Hacker News Reader

> Being unable to get out of bed. Being unable to make the simplest of decisions without feeling like you're having a panic attack. Being unable to read, because it's too much information at once. Being unable to watch TV shows that have too many "facts" in them. All of the above -- including simple questions of "What do you want for lunch, honey?" -- triggered panic-like attacks in me, who'd never had a panic attack despite years of physical and emotional abuse as a child. It was like being surrounded and squeezed and shouted at by a million people all at once, just to try to listen to my lunch options.

Holy...! You have described my current condition even better than I could. Interestingly, I just came back from a doctor who, after reviewing my blood tests(standard blood tests), said that there wasn't anything wrong with me and my issues were lack of exercise. Which may be true, but getting out of the bed currently IS an exercise for me. It is getting better though, two months after quitting my job - I can even enjoy Hacker News again.

Since you've gone down this path, what would you suggest? I am having a hard time convincing any doctors to do a more complete examination. I was going to focus next on sleep disorders, but now I think it might be worth talking to an endocrinologist...

Amy will almost certainly have more/better advice, but I'd say:

1. Do something for fun/relaxation other than read HN. 2. Find a doctor who will run the tests you want. You're the customer.

Unfortunately there is no standard blood test for CFS/burnout. I agree with Amy that cortisol might be useful, but the problem is that it isn't always a reliable indicator of illness.

Anyway, just keep doing what you are doing and you will gradually recover. For more info, see: http://www.mind-body-health.net/recovery.html (a site I developed 10 years ago after recovering myself).

Unfortunately this is a very misunderstood area of medicine because doctors (and patients) like to pigeonhole illnesses as either physical or psychological, and psychiatric/psychosomatic illness has a very bad negative stereotype.

Thanks for the link.

> Unfortunately this is a very misunderstood area of medicine because doctors (and patients) like to pigeonhole illnesses as either physical or psychological, and psychiatric/psychosomatic illness has a very bad negative stereotype.

That is, in fact, what I was trying to do. I actually said that to one of the doctors (something along the lines of 'I want to rule out physical issues first').

Thanks again. I'll write about it and submit to HN once I have finished climbing out of the hole :)

There are plenty of tests which can show what's wrong with you - but they're not "standard" in the sense of doctors using them.

If your morning cortisol is above a certain level or below a certain level; if your morning, before-you-get-out-bed axillary body temperature is above or below a certain temperature (under 97.8 or above 98.6); if your blood pressure deviates by a certain amount over a 16-hour day; if your average temps deviate by more than 0.2 F from day to day; if you have post-exertional malaise… you have an HPA malfunction of one kind or another.

I'd say "you should also get your thyroid checked" but the blood tests for that are atrociously useless. Check the symptoms. Low body temp, especially in the morning before you get out of bed (mine ranges from 96.5-97.4), slow heart rate if you're not an athlete (mine is 50-60 bpm and I am NOT an athlete!), puffy face/eyes, myxedema (non pitting) swelling/thickened rubbery skin on your upper outer arm or shin, changed ankle-tap reflexes, very cold extremities, Raynaud's phenomenon, etc., those are the signs that are actually diagnostic of a thyroid insufficiency.

These are how doctors have diagnosed and treated low thyroid successfully for a hundred years. The blood tests are a new thing but they aren't very indicative of actual dysfunction (or function).

All of the above is like a lot like low blood pressure. Low blood pressure is only defined by numbers when it becomes dangerous to life. Otherwise, you're diagnosed with low blood pressure if your blood pressure is "normal" or below and you have symptoms. E.g. I have low blood pressure at 100-110/60-70 even though that's considered just fine, because I feel faint when I stand up and other symptoms.

Generally, the best resource I've found is _From Fatigued to Fantastic_. It helped me get much, much, better.

When you list ranges of temperatures you should indicate the body part that is being tested, because an oral temperature reading will be different than a rectal reading. Also, the temperature readings you gave are slightly inaccurate; this [1] says that the maximum oral healthy early morning temperature is 98.8°F, and 99.9°F overall.

[1] http://jama.jamanetwork.com/article.aspx?articleid=400116

Sorry if I forgot to say: Axillary basal temperature. That is, under the arm, measured for 5-10 minutes, with a glass thermometer or electronic one that'll let you keep measuring that long. If that's higher than 98.6, you really should be evaluated for hyperthyroidism. Doesn't mean you DO have it. It CAN be a healthy temperature. But it's a possible symptom.

While I agree with most of what you say, the problem is that a lot of studies have been done on the HPA axis and cortisol in CFS/burnout, but there is no agreement. Some studies find low cortisol, others don't. There is definitely HPA axis dysfunction, but nobody can seem to pin it down. I suspect that if you measured cortisol throughout the day and correlated it to a symptom diary and/or a stress test, you might be able to come up with a diagnostic test.

