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

Incongruence (Or why I can be smiling and still reporting a pain scale that's off the charts.)

In mental health, we spend a lot of time evaluating a person's mood (what they're feeling, how they're feeling, if they're happy or depressed --or any variety in between) and their affect (how they appear). Most of the time, in the general population, people reflect how they feel.  So if they're happy, they're smiling; if they're sad, they're not necessarily smiling.  In the field, in these cases, we say that someone's mood is congruent to their affect.

But sometimes, people who are happy do not reflect this.  Or they may not appear to be much of anything, but they report differently.  In these cases, we indicate that this person's mood and affect is "incongruent".  (Yes, spellcheck, that really is a word.)

In my 20+ years of living with chronic pain and invisible illness, I learned that I don't want to live in the pain.  I'd rather be smiling and laughing.  Humor tends to be my default.  (And I'll be the first to make jokes about myself.)  Anyone who's ever been in one of my trainings or spent time with me as a supervisor knows that I have a dry sense of humor and I'm not afraid to use it!  (But only when appropriate of course.  :) )

But I also tend to use it with my medical team.  I tease my acupuncturist that he's my monthly torture appointment (those cups hurt!) and I joked with my rheumy the other day that my pain spike is related to the seasonal change that we have yet to have, but that my body says we should be having. Humor also tends to be my mask.

I've become so practiced at wearing my mask that the only people who see me not wearing it are those who are the closest to me.  The ones who know me really well can see through the cracks in my mask when I'm not doing well.  They can see past the humor.

But the doctor I've just met for the first time?  They only get to see my mask.  I might not make jokes with them, because they won't realize I'm joking, but they get my pleasant affect and demeanor.  And yes, I get double takes when I present as pleasant, smiling, and report an '8' on the traditional pain scale.  Or I receive looks of disbelief.

What a lot of people don't realize is that handling an 8 with humor--when possible--makes that pain feel better than handling an 8 with depression or anger.  It's still an 8, but with a little bit of humor and pleasantness, I can fake my body into believing that the pain is actually a 7, even if it's just for a few moments at a time.

This incongruence is why I have such a difficult time when medical professionals attempt to rate someone's pain only by how they're presenting, rather than asking for a self report.  What someone else's definition of what a particular pain level should be based on what an individual presents as--particularly if they have never experienced said pain level--isn't an accurate reporting tool.  The pain scale is really a self-reporting scale.  It's my experience of the feeling of pain in my body.  That experience--the sensations of pain, the location, the quality, the severity--will change from person to person.  My "8" might be someone else's "10" or it could even be someone else's "4".  But I've dealt with this so long that there are extremely few medical professionals who could come close to evaluating my pain level by studying my facial expressions and body language.

Now, as a caveat, are there people who will report high pain levels to get the "good stuff"? Absolutely.  But even those people should not be criminalized; addiction is a disease and should be treated as such. And by assuming any person who reports a high pain number with an incongruent presentation is simply drug seeking?  That's just doing a disservice to individuals experiencing chronic pain.

A link to the definitions of conditions I have in my medical chart.

"Med Seeking Behavior" and chronic pain (Or how can I prove to you that my pain is real when I have an Invisible Illness?)

We were watching the show "Night Shift" the other evening, and there was a scene where a patient comes in with obvious pain.  It appears she had kidney stones (to which I can attest is extremely painful), and the inexperienced medical professional on her case diagnosed kidney stones based on the tests, including blood in her urine.  Turns out the patient was a frequent flier to the ER and nicked her finger so she could put blood in her urine, and her chart documented a long history of med seeking behavior, specifically trying to get narcotic pain medications.

Now, med seeking behavior is a major problem for the heath care system today.  I won't deny that. And while the "typical" drug seekers shown on the media and in television shows usually show addicts in a fairly dramatic fashion, the truth is that health care sees med seeking behavior in a variety of ways, including individuals complaining of pain caused by invisible illnesses. And those individuals may truly experience the levels of pain that they're reporting--or they may not.  But it does make it harder for those of us who are truly in pain and need certain medications for treatment to receive the treatment we need.

