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Comment by circlefavshape | Hacker News Reader

> doctors dismiss patients as crazy or "making it up"

It's very easy to frame what doctors say like this, but in my experience at least that's not really what they're doing. A doctor is a classification machine - they take your symptoms as inputs and output a disease or a syndrome, hopefully with mitigation measures associated with it.

When my wife had long covid for 3 years and doctors couldn't find anything wrong with her a neurologist diagnosed her with a "functional neurological disorder" and suggested psychiatry. My wife felt dismissed and was really mad about it, but the reality is that some sets of symptoms are psychosomatic, and psychiatry can help, so if the neurologist saw 100 people with my wife's symptoms and made the same recommendation to them all, some of them would benefit (as opposed to her making no diagnosis and none of them benefiting)

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Doctors behave as if medical knowledge was exhaustive, and infer that symptoms they don’t understand come from mental illness.

Most diseases have a psychological component, but patients are seldom referred to a psychiatrist for treating their heart ache when they get an infarction.

I just mentioned these findings (and others about autoimmunity against the satellite cells in dorsal root ganglia) to my mum, a doctor specialized in physical therapy and rehab. She went into retirement this year and many patients with ME/CFS.

Her reaction: "So fibromyalgia is real now. I have a hard time believing it… I spent my career fighting it."

The difficulty is most clinical diagnoses (and some with specific criteria) will be a heterogenous group of diseases. Some patients with the label CFS may well have real pathology which can be treated, but some will be mostly psychological in nature, and some will be malingerers. Of course diseases without a proper diagnostic test will attract malingerers and then make people question those with a real diagnosis. Part of the problem of uncertainty in medicine.

Definitely, and dealing with malingerers is infuriating.

That being said, when in doubt, I thin that doctors should trust patients (defendants are presumed innocent, patients should be presumed to be sick).

Stiffing the ill to spite possible asshats is a bad societal bargain.

Even if a doctor believes a patient, what are they supposed to do against a disease with no tests and no treatment?

Indeed, why expect any difference between a human doctor and an old-fashioned GOFAI expert system?

Social recognition is better than the gaslighting folks with ME/CFS and other so-called "functional" diseases (with the scare quotes read "we really think you're nuts but won't say it out loud") often have to endure.

Doctors literally say "you're making it up." In those exact words. There is no misunderstanding.

My wife had an emergency department refuse to treat her because they disagreed with an unrelated diagnosis that was in her medical record. Until she admitted that she was "making it up" and didn't have it, so they could "correct" the record, they would not treat her. She ended up having to leave and go to another hospital.

Sometimes it is exactly what they're doing. 15 years ago, shortly after surgery to remove a tumor from my femur, I ran into a physical therapy assistant whom I'd been working with when my doctors thought my leg pain was a soft tissue problem. He said he'd heard about my surgery and was glad I was doing well, and then as we parted ways he cheerfully commented offhand that when I'd been working with him and his supervisor, "I thought you were making it all up!" (I still feel angry about that occasionally, all these years later.)

Statistically speaking, you were making that all up. Of course in your case it turned out to be serious, but think about how negligible the odds of that are when you're seeing dozens of patients a day during your career.

Why would any of those patients make up being in pain, let alone... most of them?

So they can spend money on treatment and waste their time obviously. /s

Opioid addicts frequently make up being in pain in order to obtain prescriptions. That's far less common in physical therapy patients but it does occasionally happen.

https://my.clevelandclinic.org/health/diseases/9833-munchaus...

It's not negligible, BECAUSE you are seeing dozens of patients a day. When you're a doctor, factoring the odds into your diagnosis will screw up your diagnosis BECAUSE you are exposed to the whole probability spectrum, not a quanta of it.

Using "chance of occurrence" is a major logical fallacy for diagnosis identification and can ruin the whole practice.

Besides the other responses so far, consider this: the consequences of mistakes about this are asymmetrical. A doctor could be exactly correct about the probability of "making it up", but the cost to the patient of a missed diagnosis is not balanced by the benefit of correctly dismissing other cases. A conscientious doctor could try to consciously account for this, but there's no feedback making them get it right (and pressures against, in our current reality).

Also, when a patient succeeds in getting a correct diagnosis after trying multiple doctors, the previous doctors generally will not find out about their mistake, so there's a bias against them actually learning the right probabilities: you can expect them to be overconfident on this score.

