At the time Covid lockdown started, my entire foot had become inflamed, and I couldn’t walk on it. It’s happened before, doctors, physiotherapists and immune specialists couldn’t find a disease or condition to blame it on. They could only offer pain killers and anti-inflammatory meds. It passed, as it has before. One thought was overuse, or some reinjury from the past.
I happened to find a personal trainer that was educated by osteopaths and the last year with him has been shocking. In my mind, I didn’t have any pain issues, though some areas were stiff, getting things from lower cabinets was becoming a chore, and the end of the day at work the back of my head and neck would get stiff. A cocktail or beer could solve the latter.
It has been over a year of discoveries. It turns out, muscles all over my body were very tight, for whatever reason, many major movements were no longer using the major muscle, but instead the brain had recruited minor muscles for the movement - perhaps a compensation for a past injury. I’ve learned that I have psoas muscles, and how to use them (though that journey continues) and that pinching feeling in my hip no longer happens when I am sitting.
I was already aware that so many things happen in our bodies that we aren’t conscious of, but the depth of it now astounds me. First, I did have pain and problems, but I had somehow shut off awareness. Second, all of those problems were being still having the effect of making me feel tired and worn down. Third, all of these compensatory movements that the brain does all by itself were probably great for simple survival because they allow us to keep going even though the best way to move is lost. Thing is, the brain doesn’t seem to have an automatic ‘service restoration to primary’. We have to do it consciously, intentionally, and with practice.
Pain is in the mind. There can be pain where there is no physical problem, and there can be no pain where there is a serious problem, but there can also be pain because we have lost awareness of our body and so pain manifests all over the place. There is an idea that the mind and body are separate, this is wrong and the idea needs to be burned with fire. Until then, people will continue fighting with these phantoms. We can group pain together, slice it apart, but I think that in many cases there isn’t much more to learn from pain, except that in many cases it is a symptom of a body trying to communicate to a mind that stopped paying attention.
It's fascinating, isn't it? It's also frustrating. You see a doctor because something hurts, they look at the something -- often in isolation -- and if they can't figure it out, you're pretty much on your own.
I had constant foot pain in one foot for nearly a year. Doctors told me to rest. I walk a lot, and walking less wasn't really an option. Saw an osteopath, with more than a healthy dose of skepticism. They gave me exercises which were both baffling and ridiculous, which basically taught me how to use my big toes, then graduated to strengthening those muscles. At some point during this process, the pain went away, and it hasn't come back. Why couldn't my doctor identify this apparent muscle weakness in my foot? I don't know. But I'm glad the osteopath did.
>You see a doctor because something hurts, they look at the something -- often in isolation -- and if they can't figure it out, you're pretty much on your own.
A quick Old Man(tm) rant.
Concerning healthcare, you have to be your own project manager. They're a lot better at curing things they can see (ie. surgery), GPs have crude tools for analysis and mostly serve as gatekeepers to specialists and pharmacists. Also, GPs work mostly from flow charts and you are just one of 1000 patients they see that year. Communications between hospital departments, independent contractors like specialists or ER personnel, GPs, etc. are poor. Continuously audit procedures and drug regimes. Sci-Hub is your friend but don't overestimate the value of studies.
I was told recently that there is already change happening. Medical students are being told that they need to work with the patient, not on them.
Nobody knows their symptoms and illness better than the patient themselves. A doctor looks at them for 5 minutes, the patient lives with them so not including the patient in the diagnostic process is like working with a blindfold on.
That's how good doctors have done it as far back as I can remember. If the person you're seeing isn't involving you in the process and trying to get the whole picture, you should try a different doctor. You don't have to stick with a doctor just because they're the closest or the one you happened to choose first.
As someone with a rare neurological disorder that hadn’t even been clinically recognised when I contracted it (it was seen as a weird subset of migraine in the few places it’d been studied systematically) this is fantastic advice. I also had the joy of being put on SSRIs only to find out they interact horribly with my condition and there’s many reports of this that doctors for the most part seem totally unaware of. I won’t touch anything of the sort ever again as a result, I can only describe my experience as a bad trip that lasted around nine months.
No worries! It started when I was about fifteen or so, I noticed the sky looked "wrong" during a PE lesson. I'd developed what looked like TV static over my whole vision along with seeing trippy patterns in things like repeating tiles, things which came and went but were always there in some respect. I also started having weird dissociative episodes where everything felt like a dream and seemed to lack tangibility. Realising that something was wrong I asked my doctor who told me to go to an optician, who found no sign of eye disease. I went back to my doctor and I saw an opthalmologist who also found no eye disease, and then a neurologist who didn't really know what to make of me. He did a few tests including getting me to stare at some trippy patterns with electrodes glued to my head, then said words to the effect of "we don't really know what this is, but it's unlikely to be anything bad so just try and imagine it away". I could have had a brain scan at this point but I had braces on my teeth at the time which would have made it an enormous faff, so it wasn't seen as a good risk/reward ratio.