The other issue is that there is no cheap and easy cortisol test like there is for blood glucose. As far as I can tell it would be possible to develop such a test, but nobody has done it yet for a number of reasons (lack of demand, cost, FDA approval, etc).

If someone were to [1] figure out a definitive test for burnout/CFS and [2] develop/patent a home testing kit they would be very rich and help a lot of people into the bargain.

As for Teitelbaum: while he does have some useful stuff to say, he also peddles a lot of quackery.

Re: the contradictory studies… if you go with the group of practitioners who argue that there are different stages to the disorder, they're not contradictory at all. The stages argument says a person starts off with very high cortisol output (because you're under stress) and this is what causes the damage and fall-off of production later:

http://www.ncbi.nlm.nih.gov/pubmed/10633533

The 24-hour saliva cortisol test costs about $100 and should tell you a lot:

http://labtestsonline.org/understanding/analytes/cortisol/ta...

There are definitive clinical (non-blood) tests for hypothyroid (I mentioned several of them), there are also ways to test for FM/CFS (muscle recovery among others). They just don't get used a lot.

As for quackery -- the only quackery I read in Teitelbaum's book was about the allergy treatment and it's not any more or less quacky than acupuncture (where the research was discredited) so I consider it harmless. Every "canonical" scientist has some kind of nutty side, from Isaac Newton on down the line. (Note: Not comparing Teitelbaum to Newton whatsoever. It's just an ideal, extreme, example.) Everything else in his book is supported with research citations. I've checked them, and others, because I followed his advice.

I've been through something very similar to this as well and it was a severe depression for me. It was due to pushing myself too much while going through chemo, but it's possible that it can happen with any major life change (like leaving a job). I wrote about my story of depression http://jensablelopez.com/depression-what-summer-made-of/ - not sure if that helps at all.

But I agree with others, go see a different doctor. Perhaps try a Naturopath. They'll help you without giving you drugs.

jennita, I'm glad you're feeling better now. I don't mean to belittle your experiences whatsoever, because depression is a terrible thing. I just want to explain:

You wrote your husband was able to "force you" to get out of bed (good man) and brush your teeth and do sit-ups etc.

When I say "I can't get out of bed," I mean if I stand, my heart rate doubles, it feels like the "bottom falls out" of my head, the world starts going dark, if I do not sit down I will faint, I can't lift my arm above my head to brush my hair, etc.

No amount of "forcing" could have made me stand up and brush my teeth. When I was over the worst of it, if I would walk two or three blocks to the store, I would feel like I had been hit by a truck for days afterwards. Even years later, I came within a hairs' breadth of passing out doing nothing more strenuous than walking around the ground floor of a museum. Never before in my life had I ever fainted, before I got sick. This is a physical ailment, caused by low blood pressure, disordered autonomic nervous system response, a lack of muscle energy replenishment that is characteristic of CFS/FM, etc.

You also wrote that you couldn't stop thinking. When you have what I have, thinking is almost as difficult as physical activity.

Depression vs CFS is the difference being out of gas, and an engine that is rusted solid.

That doesn't mean your experience wasn't equally terrible in different ways. Your car still wouldn't go. It's an issue of terminology, we only have so many words.

Dang :( I'm really sorry you have to deal with this. I've definitely not been through anything like that. Thanks for explaining it better, I really had no idea what it was. (I also just googled it and am reading more about it) Don't worry, I hope it didn't bother you that I tried to relate to it. I do hope you can find a way to get better though!

No worries at all. I haven't had to go through chemo, so I'm sorry you had to go through that! That must have been terrible. We've all had our problems, and nobody was saying "Mine is worse!" -- I know you weren't, and I certainly wasn't, and hopefully it didn't sound like I was.

Like I said… I blame the lack of words!

haha let's hug it out! :D

Get the book _From Fatigued to Fantastic_. The "standard" tests your doctor would ordinarily order won't show jack. (See my comment below for more specific test information.) This book is the single best resource I have found. Even if you don't technically have full-blown CFS, it will probably be able to help you.

The five things that made the biggest difference in my life: Trazodone (Desyrel) to fix my constant waking at night, melatonin to work against the delayed sleep phase syndrome, magnesium/ATP/d-ribose to ease the excruciating muscle pain, B-vitamin complex for energy, and lots and lots of electrolyte supplementation to help with the POTS/low blood pressure.

Does your heart race when you just stand up? Doctors are famous for telling you that you just need exercise. I told mine that my heart rate doubled when I stood up (a classic symptom of POTS), and he said "You're just de-conditioned." I told him, "I wasn't de-conditioned three months ago before I got sick, and I was exercising every day. Tell me how I de-conditioned from being able to do aerobics, walk around and climb things to being unable to stand up in 60 days." and he just shrugged. Asshole. I discovered much later that electrolytes solved the worst of that particular symptom.

My main take away from what your are stating is that it doesn't matter whether you succeed or fail at something, it is whether you are running the engine too hot for too long.

Stop, breathe, relax, pace yourself.

