Diagnosis Roulette: Coming to Grips with Fatigue

Since our last exciting episode of Diagnosis Roulette, our hero has undergone some more tests (some quite awkward, I must say) and we are still waiting on results.

In the meantime, let’s talk fatigue.

I actually don’t know a lot about fatigue. I have a couple of friends with chronic fatigue, and more for whom fatigue is a symptom of another condition, or a side effect from medications, or (in at least a few cases) a symptom of having very small children who don’t yet believe that sleeping through the night is a good idea.

These people have always had my sympathies, and I’m always angry on their behalf that there don’t seem to be any answers. I was horrified at the idea that one’s goals could be limited simply because someone was tired all the time. It wasn’t the fact that being tired would be a limitation – that made perfect sense to me; it was the simple fact that there didn’t appear to be a solution to this problem. Problems without solutions? Anathema!

And I’m slowly being forced to confront the truth, that now I get to be angry on my own behalf.

It’s been getting worse over the last year or so; really, since the end of my PhD. I put it down to seasonal affective disorder (which I do have, but which feels very different); I put it down to depression (same); I put it down to an infection, or some other issue. Sometimes I simply castigated myself as lazy, believing that I couldn’t really be that tired, because I shouldn’t be that tired, and I should just try harder to be awake.

But it’s like refusing to believe you’re in a fistfight until you get punched in the face.

I’ve also been in denial about the fact that I’m in pain all the time. Don’t get me wrong – it’s not dreadful pain (or at least I don’t think it is; my pain processing is a bit muddled, so it’s hard to tell), but it’s constant. Constant burning cramping abdominal pain. I’d describe it as a low-grade distraction, most of the time, which flares and increases in severity occasionally.

And now, as with the fatigue, I’m getting punched in the face. These things are correlated as well.

It’s funny. I can still do demanding shore dives. I can still run reasonable distances (I haven’t cracked 10 km yet, but give me a few weeks of training). I can still lift weights. I can hike 20+kms over mountains.

It’s just that now those things have more of a cost.

I’m still building muscle. My resting heart rate is still dropping as my fitness increases. According to some metrics (including a rather nice lipid panel), my health is on the upswing.

And yet according to other metrics, it’s in the proverbial crapper (yes, I may have Crohn’s, and yes, that was a deliberate pun. Not a good one, but forgive me, I’m a bit distracted…).

In a way, it’s not as much of a shock as it would have been a year ago. I’ve been slowly suspecting that the combined effect of endometriosis, hypermobility and maybe-it’s-Crohn’s-but-maybe-not has been building up. For a while, I thought keto was a magic bullet (for me). It gave me more energy, more clear-headedness, more get-up-and-go – once I adapted – and honestly, I think it’s the reason I’m not worse (this is confirmed when I go off keto for any period of time – at which point my resting heart rate skyrockets, my nausea gets significantly worse, my joints get inflamed and I fall asleep after eating a meal. I can tolerate it for about a week or so, and then it gets to a point of discomfort that forces me back onto the fat-heavy, carb-light approach).

Sadly, it’s not a magic bullet. It helps.

But it helps in the way that getting enough sleep and proper exercise help. They help, sure.

It’s just that it’s possible to do all those things – to have a good macro- and micronutrient profile, sleep eight hours a night, exercise for a minimum of half an hour every day, take two “rest days” a week (mostly walking and stretching for exercise) – and still be completely fucked (and not in the fun way).

As is my wont, when there is no medical advice in easy reaching distance, I turn to Doctor Google for information. Sometimes that information is in forums for endometriosis and Crohn’s sufferers; sometimes it’s in the primary literature (I generally restrict myself to the abstracts – I don’t have the expertise to critique the methods for these kinds of studies); sometimes it’s the sort of “Did you know…?” stories that wind up in science news. A lot of the time it’s on health and fitness websites (danger, Will Robinson!).

So far, I have found such earth-shattering advice for sufferers of fatigue relating to Crohn’s and endometriosis as follows:

“Make sure you get plenty of sleep.”

Cards on the table. I usually get between seven and eight hours sleep a night. Sometimes less if insomnia is kicking at me, sometimes more if I get to sleep in for whatever reason (I don’t actually sleep in. My body clock is too intense, which is probably why I’m so susceptible to Seasonal Affective Disorder. I have to get up and have breakfast and feed the cats and check my email and even exercise; but then I might go back to bed. I count that as “sleeping in”).

