About the issue with it hasn't got a name: wouldn't be a human biologist be interested in researching this thing? Plus getting his or her name to name the disease?
I know more about the pediatric cases, but fwiw... There are TONS of 'conditions' that don't have a name (quotes only because that may not always be the right term).
Sometimes it's not that simple – sometimes it's a matter of doctors trying to see if it's actually an unusual presentation of an existing condition. That's the usual focus for the first few years of dealing with a rare condition: the search for a diagnosis. You may have a dozen symptoms, and a given condition may overlap with eight of them, and with six of another, and with ten of another, but something stands in the way of getting a diagnosis.
Eventually, you may have exhausted your options for diagnoses. None of the existing conditions fit what you have, for one reason or another. At that point, the best you can hope for is to find other people who match what you have. Get a small cohort together, and maybe the NIH will fund a grant through the Undiagnosed Diseases Program or something.
It's long, uncertain, and frustrating. We're working on stuff to help folks like these (though kids, mostly) over at Kinsights, and it's heart-wrenching to hear about and watch this process unfold.
Did you take flouroquinolone or other bacteriocidal antibiotics, or take statins/steroids? These things are known to cause mitochondrial disorder which can manifest in lots of ways but the predominant similarities are pain, fatigue, and improper response to exercise (it taking a toll on you as opposed to making you stronger).
Edit: They're also pretty much ignored/under-represented by the medical community.
I suppose me saying "known" was somewhat misattributed because they're known by researchers, not by doctors.
I'm sorry, but the writer wrote a piece about how his sickness doesn't have a name, how he is REALLY REALLY sick, to the extent of going to the hospital 3 days a week. And your first comment is to essentially try to diagnose his problem as something (seemingly) relatively simple?
Really?
Edit: It's extremely unlikely that with his state, he hasn't known of everything we could have suggested. And since someone is saying that I'm appealing to authority, I'm not. I didn't mean to say that the doctor knew best, but rather him, the writer, have done his research and knew about his condition.
And as for whether the comment I'm replying to is "helping". That's the point I'm trying to make. He's helping the same way as the writer's roommate is "helping".
The point I was trying to make is that, half of the post was about how hard it is for people outside himself to know about his condition. And to my interpretation, it's better to just take his words. With that in mind, it feels incredibly ironic that the first comment in the topic is essentially someone trying to guess what's the issue. And no, I'm also not trying to help, because that's also the point: he doesn't need my help, there is nothing I, an internet stranger could have helped. And from the tone of the post, I wasn't aware that he was looking for information, merely expressing his frustration. I'm sharing my sympathy with him, and if we meet one day, I've love to buy him a beer. As of now, I'd just take his words, and shudder when realizing there are many type of odd disorder out there.
I realized the tone wasn't necessary, and I apologize for that.
In the book "What do you care what other people think?" there's a story where Feynman had a good idea that his wife might be suffering from tuberculosis, but he restrained himself from saying anything because the symptoms were so simple and obvious that he figured the doctors had already ruled out tuberculosis as a possibility. His wife died sometime later because she was diagnosed and treated for it too late.
I don't think relying on professionals to be perfect is a good idea.
That doesn't match my memory of the book, nor Wikipedia's short mention that when they married they knew she had it and the prognosis wasn't great. More significantly, she died in 1945, when the first drug that could touch tuberculosis was still in the very early experimental stage.
I remember it vividly. The story was about a doctor running up to another doctor, in front of Feynman's wife and her family, and was excited to the point of being rude, asking things like "Did you check for X?!" where X was a symptom of tuberculosis that Feynman had also noticed. The doctor was admonished for his behavior and for "making the patient feel uncomfortable" and was brushed off, even though he was on the right track and would have diagnosed the tuberculosis sooner. Feynman could have stepped in and said "Well, actually, I also noticed X," but the social pressures of the situation persuaded him to stay quiet, which turned out to be regrettable.
It probably isn't in Wikipedia because it isn't in Surely You're Joking, which is freely available online, whereas you have to buy the other book which has this story. But the story is definitely in there.
As soon as I hear about [the disease] I go down to the library at Princeton and look up lymphatic diseases, and find “Swelling of the Lymphatic Glands. (1) Tuberculosis of the lymphatic glands. This is very easy to diagnose…”—so I figure this isn’t what Arlene has, because the doctors are having trouble trying to figure it out.
...
The county hospital gave Arlene all sorts of tests and X-ray treatments for this “Hodgkin’s disease—?” and there were special meetings to discuss this peculiar case. I remember waiting for her outside, in the hall. When the meeting was over, the nurse wheeled her out in a wheelchair. All of a sudden a little guy comes running out of the meeting room and catches up with us. “Tell me,” he says, out of breath, “do you spit up blood? Have you ever coughed up blood?”
The nurse says, “Go away! Go away! What kind of thing is that to ask of a patient!”—and brushes him away. Then she turned to us and said, “That man is a doctor from the neighborhood who comes to the meetings and is always making trouble. That’s not the kind of thing to ask of a patient!”
I didn’t catch on. The doctor was checking a certain possibility, and if I had been smart, I would have asked him what it was.
...
[A long time passes, and Arlene's condition worsens. The doctors finally perform a biopsy to figure out what's wrong.]
...
When I got to Arlene's house, she showed me the report. It said, “Biopsy shows tuberculosis of the lymphatic gland.”
That really got me. I mean, that was the first goddamn thing on the list! I passed it by, because the book said it was easy to diagnose, and because the doctors were having so much trouble trying to figure out what it was. I assumed they had checked the obvious case. And it was the obvious case: the man who had come running out of the meeting room asking “Do you spit up blood?” had the right idea. He knew what it probably was!
I felt like a jerk, because I had passed over the obvious possibility by using circumstantial evidence—which isn’t any good—and by assuming the doctors were more intelligent than they were. Otherwise, I would have suggested it right off, and perhaps the doctor would have diagnosed Arlene’s disease way back then as “tuberculosis of the lymphatic gland—?” I was a dope. I’ve learned, since then.
Doctors miss things occasionally. Sometimes they might not have the full picture. If he's going to the hospital three days a week and they don't know what's wrong with him and haven't published his case in a journal, it sounds like they're doing treatment for what would otherwise kill him rather than diagnosis on the root cause of the illness.
Doctor's pretty much dismiss flouroquinolones as potential causes for these kinds of problems, which is part of why I asked. I also asked because I've been suffering similar symptoms, and have been in the ER multiple times in the last couple weeks. The only thing I could possibly think of that spurred this on was getting a nosocomial infection 3 months ago and taking Ciprofloxacin for it. I had bad tendon pain and nerve pain while on the drug but it sorta went away after a week. 2 1/2 months later, it's back full force and I'm getting very physically weak.
I apologize for the tone of my first comment. I didn't mean to direct that personally to you, just as a frustration to the common reaction of "helping".
As to the question you made, the writer said that he has been sick for not a few weeks or month, but a decade. And when I first read your comment, it's practically saying to me "Are you taking steroids while being sick in the last 10 years?" - again, probably not a charitable reading of the comment as I could have made.
> He's helping the same way as the writer's roommate is "helping".
Madmallard suggested a possible cause that matches the symptoms and also points out that doctors tend to ignore it. The roommate more or less suggested OP try not being sick.
I took 4/10 doses of levofloxacin 4 years ago, and it was just horrible. The symptoms were very similar to what OP described. Mine cleared up 90% after about a year, but continue to persist in small ways. I had an excellent rheumatologist who helped immensely through the situation (he had seen a lot of joint and tendon issues in his long career), but most doctors that I went to see dismissed the suggestion outright (including the GP that prescribed it).
