broken foot so that it heals properly). A friend of mine broke a clavicle. Another friend nearly fractured her spine. I sold my bike after the accident and wasn't tempted to buy another one since.
Yeah I got hit by a bike because someone wasn’t following the law and now I have a chronic issue
Not disputing, not arguing, just trying to understand.
How come you and people you know suffered so many accidents? Were you commuting, competing, mountain biking, what? Is the weather bad?
Maybe my serious accident is waiting for me still, but the only close call I had was due to my own recklessness. Just riding a bike going from A to B? I can see how one could get injured, but not THAT seriously, unless it's due to a collision with a vehicle. Or it's something involving the head.
I don't know anyone that got seriously injured in bike accidents. I'm trying to understand if I'm just naive (and lucky) or if there's something I should avoid.
Honestly, a lot of it depends on the design of the streets you ride on. Most of the people I know (myself included) have been injured commuting from being doored, having a driver make a blind left turn, having to merge into fast traffic because a car is parked in the bike lane, etc.
For me it was a fall as I was trail biking. Not anything white-knuckle, just a fairly pedestrian trail. I fell off and folded my ankle 90 degrees inward. For the guy who broke his clavicle it was slippery pavement - some leaves - he fell sideways. Don't know about the gal.
I have nothing to add other than I think Scott Hanselman is a wealth of information and a legitimate gem in the programming community. I hope he can figure this out, and I hope he doesn't stay in horrible pain forever.
Feel better, man.
I have a legendarily bad back, as does my father. One time at the office it seized up and and floored me for 45 minutes as coworkers walked by. My right leg went completely numb, and didn’t get back to normal for months.
Don’t need any suggestions, I have tried them all, lots of doctors, yes yes yes. I manage. But it is a pain in the back to deal with.
whats the actual diagnosis?
I have several discs in my lower back that are impinging on my spine. They are bulging out.
Pain sucks. End of story.
oh lord, a comment section about pain on a decrepit techie forum.. let's sit back and await the inevitable dang sticky pagination of ailments
okay, so smoke some weed and go about your day? why is this even posted here?
Weed isn’t a magical drug no matter how much it’s advocates want it to be. Also I’m glad this was posted, as someone who suffers from more than one chronic pain condition, as it’s been eye opening to see how much of HN is suffering as well. Sometimes it’s comforting just to know you’re not alone.
Because someone thought it was interesting enough to post it?