Update (2024-09-19): I've made significant progress in getting to the root cause of my health issues, which turned out to be a major chronic health condition. Here's the latest information. If you're struggling with similar issues, I hope these posts are helpful.
I've been exhausted for over a decade.
Imagine recovering from a bad cold. The symptoms are gone, but there's a lingering sense of overwhelming weariness: like your body needs to use all of the energy it has available just to keep existing.
That's how I felt almost every day for ten years.
It's as fun as it sounds.
What's Wrong With Me?!
I've struggled with low-level chronic fatigue 1 since college. Every day, I'd wake up feeling low-energy, and that feeling persisted throughout the day. It didn't matter what I did the day before:
- 4-7 hours of sleep? Tired.
- 8-9 hours of sleep? Tired.
- 12+ hours of sleep? Tired.
- Vitamins and supplements? Tired.
- Amino acids? Tired.
- Stressful day? Tired.
- Easy day? Tired.
- Exercise? Tired.
- No exercise? Tired.
- Blue light in the morning? Tired.
This wasn't tired
as in wanting to sleep: it was tired
as in don't have the energy to do anything today.
Any extended physical, mental, or social effort just made it worse.
I've tried everything over the years: I've read all of the books, tried all of the weird supplements and interventions, drastically changed my diet and sleep habits in various ways, had all of the medical tests.
Nothing worked. Nothing helped.
All of the typical biological factors related to fatigue were normal: thyroid was normal, cortisol was normal, testosterone was normal, et cetera. Medically speaking, my body was fine along all of the common parameters.
I noticed a few patterns over the years, but they didn't really point to a consistent cause or potential solution:
- Getting 9+ hours of sleep made it more likely I'd have a better-than-average day, which was the best I could hope for. Days were never really great in terms of energy.
- Removing gluten from my diet helped, but didn't fix the issue.
- Exercise made me feel more tired, not less, which was odd: most people report that exercise increases energy.
Every day, I'd do the best I could with the energy I had. I could still function: I just had less energy to work with than I used to have, and way less energy than other people seemed to have.
Social interaction decreased: at first, I chalked it up to introversion, but over time, it was clear that the fatigue was the major limiting factor. Being social took energy I didn't have, so over time I spent less and less time in social situations.
To make matters worse, I also started having issues with middle-of-the-night insomnia: I'd wake up between 1:00-2:30am for no reason, and not be able to fall back asleep until 5:00 to 6:00am. The next day, I'd be completely exhausted: a night of broken sleep destroyed any hope of productivity.
This situation made the early years of life with each of my children quite difficult. Every parent experiences a certain level of chronic sleep deprivation in the first few years of child-rearing: there's really no avoiding it, unless you go full aristocrat and have your child tended to by night nurses in a separate wing of your estate.
The trouble was that any sort of night disturbance would trigger the insomnia: once I was up, I was up (but still exhausted), and there was a high probability that the next day would be a wash. With kids, the probability of night disturbance approached 100%, and that made a bad situation much, much worse.
I run my business by myself: when I stop, progress on my business stops. That's quite a liability when your body isn't cooperating with your plans. I mentioned to a friend that my productivity seemed to be attached to a random number generator: there was no way to predict which days would be decent or bad. All of the most valuable professional things I do require long stretches of sustained mental effort, and a poor night's sleep would kill a day or two of productivity.
I was at the mercy of my biology.
That's how I've lived for a decade now: trying to get as much done as I could on the good days, weathering the bad days, and looking for a solution to this weird, unpredictable fatigue that's made everything in my life more difficult than it should have been.
A few months ago, however, I tested something I've never tried before… and it changed my life.
Standard Disclaimer: I Am Not Your Doctor
In the remainder of this post, I'm going to discuss the solution to my chronic fatigue and why it worked. Please note that I am not a doctor, and you shouldn't take medical advice from random essayists on the internet.
If anything in this post sounds familiar, treat it as a testable hypothesis and talk to your doctor before you do anything else. Everyone is different, the human body is a horrifically complex system, and any issues that you experience are likely to have different causes and effects.