I'm not sure I understand. Any of it... How can he be sick for nine years and the doctors don't have a name for what's wrong with him? Is it one medical condition, or does he suffer from depression and poor liver function and malabsorption? What kind of government aid is he seeking, and why is he being denied (as opposed to studied to find out what's wrong)?
Lastly, who is he? I googled Forgot Amnesia and didn't find anything of note. Not that his identity has anything to do with his illness or his struggle, but it would help put some identity and background to the story. Is he well known? Is he rich and famous? Is he poor and struggling? He says he's a writer and an indie dev, has he done anything I would know of, or does he have a storefront where I could buy something to help his finances?
For a story titled "Read all about it", it doesn't really say much. I feel like I want to help, but now I just feel bad for someone I don't know and can't do anything about.
I made a more detailed comment downthread, but in the pediatric rare disease world, ten years is generally considered a fairly typical amount of time before one can finally get a diagnosis, and that's for diagnoses that are actually known/identifiable/understood.
The easiest way to explain this is that doctors typically don't want to diagnose life-long conditions if they've never seen them before. So your family doctor will send you to an internist, who will send you to an internist at the local academic medical center, who sends you to three specialists at the same medical center, who don't know what it is. Then you get a referral to someone in another city who specializes in something someone thinks it might be – that guy has diagnosed 10 people with this rare disease. You fly out, and he says "nope, you're not it."
Really? Sickening? There are any number of candidates available that won't require special consideration to manage a disease, so why should someone solely take on the charity burden of giving this fellow a job?
No charity is required. Infact it is profitable to hire this guy. What is required is getting rid of pointless constraints.
Part time? You get a talented developer for 30 hours a week, paying the same hourly rate as everyone else.
Working from home? Depending on the role he may be even more productive than those in the office. I have just two more words to say about it: 37 Signals.
> No charity is required. Infact it is profitable to hire this guy. What is required is getting rid of pointless constraints.
Pointless constraints like being a reliable employee?
> Part time? You get a talented developer for 30 hours a week, paying the same hourly rate as everyone else.
Why would you want a part time engineer if you can have an (at least!) equally talented full time engineer?
> Working from home? Depending on the role he may be even more productive than those in the office.
If you want an employee that can work from home, there are plenty of them that won't be sick half the time.
> I have just two more words to say about it: 37 Signals.*
What does 37 Signals have to do with anything? There's nothing to indicate that cargo culting a small aspect of their company's working model has anything to do with creating a similar outcome.
Who said he is unreliable? Maybe he is, in which case that is a different matter.
I find that 'work from home' jobs tend to pay less and therein lies the balance. The advantage to the employer is to pay less for the employee and save on office space. The advantage to the employee is obviously the flexibility that gives them and not needing to commute.
30 hours is part time but it isn't like asking for 10 hours a week. It is almost full time (40hours). I hear a lot on HN and other places online about American companies requiring lots of hours of their developers even though they are supposed to work 40hours. So that could be the difference we are seeing. In Europe/Australia this is not expected generally, except in certain industries like Finance.
37 signals are successful despite letting people work from home. I had a previous employer who isn't famous or anything but had many developers work from other countries with time zone challenges. It can be done.
In a pure, zero-charity, capitalist world there should still be jobs for people with diseases like this who can work. They have something to offer and the market will meet a fair price on it. It may be a lower price than a fit person, but there could still be a beneficial situation to both the employer and the employee.
This is sickening: "I’m suffering from chronic pain, and there’s no way I can afford the $1,000 or so to get the physical therapy I need to manage this, much less the $15,000-30,000 I’d need to get the real treatments to fix my body."
It's not really sickening or surprising that he's having trouble getting a job though. I mean his writing seems decent enough, but is there really much demand for video game reviewers? Let alone the fact that he has to work part time, and can't be reliably counted on to attend events or even stand in front of a camera.
It would not surprise or sicken me if a perfectly healthy video game blogger couldn't find a job. This guy's situation sucks, but society and/or the government should be helping him, not some charitable employer.
It sounds like you actually have Chronic Fatigue Syndrome - everything you say is very typical of CFS. I actually suffered from CFS myself, but have now fully recovered - I run my own business, and I'm a private pilot as well.
CFS is very treatable and you can recover from it. Unfortunately there is a lot of BS and quackery out there, making it difficult for patients to get the right information. Feel free to email me at cpncrunchhn@gmail.com.
Yes, it can be. Some people have a lot of pain, others have none. The term ME tends to be used when pain is present. Also fibromyalgia overlaps to a very large extent with CFS, and pain is one of its main symptoms.
The problem is that all patients have slightly different symptoms and there is no definitive test as yet, so it makes it difficult to diagnose.
I'm reading into this, but I would hazard a guess that it appears he plays a lot of video games or surfs the web/blogs (he seems to have a lot to write about games, etc), and his roommates probably see this and react negatively to it, especially when he complains about being tired all the time. It's not normal for good people to act like jackasses, so it feels like there's something more to this story than just them not understanding that he has an illness.
Out of curiosity, if there is no name for this illness he has, what sort of treatments does he do that require 2-3 trips to the hospital per week? Is he getting dialysis or blood transfusions?
You're kind of proving his point, aren't you? Your default assumption is that his roommates are probably right. What if he had crippling fibromyalgia? Or some horrendous cancer?
> especially when he complains about being tired all the time
He never said he complains all the time. He says he is tired; he did not say he complains that he is tired all the time. So why did you immediately conclude he must complain all the time?
See, I read the point of the post as this: when you have a disease with no name -- no one can classify you as having a thing. You just have symptoms. I read his point as being that people sympathize with those who have a disease, but if you can't name your disease, it's almost as if you didn't have one. And hence his roommate who decided it'd be awesome to ride their exercise bike in his room as a form of punishment for not having a better sleep schedule. His roommate couldn't sympathize.
Here's an exercise: you know how recent security exploits all have fun little names? And how those exploits have all gotten fairly extensive press mentions as a result? Do you think they would have had the same if they were left nameless, as most exploits in the past were?
Actually I didn't say his roommates were right, I said there may be an explanation for why they are behaving as they do, which is a misunderstanding of his situation based on the fact he possibly plays a lot of video games or surfs the web to blog, and yet says he doesn't have any energy to do anything. I never said he wasn't sick. But his roommates could misunderstand the nature of his illness, and hear him complaining about his condition, and then see him play video games while sitting in bed. This could easily explain why they don't believe him.
He admitted himself that they are great people, and the fact they are behaving so strangely to him indicates to me that there is some other dynamic going on that we don't have an explanation for. The examples of the roommate taking an exercise bike into the room while he's sleeping is simply bizarre and toxic, if these people are as good as he says they are there must be some other explanation. There's always two sides to every story. Is he late with his rent because he doesn't have money, but always buys the latest video games? Is he playing games all night long because it doesn't take much energy, but does he not do his dishes because he's too physically tired? There's a lot of dynamics going on and we're getting a very 1 dimensional analysis of his roommates that he chalks up to them not believe he is sick.
He admitted himself that they are great people, and the fact they are behaving so strangely to him indicates to me that there is some other dynamic going on that we don't have an explanation for.
An obvious possible explanation is the fact that a lot of otherwise-good people have a hard time believing in illnesses they can't see.
