by LyalinDotCom on 10/30/20, 10:33 PM with 335 comments
by banana_giraffe on 10/31/20, 12:13 AM
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.
by CobaltFire on 10/30/20, 11:52 PM
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.
by f2000 on 10/31/20, 3:29 AM
by newbie789 on 10/31/20, 1:17 AM
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!
by strstr on 10/31/20, 12:37 AM
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.
by dandare on 10/31/20, 10:33 AM
As you read these lines, people are hanging from ceiling by hands handcuffed behind their back, being beaten all over the body until they lose consciousness, woken up and beaten over and over.
We have learned to ignore what is routinely happening in countries like SA, Egypt, NK, Turkey, China and many, many others. We use the newspeak "human rights abuse" to soften the sound of it, to avoid the emotional disturbance that comes with imagining the profesional, large scale, indiscriminate torture programs in countries that are our military allies and trade partners.
by autarch on 10/31/20, 12:18 AM
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.
by kinkthepainaway on 10/31/20, 12:21 AM
by shakna on 10/31/20, 1:57 AM
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.
by zdragnar on 10/30/20, 11:58 PM
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.
by chime on 10/31/20, 3:44 AM
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.
by AuryGlenz on 10/31/20, 1:50 AM
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.
by bane on 10/31/20, 3:32 AM
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....
by alexh1 on 10/30/20, 11:33 PM
by nosmokewhereiam on 10/31/20, 1:30 AM
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.
by neurobashing on 10/31/20, 1:25 AM
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.
by DoreenMichele on 10/31/20, 3:39 AM
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.
by hnruss on 10/31/20, 12:48 AM
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.
by tejtm on 10/31/20, 12:05 AM
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.
by SoSoRoCoCo on 10/31/20, 3:40 AM
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.
by softwaredoug on 10/31/20, 12:39 AM
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.
by bichiliad on 10/31/20, 12:02 AM
by zilian on 10/31/20, 8:02 AM
Lasg time I heavily cut my finger while cooking, didnt feel a thing. Didnt feel anything on my first tattoo - the tattoo artist was quite surprised.
Now I feel a bit better with some anti IL17 medicine.
And yet some day the pain comes back with new, untold and unreasonable levels of pain and you can't explain that to most people. The scale has changed and most of you will never feel that - or just once in a while. But not enough, not everyday with this consistency that shreds through your mental ability to take it and to shatter your life.
I would trade a night of torture against my health back.
And then the doctor with all his knowledge says that no - no other painkillers for AS ! Just nsaids !
Please donate for autoimmune disorders, they are awful
by eric_b on 10/31/20, 2:10 AM
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?...
by inpdx on 10/31/20, 12:48 AM
Sympathies for everyone out there dealing with ongoing pain.
by S_A_P on 10/31/20, 2:11 AM
by throwaway_eoe on 10/31/20, 1:41 AM
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.
by q_andrew on 10/31/20, 4:04 AM
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.
by hsuduebc on 10/31/20, 2:39 AM
by seibelj on 10/31/20, 12:18 AM
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.
by AnonHP on 10/31/20, 5:02 AM
Gratitude for being “healthy enough” is what I try to practice, because I know that things could be unimaginably worse in a matter of days or weeks as time passes.
We’ve come a long, long way in healthcare — both in terms of preventative measures and curative measures — in the last one century. But many a times I’m still left with the feeling that the progress required, with the progress being affordable as well as accessible to all, is orders of magnitude more than what we’ve achieved. Almost makes me wish for a time machine so I could go two hundred years in the future and marvel at the medical achievements and how many issues are easily dealt with (considering a mostly-positive future scenario).
by qgrgergfqgfev on 10/31/20, 12:56 AM
What seems to work for me sometimes: jogging and deep breathing.
by curiousDog on 10/31/20, 1:56 AM
by jwilber on 10/31/20, 6:00 AM
I went to multiple urologists, GI docs, etc. and was ultimately diagnosed with “chronic pelvic pain disorder”: basically a wastebasket diagnosis after they’ve eliminated all other culprits.
It’s not known exactly what causes it, but a leading idea (that makes sense in my case especially) is that you’re basically having a Charlie horse (cramp) in your prostate that lasts months. It can occur after a serious surgery or traumatic event.
Anyway, there’s no cure, but after months of stretching it’s mostly gone now.
While health issues still persist in my life, I feel healthy enough now to do basically everything in my life that I did before the surgery. But the whole incident really changed the way I look at health, life, and health care/awareness in America.
by giardini on 10/31/20, 3:57 PM
And in this case, rather than wait a year, someone decided to perform "adhesive capsular release" surgery not once, but twice! What happened to "Primum non nocere": "First, do no harm"?
My hat is off to the person(s) who first understood that doing nothing to the shoulder was the correct therapy. And woe to those who prolong suffering by "fixing" what they do not understand.
by jacobwilliamroy on 10/31/20, 8:43 AM
by Tade0 on 10/31/20, 1:41 AM
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.
by dustinmoris on 10/31/20, 7:28 AM
I have been doing this my entire life to every injury I have ever had, from small to big. As soon as something started to hurt me I did that movement so much until the pain vanished. I never let my body rust. Being active, healthy exercise, body stretches, feeling the blood rush through your veins and the sweat drop off your face is the best way to deal with any problems in life. It helps with mental and physical issues.
by ozim on 10/31/20, 10:37 AM
Scott is writing about cognitive dissonance where you feel the pain and you just want to stop physical therapy. But going through the pain and doing therapy is going to make it all better in the long term.
Main point would be staying in bed all days is easier than exercising, not eating whole day is harder than eating sweets all day, going through more pain to relieve it later is harder as well. Unfortunately we are mostly wired to get short term benefits right now and a person has to really put in effort to go for long term benefits.
by bird_monster on 10/31/20, 12:54 AM
Feel better, man.
by agbell on 10/31/20, 12:46 AM
by Ralfp on 10/31/20, 1:48 AM
- 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
by sytelus on 10/31/20, 8:43 AM
by Ninjinka on 10/31/20, 5:54 AM
by agumonkey on 10/31/20, 1:15 PM
One thing, pain and expressing pain is vital. For you and also bonding. It's not a given on how to respond to someone's pain. If you deny someone too much he'll suffer a lot lot more [0]. Now sometimes pain is too intense and we also alienate people around us because they're, most of the time, not ready to understand or bear the load.
[0] something builtin our brains ?
by codegeek on 10/31/20, 7:39 AM
My mom had it over a decade ago when she was under 60. I saw her in constant pain and it really hurt. She used to get physical therapy, tons of professional heat therapy and forced stretching as well. It lasted for about a year and it went away. She is much older now but that thing hasn't come back yet. I can understand his pain even though I cannot feel it.
by known on 10/31/20, 1:48 PM
by tylerd22 on 10/31/20, 2:48 AM
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.
by chepin on 10/31/20, 4:12 AM
by tempestn on 10/31/20, 12:22 AM
by thomassantosh on 10/31/20, 4:31 AM
by bionhoward on 10/31/20, 7:45 PM
by thehappypm on 10/31/20, 2:03 AM