That Old Familiar Feeling (of an Impending Flare)

That old familiar feeling.

Those of us who have been living with RA for a while know what it feels like when the illness flares up. Whether you have been through a few flares or more flares than an accountant whose parents are The Count from Sesame Street and Treasury Secretary Janet Yellin can count, rarely do we forget the feeling. That mix of pain, fever, exhaustion, and just a pinch of ambiguous malaise — it’s a potent brew, and once you’ve had a taste, you never forget it.

People struggle to understand the true extent of RA

One of the most common misconceptions about RA and chronic illness in general is that it can be nailed down to a handful of well-defined, quantifiable, easy-to-identify symptoms. Actually, humans, in general, have a real problem wrapping their heads around nebulous things, and that includes disease symptoms and comorbidities.

People like easy items that fit into easy boxes and have easy solutions, and those 3 things are literally the exact opposite of what rheumatoid arthritis and chronic illness is, so it’s no wonder that human beings we meet have trouble understanding the true extent of a systemic illness like RA.

Bottom line – if you can’t even describe what’s happening to you to someone else, it’s likely that you won’t be able to identify it to yourself, either. That’s why, when someone asks how we know we are flaring, the answer is, "We just know." It’s all based on feel.

Dealing with flare-ups takes its toll on the body

This business of "feeling" our illness and divining what is going on based on the twinges and pings our body experiences — well, it has its benefits, for sure, one of them being that we can always tell when something goes wrong. Big toe hurts? Well, that means my leg is about to cramp. Elbow stiff? That means my neck is gonna flare soon. Third arm growing out of my forehead? That means... well, you get it.

The thing is, this system also has its drawbacks, the most glaring of which is that when a flare-up comes, you can feel it begin and there’s almost nothing you can do. It’s like a car crash – and those of us unlucky enough to have been in one know that feeling of slow motion as it’s happening, but no matter what – there’s nothing you can do to avoid it. Sure, you can possibly lessen the effects, but there’s just no sidestepping it, and that takes a serious toll on an already stressed body.

Worse than words can express

The physical ramifications of a flare-up are pretty obvious. It doesn’t take a rocket scientist to understand what it feels like when you are getting sick. Even those of us who don’t suffer from chronic illness know what we experience when a cold or a virus is coming on.

Well, it’s like that, but instead of symptoms like a runny nose or a queasy stomach, it’s joint aches and a general sickness and extreme exhaustion. This creates a feedback loop which keeps folding back on itself and making things worse and worse until you just want to get into bed and pull the covers up over your face and have everyone stop freakin’ texting and calling and bothering you EVERY FIVE SECONDS!!!

Umm, yeah, well, you get it. It’s like that, but even worse than words can express.

The anxiety, pain, and exhaustion loop

Something else to consider is that it’s not just physical. Think about what you might feel if you woke up one day and you suddenly knew that at some point in the next 24 hours you were going to fall down and break your leg. Or your arm. Or your butt-bone – you get it. It would occupy a significant amount of real estate in your brain, and your anxiety would be off the chart. You probably wouldn’t do much, either, other than sitting around, because you wouldn’t want to be caught out when the accident or whatever it is actually happens.

Well, it’s the same with an RA flare. We know it’s going to get worse before it gets better (if it gets better), and that sense of impending doom pushes the stress level through the roof, which, in turn, has the potential to make the RA flare even worse, which leads to more stress, and so on and so on. It’s an exponential loop of tension, anxiety, pain, and exhaustion. Which brings us to why I’m writing this in the first place.

Dealing with flares is part of living with RA

A week or so ago, I got that old feeling in my bones. I knew it the instant I woke up that morning, just like the taste of an old favorite food you haven’t had in a long while. Or a dish you hate – same gross taste you didn’t like back then, so why do they keep making you try it? Either way, I felt the tingle and I knew I was in for a flare.

Now, thankfully, after 20 years of trying, we found a medicine that works for me — so that fact, combined with an obscure diet I concocted, keeps my flares to a minimum, thankfully. But they do still happen, and it always makes me wonder, "Is this the flare that’s going to be the one that kicks off the RA-fest that ends up making my medicine ineffective?"

Like I said, along with the physical exhaustion, aches, and overall crap feeling, there is that mental aspect – that existential dread that is unavoidable, and here I was again in that old familiar place. Familiar but as unwelcome as a jagged pebble in my shoe on a Grand Canyon hike.

So, I decided to blast it with a few days of steroids and hope that it went away. It seems to have worked, but the anxiety is always there, lingering, and that is a huge part of living with RA and chronic illness. Talk soon.