Ask anybody with an "invisible" malady and they'll tell you that some depressingly large percentage of the people they care about don't believe they're actually sick.
When he's complaining about a disease with no name, it might be worthwhile to provide a bit more medical background about the progress of his illness. Like many 'woe is me' stories on the internet, this left me with a lot more questions than answers and reading it ultimately proved to be a waste of my time. I feel sorry for the author but found his account of problems too incoherent to puzzle out, apart from the fact that he feels terrible and can only work about 30 hours in a good week. Maybe he needs to apply for disability and spend his limited uptime working on small-scale games rather than big commercial ones involving massive workloads and crunch time etc.
The post isn't about explaining his disease. That's just a little background info. It's not trying to defend being sick all the time, since that's really not something he should have to do. The post is just describing what it's like to be that sick all the time.
I agree! In the same paragraph he goes from saying '[my roommate] once screamed at me, calling me “lazy”' to 'these people are, in most aspects of their lives, good people. Honestly, couldn't recommend them enough'.
He also talks about suffering from fatigue so severe that he's 'too exhausted to sleep' and then explaining that he was able to: 'work part time, attend school full time, and do freelance writing...50 or 60 hour work weeks, effectively'. It's all a bit strange.
I'm curious about HN's fascination with health posts - I've seen quite a lot pop up on the front page. Especially things about depression and unusual illness.
(I hope the points/questions I've raised don't make me sound like a douche.)
Clean up your fucking diet. Cut out everything even remotely inflammatory. Drink a shitload of water. Eat grassfed. Meditate. Coconut oil. Tumeric. Blood tests for kidney, liver function.
Get your HORMONES checked. Testosterone, including free testosterone.
Maybe folks at MetaMed could be of some help? The company goal is to help people with rare&hard to diagnose problems by focusing a team of specialized researches on sifting through available medical knowledge.
This is a very unfortunate story, and it's also very unfortunate that the author hasn't been helped by medical science. The author's subjective suffering should not be up for debate. Idiopathic pain and fatigue disorders are impossibly frustrating to diagnose and treat, and have a tremendous negative impact in a person's quality of life.
That said, this post has many hallmarks of pseudoscience, and I'm afraid that the author may be invested in pseudo-scientific diagnoses to his own detriment.
For example, he is very specific about the genetic origins of his disorder and even enumerates three very specific downstream effects of his genetic polymorphisms (low catecholamine levels, 'toxin' retention, and high elimination rates of various minerals). However, any genetic disorders that are well-understood enough to detect and enumerate like this would absolutely have a name and associated diagnosis.
Furthermore, the specific factors he lists (low serotonin and dopamine, high toxin retention, high mineral elimination) map more closely to pseudoscientific principles than they do to actually medical conditions. For example, his claim that his body specifically stores 'toxins' such as benzene and mercury while 'normal' people's bodies eliminate the same toxins is a classic pseudoscientific explanation that has no basis in reality.
Again, I'm not suggesting that he isn't suffering or that his symptoms aren't actually happening. But the amount of pseudoscience in this post makes me concerned that he is moving in the wrong direction or even entering a cycle of worsening his own symptoms with his pre-occupation with pseudoscientific diagnoses and insistence that mainstream medicine can't understand his symptoms.
This is a surprisingly common scenario, common enough that it has its own diagnosis: http://en.wikipedia.org/wiki/Somatic_symptom_disorder The greatest hurdle in treating a somatic symptom disorder is convincing the patient that mental health treatment will be beneficial to their symptoms, which are largely physical. As a consequence, many sufferers turn to alternative medicine which provides comforting but largely false physical explanations for their symptoms involving disorders such as high toxin levels, low mineral levels, and low serotonin and dopamine levels, which is precisely what the author insists is causing his symptoms.
Pseudoscience is an un-scientific practice which people _generally assume_ to be scientific. Psychology most certainly applies, and I think the author's conclusions are the best he's got at the moment because science cannot help him.
Can you share your definition of pseudoscience? You are clearly using quite a different one from the rest of the commenters here. Under the usual definitions, philosophy is neither science nor pseudoscience, and psychology is firmly in the realm of science.
Pseudoscience is a non-scientific practice which people ~generally assume~ to be scientific.
There are many areas of philosophy which people believe are done via science. I'd say metaphysics is a pseudoscience because people assume it's akin to physics.
Most modern psychology (not all of it, and not psychiatry) is based on Freud and Lacan's psychoanalytic practice. This practice people generally assume to be scientific because their health insurance covers it, but it has no scientific basis.
I'd also say some people assume political theory to be scientific, as many mistake it for economics and sociology which ~are~ scientific. Political theory is not.
EDIT: Aesthetics and philosophy of mind are other areas which people mistakenly think involve neurobiology, but they don't.
I think you may be behind the times when it comes to psychology. Modern psychology looks down on Freud and isn't based on it at all. As of a couple of decades ago, parts of psychology would probably be well classified as pseudoscience, but that isn't the case anymore.
The ~generally assume~ is an interesting bit. Dictionary definitions of the term typically go with something more like "practices which claim to be scientific". Its not terribly fair to philosophers to call them practicers of pseudoscience just because the layperson sees "physics" and assumes "metaphysics" must be science.
But, then again, life isn't fair. Metaphysics is a pretty misleading name.
Modern psychology looks down on Freud almost entirely because of the advancements of Lacan in the 60s. Despite this, psychology is still ~based~ on Freud.
You're right about the "generally assume" part. I had my definition wrong. But I still think it pertains to psychoanalysis specifically, because Freud definitely advertised his methods as scientific.
I like that you're debunking Psychology for what it is, but if you still think Economics is a science, you're not quite there yet. For something to be a science it needs to make falsifiable claims. Nothing in Keynesian economics is falsifiable, and in fact following the news and watching them pulling excuses out of their hats is an endless source of entertainment to me.
I agree with you that the hallmark of what is "scientific" is "falsifiable claims through inductive reasoning."
But if this is the case, then economics and sociology are both pseudosciences; they're wrongly called "social sciences" though they are not falsifiable!
As an Austrian economist I consider economics to be purely an a priori deductive process.
However, positivism pushes people to make a science out of everything. So most people, even here at HN, want to believe economics is a hard science, and that you can use mathematical formulas to know in the future how many people will be out of a job.
At the very least, it's funny watching otherwise atheists struggling to justify the deeds of their Earthly gods.
I've got to second that it's probably worthwhile for the author to check out and consider the wikipedia article. I pretty much gave up programming for six years, utterly convinced that I had a physical disorder causing me constant pain in wrists, hands, elbows, shoulders, etc. I tried all kinds of physical approaches during that time, many of which would appear to impact it in one way or another, but none that really helped (instead it was that my worrying more or less impacted my essentially mental disorder that manifested somatically). A key aspect to it is that there is no distinguishing the symptoms from actual physical sensations. I could have started making progress with my own issues years earlier when someone brought up this possibility to me, except that I felt like what I was experiencing was 'too real' to be mental, or something.
Medical practitioners outside of mental health seem relatively unaware of these disorders, but if you speak with a psychiatrist, you may receive some useful info. It's worth a shot.
This is a good book on going about recovery. You'll have to forgive the title; the reason it's there is the physical site for these disorders tends to follow trends in society, and at the time of writing back and neck pain were the most common occurrences (it's consistent with the theory behind these disorders that such trends would exist), AND a very large proportion of chronic back/neck pain turn out to be psychosomatic.
http://www.amazon.com/Rapid-Recovery-Back-Neck-Pain-ebook/dp...
