Being Sick Is A Part-Time Job, Being In Chronic Pain Is A Suspicion.

(NOTE: Based on time elapsed since the posting of this entry, the BS-o-meter calculates this is 3.618% likely to be something that Ferrett now regrets.)

When you’re a kid, it takes you a while to recognize that someone you love’s an addict. The addiction’s a quiet partner to your life together: the six-pack they brought on that day trip you remember so fondly. The prescription pill bottles that stood by your Uncle’s favorite couch, right next to the boots you loved to polish and his stack of Archie comic books. Feeling proud at being included in the grownup conversations when he didn’t shoo you away as he complained bitterly about having to justify his need for pain pills to this new goddamned doctor at the hospital.
It took me a long time to realize that my Uncle Tommy was an addict.
If anyone had a right to be an addict, it was Uncle Tommy.
Which is a weird thing to say, but Tommy wasn’t getting any better. He had hemophilia, which is genetic and can’t be cured. His blood didn’t clot. And that meant any internal bruise spread and grew and ate away at his cartilage. At the age of thirty, he had the arthritis of a ninety year-old man. By the time he was forty, you could hear his bones rubbing against each other. He leaned heavily on his crutches.
Constant, unending pain.
Oh, and he had HIV too, which he got from the blood transfusions in 1982 before they even really knew what AIDS was, and the drugs they gave him meant he threw up all the time.
Suck end of the genetic lottery, really.
But Tommy bore it as well as any man could. He was my favorite uncle, my best friend in high school, the man who introduced me to science fiction and rock and roll and fine cuisine. He lived right next door, and though he had his grumpy days, I could usually wander over any time kids had made me feel like shit at school and he’d talk some sense into me.
And he was an addict. I mean, yeah, he had constant, unending pain – but he was always quick to reach for the bottle. He liked his booze. It was a coping mechanism, yes, but it was also an escape.
Still. What he was escaping from suuuuucked.
And today, I see that the CDC has released new guidelines for opioid usage. There are twelve suggestions, and eleven of them are aimed squarely at people like my Uncle Tommy: folks in chronic, unending pain.
One of them suggests only giving three to seven days’ worth of pain pills at a time.
I get what they’re trying to do: the number of opioid overdoses and deaths has been skyrocketing as of late, and something needs to be done to manage it. Doctors are also too quick to prescribe massive dosages for people who don’t really need it – “Your twisted your ankle, have two weeks of pseudo-heroin” – which drives up addiction rates more. I’m thoroughly for limiting senseless addictions and preventing overdoses.
Still. For my Uncle Tommy, what these new guidelines would mean is that he’d have to go to the doctor every three to seven days to justify his prescriptions – which, though he may have leaned heavily on them, he did also need. And the doctors would be more skeptical of his need, because goddammit we don’t need any fucking addicts clogging up our system.
What would most likely happen is that a man who already had enough trouble with doctors for his hemophilia and his HIV and his arthritis would have even more battles with doctors, and even more time off work, all in the name of preventing the terrible, terrible stigma of addiction.
And let’s be honest: my Uncle had me, and my Mom, and my Gramma to take care of him. We’d drive him on bad days. We’d go to pick up his pills. But I imagine if Tommy was by himself at the end, a man in a motorized scooter, trying to bop on down to the drugstore every three days to get more pills, being in unimaginable pain whenever he couldn’t manage to get off the couch and his supply ran dry, and…
These guidelines seem cruel. They seem to look at people in constant pain and say, “Yes, you’re suffering, but it’s very important that you don’t become addicted. We’d rather you hurt than accidentally give pain pills to a faker.”
Being sick is often a part-time job, and one that you can’t call out sick to. You’re constantly reeducating doctors, justifying decades-long successful treatments to your insurance, limping on down to the pharmacy to discover that your prescription’s been denied. Getting proper medical treatment can be an additional ten hours a week when you’re already fucking exhausted.
And for me, I say, Jesus, if these people are anything like Tommy, fuck it. Give them the goddamned pills. They are in actual pain thanks to circumstances they had no control over, and America’s endless hand-wringing over “What if we enable drugs?” just leaves poor people like Tommy high and dry.
For me, yes, Tommy was an addict. But he also had real need buried in there, and part of the reason he was an addict is that the pills were the only time he could escape the effects of his joints slowly eroding. And there are thousands of people also in unending pain out there, and we’re literally saying to them, “Hey, we know your lives are a bureaucratic hell right now as you manage the paperwork and prescription from five or six doctors’ visits a month right now, but….
“We need you to do more. Because there’s these people who don’t really need the pills, you see – they’re just having fun – and we think it’s more important to stop them than to help you.”
I get the dangers of overdose. I get the dangers of addicting people needlessly. I think these guidelines are good for preventing some of that.
I just wish there were also guidelines that acknowledged Tommy’s needs. Guidelines that said, “Okay, yeah, this guy’s got enough on his plate right now, what can we do to stave off his pain that doesn’t lend itself to overdosing?” Guidelines that said, “Look, if we have to choose between handing pain pills to fakers and not handing pain pills to people who desperately need it, let’s err on the side of getting pain relief to people who need it.”
And I don’t see that. Not yet.

