Things to Be Sure Your Doctor Actually Understands: Part 3

I have dry eyes. Really dry eyes. They usually feel like I’ve been rolling around on a beach. I’m only exaggerating a little bit. The phrase bursting into tears doesn’t usually apply to me, not that I wouldn’t like to now and then. Usually if I tear up, I’m so surprised I don’t remember why I teared up. It’s not emotional or the lack of emotion; I’m apparently just drying up from the inside out. So that led me to the eye doctor with swollen, red, dry eyes and a very cranky attitude. The ophthalmologist leaned back in his chair and explained he doesn’t understand why, but as he understands it, for fibromyalgia patients doctors should just do whatever they can to make them feel better even if they can’t figure out what the underlying problem is. He proceeded to cauterize my tear ducts, so they can’t squeeze tears out of my eyes and into my nose. Yeah, it’s not pleasant. Okay, it hurts a lot. During the procedure, the ophthalmologist commented on my ability to hold still and not complain. “Fibromyalgia patients,” he said, “Are saints.” Do you know how hard it is not to roll your eyes while you have a cauterizer a nanometer away from your eyeball? While I appreciated that he didn’t question the discomfort I was having and that he appreciated my ability to make his job easier, he needed to understand something important: Fibro patients can differentiate between types of pain and react accordingly, anticipating the actual pain we will feel, when we will feel it, and how bad it will feel.

There are a few different, very distinct types of pain – using my own, non-medical terminology:

  1. Chronic pain/White Noise: While fibro is considered a chronic pain syndrome, there is a “chronic pain” component in fibro that is different than other types of pain. I call it white noise. It’s like static in my head when my tinnitus is acting up. It’s there all the time. It’s relentless. It’s also a very low-level pain, sometimes barely noticeable. Static, not fireworks. This is the generalized pain that seriously exhausts the fibro patient. It eats away at energy levels by its persistence, not its pain level. When I give a doctor a relentlessness scale for my pain, this is the pain I am rating. For me, this pain rests in my muscles.
  2. Acute pain/Fireworks: This is the opposite of the above. It’s the fireworks. It can come in clusters or focus on one spot. The key is, it’s not relentless. It comes and goes unexpectedly and shoots around like a shell out of a mortar, and it usually has a higher pain level than the white noise pain – close to the kidney stone/childbirth pain I will rate a 10. For me, this pain hits my joints most often and is usually associated with motion.
  3. Temporary pain: This is cauterizing my tear ducts or getting a cortisone shot into my hip bursae. It may hurt like heck during the procedure, and it will linger while things heal, but there is a deadline for the pain. It’s going to go away. I can do that.

Most importantly, all three of these pains are connected and relative. Pain is worse when it’s unexpected. It’s worse when it will not go away. Expected pain, not so bad. Pain with a deadline, not a problem. Fibro patients, not saints. We’re pain realists.

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