Column: Condemn the opioid epidemic, sure. But remember those of us in chronic pain who need help.

Column: Condemn the opioid epidemic, sure. But remember those of us in chronic pain who need help.

https://www.chicagotribune.com/columns/ct-living-in-chronic-pain-opioid-use-essay-20190713-qkh4jjsdm5gtxgc6452tseljce-story.html

Column: Condemn the opioid epidemic, sure. But remember those of us in chronic pain who need help.

Chicago Tribune reporter Katherine Rosenberg-Douglas is injected with anesthesia ahead of a spinal injection procedure on July 2, 2019, at PrairieShore Pain Center in Lincolnshire. Rosenberg-Douglas needs aggressive pain management after breaking her back while rollerblading years ago.

Maybe it would be easier if I looked like I was dying.

Easier for the pharmacists, doctors, impatient friends, well-meaning family and the suspicious people who eye me up and down when I use my handicapped parking placard. It wouldn’t be easier for me — I already feel like I’m dying.

I broke my back while Rollerblading when I was 21. After three surgeries beginning at age 30, I’ve recovered enough that I’ve gone on to what looks like a normal life. I’m a married mother of twin 4-year-olds, so I am relatively stressed, but fortunately, I’m otherwise relatively healthy.

I’m also on a fentanyl patch delivering slow and steady pain relief to keep me feeling like I can get out of bed, and morphine for breakthrough pain when life requires more of me than merely getting out of bed — and anyone who has ever had a 4-year-old knows each day is far more demanding than that. Just driving my kids to school or sitting for longer than 20 minutes at a time is a struggle.
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So is driving to the pharmacy, or to my doctor, both of which I must do every 30 days. To obtain a controlled substance in Illinois, one must visit a pain specialist because family physicians can’t prescribe this type of medicine long-term.
Chicago Tribune reporter Katherine Rosenberg-Douglas undergoes a spinal injection procedure on July 2, 2019, at PrairieShore Pain Center in Lincolnshire. Rosenberg-Douglas has faced increasingly onerous regulations in managing her pain amid the opioid epidemic.
Chicago Tribune reporter Katherine Rosenberg-Douglas undergoes a spinal injection procedure on July 2, 2019, at PrairieShore Pain Center in Lincolnshire. Rosenberg-Douglas has faced increasingly onerous regulations in managing her pain amid the opioid epidemic. (Erin Hooley / Chicago Tribune)

When we moved to Illinois in 2016, I had been on prescription opioids for almost a decade. I actually called up doctors and asked receptionists if they were taking new patients, and if the doctor prescribed opioids. After what I took to be stunned silence, I was either told they didn’t give that information on the phone or they couldn’t say because it was on a case-by-case basis.

I understand now that amid a deadly opioid crisis I must have sounded like a drug-seeker, though I just wanted to avoid wasting time or money. I have been dealing with this pain close to half my life, and we move often. I know how hard it can be finding a new doctor and transferring records to receive continuous care. In my first few weeks here I visited nine doctors, including neurosurgeons, orthopedic doctors and pain management specialists. They all agreed I needed strong pain medicine but said they weren’t the correct doctor to help me.
Relieving pain is a pain

The doctor I chose is about 30 miles from my home. He tells me it’s troublesome keeping up with his patient load as other area doctors leave the specialty. Thankfully, many pill mills have been shut down, but even good doctors have closed up shop as keeping up with ever-changing restrictions imposed by legislators has become increasingly arduous, my doctor told me.

Among the most asinine of guidelines pushed by various plans to end the opioid epidemic: A pain doctor’s records should show he or she is trying to reduce the number of medications and the dosage patients are on. If your formerly high cholesterol returned to a healthy level with a certain dosage, can you imagine your doctor cutting the dose in half on your next visit?
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It’s not clear to me what purpose the every-30-day visits serve, other than to pick up my written prescriptions — controlled substances can’t be called in. But just as these rules unnecessarily hurt those of us in real pain, they also won’t deter a junkie who wants a fix.
A monitor shows pain management specialist Dr. Richard Caner performing a spinal injection procedure on Chicago Tribune reporter Katherine Rosenberg-Douglas on July 2, 2019, at PrairieShore Pain Center in Lincolnshire. Rosenberg-Douglas has needed opioids to control severe pain for more than a decade.
A monitor shows pain management specialist Dr. Richard Caner performing a spinal injection procedure on Chicago Tribune reporter Katherine Rosenberg-Douglas on July 2, 2019, at PrairieShore Pain Center in Lincolnshire. Rosenberg-Douglas has needed opioids to control severe pain for more than a decade. (Erin Hooley / Chicago Tribune)