It's also interesting to see the page for the Seattle Repetitive Injury Support Team, which (after a majority of their members solved their problems) now feels convinced that the most troublesome, persistent repetitive strain injuries are psychosomatic. http://www.satori.org/rist/
You can also see the extents that I went to to avoid physical activation of my symptoms, here: http://tiledtext.com
That's how convinced I was that they were physical, though now I have no doubt about their mental origin—and I can use computers almost completely freely now :D
Holy cow. It's brave of you to share your personal experience with this. It's great that you are feeling better, and awesome that you are willing to use your mistakes to help someone else.
I'm trying not to see everyone's disorders as nails for the hammer I found—but I have a definite interest in raising awareness, seeing both how damaging and how widespread these issues are.
Also, as a kind of warning, I can say the literature available is kind of mixed: there are good recommendations on methods for recovery, but the theory behind a lot of it is quite bad: amateurs seeking explanations for the efficacy of their methods. The most popular expositor, Dr. John Sarno, grounds his theory in Freudian psychology. The situation is probably better when speaking with practitioners in mental health, but maybe not by so much: my psychiatrist was utterly unsurprised—was nothing new to him. That said, books on the subject seemed more practically helpful that recommendations from him.
I am skeptical that his explanations are completely pseudo-scientific and have no basis is fact. If these explanations sound unscientific, I think it is more likely that it from the author simplifying the explanation of his problem, and perhaps he is confused about or is miss-communicating what his doctors have told him.
One person, who I was living with to shorten my commute to the hospital, which I was visiting three days a week for treatment ...
Getting treatment at a hospital implies that doctors identified some known medical condition they could treat.
My body retains toxins—and not, like, generic “toxins” that health nuts talk about, I mean real toxins, like benzene and mercury.
If there are tests for benzene and mercury, this could indicate a medically detectable problem. He also seems to dismiss the pseudo-scientific explanation of toxins.
My body rejects things it should keep, like magnesium. Especially magnesium. Also zinc.
Again, if there are tests for this, there might be some truth to this.
It is unclear how much of his description of his medical problems is known for certain, or how much of this is speculation. He admits that he "barely understand"s it. I would like to hear a medical explanation for why his explanation is impossible or problematic before concluding that it is simply pseudo-scientific gobbledygook.
As someone who also suffers chronic health issues with no full relief (yet) from the mainstream/alternative/mental health fields, I would like to just toss out this out for the original poster.
You should really look deeply into your diet and do a lot of research. This site: http://selfhacked.com/ is the first I've come across that has begun to enable progress for me. For example, I found out about longvida curcumin from it, and it's been the single most helpful thing I've ever taken (pharmaceutical or natural) to help with my inflammation issues.
Everyone is different; some people's issues may be psychosomatic (for me, my issues begin in the GI tract and cause issues throughout my body), but as someone who's run through the system, it really illuminates just how little modern medicine really knows about the body.
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(disclaimer: I don't know if this corresponds to what the author has been doing, it's based on my own personal experience and by now ~15y struggles with something similar--thankfully minus the pain he describes)
The thing is, if you've had nine years of battling these symptoms (that are mysterious and won't go away), you've had time to have go at all of the approaches you name. Try them one by one, in combination, note what seems to work, psychological/mental, physiological, dietary, environmental, natural, pseudo-scientific, alternative, magical, religious, (quasi) pseudo-religious ... you name it. You become an expert at yourself, but that's super hard because you are most biased at this topic (step one: keep a diary). Obviously there will also be placebo effects (which I hope we all agree do have tangible medical effects), and sometimes the pseudoscientific-treatment-that-doesn't-work will have better placebo effects than the medical/scientific-treatment-that-doesn't-work. Either way, as long as you keep moving, keep fighting, and keep a clear head about it, you'll keep learning, even from the things that are on the surface bullshit (and sometimes you just need a break and try something that couldn't possibly work).
I too hope that indeed this person is not stuck in a cycle of pre-occupation with one particular thing, but he is just describing his most current working-theory in the continuous string of attempts.
Wow, a lot of the replies here are so typical of what genuinely sick people experience every day. You don't need to posit a cause, you don't need to suggest cures and you don't need to critique his lifestyle.
The point of the article is not to try to explain all of that shit to you, but to try to make you understand what it's like to be that sick all the time. Try to take in that message first, and when you think you have the slightest idea what it's like to live like that, maybe you are then qualified to add a response.
>Try to take in that message first, and when you think you have the slightest idea what it's like to live like that, maybe you are then qualified to add a response.
How ridiculous. Just because a person isn't suffering or doesnt have a true understanding of the same agony as the blogger, doesn't mean they are not allowed to offer help.
Whats so wrong with people trying to help?
Should we just say - "Thanks for the insight. Now back to my own world"
Because most of the 'help' is in the form of unsolicited advice, well-intended as it might be, and tends to be naive, unhelpful, disheartening, demotivating or downright insulting.
OP outlines what that feels like:
"These people are, in most aspects of their lives, good people. Honestly, couldn’t recommend them enough. But where my illness is concerned, they felt they had license to act like complete jackasses because they couldn’t understand what I was going through."
Sure, anyone can help, but very few of the comments on here are helpful.
As someone with numerous debilitating diseases myself; the whole thing just doesn't ring very true with me. It was a 6 year process of being moved from specialist to specialist and every test you can imagine being run to understand what was wrong with me.
During that whole time almost everyone I encountered was very sympathetic and understanding.
It is also difficult as a patient not to be jaded. There are "patients" out there trying to scam the system that just want some doctor to sign a disability claim so they can collect a check without getting a job. I've met numerous individuals where this is the case. Then I see the doctors and they keep telling me that I should consider going on disability or find a less stressful line of work, because of my health. They tell me that it is only a matter of time before things get so bad I will no longer be able to make a choice.
I have a friend that has terminal cancer who plans to work until he dies. There are plenty of desk jobs; if this guy can sit up playing video games and such; he can likely hold down a job.
What's the best way to deal with something like this as a friend of someone with something remarkably similar?
I have a close friend who's always going to see specialists with some ailment or another. One of the things he has is low magnesium and zinc just like this author. He's also suffered from bouts of unexplained amnesia (is that where the author got the name for his blog from? If so maybe they actually have the same thing!?). His sleep schedule is completely screwed to the extent that i hardly see him and he never gets sunlight. He has serotonin and dopamine issues. I actually checked the blog in detail to make sure it's not the same person. It isn't. Just a weird coincidence.
He's never been diagnosed with anything specific either.
Like the friends of this guy in this story I honestly do suspect he is lazy. I see him playing 100+ hours a week on his steam profile and he plays more than just steam games. He's currently well into his 30's and he's missing out on life.
I actually don't know what to do. I honestly feel that tough love would help him more than anything. In this article this guy says his friends keep him up saying “You need to force yourself to have a better sleep schedule.”. I'm tempted to do the same for my friend to try and get him into a sensible sleep schedule. I guess that's wrong but i can completely understand it.
Leaving it at status quo is unacceptable in my opinion. Even with a disability he's still not making the most of life - the ridiculous sleep schedule where he never see's the sun has to stop. Giving him time to sort his shit out doesn't work. He's been like that for 15 years now.
How another person lives his life is fundamentally his decision, and it is not your responsibility to fix him. Your frustration with him is your problem, not his. At first blush, I would recommend either accept him or walk away, for your benefit and his.