One can burnout after a failure as quickly as after a success. However, one might want to get back on the stress train quicker with a success, since one expects a victory rush at the end of the stress which apparently made the stress worth it.

That's a great way to put it.

Yes, positive stress can cause it just as well. I had met the love of my life, traveled to Europe 7 times over a year, gotten married, moved to a foreign country I loved… and founded a new business. Life was pretty good.

Having experienced burnout and resulting chronic fatigue syndrome (which is really just an extreme version of burnout that persists long after the stress has ended), I pretty much agree with everything you say. However it's incorrect to say that burnout is physical rather than psychological as psychological factors do play a large part in determining whether or not you experience burnout.

Yes, CFS has a psychological component… In the way that, if X happens the same to you and me, and you don't care, but I do, then my adrenals/thyroid go into overdrive, yours don't; I get sick, you don't. Some people get CFS because of minor stress, some people don't get it until their life is a living hell. That's the psychological aspect of it.

But that doesn't make it a psychological disorder in any way, shape or form. Mind and body are just simply not separate. I have been depressed in my life. I was not depressed before my illness or even during it, except the natural kind of mourning a person goes through when suddenly they can't even stand up.

I'm sure lots of people have concomitant depression, since so many people are depressed, period. But many also do not. (I'm one of them.)

I'm more interested in understanding what is going on in the brain/body rather than arguing over terminology. Both psychological and other factors seem to cause burnout/CFS, although psychological factors do seem to be the most important. Depression is a resulting symptom, not a cause.

Stress and burnout affect different people in different ways: some people get depressed, others develop chronic pain (fibromyalgia, ME), others have chronic fatigue etc.

As for the psychological factors that seem to be important: motivation, goals and emotions all seem to play a large part.

While you're correct that CFS is not entirely psychological (functional would be a better term), it does appear to be mostly caused by psychological factors. If you look at the main triggers for CFS they are: job stress, relationship stress, and viral infection - and there is some doubt as to whether the viral infection is a cause or just a symptom of a weakened immune system.

If I am depressed and jump in front of a train, or if I think that's a safe and normal thing to lie on the tracks, or if somebody pushes me, or if I trip, the result is the same: Splat.

There's little point in saying "Splats are primarily psychological" if accidents and mistaken facts seem to be at play often enough. Or if people splat other ways (e.g. in car crashes, tightrope accidents). The result is the same. Splatty splat splat. The outcome only tells you so much.

I can tell you one thing: Totally overhauling my "motivation, goals, and emotions" did absolutely diddlysquat in making me better because while I started off with a combination of routine infection and "psychological" stress (which, of course, is a kind of misnomer because you can measure it with blood tests)... it did permanent damage to my mechanicals. Splat.

Also, a lot of doctors think FM/ME/CFS are the same thing. And a lot think adrenal fatigue/hypothyroid and CFS are the same thing. Maybe they are separate but cause each other.

Genetics certainly play a part; hypothyroid is incredibly heritable, for example. It causes lots of the same symptoms and may be a symptom/cause (or both) itself.

But nobody claims that hypothyroidism is psychological, not even slightly, much less primarily.

But the cause for an individual almost doesn't matter. You have to cut stress no matter whether it was a primary cause for you or not.

Amy, this is great. Thank you!

> cortisol is required to rise to the "stress" of every day living

So stress seems impossible to avoid completely right? There's going to be some amount of it. When an email comes in about some snafu in the thing I'm making I can't avoid a spike in cortisol right?

What's the smartest approach to managing it? I seem to do typical things like working out, etc. But I also love working. Should I be somehow measuring cortisol and when it gets above X level, I need to take some action to reduce it? This seems like a hard thing to do right, if I'm just going by gut instinct to check where I'm at.

There's a spring drizzle, and then there's a hurricanes, both of which you can call "rain." One makes flowers come up, the other crushes and rips the flowers out of the ground. So. "Stress" is not a good conversational word for what happens when you go from laying in bed to standing up. But it is the technical term.

I loved working, too. I'd work when I was moderately ill. I'd work long hours. I was enjoying it… mostly. That is no protection.

If I'd dropped certain responsibilities, rested when I was sick, worked fewer days, and cared less [1], I probably wouldn't have ever gotten this bad.

That's about all I got for you. I don't know all that much about that stage of the syndrome because I never had any tests at the time. I would get sick, take some of the time off, then get right back to it. Nobody was forcing me. When not sick, I would need to take several days off in a row to relax and then I'd find myself more creative again. I guess that was a sign.

If you can get the test for cheap, why not? But it'll only tell you trends compared to yourself, unless you are either very high or low. There's info on the Stop the Thyroid Madness site about reliable labs.

[1] (By "cared less" I don't mean "stopped caring about my work/life" but rather "stopped caring about stupid shit" which, believe it or not, is most of it. But that's not something you can understand until you've experienced it. It's great to know just how little what I do matters. Very freeing and not at all demotivating.)