"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