The PTSD of RA

So, I’m just making my bed, a small chore I do every single morning without much thought. Neatening my bedroom for the coming day lightens my mood and puts a little spring in my step. Yes, I know. That’s nuts, but that’s me.

Anyway, I pull up the sheet and the summer-weight down blanket. I turn back the old, eyeletted top hem of the sheet neatly over both. Pretty! Then I pull the quilted bedspread up. I get one side tugged nicely into place and walk around the bed to do the other. I grasp the bedspread, give it a yank, and the rheuma-dragon bites savagely into my wrist, making me gasp with pain. I drop the bedspread and grab my screeching wrist with my other hand, pulling it protectively into my chest. The vicious, stabbing pain arcs down into my hand, through my fingers, and up to my elbow. And then it disappears. Just like that, it’s gone.

It’s like nothing happened.

I bend my offended wrist cautiously. Carefully. Nothing. I give it a light shake. No pain.

Sheesh! Cursing silently, I finish making my bed. My carefree mood is gone. All I’m left with is my pulse returning to normal—and a slowly settling fallout of fear. For the next hour or two I’ll wait in uncomfortable anticipation for that *!#* dragon to ambush me again. It could happen at any moment. It’s always unexpected. I know he’s there, lying in wait, chuckling wickedly to himself. The moment I let my guard down, he’ll spring.

Or maybe he won’t. Rheumatoid disease is like that: impossible to predict. I don’t know if today I’ll suffer an agonizing flare, a mild, almost negligible flare, or no flare at all. I don’t know if it will last for a half an hour or half a week. Or even a month. All I know for sure is that I just experienced a heckuva nasty twinge in my right wrist, one that came and went in the twinkling of an eye. One that pulled the shades down on what was a decent day.

Early in my RD history, twinges like this were normal. Often (though not always) they were the precursor of a bad flare developing in the twinging joint, generally within the next four to eight hours. Often (again, though not always) they were disabling. I could pretty much kiss being able to use that wrist and hand—maybe even that arm—goodbye for some unknown amount of time. And I knew there would be pain.

Treating it meant heat and ice packs, OTC pain relievers, and resting the involved joint. If the flare was truly agonizing, and I could finagle an unscheduled, walk-in appointment, my doctor might prescribe an opioid pain reliever, just enough to last a couple of days. If the flare lasted longer than that, I’d have to go see him again.

Once, when the pain was in my hip and it was so bad I could barely walk, sleep, lie down, sit, or stand, he hospitalized me, administering sedation and opioids via injections until the flare subsided. It took three full days.

Is This PTSD?

Post-Traumatic Stress Disorder, according to the National Institutes of Health, “is a type of anxiety disorder. It can occur after you have gone through an extreme emotional trauma that involved the threat of injury or death.”

Given bad old experiences with RD flares, is it any wonder that a sudden, sharp twinge scares the you-know-what out of me? Even though my disease is relatively “under control” these days? Even though I hardly ever have flares as bad as the bad old days?

Incurable, recurring pain is traumatic. It’s scary. It may keep you from functioning, from carrying out your responsibilities, from living with joy—or at least, from living in contentment. It causes guilt, too, and sometimes even shame. I always felt terrible when I had to call in sick from work or cancel plans with my family or friends. (I still do, though I’m better at dealing with that guilt than I used to be.) I felt bad when I couldn’t prepare dinner, or sweep the kitchen floor, or do the laundry. Pain like that carries all kinds of sticky, heavy baggage.

So yes, I think my reaction today to these twinges is a form of PTSD. I’m not comparing what I experience to the terrors that war veterans, torture victims, or victims of abuse experience. Their PTSD is on a whole other level from mine. But these no-warning twinges of pain I get now and then do act as a trigger, suddenly downloading a passel of swollen, throbbing, just-saw-the-damn-thing-off memories into my present-day consciousness, and inevitably, they darken it. I do experience an increase in heart rate. My mood plummets as, in my mind, I moan, “oh no, not again! Please, no!” And I do wait uneasily for twinge to grow into a flare that settles deep into the joint, making me hurt miserably. And if it doesn’t disable me, it may still force me to function at a fraction of my “normal” level.

Coping with RD-PTSD

Now, here’s where I’m going to lighten up. These days, bad flares happen only rarely to me. That means that all that instant, unasked-for angst I experience when I twinge is for nothing. Nada. Because I’m lucky enough today to have good medical treatment for my rheumatoid disease, and because I’ve gone out of my way to learn all I can about it, I’m much more able to cope with flares—of all intensities. The drugs are keeping the rheuma-dragon too sleepy, most of the time, to do me any real damage.

In addition, I do my best to maintain a healthy diet, get a reasonable amount of exercise, and practice good sleep hygiene. I keep a close eye on my general health, as well, by getting a yearly physical and gyn exam. All of these can help me feel better, overall.

I also cope with pain in ways I didn’t know about back in the bad old days. I practice mindfulness, for instance, and I’ve studied cognitive behavioral therapy (CBT). Neither of these can or will stop the physical pain of a flare, but they help me enormously to cope with the mental aspect: the fear of having one. I’m an optimistic type of person. I go out of my way to look for sources of joy—and I almost always find them. Joy, on its own, almost always helps me cope post-twinge.

Respecting my Own Feelings

Finally, I respect myself. While a sudden twinge doesn’t necessarily mean I’m soon to suffer an awful flare, it’s important that I acknowledge the reality of this disease. RD is shifty. It changes. So, it makes sense to be aware, ready to do what I can to help myself if a bad flare settles in. I can educate myself, listen to my doctor, and be ready to ask for help—including asking for professional help with my mental health—if I need it. I can set guilt aside and take positive steps as I live as well as I can with rheumatoid disease.

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