In any case, if you're experiencing something out of the ordinary, the best first course of action is to pay close attention to what's happening, write it down in detail, spend time doing research using credible sources to form hypotheses, and discuss those hypotheses with your doctor. From there, your MD can recommend the best course of action, given your unique body, medical history, and potential side effects, which can be dangerous. DO NOT SELF-DIAGNOSE.
A New Hypothesis: Dysthymia
One of the first potential causes you find in any sort of research about low energy / sleep disturbance / insomnia is depression: they're very common symptoms of major depressive disorder.
The diagnosis didn't fit, though: I didn't have any of the other symptoms. I was still engaged with my family and my work, my appetite was fine, and my thoughts and feelings weren't the issue. Most of the negative thoughts and feelings I experienced stemmed from my fatigue. I was frustrated and down, of course: I had things to do, and I was sick and tired of not having the the energy to do them.
Given the circumstances, it seemed like I was handling it okay psychologically and thinking about the situation in in a rational way. It felt like a body issue, not a mood or mental issue.
As a result, I'd always discounted depression as the root cause of the fatigue: it just didn't make sense.
That changed somewhat when, after two solid months of extremely low energy, I once again started researching to figure out why I felt so terrible. I found an article from the Columbia University Mood Disorders Research Center that was closer to what I was experiencing than anything else I'd read:
Dysthymic disorder (abbreviated as DD) is chronic low-grade depression. It is one subtype of what the DSM-5 now calls "Persistent Depressive Disorder," or PDD. […]
The main symptoms of DD include: depressed mood (lasting 2 or more years); feelings of hopelessness; poor concentration or difficulty making decisions; low self-esteem; low energy or fatigue; poor sleep; and poor appetite or overeating.
Most of the time when people talk of “depression,” they have meant what the DSM-5 would call “acute major depressive disorder.” Major depressive episodes are generally severe, and may be fairly brief in duration—lasting perhaps weeks or months. In major depression, mood drops markedly, and is usually accompanied by poor sleep, loss of appetite, weight loss, hopelessness, and often with suicidal ideas. In contrast, [dysthymic disorder] is not as severe on a day-to-day basis, and (by definition) it lasts for years (even decades) rather than weeks or months.
[T]he symptom profile presented by people with PDD or DD is striking, particularly because it is so long-lasting and persistent within one person's experience, even though specific symptoms may differ from one person to the next. Whereas normal sadness or unhappiness generally improve once one's life circumstances improve, the typical person we see for our dysthymia program describes being 'depressed as long as I can remember' or since primary school, middle school, or 'over the past ten years.'
PDD is one of the most common mood disorders. It affects as many as 3 to 5% of the general population. It occurs about equally in men as in women, though women are generally more likely to seek treatment. Different studies suggest that the percentage of people with 'pure' dysthymia, or without a history of major depression, is about 1-2 %, and the rest of people with PDD have either intermittent or chronic episodes of major depression.
Regardless of subtype, many people with PDD have no idea that they have a mood disorder. They often think that they are “meant” to be depressed, or that negativity, pessimism, sadness, low energy and so on are just part of their “personality.”
That's… me. That's what I've been experiencing. I officially had a new hypothesis to test.
Why did it take me so long to find this?!
Answer: dysthymic disorder was added to the DSM-5 in 2013. When I was doing my initial research, it didn't formally exist as a diagnosis. Most of the high-quality resources on the topic from credible research institutions are new, written in the last two years. No wonder.
Testing The Hypothesis
A few years ago, I signed up for MDVIP, a subscription medical service, partly due to this issue. One of the major benefits is that your primary care physician conducts an extremely thorough medical examination every year, of the type that C-level executives of public corporations have annually to ensure they're fit enough to do the job. The routine testing is extensive, and your doctor spends about an hour and a half with you discussing the results. As a result, I have a great working relationship with my MD, with years of detailed medical history.
So here's what I did: I compiled my research on dysthymia with my log of symptoms, spent a day conducting a literature review using resources like PubMed and Examine.com to find potential treatment options, and went to talk to my doctor.