Years later when I was a university student it got suddenly worse. I remember the exact day, I had an awful fever from some bug I picked up but still took some painkillers and went out drinking with my housemates as I wasn't sleeping anyway and figured the good old "miracle of the sesh" might make me feel less grotty. The next day I went to lectures and couldn't read the board with the slides on it. My visual symptoms had got much worse, I've never really been able to account for why (whether it was the booze, the fever, or just chance) and new ones had developed too, including a permanent, painful pressure on one side at the back of my head. These acute episodes got increasingly worse until my final exams which I bombed spectacularly because while I could just about read the letters and words, they wouldn't really form meaning properly*. This was terrifying, and I quickly sought medical help.
The problem was the NHS waiting lists for non-urgent things would have meant I'd have drop out of uni indefinitely rather than simply re-sitting my third year so I had to go private, which I was very fortunately to be able to do. I saw another barrage of opthalmologists, neurologists, and other professionals who didn't really recognise what was going on until I finally saw a neuro-opthalmologist who diagnosed me with visual snow syndrome, a recently recognised disorder that's believed to happen when the brain fails to filter out its own noise which then "leaks" into your conscious perception. It turns out I'm not actually hallucinating, what I'm seeing is the inherent noise of the brain's visual system which is actually kind of cool in a sense, it's a bit of a draught through the doors of perception! The cause of this isn't actually known but visual snow produces characteristic markers visible on an fMRI scan and it's theorised to be caused by a localised problem with metabolism in certain areas of the brain.
The problem after that was that anxiety disorders are often comorbid with visual snow (perhaps unsurprisingly, given the nature of the disorder) and I'd spent the last two years or so convinced I had some deleterious brain disease - given the rapid decline and painful pressure in my head I don't think this was an unreasonable fear. I was put on SSRIs because of this, which rather like a Faustian pact made everything infinitely worse very quickly. I'm not sure of the scientific nature of the interaction between jacked up serotonin levels and visual snow syndrome but the subjective nature is almost literally Hellish. Not the Calvinist fire and brimstone Hell, but the kind of Hell that's a total seperation between oneself and everything that is joyful and light in the world. I don't have the literary skills to do the description justice, but the "Life in Death&q...
Thanks for sharing. That's one of the scarier and more detailed descriptions of Visual Snow I've read! The SSRI complications sound truly frightening.
It seems like some research into Visual Snow is being conducted, so at least some people are starting to take it seriously.
We're finally getting some serious migraine research as well, and I suspect that at some point in the future, we'll finally figure out that much of what we thought we knew about migraine is wrong. I can't remember who was doing the research, but some neurologist claimed that migraine is a consequence of some neurons being "too trigger happy", meaning they fire when they shouldn't. I suspect that's where the link with VS is.
I wonder whether the root cause is going to turn out to be a metabolic problem in the cells involved, or whether it's a case of some neurons being too sensitive. If it's the latter, neurological rehabilitation might be a possible treatment avenue. Similar to some migraine patients greatly benefiting from light therapy at specific wavelengths.
If you haven't already, check out /r/visualsnow on reddit, people occasionally post research, recruit volunteers for studies, and generally commiserate there.
No worries, and thanks for the advice about /r/visualsnow. I hope that advances in the understanding of one condition ends up helping both of them because that link definitely makes sense!
> Concerning healthcare, you have to be your own project manager.
+1 for that. 10 years ago I had misdiagnosed cancer for 3 years despite seeing lots of doctors. The symptoms were there but none of the doctors connected the dots.
Since that experience I am coming to the doctors prepared and with defined expectations. And I engage them in well defined Q&As which have defined goals.
I am taking care of my 90 years old Mom now and I do the same - I read the medial literature and suggest to the doctors what results I am expecting. To my surprise most doctors are quite keen to co-operate.
I have improved my Moms quality of life suggesting replacing sleeping pills for mild ant-anxiety pills, and getting anti-depressants that work well for osteoarthritis pain.
If something hurts then why should the default reaction be to see a doctor? It makes more sense to start with a trainer or physical therapist first. Then if you're not seeing improvement after a few weeks move up the continuum of care to a physician and investigate medical treatments. We can't fairly criticize doctors for not knowing absolutely everything about the human body.
