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.

Please be sure to check the resources listed below.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1.        Post-Traumatic Stress Disorder. (2018, March 26)  Medline-Plus, National Institutes of Health. Retrieved on June 22, 2018 from https://medlineplus.gov/ency/article/000925.htm
  2.        Cognitive Behavioral Therapy Online. (n.d.) OnlineTherapy.com. Retrieved on June 23, 2018 from https://www.online-therapy.com/cbt
  3.        How to Practice Mindfulness. (n.d.) Mindful.org. Retrieved on June 23, 2019 from https://www.mindful.org/how-to-practice-mindfulness/

Comments

View Comments (9)
  • Angela Lundberg
    8 months ago

    This is a wonderful article, Wren! Thank you for sharing it. I’ve never thought about if I experience PTSD too…but I’m sure I do, and similar to what you described. Fear, anxiety, triggers, flashbacks, paranoia, physical symptoms…yep. Hang in there, lady! And keep making your bed if it makes you happy. 🙂 P.S. If you’re nuts then so am I. ha. Miss you!

  • rockcandi
    8 months ago

    Awesome article! I have PTSD from a horrible trauma in my life and I would’ve never made that connection to what I experience from RD, but it’s the same thing for sure. I get horrible anxiety to the point of panic driven seizures when I feel a flare coming on bc I’m so fearful of becoming completely incapable of taking care of myself and now my son too. I did however do a much better job this time of calming down quickly and immensely (currently in the midst of a long flare but I’m still capable, just operating at half capacity). Actually, it wasn’t me but God. I felt panicky, my heart racing, world getting black at the edges and closing in on me, etc. Within half an hour I realized what was going on and why I was so anxious. Immediately I prayed and my mind cleared right away. I thought about how it wasn’t an actual life or death issue and that, although I struggle at and hate doing this, I’d just have to ask for a lot more help from my husband and mother in law IF I became incapable of taking care of myself and son. That’s not such a big deal to be so anxious that I’m allowing my mind to render myself physically and mentally worthless. As it turned out I didn’t need to be so concerned anyway bc the worst didn’t happen!

  • Nina Winterbottom moderator
    8 months ago

    I am so glad you have this support, @rockcandi. It sounds like you’re able to focus on constructive and helpful thoughts, and that is so much easier said than done! Thank you for sharing your story here 🙂 – Nina, RheumatoidArthritis.net Team

  • rockcandi
    8 months ago

    Thank you @ninahu! I pray that everyone that I feel I’ve gotten to know on this site, those Idk yet, and anyone with a debilitating chronic disease like RD finds the comfort that only He can give, whether they ask Him for it or not bc I ask for them!

  • mcadwell
    8 months ago

    I experience RD-PTSD (that’s a good acronym for it too). When I get a twinge like you described, I also wonder if it’s going to come again or end up in a flare. I still do things that cause these twinges, or worse pain, because I won’t stop doing some things I like (such as hand sewing). But the PTSD aspect is still there – is this pain leading to something worse? Also, I have the anxiety of wondering if tomorrow will be the day my right hip/knees/ankles stop working correctly and I’ll be stuck having to use a cane all the time. I wish the best for all of us!

  • Cloudy
    8 months ago

    Thank you for this article Wren. It has helped me to understand my own reactions better. I feel silly when I react strongly to one of these sudden twinges – they can be so fierce and then disappear! And then I wonder if I have just imagined the intensity of my pain and if I am being a hypochondriac. So I smile and say to others “oh it was just a twinge, it just caught me out a bit” and keep the dread I’m feeling to myself.
    My first clear symptom of this disease was a fierce persistent pain in my right thumb. I still get twinges in that thumb and they really make me jump! They set me remembering my journey through the increasing pain and the fear and confusion of those early days. I remind myself that I have a good treatment plan now – but that anxious awareness never quite settles. Another joint will complain sharply, or the low level pain in my hands will ramp up a bit and I start wondering – am I going to have to contact my specialist over this? And is he going to believe me?
    I guess RA inevitably loads you with a responsibility to work on your health – including your mental health.

  • Jo J
    8 months ago

    What a great article! Thank you for opening up. I think many of us have similar responses to our RD. Personally, for me it is related to the year prior to my diagnosis. I felt desperation as my pain and fatigue grew eventually retiring from a job I loved. My first Rheum repeatedly told me she didn’t “agree” with my symptoms. A trigger, sometimes pain, sometimes unknown; will “flare” the desparation of those days. I spend hours writing a letter to her in my head. The professional caring of my current Rheum is gradually helping these emotional flares as we search for the right treatment plan for me.

  • Monica Y. Sengupta moderator
    8 months ago

    Thank you for sharing, Wren. This was a very moving article!

  • Lawrence 'rick' Phillips
    8 months ago

    I am sorry for the pain Wren. I can relate to the pain but not to the PTSD. We get to describe our pain in our way and I respect your thought on how pain relates to you. Many blessings dear friend.

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