I also pee in a cup at the visit. I didn’t know the true purpose of the urinalysis until about a year ago. I thought it was to ensure I wasn’t taking anything other than what my doctor prescribed. But it’s actually to ensure I am taking my drugs, not selling my fentanyl and morphine.

There also are no refills allowed on controlled substances and no bulk prescription by mail. There are no early fill dates. Not even at 29 days instead of 30, not even if you will be out of town. And if you’ll be out of state? Better to rearrange that trip. An out-of-state pharmacy likely won’t fill your prescription.

Even if intending to pick up the medication after day 30, I can’t drop off the piece of paper in advance. I must turn it in and wait for it to be filled. If this sounds insignificant, remember, the people affected are in many cases dying, or living in so much pain that sitting an hour in a waiting room is excruciating.

Say the pharmacy has in stock only some of the 150 morphine pills I take each month, something that happens to me every few months, because pharmacies try to keep quantities low to discourage robbery by drug seekers. If I agree to accept 90 pills, for example, I can’t get the remaining 60 without another prescription.
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Chicago Tribune reporter Katherine Rosenberg-Douglas is helped to her ride from friend Courtney Holbrook with the help of medical assistant Mario Flores after undergoing a spinal injection procedure on July 2, 2019. Use of a fentanyl patch has helped to correct a pronounced limp.My personal record for pharmacies visited in a single day is 14.
Doctors don’t decide if you need it, pharmacists do

Last month, I dropped off a prescription before I started work at 7 a.m. on a Sunday, and the pharmacist said she’d need to speak to the doctor so I probably wouldn’t get it until Monday. I had my doctor paged at 6:30 a.m. Agonizing hours passed before I called and pressed for the reason. She told me there were “great distances involved,” between my address, the doctor’s office and where I was visiting my parents for the weekend — although they’re all about a 45-minute drive, pretty standard for Chicagoland.

“It’s suspicious,” she said.

The previous month a pharmacist told me she wasn’t comfortable with the combination of fentanyl and morphine because, “It’s a lot of pain medicine.”

She filled the fentanyl patches but would not fill the morphine. When possible, I’ve used the same pharmacy chain for much of the past 10 years so there would be an easily accessible log of my prescription history, so I implored her to look. She said she had.

“If anything were to happen to you, I would lose my license, not your doctor,” she told me. I mentioned that without the morphine I’d taken for so long, she was putting me in a more perilous situation than if she did. True, she admitted. “But I have the right to refuse to fill any prescription for any reason, and I choose not to fill this for you.”

Then she gave me directions to a rival pharmacy chain’s store.
Chicago Tribune reporter Katherine Rosenberg-Douglas is helped to her ride from friend Courtney Holbrook with the help of medical assistant Mario Flores after undergoing a spinal injection procedure on July 2, 2019. Use of a fentanyl patch has helped to correct a pronounced limp.
Chicago Tribune reporter Katherine Rosenberg-Douglas is helped to her ride from friend Courtney Holbrook with the help of medical assistant Mario Flores after undergoing a spinal injection procedure on July 2, 2019. Use of a fentanyl patch has helped to correct a pronounced limp. (Erin Hooley / Chicago Tribune)
Pain you can’t see

I have a number of diagnoses. Failed back syndrome, a medical term that means just what it says and suggests surgery didn’t help. A “bone stimulator” was implanted during one surgery to encourage growth between pieces of cadaver bone and my own vetebrae, but too much bone grew in around my sciatic nerve, giving me sciatica, or a burning sensation from my rear down my left leg to my toes, which often are numb and tingling (I take another medication for nerve pain). My left leg has so much atrophied muscle that it drags behind my right and I had a pronounced limp, but the fentanyl patch largely has eliminated that by providing more steady pain relief. I am disabled, but no longer outwardly appear so, which, along with my age, probably accounts for the daily dirty looks people shoot me when I park in handicapped spaces.

