One of the Lucky Ones

I was diagnosed with pancreas divisum, a condition that is not deadly but causes chronic, severe, unrelenting pain and some on-and-off nausea. In some ways, I am a lucky sufferer of chronic severe pain. My pain is controllable with 2 extended-release opiate pills, and 0-3 immediate release opiate pills for breakthrough pain. If medicated, I can go about my day without giving any thought besides making sure I take my scheduled pills, and have a few pills with me in case I need them. I am also fortunate that I am still being prescribed the same amount of pain meds that it takes to keep my pain undetectable to me while I go about my day.

In many parts of the U.S., law-abiding pain patients are facing reductions or elimination of medications being imposed on them. And then there are people, such as a relative and a friend I have in mind, who have never had proper treatment for pain. My relative had surgery for spinal stenosis that did not eliminate the pain, and is being prescribed Gabapentin by a pain clinic – which didn’t even inform this patient that pain control is an off-label use, and hasn’t helped the pain. I was amazed when my relative told me about this situation. I was given Gabapentin to try for pain more than 15 years ago, and it’s still off label? My experience of Gabapentin was sleepwalking behaviors and a feeling of weirdness that I never want to experience again. Also, there’s no reliable medical science to back up the claim that Gabapentin is effective for pain.

My friend was in the military when he suffered massive injuries from his head to his ankles from being run over by a vehicle. He gets no pain medication at all, and resorts to acetaminophen or alcohol. My friend is consistent when he describes what causes him to drink: pain in his head, shoulder, hips and legs, as well as extra-acute hearing he’s had since he was injured, which he finds distracting. He’s never described to me any of the supposed reasons someone becomes a so-called alcoholic. He doesn’t bemoan his fate. He doesn’t blame other people for his problems. He doesn’t ascribe his problems to long-ago abuse in childhood. He doesn’t describe any compulsion to drink. He doesn’t even seem to particularly enjoy alcohol for its own sake.

Attempts to get the V.A. to treat my friend’s pain, including cooperating with plans to enter him into an in-patient 12 step program, have not been met with any changes to his situation regarding his pain. When my friend showed up at the in-patient facility, the facility sent him to the emergency room because they suspected high blood sugar. While he was being assessed at the E.R., the rehab facility dropped off his suitcase because they weren’t going to admit him because of the diabetes. If “rehab” facilities are supposedly treating a medical problem, why would such a place not only be ill-equipped to get an accurate measure of his blood sugar, and why would they not be able to cope with a diabetic patient?

I’ve seen many people on message threads describing how they themselves, or their loved ones, with documented conditions that cause chronic severe pain, having their dosages cut, or their opiate medications eliminated. I live in fear of such a moment.

But, as I said above, I am one of the lucky ones. I have had steady pain control since about a year after my condition was first diagnosed. This doesn’t mean it’s been smooth sailing since 1997, when I had a surgery that had a 30% chance of eliminating pain in my condition. I only agreed to the surgery because I knew that if I didn’t it would leave open a possibility of the accusation of being a dreaded “drug seeking patient”, on the basis of there being a surgery I could try. I was that concerned that I actually undertook the risk of surgery just to be able to avoid that accusation.

For many years, my GP took care of prescribing my pain medications. My condition doesn’t require a whole lot of medical intervention, just to keep the pain under control, and treat the nausea that also goes along with my condition. About 3 years ago, my GP’s employer ordered him to reduce my prescription to about 1/3 of what I had been taking for many years with no problems. I contacted the clinic of the pain specialist my GP had sent me to see, years ago, to confirm that high dose opiates were an appropriate treatment for my condition. I then became a regular visitor to the pain clinic.

In addition to my pancreas condition, I have had other medical care – removal of a toxic nodule from my thyroid, removal of 5 breast lumps, laparoscopic surgeries for endometriosis and uterine fibroids, surgery on my deformed esophagus and stomach. But since it became clear that I would need pain control for the rest of my life, getting my pain control taken care of has accounted for more than 90% of all the medical appointments and medical paperwork for me and my husband combined. At my latest pain clinic appointment, my PA told me that instead of the every-two-months visits I’ve been having for the past year, I have to go back up to every four weeks (because of opiates politics).

Just the existence of pain as a separate medical specialty is ridiculous. Patients with chronic and/or severe pain don’t just have pain as an isolated condition. Most of these patients were diagnosed by specialists in the actual conditions that result in pain, specialists who know the patient, and know how and why their conditions cause pain. But over the past few years, such patients are being funneled into pain clinics, where there’s no treatment of the condition itself. Basically, it’s a quasi-legal protection for whatever rights a patient may have to get pain treatment.

Pain clinics and their patients are also vulnerable to the claim that such clinics are “pill mills” because the numbers of opiates, and the strength of the medications, are so high. But that’s what happens when the patients with pain from conditions treated by gastroenterologists, orthopedists, rheumatologists all get sent to a pain clinic.

Pain patients are subject to a lot of quasi-legal quasi-protections: pain contracts that the patient must follow to be eligible to get pain treatment, but which the medical facility may rescind without warning even if the patient has abided by the so-called contract. Patients are required to only get prescriptions from one doctor, fill them at one pharmacy, submit to urine tests (my clinic charges me $200 per test) to prove I consume my prescribed meds and don’t consume street drugs, not consume alcohol (even if the individual’s medications and condition won’t lead to adverse effects from the alcohol), when carrying medications outside of the house they must be in the original pharmacy bottle (not at all inconvenient, especially if you have more than one prescription). There is not only no mechanism for a patient to get recourse if unfairly cut off from medications, making too much effort to get pain control can get you labeled “drug seeking patient” – basically, radioactive to the career of any medical professional who would prescribe opiates.

The idea of pain as a medical specialty was not conceived as a way to improve medical outcomes for the people who are being sent to pain clinics (if such a clinic is even available in the area). Any patient that has a condition that is even theoretically eligible for treatment with opiates has already been seen by specialists in that condition, and almost certainly also has a GP. There is no medical or patient-serving reason to have created this specialty. The real world outcome of the existence of pain clinics is to reduce access to pain treatment.