11 Comments

  1. Carmel J.
    Mar 16, 2016

    Yeah, I was a little freaked when I got prescribed hydrocodone 3 times in 3 months (by 3 different doctors), and I only ever needed to take 2 or 3 of them for all three instances combined. And now can’t get rid of the rest until my town has their annual drug collection day again. I’m just glad I refused the third prescription. Ridiculous. I did just fine on 800 mg ibuprofen pills, thank you, and I still have plenty of them too. Never did my pharmacy say anything about it, either, though the same chain filled my prescriptions every time. No wonder people get addicted. 🙁

    • Kat
      Mar 16, 2016

      Georgia has now allowed practitioners to monitor all restricted meds filled in GA pharmacies. It’s been a godsend – I see people all the time who have either been passed from doc to doc or hunted out docs (in different groups, different hospitals) because they know there’s no communication.

  2. Kat
    Mar 16, 2016

    So I am what can best be described as “In hospital primary care” ie, a hospitalist for a primarily underserved population.
    I celebrated these guidelines because they are going to make my job profoundly easier.
    (PS. The actual guidelines are here: http://jama.jamanetwork.com/article.aspx?articleid=2503508. There is nothing in them about the 3-7 day window and I think that could only be attributed to an initial prescribing recommendation for a painful event)
    So we ARE seeing the fall out of the previous treatment mantras “Pain is the 5th vital sign” due to previous under-treatment of chronic pain. This, coupled with patient satisfaction driving hospital and office reimbursement has led to people using Oxycodone instead of Codeine, prescribing 30 pills when 10 is reasonable, first line therapy in ERs being IV Dilaudid (which was reserved for cancer victims, burn patients and people with literally their insides on the outside when I trained)
    There is way, way too much opiate pain medication hanging around after dental procedures, back sprains and minor surgeries. But the expectation from patients is “To be satisfied, I must have zero pain.” And yes, the average person doesn’t have pain, and doesn’t like it when they do. So they want it to go to zero, and stay there.
    They don’t want to hear that they don’t need a scan, but do have to take days off work, do stretching and therapy, and manage through it with round-the-clock tylenol and ibuprofen (which is the documented effective treatment for your average outpatient pain complaint) They are not Satisfied with that solution.
    (Anyone want to guess why on average, patient satisfaction results in higher mortality?)
    My resident training clinic was almost shut down by the DEA because we had unwittingly become a target for opiate diverters – different residents would fill in for their peers and patients who suddenly needed a refill on their pain meds would get them (in the days of paper scripts, it was easy to lose track)
    I know when a patient hurts. I know when they need sustained-release, highly abusable meds. I know when they need to be sent to pain management, who can inject joints and use TENS units and neurostimulators to do something besides numb their brain to the pain with meds. I don’t worry about them, I want them to be functional.
    These guidelines give doctors and opportunity to reset expectations to the hurt, but generally healthy population and get tough on those who would exploit our desire to relieve suffering in order to abuse meds and our healthcare system.