That's a good question. I had to learn this lesson through experience -- that doctors rarely solved anything, while self-study and exercise worked miracles. But I was 35 before I really got beyond "Well, I went to the doctor, nothing else I can do."
My personal experience has been that I need a referral from my primary physician before I can get physical therapy covered under my insurance. So far, when I express to my physician my interest in PT they are happy to provide the referral.
That said, the idea that PT may be more effective than medication or surgery is kind of new to me. People may need to be informed that PT is a possible solution for a some pain, especially those a physician may find difficult to diagnose.
Physical therapists are more helpful than doctors for many maybe most problems, in my experience, though the variation in quality may be greater. Part of this could be economics; pt’s have more time. In the future I think having pt rather than doctors as primary point of contact for most patients will be shown to result in better outcomes. I susspect the reason this isn’t already the way it works is mostly because of organized labor (the ama wouldn’t have it) and liability.
> If something hurts then why should the default reaction be to see a doctor?
If something hurts the default is, and should be, consulting a primary care physician, who should then forward your issue to a specialist. PTs are less trained and less useful than MDs, so their scope should be more limited (and should only be consulted for appropriate ailments).
An issue with PTs is that they don't (in the US) have the full diagnostic capability of an MD. Particularly when the issue centers around the neck and spine, going to an MD first and then getting a referral to PT is very important. At that point the PT can be informed of the actual physical issue and develop a proper course of treatment.
Now, if an issue is chronic (like my shoulder problems), there's not much point in going to the MD except to get a "Yep, it's your shoulder again, still don't want opioids? Ok, here's the referral for 10-20 PT sessions so you can get it covered by BCBS."
If I suspect I could have a broken bone, I always go to the GP first. Otherwise, I skip the doctor because it is always the same routine that ends in painkillers and a recommendation for a PT.
Therein lies a major problem, PTs are so used to dealing with health plans capped at hundreds of dollars. People go to a PT expecting an instant solution which is impossible for complex problems. So the whole PT industry has turned into quick fixes in 2-3 sessions that have an immediate feel good result and hand out a piece of paper with a bunch of exercises no one does. It is just as well, without supervision and coaching, they are probably doing the exercise poorly resulting in minimal benefit.
Nailed it. The amount of money insurance will pay for PT is a joke. My wife is a lifelong runner and IIRC insurance would pay like $60 out of the $200+ bill. She just wants to stay active and be healthy and that PT work would pay massive dividends over the year in reduced costs to the insurance companies.
Most doctor I've seen will either underestimate these kinds of problems or assume I'm having another depression-induced over sensitivity / psychosomatic problem. They'd rather treat the usual diseases or send you to a specialist in case of more critical issues.
Ha! Exactly that, he has named all of his exercise with humorous names.
Worst result is the referral to a podiatrist for expensive insoles that IMHO are snake oil. Huge waste of time and money. It turned out that the primary problem they were trying to fix was an issue with glute activation, nothing to do with the foot itself.
Doctors tend to be shockingly "analytic" and siloed in how they approach things. Easily 99% in my experience. Problem: the human body is a system rather than a "bag of parts"!
If they know bones, everything is caused by bones. It's a variant of "if your only tool is a hammer, every problem looks like a nail". Each specialization has only one tool: a hammer or screwdriver, etc. and that's the only lens most have.
None know how to holistically look at things or, for example, consider that bones are connected to tendons to muscles so all three are likely to be involved in certain common pathologies.
The other issue I have with most: they are both shallow and gullible AF. It's far too easy to "suggest" an ailment and get them to only focus on that. Objectivity is not part of their methods in my experience. That does not build trust either.
So both of these combined to create a lot of "cookbook medicine" - like the old pizza commercial: "I go to the fridge and get the box!" which is everything they do.
At least in America.
I've had better experiences with doctors overseas sometimes. Not always but sometimes concierge/resort medicine does better. More time. More focus.
I have a chronic neck pinch, coming from a weak lower trap (I think), that I’d love to fix. I make it worse multiple times a year from lifting and have to take at least a week off the gym.
I bet I am doing what you did with using the wrong muscle.
Arnold’s best friend, Franco Columbo, was my body worker. He’d just look at me and know what I was doing wrong. He was so amazing. And sadly died way too young from a boating accident.
I was stuck on my couch and fed up so I kept searching the web until I found someone that could help. He had an amazing website which is very unusual for small businesses. It described an experience of having our fitness achievements and habits disrupted by injury. The frustrations of traditional physio, but also the importance of integrating training to accelerate healing instead of avoiding the area. It resonated with me, I called him and learned more.
