> 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...
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.
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.
> 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.
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:
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.
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.
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.
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.
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...