So while society tells us "But you don't look sick" and many don't believe us, health care can share the same opinion.  And I can't blame health care for being cynical.  Prescription drug abuse is on the rise, and the FDA has changed their rules about prescribing Hydrocodone as a way to partially address this issue.  There are reports on the Office of Inspector General website of doctors being arrested for inappropriately prescribing Schedule II drugs and fraudulently billing for them.  Add in the news of increases of death due to accidental overdose of prescription pain medications, and it's understandable that medical professionals are cautious.

But there's very much a flip side to the story.  Those changes have led chronic pain warriors who rely on those medications to function to have great difficulty in getting the meds.  The cynicism of health care professionals to those with invisible illnesses who rely on those medications has led to people not getting what they need for treatment.  And this isn't the entire health care profession--there are many out there who acknowledge that there is a proper place for narcotic pain medication and work with patients on appropriate pain management.  

I've had experiences that run the gamut in the 20+ years of living with chronic pain.  The first time I was ever given a Narcotic pain med, I was about 20 years old at the time, and I was in the ER with pleurisy.  For those who aren't familiar with the condition, it felt like an elephant that was sitting on my chest and trying to crack my ribs with every breath, every attempt at talking, or every attempt at moving just a little.  It was extremely painful.  (Funny story: to say that I'm somewhat sensitive to pain medication is an understatement.  Shortly after the administration of the drug, I had the sudden urge to sing Disney tunes.  I must have said this aloud, because the nurse turned to my mom, who was with me, and said "Perhaps she only needs half of the pill.")

My primary care at the time was fairly wiling to work with the Fibromyalgia and Myofascial Pain Complex, but he also was quick to prescribe the pain pill I tolerated so well with pleurisy as a PRN ("to take as needed") for me to deal with pain.  This wasn't something I had requested, but it was something that worked quickly to deal with severe pain and would allow me to get back in track in maintaining my health.  

Over the years, it became a staple in my care.  For doctors looking at my history, they saw how frequently the PRN pain meds would expire before I even needed them (which shows how often I utilized them), and I've always been pretty vocal that I prefer other ways of dealing with my pain spikes if I can.  I can honestly say I've never had one of my (many) primary care physicians treat me as if I were med-seeking.

I can't say the same for some of the specialists I've seen.  And I really can't say the same for trips to the ER.  I once had a very nice and sympathetic ER nurse tell me to be careful sharing that I was diagnosed with Fibromyalgia with ER staff, because many of them will view me as doing nothing but med seeking.  

I will admit; I did go to the ER med seeking once.  (Well, actually, it was a total of 5 times in a week.)  I had kidney stones.  At that point, I would have stood on my head and whistled "Dixie" if they could take away my pain.  (And, in normal circumstances, I can't do either.) Generally, though, if I'm at the ER for pain, it's because I'm concerned there is something really wrong going on in my body.

I have some recommendations regarding this:

• Develop a strong rapport with your primary care doctor, and be open to other forms of treatment besides Narcotics.  Some medical groups have acknowledged the vast problem of chronic pain, and have started pain management practices that focus on a variety of ways to help alleviate pain.
• Educate yourself.  Work on finding what works for you to control pain that may not include the pain meds.  There are reasons I don't like Narcotic pain meds. They don't completely take away the pain and leave me feeling fatigued and sluggish for a few days after (on top of my already present fatigue), but the digestive issues?  Don't get me started on those.  And frankly, overuse of them can lead to dependency on the medication and potentially damage to organs.  That's why I use it as a last resort.  Is there a place for them?  Absolutely.  Do I still have my PRN prescription in the medicine cabinet?  Absolutely.  Do I still opt for time in the pool and acupuncture before I reach for them, when I can?  Absolutely.  
• If you have to seek out emergency care for pain, be open and honest.  Despite the recommendation from that ER nurse, I don't hide my diagnoses.  And yes, I have been treated poorly in the ER at times.  (And then I've filed complaints and requested that the staff receive additional training on chronic pain and invisible illnesses.)  But if you hide something, it'll appear you're hiding something, and staff are going to jump to the worst conclusions.  
• And if you seek out emergency care for pain, and they determine that your pain would be better responsive to an injected anti-inflammatory rather than a narcotic, don't argue with them (unless you know you have a contraindication for the anti-inflammatory).  Arguing with them isn't going to help your case and WILL make you look like you're med seeking.  After all, the purpose here is to help manage your pain, not to get you higher than a kite while doing so.  

Definitions of conditions listed in my medical chart