The part I like the most is that I have a bunch of solutions for my problems. I don't need to call him, he taught me what I need to do.
I've had a similar experience in Covid with muscle tightness. It's unbelievable how much our bodies compensate.
It started with a muscle injury to my upper back. Well to heal it, unbeknownst to my conscious awareness, almost an entire half of my body tightened to allow that one area to heal. Like you said it's as if whole sections of my muscles were numb as well, and only after repeated stretching did I "activate" those dormant areas.
And it took being in a very calm and relaxed state (not trivial to do with tightness and/or pain) to "sense" these areas and being stretching them out. Turns out I had to find stretches for all the way down to my big toe to the top of my head and everything in between.
The lessons of body to mind are overflowing suffice to say.
Like many developers, I grew up thinking of my body more as a tedious, irritating burden; the whole brain-in-a-jar/live-in-the-matrix thing seemed kinda appealing. So I was proud of how long I could spend coding or reading and ignoring my body. That gave me a lot of bad habits.
Then I made a friend who's a yoga teacher. Out of curiosity I started attending some of her classes. In her yoga tradition, the root purpose of yoga is to free the mind for meditation. That really resonated for me. Instead of ignoring my body, I could work with it to do better at the things that mattered to me.
In the years since, I've come to think of my previous relationship to my body as like somebody running a large software system with poor instrumentation and observability. Somebody who ignored monitoring alerts until there was downtime. In that framing, I could see it as obviously the wrong approach. That instead I needed to pay attention, take care of maintenance, debug problems, and generally to understand and improve the system over time. Especially as I get older, it really pays off. My only regret is not starting sooner.
I was reading up on improving my rock climbing skills / movement, and a book about better movement was directly mentioned. Looking back, it was what started me down this journey. Being stuck on the couch in searing pain finally pushed me to make the investment of time and money.
No, and thank you for the suggestion. I've never heard of it, but I had more than half of the symptoms listed on the Mayo clinic website. It exactly describes my experience and also the words of my many baffled practitioners. It was a response completely out of line to any possible injury. Pure agony. Doesn't look like there are cut and dry answers, but I'll look into it further. Thanks again.
You would benefit from frequent and deep hip flexor stretching. Look at what they do in Thai massage and or kickboxing warm ups and you will how to develop the full range of motion for the hip. I am convinced most men under appreciate this to our own detriment. After I started doing deep stretching and functional exercise movements for awhile my back, neck, and hips would crack on their own and it really loosens up the whole body.
> Pain is in the mind. There can be pain where there is no physical problem, and there can be no pain where there is a serious problem
My left shoulder was mostly unusable after a subaccromial decompression surgery that was meant to make the shoulder less-unusable. Doctors told me to see PT, PT had me do the same waste-of-time banded pull aparts and subscap work. Imaging suggested there wasn't a structural problem and PT never really listened to anything I had to say. So, as do most, I stopped going.
Eventually I got tired of being immobilized and I just started doing what I wanted to do. I lifted weights and just clenched my teeth during the periods of extreme pain during various movements. Lo and behold, the issue was mostly related to lots of muscles being very weak from the changes in movement patterns to accommodate the extreme pain. None of the PTs allowed me to do any movements other than rotator cuff band work. Bench pressing for 2 weeks had me largely out of pain.
The state of doctors/phsyiotherapists/physical therapy is a joke. At this point I would consult a bullshit crossfit box owner before going to a doctor for movement deficiencies.
My rotator cuff was also on the list of problems. We used the bands, but also a squash ball and rolled out the 4 muscles. Lie down on it with your arm pointing upward for the rear one. On your side under your arm pit for lower, between your pec and shoulder for the front and think of a bull with the ball between your shoulder and the wall.
It is one of my favourites because shoulder pain is so annoying to reach, and all it took was a simple ball. Lots of sites on the Internet have better detail on the steps, but releasing tight muscles can work wonders.
That's when traditional medicine like traditional Chinese medicine come to be helpful. Although traditional Chinese medicine lacks preciseness and reasoning of the modern medicine, they possess a truly whole body methodology of treating ailment and diseases.
It's under major criticism nowadays, although mostly for the wrong reasons. Because like so many once beloved and respected professions, they become the unfortunate prey of the capitalism frenzy and being used as the tool for profit.
Practitioners now use the inherent fuzziness to hide their ignorance. Putting the ineffectiveness of their treatment on some seemingly plausible "theory" that was never proclaimed by their ancient predecessor.
Even worse, the herbs used in traditional Chinese medicine are now toxicated by the industrial wastes grow into the soil. Merchants are now more than happy to adopt modern agriculture techniques to improve their quantity and cases nothing about the effectiveness.