Sounds a bit harsh, i think the OP is looking for advice on how to deal with it. Saying accept it or walk away is not really adding to the conversation.
My suggestion would be to start to talk to your friend about how you feel about his/her situation. Try and get an understanding of just how they are feeling.
Dont just come into a conversation with all your advice ready to go because it will make your friend back off.
Be prepared to spend sometime to get to understand the underlying causes behind his/her need to shut down and not live life.
There are probably some deep seated fears and stresses which are causing him/her to be this way.
Walking away and just turning a blind eye to them is not going to help anyone.
That's such a bullshit thing to say. We're talking about someone who literally won't survive unless they change their behavior. He's unemployed, has no government benefits available to him and those around him aren't going to support him forever.
So, I'm going to assume we're talking about a real condition here. This is because that's the first thing you can do: believe your friend when he tells you he's sick. He probably has doctors, family members, and peers constantly not believing him. Just having someone not question it can help a lot.
Second, you can't force him to change his life around. If someone honestly believes something beyond their capacity (physical or mental), you're not going to be able to coax, reason, berate, intimidate, or threaten them into doing it. What you can do is inspire them. Give them a reason to wake up just a little sooner, like a shared activity that you both enjoy. "Let's have a match of <X game> before I go to bed tomorrow", or maybe "I'm making X for dinner, I'll make extra for you if you're up". Try something like that.
Small steps are best to start with. Trying to force someone in a big step will probably cause a panic reaction. A confrontational approach will probably do the same thing. A panic reaction is not what you want.
As a person with over a decade of life (16-28) characterized by health issues, this resonates. It can get better. I've been mostly normal for 3 years and I'm well-treated, although YC/HN-style startups are out of the question (can't risk going without insurance).
Health problems are like many natural disasters (e.g. hurricanes, earthquakes, heat waves) where it's not the event itself that kills people and causes suffering so much as human failures: looting, under-maintained infrastructure, incompetence by trusted service providers and malfeasance by insurers and various unscrupulous opportunists.
When you're sick, the health problem itself is challenging. The continuing onslaught of people failing you (which you'll frequently blame yourself for, especially if it's not clear what's wrong with you) or exploiting your (no matter how intermittent) weakness is demoralizing.
Now that I'm well I fight back against human failure and indecency and I will not stop.
When I read this article I just think of someone that seems to be keeping themselves down.
But the truth of the matter is that many people that are very sick and in a shit load of pain or even dying are still out busting their asses on a daily basis doing their work come hell or high water.
I'm not saying this from the perspective of some outsider, I am one of those people; I'm one medically screwed up piece of work.
Here is a list of all of the various diseases/syndromes I have been actually medically diagnosed with.
Type 1 Diabetes
Stiff person syndrome
Abnormal antibody syndrome
Benign fasciculation cramp syndrome
(This one is really a load of fun. Basically this means I have severe muscle spasms all over my body; sometimes so bad that I will fall or injure myself and flop around looking like someone with epilepsy. Unlike epilepsy though, this is not a seizure, so when it happens I'm awake for the whole damn thing. Is a god damn riot. Seriously wish I could whip this shit out on demand I'd be the life of the party. The "benign" part just means "this one's not fatal".)
Alopecia
Hashimoto's disease
Asthma
Autoimmune arthritis
Autoimmune polyglandular syndrome, Type 1
My kitchen cabinet looks like a pharmacy because I'm on so many damn drugs, between the muscle relaxants, pain killers, insulin, and more. I'm on the top shelf stuff, the kinds of prescriptions where the doctor still fills out the prescription on real paper because it's required by law since this shit is so powerful and so addictive.
Add to this I have health problems that can't be accounted for by the things the doctors have been able to pin down. Like the fact that I can't stand up to fast or I'll pass out; they know it's because my blood pressure drops way too low, but they still can't figure out why. Or the fact that I sometimes suffer temporary paralysis. Imagine waking up and not being able to get up; I'm not talking about where your arm fell asleep because laid on it and cut off the circulation. I'm talking about waking up and laying there for an hour unable to move or even speak; trying to moan or make some kind of noise until my wife finally wakes up so she can lift me out of bed and move my limbs around until they start working again.
I've had doctors visits where the doctor told me it was a miracle I hadn't been brought in on a stretcher, and visits where they've told me that (and I'm going to have to paraphrase here), as bad as I am they just don't know how much longer I have.
On my good days I'm on muscle relaxants and pain killers and I still am in horrible pain throughout my whole body. There is the pain that is always there and then there are the shootings pains that double me over, or my muscles locking up to where I can't move. And those are the good days; where I get my ass out of bed and go to work anyway. Every 3 months like clockwork I go back in to the doctor and they look me over and run tests and occasionally they will bring in some young new doctor and tell them how "interesting" of a patient I am; and just in case you are somehow unsure you don't ever want to be an "interesting" patient.
On my really bad days I call in sick to work and then I take enough pain killers and muscle relaxants to knock myself unconscious and I just pray for the pain to get a little better.
Everyday I wake up, I breathe a little sigh of relief that I lived another day. Then I get off my ass and get back in the game, because today really might just be my last.
I also have pretty significant health issues, not anywhere near as bad as this person, but life-impacting. People do have a tendency to just think you are lazy, even after you have explained your condition to them. For example, sometimes I have a lot of trouble getting up early or even at a normal time. People would tell me I need to get to bed earlier when I actually went to bed at the exact same time as them and woke up feeling exhausted and had to go back to sleep.
There are lots of things that cause fatigue and other issues that can be practically or actually debilitating but either don't have a diagnosis or don't have a diagnosis that sounds bad enough, and people decide to blame the victim.
Part of that might be giving too much credit to doctors.
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77 comments
[ 3.0 ms ] story [ 147 ms ] threadSometimes it's not that simple – sometimes it's a matter of doctors trying to see if it's actually an unusual presentation of an existing condition. That's the usual focus for the first few years of dealing with a rare condition: the search for a diagnosis. You may have a dozen symptoms, and a given condition may overlap with eight of them, and with six of another, and with ten of another, but something stands in the way of getting a diagnosis.
Eventually, you may have exhausted your options for diagnoses. None of the existing conditions fit what you have, for one reason or another. At that point, the best you can hope for is to find other people who match what you have. Get a small cohort together, and maybe the NIH will fund a grant through the Undiagnosed Diseases Program or something.
It's long, uncertain, and frustrating. We're working on stuff to help folks like these (though kids, mostly) over at Kinsights, and it's heart-wrenching to hear about and watch this process unfold.
Edit: They're also pretty much ignored/under-represented by the medical community.
I suppose me saying "known" was somewhat misattributed because they're known by researchers, not by doctors.
Really?
Edit: It's extremely unlikely that with his state, he hasn't known of everything we could have suggested. And since someone is saying that I'm appealing to authority, I'm not. I didn't mean to say that the doctor knew best, but rather him, the writer, have done his research and knew about his condition.
And as for whether the comment I'm replying to is "helping". That's the point I'm trying to make. He's helping the same way as the writer's roommate is "helping".
The point I was trying to make is that, half of the post was about how hard it is for people outside himself to know about his condition. And to my interpretation, it's better to just take his words. With that in mind, it feels incredibly ironic that the first comment in the topic is essentially someone trying to guess what's the issue. And no, I'm also not trying to help, because that's also the point: he doesn't need my help, there is nothing I, an internet stranger could have helped. And from the tone of the post, I wasn't aware that he was looking for information, merely expressing his frustration. I'm sharing my sympathy with him, and if we meet one day, I've love to buy him a beer. As of now, I'd just take his words, and shudder when realizing there are many type of odd disorder out there.