I am not buying that psychiatry actually helped. With this type of condition, some people get better over time. So those people would have gotten better anyway without the psychiatry. I also think the medical community should also rethink the notion some symptoms are psychosomatic. Why is that true? Because doctors can't spot the cause, so it must be psychosomatic? Maybe the cause is there but undetectable or not understood yet.

I'm not saying psychiatry helped my wife - it didn't, because she didn't go to a psychiatrist. Eventually she got better, as you say.

I think it's unlikely, however, that symptoms are never psychosomatic. If what we think had no effect on how we feel then the placebo effect wouldn't exist

Agreed. And the placebo effect is a good point.

Every disiease has a psychological componnent, and a great part of the placebo effect comes from social status and support.

Being told you're crazy is a net nocebo.

A a few weeks after I had COVID I started having panic attacks. I went up a couple of flights of stairs at work and felt immensely exhausted - way more than I should have, I use the stairs at work all the time. I started feeling like there might be something wrong with me and that turned into a panic attack. (Later, of course, that turned out to be a symptom of long COVID fatigue.)

I was 32 at the time. Never had a panic attack before. Sometimes felt something was wrong but clear thinking and a few deep breaths and I was okay. Not this time.

In the subsequent couple of months I had a few more random panic attacks - once on a highway; I had to pull over.

So I went and saw a therapist. I don't think they actually helped reduce the attacks - the frequency dropped with time, together with the fatigue. Now, two years later, I only have the mildest of attacks (and I'm at around 60-70% of energy). But they did help me calm down, gave me tools to deal with an attack when it happens and reduced my stress around the entire experience.

It was definitely money well spent, and as much as I can tell from being my own carer, clinically relevant.

I have only anecdotal proof, but I believe there is also a link with caffeine.

After getting COVID, I went from being an avid coffee connoisseur to getting extreme anxiety from a cup (I've never had anxiety either). I switched to decaf for 2 years before finally incrementally building my tolerance back up. Several colleagues and random people I've met have had similar issues. It goes away over time, but is very real.

We're doing anecdotes here, so... I think the post-COVID symptoms made me aware of parts of my body I had never had to 'deal with' or pay serious attention (I'm not into sports...). Feeling your heart doing weird stuff in normal conditions, isn't surprising to trigger anxiety and panic. The first time I felt like keeling over after some mild-the-month-before bicycle effort, I fell not only the heart symptoms but sudden fear and anxiety that compounded the situation. I called 911 a week later because I felt very strong and unusual heart symptoms, feeling like a heart attack. Nothing on either ecg, doppler, blood analysis, heart mri, effort test, absolutely nothing - the EMT said at first 'so many calls these days, most looking like panic attacks, poor people suffering with no physical traces of a problem'. ER doc was 'we didn't find anything but don't hesitate next time, it wasn't nothing and even if it's "just" a panic attack we can help'. The problem went away after 6 months of doing frequent/daily light cardio activity...

Holy cow. I'm fairly young and also had weird heart issues during COVID too. Felt like I could feel my heart slow down and get out of rythem a few times over maybe a month.

I went to a cardiologist and did a stress test. Nothing showed up and eventually it also went away. Note, I was a little stressed from work, but nothing unreasonable. Home situation wasn't too bad either.

I've suffered from nearly lifelong depression and panic attacks.

however, about ten years ago my general feeling of anxiety suddenly got much worse. I was able to cope with it using all of my usual anxiety coping skills but it seemed kind of off that everything had shifted. I went onto Lexapro, which helped. But then in 2019 or so things really started getting nutty again, where I'd be up all night with panic, often waking me up in the middle of the night, would be up until 5 am, finally fall asleep, then would have another during-sleep panic attack that would last all day.

Turns out I have a node in my thyroid producing thyroid hormone. I now take a very low dose of medication for hyperthyroidism and my panic-esque anxiety levels are kind of lower than they've been for like my entire life (still need the lexapro though, I am sure that my anxiety issues are not strictly the thyroid node).

Basically it sucks to have psychiatric illnesses that are standalone, but also compounded by other non-psychiatric pathologies.

I'm in the same boat brother. I've also got much better in a year, but the early months were hell.

We really need proper diagnostics for this condition, so that people can be diagnosed and not dismissed or even denied benefits and support.

Here's hoping.

