A Flare so Bright It Lit the Sludge




Pain takes up a lot of room in your head.

I will forever be grateful to the social worker from The Arthritis Society who told me that at a time when I thought I was losing my mind. I wasn’t. I was just having a lot of pain and it messed with my ability to focus and remember.

I’ve had a little visit back in that place for a while. The last time I took my trusty biologic was just after Christmas and then croup happened. Then there was a month of working on healing my voice and by the end of January, my SI joints were starting to get unhappy. Earlier this month, I started back with a smaller dose, but left over side effects from four weeks of prednisone made my biologic side effects go insane — GERD and a hysterical hiatal hernia that made it feel as if I was having a heart attack. So we backed off a bit on Humira.

And then came the Fibro flare. I couldn’t quite figure out if it was a genuine Fibro flare or it was a Fibro flare triggered by encroaching RA, but it didn’t really matter. The intense pain mattered. As did the thick brain fog. I couldn’t think, I couldn’t focus, I felt very much not like me. I did push through and write an article for HealthCentral, but it took me three days. In the end, there was crying. Not because of the work, but because of how hard it was to get through the day.  

Pain like that is as bright as lightning and as loud as thunder. Pain like that invades your mind and occupies it as it enthusiastically as the Nazis did Denmark during World War II. You might’ve had plans, but those plans are done and you better adapt and quick.

But how do you adapt to the kind of pain and brain fog that take up so much room that taking a shower and getting dressed exhausts you? Instead of taking care of yourself and the cat, doing some work, and being present in the lives of the people you love, you curl up like a hedgehog and focus on the next step, the next minute, the next breath.

Because that’s all there is — the fog is so close that you can’t see any further. And the pain is so intense that it is impossible to focus on anything else.

You can’t tell your work or your family when you will be present again. You hope it’s tomorrow, but wake up in the exact same place and everything gets delayed again. And no matter how many times you’ve experienced this, every time it feels like it is the end of the world. Your brain may be telling you that you’ve been here before, you’ve gotten through it before, but it feels so dire, so urgent, so terrible that you are convinced there is no way out. And because of the fog and the pain, it takes a long time to remember the coping techniques you used before.

I got a steroid shot a week ago and within 24 hours, I’d gotten my brain back and my stomach had started to simmer down to its usual manageable state of upset. The pain was continuing, though, which was significantly less fun. I have developed side effects to my NSAID, so instead had to dive into the Big Drugs. Which mess with my stomach. Nonetheless, I got my Humira shot yesterday, relying on the steroid shot to prevent the Big Bad from happening in terms of side effects. So far, so good.

And within hours of getting my biologic, the pain levels abated. They are by no means down to anything reasonable, but there was a significant effect. So it was a Fibro flare triggered by encroaching RA. Good to know.

Living with these conditions is a balancing act. They interact with each other, swirling in and around and through, blurring the edges so it’s hard to tell where one begins and the other ends. And what is usually milder side effects or co-morbidities flare up, as well, the minute the balance skews even just a little.

So I’m working on achieving the balance again, still feeling quite wobbly and tired. But now I have hope that I will get there.
  

Comments

Liza Kirschner said…
I've just been through something similar - I have fibromyalgia and lupus - Who knows which triggered the other but four days of pain, fatigue and brain fog has worn me down - Thanks you for writing so eloquently writing about such an elusive feeling!
Caroline said…
I have fibro, RA, degenerating disks, dessicated disks, bone spur in my neck, bursitis both hips - should I continue? No, its not a who-has-it-worse content... But I am happy to be a hedgehog sometimes and stay curled up in bed until I can breath without pain again.