I realized the tone wasn't necessary, and I apologize for that.
I don't think relying on professionals to be perfect is a good idea.
It probably isn't in Wikipedia because it isn't in Surely You're Joking, which is freely available online, whereas you have to buy the other book which has this story. But the story is definitely in there.
EDIT: Here's the story: http://pastebin.com/NeP4Ka70
Some summary:
...
As soon as I hear about [the disease] I go down to the library at Princeton and look up lymphatic diseases, and find “Swelling of the Lymphatic Glands. (1) Tuberculosis of the lymphatic glands. This is very easy to diagnose…”—so I figure this isn’t what Arlene has, because the doctors are having trouble trying to figure it out.
...
The county hospital gave Arlene all sorts of tests and X-ray treatments for this “Hodgkin’s disease—?” and there were special meetings to discuss this peculiar case. I remember waiting for her outside, in the hall. When the meeting was over, the nurse wheeled her out in a wheelchair. All of a sudden a little guy comes running out of the meeting room and catches up with us. “Tell me,” he says, out of breath, “do you spit up blood? Have you ever coughed up blood?” The nurse says, “Go away! Go away! What kind of thing is that to ask of a patient!”—and brushes him away. Then she turned to us and said, “That man is a doctor from the neighborhood who comes to the meetings and is always making trouble. That’s not the kind of thing to ask of a patient!” I didn’t catch on. The doctor was checking a certain possibility, and if I had been smart, I would have asked him what it was.
...
[A long time passes, and Arlene's condition worsens. The doctors finally perform a biopsy to figure out what's wrong.]
...
When I got to Arlene's house, she showed me the report. It said, “Biopsy shows tuberculosis of the lymphatic gland.” That really got me. I mean, that was the first goddamn thing on the list! I passed it by, because the book said it was easy to diagnose, and because the doctors were having so much trouble trying to figure out what it was. I assumed they had checked the obvious case. And it was the obvious case: the man who had come running out of the meeting room asking “Do you spit up blood?” had the right idea. He knew what it probably was!
I felt like a jerk, because I had passed over the obvious possibility by using circumstantial evidence—which isn’t any good—and by assuming the doctors were more intelligent than they were. Otherwise, I would have suggested it right off, and perhaps the doctor would have diagnosed Arlene’s disease way back then as “tuberculosis of the lymphatic gland—?” I was a dope. I’ve learned, since then.
Very much a lack of detail, though.
At least he's trying to help.
As to the question you made, the writer said that he has been sick for not a few weeks or month, but a decade. And when I first read your comment, it's practically saying to me "Are you taking steroids while being sick in the last 10 years?" - again, probably not a charitable reading of the comment as I could have made.
I'm sorry to hear about your condition.
Madmallard suggested a possible cause that matches the symptoms and also points out that doctors tend to ignore it. The roommate more or less suggested OP try not being sick.
I had 5/10 doses of ciprofloxacin and I seem to be having mad difficulties (3 months in).
Lastly, who is he? I googled Forgot Amnesia and didn't find anything of note. Not that his identity has anything to do with his illness or his struggle, but it would help put some identity and background to the story. Is he well known? Is he rich and famous? Is he poor and struggling? He says he's a writer and an indie dev, has he done anything I would know of, or does he have a storefront where I could buy something to help his finances?
For a story titled "Read all about it", it doesn't really say much. I feel like I want to help, but now I just feel bad for someone I don't know and can't do anything about.
The easiest way to explain this is that doctors typically don't want to diagnose life-long conditions if they've never seen them before. So your family doctor will send you to an internist, who will send you to an internist at the local academic medical center, who sends you to three specialists at the same medical center, who don't know what it is. Then you get a referral to someone in another city who specializes in something someone thinks it might be – that guy has diagnosed 10 people with this rare disease. You fly out, and he says "nope, you're not it."
Wash, rinse, cry, repeat.
Part time? You get a talented developer for 30 hours a week, paying the same hourly rate as everyone else.
Working from home? Depending on the role he may be even more productive than those in the office. I have just two more words to say about it: 37 Signals.
Pointless constraints like being a reliable employee?
> Part time? You get a talented developer for 30 hours a week, paying the same hourly rate as everyone else.
Why would you want a part time engineer if you can have an (at least!) equally talented full time engineer?
> Working from home? Depending on the role he may be even more productive than those in the office.
If you want an employee that can work from home, there are plenty of them that won't be sick half the time.
> I have just two more words to say about it: 37 Signals.*
What does 37 Signals have to do with anything? There's nothing to indicate that cargo culting a small aspect of their company's working model has anything to do with creating a similar outcome.
I find that 'work from home' jobs tend to pay less and therein lies the balance. The advantage to the employer is to pay less for the employee and save on office space. The advantage to the employee is obviously the flexibility that gives them and not needing to commute.
30 hours is part time but it isn't like asking for 10 hours a week. It is almost full time (40hours). I hear a lot on HN and other places online about American companies requiring lots of hours of their developers even though they are supposed to work 40hours. So that could be the difference we are seeing. In Europe/Australia this is not expected generally, except in certain industries like Finance.
37 signals are successful despite letting people work from home. I had a previous employer who isn't famous or anything but had many developers work from other countries with time zone challenges. It can be done.
In a pure, zero-charity, capitalist world there should still be jobs for people with diseases like this who can work. They have something to offer and the market will meet a fair price on it. It may be a lower price than a fit person, but there could still be a beneficial situation to both the employer and the employee.
It's not really sickening or surprising that he's having trouble getting a job though. I mean his writing seems decent enough, but is there really much demand for video game reviewers? Let alone the fact that he has to work part time, and can't be reliably counted on to attend events or even stand in front of a camera.
It would not surprise or sicken me if a perfectly healthy video game blogger couldn't find a job. This guy's situation sucks, but society and/or the government should be helping him, not some charitable employer.
CFS is very treatable and you can recover from it. Unfortunately there is a lot of BS and quackery out there, making it difficult for patients to get the right information. Feel free to email me at cpncrunchhn@gmail.com.
The problem is that all patients have slightly different symptoms and there is no definitive test as yet, so it makes it difficult to diagnose.
Out of curiosity, if there is no name for this illness he has, what sort of treatments does he do that require 2-3 trips to the hospital per week? Is he getting dialysis or blood transfusions?
> especially when he complains about being tired all the time
He never said he complains all the time. He says he is tired; he did not say he complains that he is tired all the time. So why did you immediately conclude he must complain all the time?
See, I read the point of the post as this: when you have a disease with no name -- no one can classify you as having a thing. You just have symptoms. I read his point as being that people sympathize with those who have a disease, but if you can't name your disease, it's almost as if you didn't have one. And hence his roommate who decided it'd be awesome to ride their exercise bike in his room as a form of punishment for not having a better sleep schedule. His roommate couldn't sympathize.
Here's an exercise: you know how recent security exploits all have fun little names? And how those exploits have all gotten fairly extensive press mentions as a result? Do you think they would have had the same if they were left nameless, as most exploits in the past were?
He admitted himself that they are great people, and the fact they are behaving so strangely to him indicates to me that there is some other dynamic going on that we don't have an explanation for. The examples of the roommate taking an exercise bike into the room while he's sleeping is simply bizarre and toxic, if these people are as good as he says they are there must be some other explanation. There's always two sides to every story. Is he late with his rent because he doesn't have money, but always buys the latest video games? Is he playing games all night long because it doesn't take much energy, but does he not do his dishes because he's too physically tired? There's a lot of dynamics going on and we're getting a very 1 dimensional analysis of his roommates that he chalks up to them not believe he is sick.