I understand why police, politicians and many doctors want to combat the opioid epidemic, but I’m tired of people throwing around that term and lumping me in with a group of drug abusers.

I support the spirit behind their efforts, but can’t support any more regulation on controlled substances. We have now overcorrected, and anyone who requires pain medicine is looked upon as a criminal.

It was once hard to imagine being in more pain than I am, but the current regulations added a new layer of suffering. Please remember opioids exist for a reason, and don’t let it get any more difficult for those already in agony.

kdouglas@chicagotribune.com

 

2 Responses

  1. This is a very good description of what a lot of us go through constantly. Those procedures, injections and nerve ablations are no picnic either. In order to see a PM Physician I drive about 180 miles round trip, ad have met others that travel even further. Thanks to the regulations, I have to make that trip every 60 days. I am not allowed to drive after a procedure so I have to have a friend take a day off of work to go with me.

    When my state cracked down on opiates my former PM physician dropped me, without even an explanation. I had been seeing him for 7 years. He got ruder and more obtuse over the last year. He even threw my Imaging report back at me, apparently patients with failed surgery and spine implants are better off if the doctor Gas Lights them.

    He was covering for the surgical center after the local hospital bought the practice he was working for, basically monopolizing the medical providers in my area. The surgeon there allowed the medical device rep to observe my spinal implant surgery. The hospital covered for this behavior, and refused to do any follow up when the implant failed, leaving me in excruciating pain. The FDA hid the adverse events from these devices, and even the deaths, to protect the industry.

    The last visit which took 2 years to get, left me with a referral to a chiropractor. The surgeon lied and claimed my imaging was lost. It is possible a chiropractor made my initial spinal injury worse, he certainly never diagnosed my issue. With chiropractors as long as the patient can pay, they will continue to lie about their condition. No other surgeon in my state will see me, they don’t like cleaning up another surgeons mess. I consider myself lucky, I have met people in the same situation with rod in their spines that need to be removed. One of them drank herself to death, before she could schedule the surgery.

    What we have here is a Racket, a cover up of the failed surgeries, gas Lighting patients who wait years for referrals, and a lot of ruined lives. They turned the opioid problem into a profit generating way to cover for all kind of criminal malfeasance. My state claimed they are at the forefront of the so called opioid epidemic. They had an ongoing generational problem with heroin in the 1990’s. They are still in denial back in the 1990’s the only “treatment” was 12 step, not much has changed.

    They started a Prescription monitoring database here and the death rate went up. Of course no one bothered to look at that data, instead they chose to target the few pain physician left in the state, while the rate of new heroin addictions and fentanyl deaths rise. At least there are plenty of people making money. The hospital that did the implant surgery is peddling unnecessary and dangerous steroid injections, as they blame their failed surgeries on patients, and not the sales reps they took money from. The healthcare system is much too corrupt to remedy their mistakes so a lot of sick people here turn to suicide.

    We are living the Dystopia, where criminal make huge salaries cooking up new schemes to avoid unaccountably, profit form our despair, and lie to the public. 22 years out and people are still dying, that is what happens in a Profit driven system.

  2. I can identify with Katherine so well as an almost 25 year spine pain management patient. I have the same spine, leg issues. Just because I can walk, smile, and speak to people I meet does not mean that I am not in very serious, constant pain. I was forced to apply for disability very shortly after my pain management specialist was forced to “taper” my medication that has not changed in dosage for almost 10 years by.. 80 percent. Exactly what, did dot/gov “officials ” and the other profiting “experts” behind the guideline expect people/patients to do with forced “tapering”? Life was difficult before the “guideline” was published. Now CDC states that it, the “guideline” has been misinterpreted? B.S. It was very cleverly orchestrated empowering DEA….obviously. If in fact the “guideline” has been inappropriately enforced on millions of people/patients, then why has it not been amended, clarified, I mean REALLY clarified and our physicians relieved of more time consuming elaborate mechanisms to continue their practices such as “e-scribe”, more documentation of the patients use of medication ( which counts for NOTHING) requiring them to work longer hours, hire more technicians and even leave the pain management sector? Gotta give it to dot/gov,, very well orchestrated plan to save money! The fallout is causing much misery! Even death by self but, we are only incidental casualties. Of course, it is only “my opinion”.

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