This mirrors my experience very well, except it started about a decade ago for me. Completely out of the blue, I had a panic attack. Haven't ever experienced anxiety or panic before that, and medical investigations found nothing.

Therapy didn't help but sertraline helped me a lot. I still have no idea what the root cause is, and I've never quite been the same since, especially my energy levels.

However, I am at least functional and can hold down a job!

>Because doctors can't spot the cause, so it must be psychosomatic?

No, because the only replicated findings are that stress (and infections) are triggers, believing in a physical cause is a perpetuating factor, and multi-disciplinary rehabilitation leads to improvement in about 2/3rds and recovery in about 1/3rd of patients.

No, your wife _was_ dismissed. Not only that, she was misdiagnosed. And she’s part of a huge patient population that gets misdiagnosed routinely. She has every right to be angry. Misdiagnosis is not benign. It sends you down the wrong path and costs you years.

What should the doctor have done instead?

By all accounts, there is no way to test for or to treat CFS. Assuming it is real, and OPs wife did have it, what is to be done? The doctor ruled everything else out, and now there is nothing more they can do.

Say that then. "I don't know what is causing this. I've ruled out everything I can, you may have CFS or psychosomatic symptoms, but I can't test for either. Here are some resources on both. Psychiatry has helped x% of patients with your symptoms, I can't guarantee it will help but here's a referral."

Much better to say "I don't know" than to give a confident diagnosis just because you've run out of things to test for.

There's a HUGE difference between saying "we don't know what's wrong and we're sorry but we can't help with medication, but sometimes there can be mental things that help" and "we've diagnosed you with a mental issue, your body is fine." The latter is way more dismissive and angering, and assumes that we know a lot more than we do about the physical systems in the body.

Neither of us were in the room, but it sounds like the doctors did the former. They diagnosed with FND, a real physical disease (although kind of a catch-all diagnosis with no tests or treatment, like CFS), and recommended that therapy may help.

There is no simple lab test for CFS, and there are no miracle treatments, but it can be diagnosed, and some of the symptoms can be treated.

For diagnosis, there are clear diagnostic criteria, including the presence of post-exertional malaise, which is very easy to recognize simply by talking to the patient. (“I went grocery shopping last week, and I didn’t think I’d overdone it, because I felt okay that afternoon, and I had a full night’s sleep, but I woke up the next day feeling terrible and I could hardly get out of bed all day.”) There is a lab test that can be done for it, but it essentially consists of making the patient “crash” by exercising two days in a row and observing how much worse they are the second day. It’s not recommended for diagnosis because it’s harmful (it can take months to recover from a bad crash) and, again, not necessary.

For treatment, there are a few supplements and prescription drugs that can help each of the symptoms. Many patients experience dysautonomia (it’s in the diagnostic criteria) and there are several treatment options for that (beta blockers, drugs to raise blood pressure, drugs to encourage sodium retention, and others, in addition to non-pharmaceutical options like increasing salt and water intake). The fatigue itself is harder to treat, but a few supplements have been found to help. Cognitive dysfunction is a major problem that is definitely treatable (with ADHD and dementia drugs); that alone is enough reason to get diagnosed and treated.

> My wife felt dismissed and was really mad about it, but the reality is that some sets of symptoms are psychosomatic, and psychiatry can help,

Depression is a comorbidity of chronic illness. It's hard not to become depressed when dealing with an unexplained illness.

Psychiatric treatment can reduce the contribution of the comorbid depression, which can create a net improvement for these patients.

Too many patients with chronic illness will refuse any psychiatric treatment because they are resistant to the idea, but they end up suffering more than necessary.

When doctors can't identify or treat the core illness, they can at least address comorbidities and work on increasing quality of life. Psychiatric care is at the top of the list for helping people's quality of life in these situations.

My wife was recently diagnosed with fibromyalgia and the doctor explained it exactly this way. It literally just means "nerve pain". There were no markers for rheumatoid arthritis so they just give it a label that is essentially just a placeholder. They can only treat symptoms anyway so it doesn't matter. I've got narcolepsy which was identified decades ago, but the mechanism was only isolated about 20 years ago and there's no direct treatment. Only ways to reduce symptoms. My condition definitely originates in the brain and can be treated with the same kind of CNS stimulants they give to people with depression or ADHD. So declaring a condition to be "in your head" isn't really synonymous with it being imaginary. For narcolepsy, most patients have a very explicit emotional trigger for symptoms. Emotions trigger neurotransmitters and neurotransmitter failure is the specific mechanism for causing the syndrome. So you can say it is most assuredly "psychosomatic" without that connotating it being some kind of emotional weakness. Your brain is part of your body. It controls thought, perception (including pain), emotion and literally every physical process beyond basic reflexes. Malfunctions in your brain can do all sorts of unpredictable things.