Ask anybody with an "invisible" malady and they'll tell you that some depressingly large percentage of the people they care about don't believe they're actually sick.
There are probably a lot of people in your life who (like him) suffer from things you can't easily see.
It's something we'd all do well to remember.
He also talks about suffering from fatigue so severe that he's 'too exhausted to sleep' and then explaining that he was able to: 'work part time, attend school full time, and do freelance writing...50 or 60 hour work weeks, effectively'. It's all a bit strange.
I'm curious about HN's fascination with health posts - I've seen quite a lot pop up on the front page. Especially things about depression and unusual illness.
(I hope the points/questions I've raised don't make me sound like a douche.)
(How to Create a Healthy Electrical Environment in Our Technology-Driven World)
Clean up your fucking diet. Cut out everything even remotely inflammatory. Drink a shitload of water. Eat grassfed. Meditate. Coconut oil. Tumeric. Blood tests for kidney, liver function.
Get your HORMONES checked. Testosterone, including free testosterone.
Get sunlight. Walk. Stop sitting.
Change your environment.
That said, this post has many hallmarks of pseudoscience, and I'm afraid that the author may be invested in pseudo-scientific diagnoses to his own detriment.
For example, he is very specific about the genetic origins of his disorder and even enumerates three very specific downstream effects of his genetic polymorphisms (low catecholamine levels, 'toxin' retention, and high elimination rates of various minerals). However, any genetic disorders that are well-understood enough to detect and enumerate like this would absolutely have a name and associated diagnosis.
Furthermore, the specific factors he lists (low serotonin and dopamine, high toxin retention, high mineral elimination) map more closely to pseudoscientific principles than they do to actually medical conditions. For example, his claim that his body specifically stores 'toxins' such as benzene and mercury while 'normal' people's bodies eliminate the same toxins is a classic pseudoscientific explanation that has no basis in reality.
Again, I'm not suggesting that he isn't suffering or that his symptoms aren't actually happening. But the amount of pseudoscience in this post makes me concerned that he is moving in the wrong direction or even entering a cycle of worsening his own symptoms with his pre-occupation with pseudoscientific diagnoses and insistence that mainstream medicine can't understand his symptoms.
This is a surprisingly common scenario, common enough that it has its own diagnosis: http://en.wikipedia.org/wiki/Somatic_symptom_disorder The greatest hurdle in treating a somatic symptom disorder is convincing the patient that mental health treatment will be beneficial to their symptoms, which are largely physical. As a consequence, many sufferers turn to alternative medicine which provides comforting but largely false physical explanations for their symptoms involving disorders such as high toxin levels, low mineral levels, and low serotonin and dopamine levels, which is precisely what the author insists is causing his symptoms.
There are many areas of philosophy which people believe are done via science. I'd say metaphysics is a pseudoscience because people assume it's akin to physics.
Most modern psychology (not all of it, and not psychiatry) is based on Freud and Lacan's psychoanalytic practice. This practice people generally assume to be scientific because their health insurance covers it, but it has no scientific basis.
I'd also say some people assume political theory to be scientific, as many mistake it for economics and sociology which ~are~ scientific. Political theory is not.
EDIT: Aesthetics and philosophy of mind are other areas which people mistakenly think involve neurobiology, but they don't.
The ~generally assume~ is an interesting bit. Dictionary definitions of the term typically go with something more like "practices which claim to be scientific". Its not terribly fair to philosophers to call them practicers of pseudoscience just because the layperson sees "physics" and assumes "metaphysics" must be science.
But, then again, life isn't fair. Metaphysics is a pretty misleading name.
You're right about the "generally assume" part. I had my definition wrong. But I still think it pertains to psychoanalysis specifically, because Freud definitely advertised his methods as scientific.
But if this is the case, then economics and sociology are both pseudosciences; they're wrongly called "social sciences" though they are not falsifiable!
As an Austrian economist I consider economics to be purely an a priori deductive process.
However, positivism pushes people to make a science out of everything. So most people, even here at HN, want to believe economics is a hard science, and that you can use mathematical formulas to know in the future how many people will be out of a job.
At the very least, it's funny watching otherwise atheists struggling to justify the deeds of their Earthly gods.
Medical practitioners outside of mental health seem relatively unaware of these disorders, but if you speak with a psychiatrist, you may receive some useful info. It's worth a shot.
Here are a couple sources for further reading: http://en.wikipedia.org/wiki/Conversion_disorder
This is a good book on going about recovery. You'll have to forgive the title; the reason it's there is the physical site for these disorders tends to follow trends in society, and at the time of writing back and neck pain were the most common occurrences (it's consistent with the theory behind these disorders that such trends would exist), AND a very large proportion of chronic back/neck pain turn out to be psychosomatic. http://www.amazon.com/Rapid-Recovery-Back-Neck-Pain-ebook/dp...
It's also interesting to see the page for the Seattle Repetitive Injury Support Team, which (after a majority of their members solved their problems) now feels convinced that the most troublesome, persistent repetitive strain injuries are psychosomatic. http://www.satori.org/rist/
You can also see the extents that I went to to avoid physical activation of my symptoms, here: http://tiledtext.com
That's how convinced I was that they were physical, though now I have no doubt about their mental origin—and I can use computers almost completely freely now :D
Also, as a kind of warning, I can say the literature available is kind of mixed: there are good recommendations on methods for recovery, but the theory behind a lot of it is quite bad: amateurs seeking explanations for the efficacy of their methods. The most popular expositor, Dr. John Sarno, grounds his theory in Freudian psychology. The situation is probably better when speaking with practitioners in mental health, but maybe not by so much: my psychiatrist was utterly unsurprised—was nothing new to him. That said, books on the subject seemed more practically helpful that recommendations from him.
Thanks!
It is unclear how much of his description of his medical problems is known for certain, or how much of this is speculation. He admits that he "barely understand"s it. I would like to hear a medical explanation for why his explanation is impossible or problematic before concluding that it is simply pseudo-scientific gobbledygook.
You should really look deeply into your diet and do a lot of research. This site: http://selfhacked.com/ is the first I've come across that has begun to enable progress for me. For example, I found out about longvida curcumin from it, and it's been the single most helpful thing I've ever taken (pharmaceutical or natural) to help with my inflammation issues.
Everyone is different; some people's issues may be psychosomatic (for me, my issues begin in the GI tract and cause issues throughout my body), but as someone who's run through the system, it really illuminates just how little modern medicine really knows about the body.
The thing is, if you've had nine years of battling these symptoms (that are mysterious and won't go away), you've had time to have go at all of the approaches you name. Try them one by one, in combination, note what seems to work, psychological/mental, physiological, dietary, environmental, natural, pseudo-scientific, alternative, magical, religious, (quasi) pseudo-religious ... you name it. You become an expert at yourself, but that's super hard because you are most biased at this topic (step one: keep a diary). Obviously there will also be placebo effects (which I hope we all agree do have tangible medical effects), and sometimes the pseudoscientific-treatment-that-doesn't-work will have better placebo effects than the medical/scientific-treatment-that-doesn't-work. Either way, as long as you keep moving, keep fighting, and keep a clear head about it, you'll keep learning, even from the things that are on the surface bullshit (and sometimes you just need a break and try something that couldn't possibly work).