I narrowed my first things to try
list to three options, each of which had performed in clinical testing as well (or better) than both standard medication and placebo, with excellent safety and minimal reported side effects:
The idea was to try each of these options first, then move to testing more traditional prescription anti-depressants if they didn't work.
My MD confirmed my hypothesis as reasonable and gave the go-ahead to test each of the options in isolation.
My testing didn't start off well. St. John's Wort, which has many of the same effects as prescription antidepressants like SSRIs, produced terrible side effects: acute, persistent feelings of anxiety along with severe insomnia. I discontinued after two days.
Not terribly encouraging.
SAM-e was another story.
SAM-e: The Missing Keystone
S-Adenosyl Methionine (SAM-e) is a vital part of the human body's one-carbon cycle, which involves the production of a dizzying array of molecules essential to human metabolic function, including the production of neurotransmitters. SAM-e is essentially methionine (an essential amino acid) bound to an ATP molecule, and is produced within the body as a part of normal metabolism.
When the body doesn't produce enough SAM-e, however, the deficiency can create a host of issues, including symptoms of depression. Supplementing SAM-e can, in theory, correct this deficiency and restore normal function, in the same way that supplementing other amino acids can help correct other forms of deficiency. 2
Clinical research shows that SAM-e supplementation is very effective at reducing a wide variety of symptoms with excellent safety, very few reported side effects, and very low risk of toxicity at typical doses. Everyone reacts differently, of course, but it was an obvious thing to test.
I took 400mg of enteric-coated SAM-e, then waited.
It didn't take long: I felt better within hours of the first dose.
I slept better than I'd slept in years that night, and I woke up feeling refreshed.
I had energy again: everything was better. I was in a good mood, exercise felt normal, and social interaction was no longer draining.
Given the strength and immediacy of my body's response, it's very likely that I've been SAM-e deficient for many years: potentially since high school, which is the last time I've remember having consistently restful sleep.
SAM-e deficiency also makes other observations make sense: a few of my very worst years coincided with adopting a vegan diet, which I adopted as a test to see if it helped. Unfortunately, vegan diets are typically very low in folate, B6, and B12, which are cofactors the body needs to synthesize and process SAM-e. In retrospect, it was one of the worst dietary choices I could make, given that my body wasn't producing enough SAM-e in the first place. 3
After experimenting with dosage, 800mg of SAM-e twice a day on an empty stomach + a B-vitamin complex for cofactors produced the best results. All of my symptoms, including the insomnia, disappeared completely, and have not returned.
In my case, dysthymia (in the form of chronic fatigue and lack of restful sleep) was the result of SAM-e deficiency. I found the needle in a haystack: the solution to my most pressing personal problem.
There was, however, a nagging worry: is this just the placebo effect? Will it stop working over time?
It's been several months now, and the effects are consistent and stable. All of my symptoms have resolved. I'm sleeping well, waking up refreshed, and have enough energy to exercise, be social, and be productive again.
I feel like a new person.
This is the best case scenario, really: assuming that SAM-e deficiency is the root cause, correcting it is likely to continue to have the same effects, and the efficacy is not likely to decrease over time.
Everything changes, however: fixing this doesn't preclude having future issues. I'm investing a good portion of my newfound energy in things that make it more likely I'll be healthy, happy, and energetic long-term: exercise, social interaction, and self-care.
It's good to be back.
Lessons Learned
- The human body is extremely complex: an imbalance or deficiency in any area can have huge effects on the entire system. I really wonder how many common medical issues have a root cause in some sort of deficiency.
- Research works. Even in areas like health, where it's important to listen to experienced / credible professionals, doing your own research to form hypotheses is a good use of time. Your medical provider may only have a few minutes to spend researching your case, and has many other patients. You are able to spend much more time researching your particular situation than your medical provider can. Anything you can do to provide relevant information and reduce the search space for your medical providers is helpful.
- If you have a persistent medical issue, don't give up. The more consistently you track symptoms, research potential hypotheses, and try potential treatments (under medical supervision), the more likely you are to find something that works. It may take a while, but it's worth it.
Sources