Fibromyalgia, Gauging Pain, and Self Doubt (revisited and revised, in part)


Before you read this post, I recommend you go here.

I’ve been thinking back to this post from last July…

As you may have noticed I have yet to post my follow-up to last Wednesday’s question, “What brings you strength?”  That trend will continue, as I have something else on my mind.

Over the past two weeks I have had a pain somewhere between my shoulder blades and my mid-back.  For the most part, the pain has been consistent, but last night something changed.  Everytime I moved in my sleep, my sleep ceased.  I’d wake up to stabbing pains that seemed to prevent breathing and movement.  Somehow, I managed to fall back asleep each time.  Much thanks to Amitriptyline, I’m sure. But I’m still not sure falling back to sleep was more convenient than just staying awake.  At least when you’re awake you can consciously decide not to move in a manner that steals your mobility and your breath.

Anyway, upon waking this morning I made the stupid, stubborn, short-sighted, decision to go to work, like it ain’t no thing to have blurry vision each time you breathe in deep.  Like it ain’t no thing to be unable to stand up straight.  Like it ain’t no thing to have what feels like lightning bolts travel through your body every time you go over a bump or turn a corner.  Seriously, I had NO idea turning the steering wheel used so many muscles in your back.

But I wasn’t totally stupid.  I did leave a desperate voice mail for my chiropractor in which I said something about imminent death and begged for her time.  And, lucky for me, her unbelievably sweet office manager (who is, in fact, the sweetest woman I have ever met, after S Gold, of course) called me within the hour with delightful news.  They had a spot for me!  So I busied myself with work, and minimal movement, and the wait zoomed by.

Then came the car ride.  And I almost died.  Not because of a dangerous driver (though I saw plenty) or wild weather.  Nope.  I almost died of wussiness.  Now, I’m not sure that is a real word, but I honestly thought I might not make it the twenty minutes to her office.  I worried a bump in the road might sever my spinal cord.  I was sure another breathe meant certain death.  But I was wrong, as I often am.  Thank you Mom for talking me through the rough ride.

Now, to shorten the rest of the story.  I went to the chiropractor.  My floating ribs appear to be rather confused.  They used electrical stim and it worked like a charm… for half an hour.  I ate lunch at my parents’ home.  I went back to work.  I worked a full day.  I nearly lost my sanity in pain on the drive home from work.  This time Daniel talked with me, and the distraction was just enough to get me home before I totally wussed out.

Since being home I’ve done a lot of nothing.  But I have realized the pain is not simply skeletal or muscular, it’s a healthy mix of both.  It’s not my normal fibro pain.  Nor is it my arthritis pain.  This feels like (even though it likely isn’t) it’s far too near my spine for my comfort (in all seriousness).  I’ve got a massage scheduled for tomorrow at lunch, although the thought sounds like torture.  And, to be honest, if I feel like this in the morning, I’m going to a “real” doctor.  Whatevertheheck that means.  I cannot live with pain like this.

Which brings me to a post I wrote last july: Fibromyalgia, Gauging Pain, and Self-Doubt.

Amen.

That pretty much sums up what’s been on my mind today.  So, as I sat waiting for my chiropractor today I reread my post.  And I’ve been thinking.  Am I actually a wuss?  What if I really am nuts?  Am I just overly-sensitive?  Why the heck have I been to the doctor SO MANY DANG TIMES this year?!  If it’s not a cold, it’s a busted foot.  If it’s not a busted foot it’s difficulty breathing.  If it’s not difficulty breathing, it’s an ear infection.  If it’s not an ear infection, it’s… ?!  What is this?  If this is simply “back pain” I’ve never had pain in my life.  If this is “normal” I have led the most privileged life… ever.  I kinda feel like I have, but shouldn’t we all?

Now, to tweak the post from last July:

I had a doctor’s appointment over lunch and by the time I got back to work I was spent.  I gutted out another hour before deciding to work the rest of the day from home. As I walked to from my car I did what I always do when I leave return to work early from a doctor’s appointment… I quizzed myself.  I ranked my pain on a 1-10 scale. I ranked my fibro fog on the same scale. And then i second-guessed myself.

Would “normal” people think this pain was as unbearable as I seem to think it is?  Would “normal” people support my decision if I could share my pain with them?  Would normal people even have gone to work today?

I have to ask myself those questions nearly everyday.  I think one of the most challenging aspects of fibromyalgia (and any invisible illness) is self doubt.  And it was introduced to me by doctors, teachers, friends, coaches, and so-called experts.  And it leads me, on tough days, down a mental road of confusion and frustration.  Wondering if I’m just a wuss.  Wondering if I’m positively incapable of being the tough girl I was taught to be during my decade as a gymnast.  Wondering if saying I have fibromyalgia is just a polite way to tell people I am an incapable and inconsistent Gen Y-er with absolutely no tolerance for pain.

Screw you, self doubt.  I am better than you.  I trust myself, and I am learning to trust the part of my brain that tells me, “Enough is enough, K8.  Be wise with your health.”

So, after the round with self doubt I decided to dwell on the positive.  I was am able to contribute significantly to month-end reporting and analysis last this week.  I am learning a new skill, with the help of a coworker, and I was able to use said skill complete a project all by my lonesome Monday today.  I was able to work around the house over the weekend without working myself to immobility.  I know that sounds absurd, considering the nature of this post, but it’s true.  My back was hurting long before last weekend.

I am making progress. I am making progress at a more deliberate pace than I, and most everyone but my doctor, would prefer. I am making progress because I listen to my body and allow it to have ups and downs.  As long as the next down is higher than the last I will continue to be upbeat and optimistic.  If ever the next down is lower than the last I will reassess and revamp my coping methods and treatment plan.

Thanks for sticking with me through this lengthy post.  Pardon any confusing bits.  I fear this evening’s painkillers have done a number on my thought-process… and my typing.

And a special thank you to my Twitter friends who suggested ice as a comfort for extreme back/spine pain.  I am using it, as I type.  I just pray it continues to help me, as I sleep.

One Respond

  • Dawn on May 29, 2009, 05:06:48

    Hi K8.
    I have been living with chronic pain and fatigue for so long I don’t think I can remember what “normal” is. lol. It’s only in the last couple of years that it’s really starting to affect me,(since the birth of my youngest). Maybe my body has just had enough.
    I have had the same pain you described between my shoulder blades, feels like someone is sticking a big knife in my back. It comes and goes and I have just added it to all the other pains I have.
    Most nights I wake up from some pain, usually in my leg or ribs, that’s a good one, when you feel like you can’t breathe. Some nights I’m just too scared to go to sleep as I don’t know how bad it’s going to be when I do sleep.
    Sorry to sound so negative, I’m actually coping really well. lol.
    I understand what you say about self doubt though, you find yourself thinking “Is it just me?” But I have found more and more people with the same issues, we can’t all be wusses surely? I know a lot of people who wouldn’t be able to cope with what we have to go through, you know the ones who get a cold and go to bed for three or four days? I haven’t spent a day in bed for a long time. lol.
    I think it’s my kids give me a reason to keep fighting on and not let me give in.
    Apologies for the long post. 🙂
    Hope you find it helpful.
    Dawn

    Reply to Dawn

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