Alas, sadness is now upon the ones who truly see and feel the greatness of the traditional Chinese medicine.
it's partly why I think physical exercise and education should be mandatory with a focus on higher performance floor and well being.
It's like your car.. if one part fails the system will compensate globally by absorbing the issue in every possible way but it leads to what you had. Tiny issues spread everywhere. When you restore balance your life gets so much easier.
Better title: study picks 9 categories and assigns chroinic pains to one of those categories, proving that data can be sorted into arbitrary categories.
>The agglomeration method that we adopt is Ward’s method, which aims to min- imize the total within-cluster variance. At each step in Ward’s method, the algorithm finds two clusters that will result in minimum increase in total within-cluster variance after fusing. The number of clusters was narrowed by cluster size and similarity to 9 total groups through review of dendrograms and heat maps by non-clinician investigators (A.G. and N.A.).
1. Pick an algorithm.
2. Get a number of clusters. Preferably below 10, because otherwise it gets too messy for publication.
3. Justify algorithm based on its first paragraph on Wikipedia.
i like your spin on it to height. albiet pain likely has a multidimensional graph to cluster onto, height having one dimension makes the whole idea of clustering it silly :)
More over, picking new categories is a great application of "big data".
Real example:
Imagine catalog for fashion retailer. Time to add color picker & filter. No agreement on color names, how many shades of gray, etc.
So one of our big data gurus figures it out. Gather dozens of palettes. Social cognition style guessing game. Slice & dice our product catalog 100s of ways to get best fit.
Result was a thing of beauty. Truly novel. The analysis worthy of a PhD.
I am by no means an expert, but I have spent time and experience enough with chronic pain to state that this rather one dimensional. Meaning their group although big was narrow in scope. For example, no chronic head pain?
We have been working on a VR body mapping app(https://www.hatsumivr.com/), I'm the art lead on it. And you quickly find that there is an ocean if different experiences out there, and thats probably the biggest obstacle to helping people with chronic pain. Its is often treated (at the policy level) as one condition with a select few options for treatment. Studies with conclusion like this reinforce a reductionism in medical spaces and leave the people that don't fit into their pidgin holes out in the cold, alone, and in pain.
As I suffer from relentless chronic pain, I was hoping to read something insightful. What I saw might as well been on reddit/r/coolguides. Your post gave me a chuckle.
Was about to comment the same. I had a severe headache this week, the second headache episode for this year. It's not chronic so it's off-topic, but I was wondering if the reason headaches are not catalogued here is because pain management clinics don't handle them.
For anyone suffering from Type A or Type C, I urge you to check if you have LSTV (Lumbosacral Transitional Vertebrae). It is estimated to effect 12% of the population.
This diagnosis (only 6 months ago) got me out of a spiral of pain. Knowing it was not a disc or other soft tissue gave me the confidence to stretch and exercise appropriately and I’m now mostly pain free. I expect in another 6 months I won’t notice it at all.
If you see a chiro then ask for imaging (X-rays are typically covered by insurance after 6 visits with your doctor). This diagnosis literally changed my life, and I wish I’d had it sooner.
Had shooting pain on my thighs and thought it was sciatic nerve issue but turns out I needed to stretch my it bands and ligaments and it went away. I mean it could still be sciatic nerve issue but at least I didn’t need pain killers or anything to fix it.
I find a lot of pain we have could be due to muscle overuse, misuse, underuse causing tightness. Everything seem to link and if you relief a kink in a different area, it could solve a pain in another area.
Weightlifting can also be a huge help in this area-- among other things, it forces you to stretch less used muscle groups. You should be prepared to care for yourself on off days, but decent nutrition and massages every so often are more affordable than you think.
I think our healthcare system (in the US) is very poor at helping people figure something out. If you know and it's clear the system is great at fixing it. I had all kinds of knee pain and saw every ortho I could. Knees were fine. It wasn't until I visited an osteopath in France (by coincidence) that he was able to diagnose it just by feel - it was my hip. After having it replaced I was good as new. I have friends having similar chronic pain problems and they have been to medical centers all over, had tons of tests and yet there is no real diagnosis. Each doctor looks at it from their own point of view - nope, no cancer - nope, no MS, etc.
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[ 3.2 ms ] story [ 119 ms ] threadI happened to find a personal trainer that was educated by osteopaths and the last year with him has been shocking. In my mind, I didn’t have any pain issues, though some areas were stiff, getting things from lower cabinets was becoming a chore, and the end of the day at work the back of my head and neck would get stiff. A cocktail or beer could solve the latter.