In addition, I’ve recently learned that chronic pain sufferers often don’t achieve deep sleep because the brain is managing pain. I’m not sure if this applies to me, since my constant pain is so mild (my acute pain is very nasty, but the chronic stuff is, as I said, manageable), but it’s a thought.

So, okay, as advice goes… that one sucks.

“Make sure you eat properly.”

Yeah, I track everything I eat, weigh food to make sure I’m getting enough or not too much of the various macronutrients, keep track of micronutrients and vitamins, and supplement things I don’t think I’m getting enough of (yes, scientifically backed supplements. Shush). I think I’ve got this covered. I was briefly concerned I might not be eating enough – I’m at a mild deficit at the moment – but a little research and a little math shows that I would have to cut back a lot more for this to be affecting my energy levels. It’s easy to under-eat on keto, because fats are so filling. When you’re used to carbs, which don’t necessarily hit satiety cues properly, it’s a different game. Mind you, it’s also easy to over eat on keto, because food is so calorically dense relatively to how much of it there appears to be. Depends on how you roll.

So, I’m okay there.

“Get plenty of exercise. Try to get at least half an hour a day a few times a week.”

Ahahahahaha.

Yeah, I’m covered. I’ve been doing Active April; our state government initiative to try and motivate people to get exercise for 30 minutes a day. At this point I average 80-90 minutes a day (that’s including my physio work, stretches and foam rolling, but also running, weights, diving, bushwalking, and walking dogs).

Right! Any more advice, if that’s not working?

“…you might be low on B12.” (Crohn’s)

This is good advice. It’s due to an absorption issue in the small bowel.

As it happens, my B12 is ridiculously high. It’s outside normal testing parameters. I was briefly concerned this meant my liver was not processing it properly, but my GP assuaged my fears. My B12 is good. It is better than good. It is great.

Anything else?

*crickets*

Seriously. I am so tired I can’t move. I’ve had a short black espresso and two bottles – bottles – of sugarfree V. There isn’t anything else I can do…?

*crickets*

If I were certain that my issues were being caused by endometriosis only, I’d be taking naproxen, or possibly ibuprofen, to deal with the symptoms. NSAIDs (non-steroidal anti-inflammatories) are great for period pain, and since my endo pain is not usually crippling or overwhelming (mostly), it really takes the edge off. I’m guessing also that the reduction in inflammation might restore my energy levels.

Unfortunately, I might have Crohn’s. If I have Crohn’s, NSAIDs are off the table. This seems counter-intuitive, since it’s an inflammatory condition, and anti-inflammatories seem like a dead obvious solution. Unfortunately, they can do nasty things to a delicate gut over time, and trigger progression of the disease (apparently), so nope. No naproxen. No ibuprofen. No freaking Voltaren (diclofenac).

This leaves me with paracetamol and codeine. As far as I’m aware – and I could be wrong, my understanding in this area is not detailed – these will help with pain (codeine is specifically good for gut pain, since it slows peristalsis. There’s a rather obvious side effect there, but I prefer it to pain), but do sweet fuck-all to help with inflammation.

Which is probably what is causing the fatigue.

Addendum: I wrote this a bit over a week ago. Since then, I’ve been in Perth for work, where the pressures on my time and mental energy are greatly reduced. Literally all I am required to do is my job (soothing taxonomic work that I love) and working out. While I miss Husband, dogs, cats, friends and my house, I don’t have to do any house work, yard work, pet care, emotional management or social scheduling; while I could do academic work, it’s perfectly okay that I don’t have the energy or presence of mind to do so (I don’t. I finish work, go to gym, watch Supergirl, and go to bed). Most importantly, I’m not worrying about money, or all the things I should be doing that I’m not.

I am still having fatigue. I still have pain and inflammation in the gut region. I still have no brain left at the end of the day. Other academics say that they tend to do a lot of work in the evenings when they travel; that’s not something I can do.

It is, nevertheless, vastly improved. And it turns out I respond well to ten or eleven hours of sleep a night.

When I have limited resources, it’s nice to have a period of time where’s there’s less I have to spend them on. I’ll go back to my normal life soon, and I’ll quickly be back in energy debt, which will suck, but I’ll have the compensations of my loved ones (some of whom are quite fluffy) and my space to help out. So it’s not all bad.

But I think it’ll be a long time before I can make peace with the limitations of it.

 

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