Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Explain the Pain

I wonder if people, even doctors, can comprehend how chronic spondyloarthropathy pain actually feels. I thought I'd try to describe the pain I live with in words anyone can understand.

Here's my description -

That not-so-funny-bone feeling when you whack your elbow - the one that gives you a slightly pain shocked feeling and makes you a little bit nauseous. I get feel that many times each day, but all over my body. Mostly it happens in places around my right sacrum and my right hip. Sometimes I open a lid too fast and feel it in my wrist or thumb. Sometimes I turn my head too fast and feel it in my neck or shoulder. Or I start up a flight of stairs and feel it in my left knee or right ankle.

That oops-I-bumped-a-bruise feeling - the one that makes the place of injury ache all over again. I feel that in my tail bone every single time I sit down too fast, and I feel it every time I lean back against my right sacrum.

That oh-crap-am-I-coming-down-with-something achy feeling - the one that makes one wonder if it's the flu or a cold. I feel that at random times throughout the day, night, week, month. For me it's called a flare, and I never know if it's going to wipe me out for moment or a month.

That I-must-have-gotten-something-in-my-eye irritation - the one that makes you stop what you're doing to figure out if it's an eyelash or contact problem. I have constant "floaters" that make my vision skewed all day sometimes. I also get Hemiplegic migraines that start with pain in my right eyeball and then, if it's a bad one, works it's way down the right side of my body until I can't work my right leg. Of course there's also the possibility that it's "just" iritis.

Please feel free to add your own descriptions below. I'm feeling a bit irreverent today.

How about this:

That "I've got a band of barbed wired wrapped around my chest" feeling - the one where every time I take a deep breath, the barbs dig into my chest and the wire gets tighter.

Right. I left that out! Thank you. I only get barbs in my lower ribs around back and occasionally my right ribs below the breast. The barbs around back happens usually when I'm reaching or have taken my first swimming stroke. Maybe that could be a new post - trying to breathe while swimming and not taking a sharp breath from pain?

this was an analogy that worked very well one time:

when my hamstring tendon entheses (right behind each knee) were very inflamed.

someone i was with was getting annoyed that i couldn't keep up walking, had to continually stop, was going slower and slower, etc.

i explained that it felt like someone was slicing the back of my knees with a razor blade.

her response, "oh, that does sound painful."

it was a good analogy.

It feels like someone is sticking an ice pick in my hip and prying the joint apart.

Oh, how I can relate to that. Happens all the time.

That oh-crap-am-I-coming-down-with-something achy feeling - the one that makes one wonder if it's the flu or a cold. I feel that at random times throughout the day, night, week, month. For me it's called a flare, and I never know if it's going to wipe me out for moment or a month.

This is how I have felt for many many months now. I wonder if I will ever feel normal again.

The OMG, I feel like I have steel rods in my back!

I sometimes feel like my spine is a sword with the sharp end pointing down, sometimes my hip feels on fire, other times I feel like someone is sqeezing my insides.

Wow - you're all doing great at explaining the pain!

The hip-being-pried-apart-by-icepick pain really sounds bad. I haven't felt that one.

Nor have I felt the cutting-the-backs-of-the-knees-with-razor-blades, thank goodness.

And the feeling like swords-are-pointing-down-next-to-the-spine... well, that just sounds horrible.

But all of these great descriptions reminds me of another of my own personals pains. The my-sit-bones-feel-like-I'm-balanced-on-two-large-marbles while sitting on a hard seat.

And also the (and I know guys have this nerve , too) I rode my bike too long, and before my right leg goes numb, a-sudden-stabbing-inner-groin-under-the-tailbone pain tries to knock me off my bike before I can stop and stand aside for a few minutes while trying not to collapse.

Maybe by the time we get done here, we'll have a whole new dictionary full of precise pain terms we can just print out and circle all that apply in prep for doctor's visits.