It has been over a year of discoveries. It turns out, muscles all over my body were very tight, for whatever reason, many major movements were no longer using the major muscle, but instead the brain had recruited minor muscles for the movement - perhaps a compensation for a past injury. I’ve learned that I have psoas muscles, and how to use them (though that journey continues) and that pinching feeling in my hip no longer happens when I am sitting.
I was already aware that so many things happen in our bodies that we aren’t conscious of, but the depth of it now astounds me. First, I did have pain and problems, but I had somehow shut off awareness. Second, all of those problems were being still having the effect of making me feel tired and worn down. Third, all of these compensatory movements that the brain does all by itself were probably great for simple survival because they allow us to keep going even though the best way to move is lost. Thing is, the brain doesn’t seem to have an automatic ‘service restoration to primary’. We have to do it consciously, intentionally, and with practice.
Pain is in the mind. There can be pain where there is no physical problem, and there can be no pain where there is a serious problem, but there can also be pain because we have lost awareness of our body and so pain manifests all over the place. There is an idea that the mind and body are separate, this is wrong and the idea needs to be burned with fire. Until then, people will continue fighting with these phantoms. We can group pain together, slice it apart, but I think that in many cases there isn’t much more to learn from pain, except that in many cases it is a symptom of a body trying to communicate to a mind that stopped paying attention.
I had constant foot pain in one foot for nearly a year. Doctors told me to rest. I walk a lot, and walking less wasn't really an option. Saw an osteopath, with more than a healthy dose of skepticism. They gave me exercises which were both baffling and ridiculous, which basically taught me how to use my big toes, then graduated to strengthening those muscles. At some point during this process, the pain went away, and it hasn't come back. Why couldn't my doctor identify this apparent muscle weakness in my foot? I don't know. But I'm glad the osteopath did.
A quick Old Man(tm) rant.
Concerning healthcare, you have to be your own project manager. They're a lot better at curing things they can see (ie. surgery), GPs have crude tools for analysis and mostly serve as gatekeepers to specialists and pharmacists. Also, GPs work mostly from flow charts and you are just one of 1000 patients they see that year. Communications between hospital departments, independent contractors like specialists or ER personnel, GPs, etc. are poor. Continuously audit procedures and drug regimes. Sci-Hub is your friend but don't overestimate the value of studies.
Nobody knows their symptoms and illness better than the patient themselves. A doctor looks at them for 5 minutes, the patient lives with them so not including the patient in the diagnostic process is like working with a blindfold on.
Years later when I was a university student it got suddenly worse. I remember the exact day, I had an awful fever from some bug I picked up but still took some painkillers and went out drinking with my housemates as I wasn't sleeping anyway and figured the good old "miracle of the sesh" might make me feel less grotty. The next day I went to lectures and couldn't read the board with the slides on it. My visual symptoms had got much worse, I've never really been able to account for why (whether it was the booze, the fever, or just chance) and new ones had developed too, including a permanent, painful pressure on one side at the back of my head. These acute episodes got increasingly worse until my final exams which I bombed spectacularly because while I could just about read the letters and words, they wouldn't really form meaning properly*. This was terrifying, and I quickly sought medical help.
The problem was the NHS waiting lists for non-urgent things would have meant I'd have drop out of uni indefinitely rather than simply re-sitting my third year so I had to go private, which I was very fortunately to be able to do. I saw another barrage of opthalmologists, neurologists, and other professionals who didn't really recognise what was going on until I finally saw a neuro-opthalmologist who diagnosed me with visual snow syndrome, a recently recognised disorder that's believed to happen when the brain fails to filter out its own noise which then "leaks" into your conscious perception. It turns out I'm not actually hallucinating, what I'm seeing is the inherent noise of the brain's visual system which is actually kind of cool in a sense, it's a bit of a draught through the doors of perception! The cause of this isn't actually known but visual snow produces characteristic markers visible on an fMRI scan and it's theorised to be caused by a localised problem with metabolism in certain areas of the brain.
The problem after that was that anxiety disorders are often comorbid with visual snow (perhaps unsurprisingly, given the nature of the disorder) and I'd spent the last two years or so convinced I had some deleterious brain disease - given the rapid decline and painful pressure in my head I don't think this was an unreasonable fear. I was put on SSRIs because of this, which rather like a Faustian pact made everything infinitely worse very quickly. I'm not sure of the scientific nature of the interaction between jacked up serotonin levels and visual snow syndrome but the subjective nature is almost literally Hellish. Not the Calvinist fire and brimstone Hell, but the kind of Hell that's a total seperation between oneself and everything that is joyful and light in the world. I don't have the literary skills to do the description justice, but the "Life in Death&q...
