I actually have had a patient come in and tell me "If I have to live with pain, I'll live with it, but what is causing it. I really need to understand it."
I gave that guy narcotics.
I had someone come in and tell me, I really don't like how they make me feel, so I don't take the pills.
I encouraged her to take them, at least when she was home or in the evening.
Instead many patients come in and seem to require no opinion from a highly trained diagnostician, seek no suggestion from someone with experience of the risks of drugs and really don't seem to want to know what the doctor thinks. What most people with genuine pain do not realize is how many chronic pain patients come in with the tell-tale clues of malingering. There is nothing more frustrating and infuriating than being manipulated by a junkie, who comes in wearing a suit more often that you would think.
Once my radar is up, I tend to shut down. No candy from me. I may even be blinded to patterns.
I haven't told this story anywhere, but this seems like a good place for my first time...I'll give the abbreviated version.
About 5 years ago, I started having bouts of severe runs and ungodly abdominal pain. No one could find anything wrong after two colonoscopies and numerous CT's. My primary care doc decided I just had IBS and gave me Bentyl, which did nothing for the runs or the pain. He refused to prescribe pain meds except for NSAIDs even though I was allergic to them. (He said he had a strict "no-narcotics" policy...he "hasn't ever prescribed a narcotic in his life, and he wasn't about to start with me"), I was in and out of the ER 17 times in one year at one point. The ER doctors called me a malingerer, drug-seeker, etc. One particular ER doctor did a rectal exam in a very rough, painful way for three minutes solid, and then told me to "remember this experience the next time I thought about sniffing around his ER for narcotics!" My PCP sent me to a shrink because "this pain stuff is all in you head and it's controlling your life. There's no pain medicine that can treat what's wrong with you."
In 5 years I had seen literally 15 specialists. One attack landed me in the ER after I started screaming in pain at a bus stop and a bystander evidently witnessed me threatening to kill a "ghost trying to eat my soul." This scared the crap out of me because my father had the same crap happen to him...it drove him to commit suicide. Needless to say that I was admitted.
I was given a PCA for two days, and they were about to just send me home when a young hospitalist looked at my chart and said to me, "I have never seen this disease before except in medical journals, but I think I may know what's wrong with you." He did a 24-hour urine save, and kept me in the hospital for another day, giving me whatever pain medicine it took to control my pain; he got it down to a tolerable level after adjusting the PCA thingie.
The next day, he came into my room, asked me about my pain and then asked if he could bring in some med students. I agreed, and wham! There must have been 15 people in there. It was then that he told me what he did with the urine. It sounds like he basically held my pee under a blacklight in a dark room and it lit up like a firefly's butt. He gave me a preliminary diagnosis of Acute Intermittent Porphyria. He then had the nurse draw a TON of blood, and the tests confirmed it. I stayed in the hospital for a week hooked up to the PCA and got Panhematin via IV and was put on a high carb diet. When I got better, I was discharged with a referral to a pain clinic (I'd been BEGGING my PCP for a pain referral for years, but he wouldn't hear of it since it was "all in my head.")
I recently sent the abusive ER doctor (and the hospital's patient advocate) copies of my test results along with a demand for an apology. Wanna place bets on whether or not the guy will nut up and apologize? The patient advocate sent a letter of apology...I'm thinking the doctor won't be so gracious.
Anyway, jsut thought I'd pass this along in hopes that the chronic pain patients here realize that there are good doctors out there, and here's hoping that some of the doctors think twice before writing patients in pain off as "head cases" so easily.
Acute Intermittent Porphyria affects between 3,000 and 15,000 people in the entire country. It is decidedly rare. I commend the no-narcotics policy for long-term undiagnosed pain but would urge practitioners to be cautious with patients who return and offer investigation. One method of dealing with patients we find difficult is to do limited progressive investigations and keep listening.
One day that pattern may jump up and slap you across the face as it appears to have done for this patient: intermittent pain, neuro-psychiatric symptoms and a family history of the same!
As for punitive examinations... well, large gauge NG tubes don't work at preventing suicidal gestures either. Maybe we need to listen a little more and punish a little less. The real drug-seekers do not allow investigation; they run away.
The cycle of provocation and reaction must stop somewhere.
Thanks so much for posting this person's story. Although acute porphryias (AIP, VP and HCP) are rare, there are people who represent those numbers. Too often, this story is all too familiar for those of us who have inherited this disorder. (I wish I would have inherited something I'd enjoy. lol)
I was told that I had IBS - "Your nervous nature fits the profile"
During a severe attack, the ER doc gave me a very rough gyn exam with no pain meds. He totally missed the fact that my sodium and potassium levels were off. It wasn't until the surgeon who removed my gallbladder came in for a consult, that I was given pain meds and admitted to the hospital.
But I had a great primary doctor who believed me when I told her that the pain was like nothing I had ever experienced, and that I knew something was wrong.
Pain is our body's way of telling us something, and my body was screaming at me.