Fibromyalgia is more than just a placeholder, there are specific symptoms associated with it (such as the presence of myalgia in multiple locations on both sides of the body above and below the waist), it's just that it's severely understudied, not much is known about the cause, and it's pretty much diagnosed by exclusion.

Fun fact, the drug Xywav which has been FDA-approved for narcolepsy (and ideopathic hypersomnia) has also been shown in studies to help with fibromyalgia. They even sought FDA approval for that but the FDA rejected it on the grounds that there are too many fibromyalgia patients and therefore the risk of abuse is too high (the drug is related to GHB).

The problem really is the stigma associated with mental illness as opposed to other kinds of illness. There are clearly mechanisms through which psychiatric effects manifest as real physical symptoms. If there's no obvious physiological cause to symptoms, working with it having a psychiatric basis seems perfectly reasonable. That doesn't mean we shouldn't try to understand more about it though.

Person with Schizoaffective Bipolar Disorder here:

You know, doctors told me for years that the pain in my chest and back was all because of my mental illness, even though my brother and mother both needed spinal surgery for Anklysoing Spondylitis by the time they were 60.

They dismissed me till I told them I wanted an MRI of my spine and chest and there it was, Non-radiographic axial spondyloarthritis, the precursor to AS. So not I can treat it so it does not process into AS. They all told me there was " physiological cause to symptoms".

There is a HUGE stigma in medicine against any pain in people with mental illness, it is their best excuse to not even look. That is why there is no progress.

It is amazing how doctors continue to get away with gaslighting their patients because they refuse to believe them/look at family history, even to the point of not even attempting to rule those things out.

There is no evidence for functional neurological disorder, it is simply a hypothesis. As a diagnostic category it is essentially a "god of the gaps" construct. Remember also that the name is a re-branding of what used to be called conversion disorder (previously known as hysteria), that was found to be an acceptable term to patients.[1]

It's heavily published on and widely accepted as valid by neurologists, but that does not make it true.

The concept with FND is that there is no identifiable structural pathology, but that the neural circuits are dysfunctional, and that this can be fixed with things like cognitive behavioural therapy. This is typically framed to the patient as "the hardware is completely OK, there's just a problem with the software." (As most of this audience would recognise there is very little overlap between how brains work and how computers work.)

However, more advanced imaging techniques, such as 7T MRI are now showing structural abnormalities in these patients, which is a pretty fundamental problem for the above hypothesis. An attempt to rationalise this by FND proponents is made here.[2]

A recent example involves a 10yo child who developed a movement disorder following Covid.[3] Typically these would be diagnosed as functional movement disorder [4][5][6] and psychological therapy advised. However this group showed that in fact it was due to a neuroimmune pathology, with auto-antibodies forming that targeted some portion of the basal ganglia. The patient recovered completely with immunosuppression.

[1] https://www.bmj.com/content/325/7378/1449

[2] https://neurosymptoms.org/en/faq-2/can-people-with-fnd-have-...

[3] https://link.springer.com/article/10.1007/s00415-023-11853-5

[4] https://movementdisorders.onlinelibrary.wiley.com/doi/10.100...

[5] https://cp.neurology.org/content/11/5/e686

[6] https://adc.bmj.com/content/106/5/420

Thank you for this excellent synopsis. One would think rheumatologists would be curious how many people with these symptoms could be helped with immunosuppression. Alas.

Said by no neurologist ever... This reflects a complete lack of understanding of the diagnostic criteria. FND is not just a diagnosis made when it doesn't fit anything else. If you actually understood the diagnosis and still felt like it was BS for some reason, it would be because you would be arguing that patients are intentionally feigning their symptoms rather than "the diagnosis just does not exist at all" or that symptoms can be explained by an immunological or other medical cause. Just ask Dr. Google about the Hoover's sign or tremor entrainment and once you understand them, the corticospinal tract, and the most basic neuroanatomy of movement, and then see how big of an idiot you look like for posting this.

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