It seems like some research into Visual Snow is being conducted, so at least some people are starting to take it seriously.
We're finally getting some serious migraine research as well, and I suspect that at some point in the future, we'll finally figure out that much of what we thought we knew about migraine is wrong. I can't remember who was doing the research, but some neurologist claimed that migraine is a consequence of some neurons being "too trigger happy", meaning they fire when they shouldn't. I suspect that's where the link with VS is.
I wonder whether the root cause is going to turn out to be a metabolic problem in the cells involved, or whether it's a case of some neurons being too sensitive. If it's the latter, neurological rehabilitation might be a possible treatment avenue. Similar to some migraine patients greatly benefiting from light therapy at specific wavelengths.
If you haven't already, check out /r/visualsnow on reddit, people occasionally post research, recruit volunteers for studies, and generally commiserate there.
+1 for that. 10 years ago I had misdiagnosed cancer for 3 years despite seeing lots of doctors. The symptoms were there but none of the doctors connected the dots.
Since that experience I am coming to the doctors prepared and with defined expectations. And I engage them in well defined Q&As which have defined goals.
I am taking care of my 90 years old Mom now and I do the same - I read the medial literature and suggest to the doctors what results I am expecting. To my surprise most doctors are quite keen to co-operate.
I have improved my Moms quality of life suggesting replacing sleeping pills for mild ant-anxiety pills, and getting anti-depressants that work well for osteoarthritis pain.
That said, the idea that PT may be more effective than medication or surgery is kind of new to me. People may need to be informed that PT is a possible solution for a some pain, especially those a physician may find difficult to diagnose.
If something hurts the default is, and should be, consulting a primary care physician, who should then forward your issue to a specialist. PTs are less trained and less useful than MDs, so their scope should be more limited (and should only be consulted for appropriate ailments).
Now, if an issue is chronic (like my shoulder problems), there's not much point in going to the MD except to get a "Yep, it's your shoulder again, still don't want opioids? Ok, here's the referral for 10-20 PT sessions so you can get it covered by BCBS."
Therein lies a major problem, PTs are so used to dealing with health plans capped at hundreds of dollars. People go to a PT expecting an instant solution which is impossible for complex problems. So the whole PT industry has turned into quick fixes in 2-3 sessions that have an immediate feel good result and hand out a piece of paper with a bunch of exercises no one does. It is just as well, without supervision and coaching, they are probably doing the exercise poorly resulting in minimal benefit.
Worst result is the referral to a podiatrist for expensive insoles that IMHO are snake oil. Huge waste of time and money. It turned out that the primary problem they were trying to fix was an issue with glute activation, nothing to do with the foot itself.
If they know bones, everything is caused by bones. It's a variant of "if your only tool is a hammer, every problem looks like a nail". Each specialization has only one tool: a hammer or screwdriver, etc. and that's the only lens most have.
None know how to holistically look at things or, for example, consider that bones are connected to tendons to muscles so all three are likely to be involved in certain common pathologies.
The other issue I have with most: they are both shallow and gullible AF. It's far too easy to "suggest" an ailment and get them to only focus on that. Objectivity is not part of their methods in my experience. That does not build trust either.
So both of these combined to create a lot of "cookbook medicine" - like the old pizza commercial: "I go to the fridge and get the box!" which is everything they do.
At least in America.
I've had better experiences with doctors overseas sometimes. Not always but sometimes concierge/resort medicine does better. More time. More focus.
I have a chronic neck pinch, coming from a weak lower trap (I think), that I’d love to fix. I make it worse multiple times a year from lifting and have to take at least a week off the gym.
I bet I am doing what you did with using the wrong muscle.
A good trainer might have this kind of outlook and training but most don’t.
I’ll see if I can find a PT who can replicate.
The part I like the most is that I have a bunch of solutions for my problems. I don't need to call him, he taught me what I need to do.
It started with a muscle injury to my upper back. Well to heal it, unbeknownst to my conscious awareness, almost an entire half of my body tightened to allow that one area to heal. Like you said it's as if whole sections of my muscles were numb as well, and only after repeated stretching did I "activate" those dormant areas.
And it took being in a very calm and relaxed state (not trivial to do with tightness and/or pain) to "sense" these areas and being stretching them out. Turns out I had to find stretches for all the way down to my big toe to the top of my head and everything in between.
The lessons of body to mind are overflowing suffice to say.
Like many developers, I grew up thinking of my body more as a tedious, irritating burden; the whole brain-in-a-jar/live-in-the-matrix thing seemed kinda appealing. So I was proud of how long I could spend coding or reading and ignoring my body. That gave me a lot of bad habits.
