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.

Things to Be Sure Your Doctor Actually Understands: Part 2

Next month I have my yearly checkup with the doctor. It’s a new doctor – I work with residents, so every three years I get to break in a new doctor. Some people don’t like that and prefer to get a consistent consultant. Between you and me, I like breaking them in before they settle into their opinions. When they graduate, they have a good understanding of fibromyalgia patients, whether they want it or not. Since this is my first visit with this new doctor, we’ll have a little talk. I have a few concerns that I need to know are or are not fibromyalgia- or weight-related, because let’s face it, I’m getting old. I’ll be 60 in a few months, and I have to learn what to expect as I age. And any doctor who sees fibromyalgia patients needs to understand a few things about aging from the perspective of the fibromyalgia patient:

  1. It will be very difficult for fibro patients to differentiate between aging pains, fibromyalgia pains, and pain signifying illness. Guidance and patience will be an absolute must for the aging fibro patient. We will have to relearn how to perceive the pain we feel. Not only will we feel pain that has no real origin or cure, but we will start feeling pain that does have an origin and may have a possibility for relief. We won’t be used to that. Fibro patients may not know to ask, or they may be very wary of medications because of a history of side effects and allergic reactions. It will be very easy to overlook significant symptoms of critical illnesses. It will be very easy to lose patience when a fibro patient contacts their doctor too much.
  2. Education about aging symptoms will be much more valuable than a “well, you’re not a spring chicken anymore” attitude. We’ve already gotten that from friends and relatives for years. I’ve been hearing that since I was about 35. I haven’t felt like a spring chicken… ever. I have no comprehension of life or movement without pain. Being told essentially to put up with aging pains as a part of life is, frankly, a little insulting. Doctors are usually pretty good about telling patients about, for example, cancer symptoms to look for, early warning signs. That is much more helpful.
  3. Fibro patients will feel aging pains differently. Our brains tell us we’re in pain when other people may not perceive pain at all or a much less intense pain. It’s not just the basic fibromyalgia pains that are intensified, it’s any pain. I’ve gone on the theory that I’ve had a rheumatic process that is so mild the doctors have not been able to discern it, but my pain sensors are so darn good, I have been able to feel it. Of course, if (when) I actually get a rheumatic diagnosis, it will be very difficult to prove that it’s an ongoing process, not a new condition.
  4. Fibro patients already struggle with mental health before the aging process. We struggle daily when we’re young. As I get older and realize how much I have not done, how much I lost to time spent waiting, resting, the struggle intensifies. That very normal end-of-life mental weight people feel is exacerbated by chronic pain. I suspect we feel it sooner. I have wondered for many years now, if I felt 80 when I was 30, what will I feel like when I’m 80, and do I want to know? Since mental health is integral to physical health, doctors need to be consistent in monitoring for depression and suicidal thoughts as the fibro patient ages.

Again, mutual respect and communication between patient and doctor are better than any prescription medication. I’m going to have a sit down with my new doctor and express my concerns about symptoms that seem suspiciously like aging rather than fibromyalgia and see what happens. As always, I am not expecting a miracle cure or even anything curable, but I’ll listen, just in case.