Sickness Behaviour: The Many Causes of Fatigue with Chronic Illness

Wrung-out dishcloth. Someone unplugged my power cord. Death warmed over.

All of these (and more) have been used to describe the fatigue associated with active RA and other types of chronic illness. And all of them have applied to me lately. Which explains why you haven’t seen much of me.

I have fond memories of the energy levels I had in the Fall. Looking back, I still can’t understand how I was able to do what I did then. Just thinking about it makes me tired. It’s also making me feel a little desperate and weepy — I have books to write, friends to see, stuff to do. But all my work body wants to do is rest. Preferably sleep. For days.


It’s called sickness behaviour — fatigue, malaise, and avoidance of social interaction — and it’s a normal consequence of inflammation. It’s easier for the body to heal when you’re resting.

Yeah, sure. But it does get really frustrating after a while.

I’ve been having two fatigue-related problems. One is pervasive fatigue that I just can’t get past. I had normal (for me) energy levels last year and then I got croup. Ever since, I just haven’t been able to get back on top. I did have to go off my biologic when I was sick and was off it for long enough that I could feel the RA coming back. I’m back on Humira now, but it does take about three months to get to full working capacity, so that could be part of the problem. May is the three-month mark and I’m hoping…

Another issue is that I stopped my NSAID after developing side effects. My rheumatologist said she’d rather have me on opioids than NSAIDs due to the latter’s potential for impact on the heart. So I’ve been taking hydromorphone instead, which kicks butt when it comes to pain, but also makes me really tired when I take it on a regular basis. As well, without the NSAIDs my fibromyalgia has been more active, which — you’ve guessed it — also makes me tired.

Don’t you just love that there are at least three really viable reasons why I’m exhausted all the time? And yes, that was sarcasm.

And then there’s fatigue problem #2. I’m pretty sure my body had been asking for rest for a while, but unless I win the lottery work is relevant to my ability to buy groceries. During a very busy week, I got invited to a fabulous event hosted by Ontario’s Lieutenant Governor (I’ll tell you more when I get my energy and brainpower back). It was inspiring and motivating and fantastic and required that I get up at 6:30 AM.

My body doesn’t do early mornings very well.

 Photo by David Govoni

The day after, The Boy and I went on a wonderful long walk in the spring sunshine, which was regenerating and delightful, but also pushed my body a bit hard. This was deliberate, because you can’t increase your strength and stamina without pushing yourself, right?

But my body had had enough. So in addition to a shoulder injury, it also saddled me with a sinus infection that developed so fast that I didn’t have time to get ahead of it. And close on the heels of that came another infection in the bladder area.

Being immunosuppressed is so delightful.

So I spent the last week mainly sleeping. There were several days where I wasn’t able to be vertical for more than three hours, and even that was a bit white knuckled. I felt like crap physically, and fairly terrible emotionally. There’s something about sinus infections that persuades me that this is how I’ll feel for the rest of my life. Hello, catastrophizing.

I’m slightly better now, although my sinuses still feel like they’re full of cement. But that means that I’m back to dealing with my general fatigue and the frustration remains. I rest, I reduce my activity, (Your Life with RA Book 2 will remain on hiatus), I practice self-care until I’m sick of it, and… I’m still tired and my brain has no writing capacity. And that's when your — okay, my — mind starts playing games.

When with this stop? Will it ever stop? Will I ever feel like I’m not wrapped in a damp, mouldy duvet? Will I ever regain that feeling of having a quick brain and energy to tackle the day? Will I ever wake up feeling rested again?

I’m pretty sure I will. But right now, I’m too damn tired to find the hope and the certainty it builds.


Rick said…
Sheryl asked me the other day when I thought it would stop? Meaning little mishaps and being so tired. I told her honestly, never. She agreed.
Kaz said…
I feel you, Lene. It's SO hard coming back from a setback. And effectively, that's what's happening for you. First the hospital drama, and starting to claw back from that, then infections and injuries - and each one of them plays into the one step forward, two steps back thing. I think that, perhaps, we get SO good at the mind over matter thing for dealing with the 'normal' effort it takes to get on with our lives when there's chronic pain and the regular fatigue that when there's something more on top of that, it poleaxes us, because that normal effort in itself would poleaxe a 'normal' person who wasn't sick in the first place...
We miss you - I certainly do - but it's important that you do take the time. The infections certainly don't help the mindset though...gah!
MomtoCamNC said…
I am taking three natural supplements for my RA. Boswellia, Tumeric, and Devils Claw. All work great, especially when taken together. I chose not to be put on for lifetime an immune suppressant. The drug my specialist wanted to put me on caused chronic loss of vision. After undergoing eye surgery 16 yrs ago to correct my then 20/400 vision, the last thing I want to do is voluntarily cause my vision to go back where it use to be. As well, all too well, I realize the body has a miraculous ability to heal from within. I am seeing a natural path doc, and am trying to exercise, in some form, for at least 15-30 minutes a day. I have made food changes, and know vehemently the foods my body does not tolerate well. I know RA is different in patients, but in the end it is a lifetime change. Wishing you better days ahead. Thanks for sharing your journey.
cathy kramer said…
I understand that fatigue completely. Sorry it's holding you back from what you want to get done (books), but I'm glad you are still finding a few fun activities to do and that you are sleeping. 😃
Elizabeth Riggs said…
Lene, dear one, what can I add to what has been said. I know what you are going through. I recently had Stem Cell injections into my SI joints and my hip joints. I was doing well, and going through physical therapy when I caught a cold. I have not been able to get back to it because fatigue and I am now having pain - serious pain - in my SIs and hips. Just from a COLD? Well, yes. Just from a cold - when you are immune suppressed. I try to keep up with the PT exercises, but I'm falling behind and losing ground.
So I'm with you, Canadian Sister! Keep on keeping on. Allow your body to heal and take joy in your special friend.
Love to you!
Kirsten said…
Sorry to hear it is going on so long! You've been through a lot this last year, so maybe (unfortunately) it might take patience. Sorry to use the "P" word!
Kary said…
I was in that same place from the beginning of the year until this month, I feel for you. But this too will pass, we have to keep the faith that it will and until!!!