Chronic Illness and Emergency Medicine (Or At What Point Do I Decide to Visit The ED?)

Recently, I found myself in the local Emergency Department with a huge amount of facial nerve pain. I'd been dealing with some tooth issues (or so I thought), but the pain became too severe and was unresponsive to either narcotics or Orajel, I had to find out if something more was going on. Of course, as with most of my trips to the ER, it was about 3 o'clock in the morning, and I was dragging my very tired husband out of bed to take me.

Fortunately, the local ER was on the slow side that morning, and I was seen pretty quickly. At this point, I had nerve pain radiating on both my upper and lower jaw on my right side of my face, and I was feeling it up into my cheek, eye, and temple.

I've had many, many trips to the ER over the years, so this wasn't my first rodeo, but the first contact with the doctor was a bit of a surprise, even to me.  Her first words to me after I explained why I was there?

"I'm not going to give you narcotics."

I think I managed an "Ok." (Even though I've learned to function in a fairly fatigued and pain-ridden state, it was still 3 in the morning, and I'd been awake for 23 hours at this point, the last 8 in excruciating pain. If I'd been able to think on my feet, my response would have been, "I'm not here for narcotics, I've got those at home. And they're not working.")

After the doctor established I wouldn't be getting any pain meds, she asked me to explain the pain again. My gut feeling said she was looking for any reason to tell me this was dental and I needed to see a dentist, but I also had the feeling that there was something more here.

This gut feeling was confirmed when she said, almost surprised, "Oh, I think we can help you. This sounds like a Parotid Gland infection."  And so I left there with the first dose of an antibiotic, a script for a 10 day course of antibiotics, and a shot of Toradol. After the diagnosis, the doctor asked me a few questions about who my primary care was, and I was able to educate her a bit more about the medical team I work with, the conditions I've lived with for years, and the fact that I will only go to an ER/ED if I think there is something really wrong. Once she realized I really wasn't interested in additional narcotics, she seemed to relax, and it ended up being a fairly quick and pleasant (well, pleasant for an ER visit) visit.

Over the years, I've developed my own set of criteria on when I need to go to the Emergency Department. There are many situations in which it's fairly obvious, such as something traumatic, but for someone who lives with chronic pain and multiple illnesses, I experience symptoms on a daily basis that would send the average "normal" person to the emergency room.

I want to make it clear that this is my own criteria for when I need to seek out emergency services, and should not be construed--in any way--to be medical advice for others. In fact, I regularly advise people to do the exact opposite of what I do myself.

Tiff's Criteria for ED Visits

Am I severely dehydrated? 
I've had the unfortunate experience of not being able to keep fluids in me for a fairly lengthy period of time. When this happens, I know it's time for IV fluids.

(After collapsing) Did I lose consciousness?
I fall. A lot. I have had the unfortunate tendency recently to have my legs give out on me or the room start spinning at a pace I can't keep up with. But I know if I fall (or collapse) and lose consciousness, I might have hit my head, and that can be fairly serious.

Am I having trouble breathing?
I've dealt with asthma my entire life and have had numerous upper respiratory infections. I've dealt with bronchitis and pneumonia on a number of occasions.  When I'm having challenges breathing and my inhaler doesn't do the trick, it's time to get it checked out.

Is my pain "strange" or intractable?
I live with pain all of the time. I live with pretty severe pain all of the time. That said, there are certain types of pain I consider to be pretty normal for me: my rib pain from costochondritis, my hip and knee pain from subluxations (which also can cause nerve pain, depending on which way things move), chronic back and neck pain, and lately, some pretty severe GI pain that I've nicknamed "Mr. Stabby."  If I have severe pain that isn't one of my normal pain areas, isn't responsive to my pain management methods, or just seems odd to me, that's when I'll head over to the ED.


How will I likely present to the ED doc?

I tend to be pretty stoic with my pain and tend to remain fairly calm in situations where I'm the patient. Yes, I likely have waited awhile since the onset of my symptoms to come in, because I've been trying other things or working up the courage to face going to the ED. Yes, if I can crack jokes, I probably will. I am one of those people who regularly hit the higher end of the pain scale, and it won't show on my face. Yes, I might even be on my phone playing a game, trying to distract myself as much as I can until you treat me. I probably won't be crying--usually hurts too damn much at that point. I always try to remain polite and friendly, even if you aren't, but I will advocate for myself. None of this lessens the fact that I require treatment. I am not medication seeking--in fact, I prefer to utilize non-narcotic interventions when possible. I would greatly prefer to see my medical team over whatever issue I'm having, but they're generally not available when I'm showing to the ED.

I realize I present very differently than many people's assumptions of what someone reporting my symptoms should look like. I'd like to say that I'm just bad ass that way, but in my experience, Chronic Pain Warriors tend to be a pretty tough group of people. We have to be. We do not have a choice in living with these conditions, but we do have a choice in how we deal with this life we've been given, and most of us would rather focus on the positive. This leads to a habit of not showing how bad things really are for us.

So, in short, to the ED doc that assumed my face pain was a search for narcotics, it wasn't. And just because I have a PRN script for narcotics doesn't mean I abuse them or that it's my only method of pain management. By the time I go to the ED for pain, I've utilized heat, cold, meditation, creams and topicals, CBD caramels, other non-narcotic medications, possibly massage and acupuncture, and my narcotic prescription. The narcotic pain pill is the last on my "things to do at home to try to control pain" list. I'm coming to you because the pain is a symptom that something else is wrong.

A list of definitions in my medical chart