Yeah, I'm sick. Read all about it

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.

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

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.

(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.

Pseudoscience is not necessarily bad. Most of psychology and philosophy, for instance, is essentially pseudoscience.

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?

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.)

>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"

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.

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).

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.

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.

I've replied to everyone who emailed me. If you didn't receive a reply, check your spam folder.

Is racking pain characteristic of CFS?

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."

Wash, rinse, cry, repeat.

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.

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.

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?