Then I made a friend who's a yoga teacher. Out of curiosity I started attending some of her classes. In her yoga tradition, the root purpose of yoga is to free the mind for meditation. That really resonated for me. Instead of ignoring my body, I could work with it to do better at the things that mattered to me.
In the years since, I've come to think of my previous relationship to my body as like somebody running a large software system with poor instrumentation and observability. Somebody who ignored monitoring alerts until there was downtime. In that framing, I could see it as obviously the wrong approach. That instead I needed to pay attention, take care of maintenance, debug problems, and generally to understand and improve the system over time. Especially as I get older, it really pays off. My only regret is not starting sooner.
https://www.goodreads.com/book/show/22847203-a-guide-to-bett...
My left shoulder was mostly unusable after a subaccromial decompression surgery that was meant to make the shoulder less-unusable. Doctors told me to see PT, PT had me do the same waste-of-time banded pull aparts and subscap work. Imaging suggested there wasn't a structural problem and PT never really listened to anything I had to say. So, as do most, I stopped going.
Eventually I got tired of being immobilized and I just started doing what I wanted to do. I lifted weights and just clenched my teeth during the periods of extreme pain during various movements. Lo and behold, the issue was mostly related to lots of muscles being very weak from the changes in movement patterns to accommodate the extreme pain. None of the PTs allowed me to do any movements other than rotator cuff band work. Bench pressing for 2 weeks had me largely out of pain.
The state of doctors/phsyiotherapists/physical therapy is a joke. At this point I would consult a bullshit crossfit box owner before going to a doctor for movement deficiencies.
It is one of my favourites because shoulder pain is so annoying to reach, and all it took was a simple ball. Lots of sites on the Internet have better detail on the steps, but releasing tight muscles can work wonders.
It's under major criticism nowadays, although mostly for the wrong reasons. Because like so many once beloved and respected professions, they become the unfortunate prey of the capitalism frenzy and being used as the tool for profit.
Practitioners now use the inherent fuzziness to hide their ignorance. Putting the ineffectiveness of their treatment on some seemingly plausible "theory" that was never proclaimed by their ancient predecessor.
Even worse, the herbs used in traditional Chinese medicine are now toxicated by the industrial wastes grow into the soil. Merchants are now more than happy to adopt modern agriculture techniques to improve their quantity and cases nothing about the effectiveness.
Alas, sadness is now upon the ones who truly see and feel the greatness of the traditional Chinese medicine.
It's like your car.. if one part fails the system will compensate globally by absorbing the issue in every possible way but it leads to what you had. Tiny issues spread everywhere. When you restore balance your life gets so much easier.
1. Pick an algorithm.
2. Get a number of clusters. Preferably below 10, because otherwise it gets too messy for publication.
3. Justify algorithm based on its first paragraph on Wikipedia.
More over, picking new categories is a great application of "big data".
Real example:
Imagine catalog for fashion retailer. Time to add color picker & filter. No agreement on color names, how many shades of gray, etc.
So one of our big data gurus figures it out. Gather dozens of palettes. Social cognition style guessing game. Slice & dice our product catalog 100s of ways to get best fit.
Result was a thing of beauty. Truly novel. The analysis worthy of a PhD.
I am by no means an expert, but I have spent time and experience enough with chronic pain to state that this rather one dimensional. Meaning their group although big was narrow in scope. For example, no chronic head pain? We have been working on a VR body mapping app(https://www.hatsumivr.com/), I'm the art lead on it. And you quickly find that there is an ocean if different experiences out there, and thats probably the biggest obstacle to helping people with chronic pain. Its is often treated (at the policy level) as one condition with a select few options for treatment. Studies with conclusion like this reinforce a reductionism in medical spaces and leave the people that don't fit into their pidgin holes out in the cold, alone, and in pain.
Discussing pain with my care providers is very suboptimal.
The 9 categories from this OC are far superior to our respective current vocabularies.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Educat...
This diagnosis (only 6 months ago) got me out of a spiral of pain. Knowing it was not a disc or other soft tissue gave me the confidence to stretch and exercise appropriately and I’m now mostly pain free. I expect in another 6 months I won’t notice it at all.
If you see a chiro then ask for imaging (X-rays are typically covered by insurance after 6 visits with your doctor). This diagnosis literally changed my life, and I wish I’d had it sooner.
I find a lot of pain we have could be due to muscle overuse, misuse, underuse causing tightness. Everything seem to link and if you relief a kink in a different area, it could solve a pain in another area.