I too hope that indeed this person is not stuck in a cycle of pre-occupation with one particular thing, but he is just describing his most current working-theory in the continuous string of attempts.
The point of the article is not to try to explain all of that shit to you, but to try to make you understand what it's like to be that sick all the time. Try to take in that message first, and when you think you have the slightest idea what it's like to live like that, maybe you are then qualified to add a response.
How ridiculous. Just because a person isn't suffering or doesnt have a true understanding of the same agony as the blogger, doesn't mean they are not allowed to offer help.
Whats so wrong with people trying to help? Should we just say - "Thanks for the insight. Now back to my own world"
Because most of the 'help' is in the form of unsolicited advice, well-intended as it might be, and tends to be naive, unhelpful, disheartening, demotivating or downright insulting.
OP outlines what that feels like:
"These people are, in most aspects of their lives, good people. Honestly, couldn’t recommend them enough. But where my illness is concerned, they felt they had license to act like complete jackasses because they couldn’t understand what I was going through."
Sure, anyone can help, but very few of the comments on here are helpful.
During that whole time almost everyone I encountered was very sympathetic and understanding.
It is also difficult as a patient not to be jaded. There are "patients" out there trying to scam the system that just want some doctor to sign a disability claim so they can collect a check without getting a job. I've met numerous individuals where this is the case. Then I see the doctors and they keep telling me that I should consider going on disability or find a less stressful line of work, because of my health. They tell me that it is only a matter of time before things get so bad I will no longer be able to make a choice.
I have a friend that has terminal cancer who plans to work until he dies. There are plenty of desk jobs; if this guy can sit up playing video games and such; he can likely hold down a job.
I have a close friend who's always going to see specialists with some ailment or another. One of the things he has is low magnesium and zinc just like this author. He's also suffered from bouts of unexplained amnesia (is that where the author got the name for his blog from? If so maybe they actually have the same thing!?). His sleep schedule is completely screwed to the extent that i hardly see him and he never gets sunlight. He has serotonin and dopamine issues. I actually checked the blog in detail to make sure it's not the same person. It isn't. Just a weird coincidence.
He's never been diagnosed with anything specific either.
Like the friends of this guy in this story I honestly do suspect he is lazy. I see him playing 100+ hours a week on his steam profile and he plays more than just steam games. He's currently well into his 30's and he's missing out on life.
I actually don't know what to do. I honestly feel that tough love would help him more than anything. In this article this guy says his friends keep him up saying “You need to force yourself to have a better sleep schedule.”. I'm tempted to do the same for my friend to try and get him into a sensible sleep schedule. I guess that's wrong but i can completely understand it.
Leaving it at status quo is unacceptable in my opinion. Even with a disability he's still not making the most of life - the ridiculous sleep schedule where he never see's the sun has to stop. Giving him time to sort his shit out doesn't work. He's been like that for 15 years now.
My suggestion would be to start to talk to your friend about how you feel about his/her situation. Try and get an understanding of just how they are feeling.
Dont just come into a conversation with all your advice ready to go because it will make your friend back off.
Be prepared to spend sometime to get to understand the underlying causes behind his/her need to shut down and not live life.
There are probably some deep seated fears and stresses which are causing him/her to be this way.
Walking away and just turning a blind eye to them is not going to help anyone.
Second, you can't force him to change his life around. If someone honestly believes something beyond their capacity (physical or mental), you're not going to be able to coax, reason, berate, intimidate, or threaten them into doing it. What you can do is inspire them. Give them a reason to wake up just a little sooner, like a shared activity that you both enjoy. "Let's have a match of <X game> before I go to bed tomorrow", or maybe "I'm making X for dinner, I'll make extra for you if you're up". Try something like that.
Small steps are best to start with. Trying to force someone in a big step will probably cause a panic reaction. A confrontational approach will probably do the same thing. A panic reaction is not what you want.
Health problems are like many natural disasters (e.g. hurricanes, earthquakes, heat waves) where it's not the event itself that kills people and causes suffering so much as human failures: looting, under-maintained infrastructure, incompetence by trusted service providers and malfeasance by insurers and various unscrupulous opportunists.
When you're sick, the health problem itself is challenging. The continuing onslaught of people failing you (which you'll frequently blame yourself for, especially if it's not clear what's wrong with you) or exploiting your (no matter how intermittent) weakness is demoralizing.
Now that I'm well I fight back against human failure and indecency and I will not stop.
When I read this article I just think of someone that seems to be keeping themselves down.
But the truth of the matter is that many people that are very sick and in a shit load of pain or even dying are still out busting their asses on a daily basis doing their work come hell or high water.
I'm not saying this from the perspective of some outsider, I am one of those people; I'm one medically screwed up piece of work.
Here is a list of all of the various diseases/syndromes I have been actually medically diagnosed with.
Type 1 Diabetes
Stiff person syndrome
Abnormal antibody syndrome
Benign fasciculation cramp syndrome
(This one is really a load of fun. Basically this means I have severe muscle spasms all over my body; sometimes so bad that I will fall or injure myself and flop around looking like someone with epilepsy. Unlike epilepsy though, this is not a seizure, so when it happens I'm awake for the whole damn thing. Is a god damn riot. Seriously wish I could whip this shit out on demand I'd be the life of the party. The "benign" part just means "this one's not fatal".)
Alopecia
Hashimoto's disease
Asthma
Autoimmune arthritis
Autoimmune polyglandular syndrome, Type 1
My kitchen cabinet looks like a pharmacy because I'm on so many damn drugs, between the muscle relaxants, pain killers, insulin, and more. I'm on the top shelf stuff, the kinds of prescriptions where the doctor still fills out the prescription on real paper because it's required by law since this shit is so powerful and so addictive.
Add to this I have health problems that can't be accounted for by the things the doctors have been able to pin down. Like the fact that I can't stand up to fast or I'll pass out; they know it's because my blood pressure drops way too low, but they still can't figure out why. Or the fact that I sometimes suffer temporary paralysis. Imagine waking up and not being able to get up; I'm not talking about where your arm fell asleep because laid on it and cut off the circulation. I'm talking about waking up and laying there for an hour unable to move or even speak; trying to moan or make some kind of noise until my wife finally wakes up so she can lift me out of bed and move my limbs around until they start working again.
I've had doctors visits where the doctor told me it was a miracle I hadn't been brought in on a stretcher, and visits where they've told me that (and I'm going to have to paraphrase here), as bad as I am they just don't know how much longer I have.
On my good days I'm on muscle relaxants and pain killers and I still am in horrible pain throughout my whole body. There is the pain that is always there and then there are the shootings pains that double me over, or my muscles locking up to where I can't move. And those are the good days; where I get my ass out of bed and go to work anyway. Every 3 months like clockwork I go back in to the doctor and they look me over and run tests and occasionally they will bring in some young new doctor and tell them how "interesting" of a patient I am; and just in case you are somehow unsure you don't ever want to be an "interesting" patient.
On my really bad days I call in sick to work and then I take enough pain killers and muscle relaxants to knock myself unconscious and I just pray for the pain to get a little better.
Everyday I wake up, I breathe a little sigh of relief that I lived another day. Then I get off my ass and get back in the game, because today really might just be my last.
There are lots of things that cause fatigue and other issues that can be practically or actually debilitating but either don't have a diagnosis or don't have a diagnosis that sounds bad enough, and people decide to blame the victim.
Part of that might be giving too much credit to doctors.