    • TheFerrett
      Mar 16, 2016

      And what you’re saying addresses one half of the problem but not the other. I agree that opiates are prescribed far too easily. And you wouldn’t actually hear me fighting you on that. Remember, my sick sister-in-law Kristi was brought in to Cleveland on methadone when we finally took care of her, and she would have died going cold turkey. The doctors out there fucked up by going straight to fentanyl.
      But there’s also thousands of people in chronic pain fighting doctors for what they need already. I see them in my comments, both here and on Fet where I cross-posted it and on Facebook, and they have problems with it already. What you’re doing is saying, very flatly and coldly, two frightening things:
      1) “I am a doctor, and I know exactly what a patient needs.” Which smacks of a terrifying infallibility complex.
      2) “I am a competent doctor, and therefore all doctors know exactly what a patient needs.” Which smacks of a terrifying faith in a system that all too often fails people, as you should know.
      And none of that addresses the core issue of whether this War on Drugs is actually justifiable, or whether it’s worth prioritizing people being in pain over “abusing” medications.
      Basically, you’re doing exactly what I accused these guidelines of doing: prioritizing the temporarily-inconvenienced over the chronically ill. That’s a problem.

      • Kat
        Mar 16, 2016

        There’s an addendum on the facebook comments, FYI.
        Your concerns above are valid. There are people with chronic pain, no doctor would argue against that. We do argue that a general medical physician, someone like me – does a poor job of managing that.
        But what I said above was not ““I am a doctor, and I know exactly what a patient needs.”
        I said I know when they hurt. I know when their pain exceeds what I can do for them.
        When you have someone who works with legos (average pain meds, prescribed for routine outpatient complaints) and they are confronted with building a skyscraper (tackling severe chronic pain), they’re not going to succeed.
        They don’t have the familiarity with the tools needed, and so bad tools get used in massive amounts.
        People need better access to true pain *management*, people who know how to use things like methadone and suboxone and nerve blocks. And I hope that the guidelines will highlight the need for more docs in the field.
        I try to get them to someone more skilled than me – it might not be the end stop, but I try to get them in the right direction.

        • TheFerrett
          Mar 16, 2016

          I try to get them to someone more skilled than me – it might not be the end stop, but I try to get them in the right direction.
          And that’s laudable. I know you’re a good doctor.
          But systematically, the emphasis on “We must not allow people to abuse drugs” leads to a situation where people who do genuinely need them have to re-justify themselves to new doctors all over again – a culture of repeated suspicion where doctors (who frequently don’t know a chronically ill patient’s record as well as the patient themselves does) are encouraged to hunt for drug-seeking behavior first and actual pain second. (Again, I saw that happen with Kristi. A lot.)
          I know what you’re saying is, “We should value pain management doctors.” And we should. We absolutely should. The more research and expertise and normalization we can pour into there, the better.
          But in the experience of the people who comment here, what often gets said is “Okay, this is what’s worked for you over the last several years, but we think you might be a drug-seeker, so we’re going to yank you out of what works and force you to try a bunch of things that may not necessarily work.” And that situation starts over and over again with each new doctor.
          You mentioned the Georgia sharing of opiate records. That’s great. But what I’d like to see would be a better sharing of doctor’s records so if one says, “Okay, this is what needs to be done,” the next doctor doesn’t try to reinvent something that keeps a patient functional because ZOMGDRUGS.
          Better pain management is great. Training patients to accept and understand pain as part of the process is great.
          But I think better understanding of chronically ill patients is also great, and that’s the key aspect I’m not seeing here. I feel the recommendations focus on one to the point of potential disruption for the other.

  3. Charlie aka Lazarus
    Mar 16, 2016

    Okay I for one am in constant pain 24/7/265. I have no cartilage in one knee joint and only 45% in the other knee joint. I have degenerative arthritis that has affected both knees and shoulders and now is starting in on my hands. On a good day my level of pain on a scale of 1-10 10 being screaming pain, is a 6. On a bad day it is a 14 and if you touch me when I am able to get up I will kill you.
    Now using Hydrocodone 325mg 4 times a day I can usually keep my pain down to a 3 on good days and on bad days down to a 7. It allows me to function as a human being albeit marginally. But without it I self medicate with high doses of Tylenol and hard liquor. That takes my pain down to a 6 on good days and a 10 on bad days.
    I am one of the few that when prescribed hydrocodone initially refused to take it. Went 4 years without taking it. Till I tore up my stomach with aspirin and other NSAIDs.
    Still on really good days I will suffer the pain rather than take meds. I have been on these meds for 10 years and occasionally I have as long as 2-3 weeks that is relatively minor in pain so that I do not have to take heavy meds. Do not long for them then and truthfully if I could take something over the counter that would alleviate the pain would be doing so.
    My brain chemistry is kind of strange I have been told by doctors. Most pain and psychological medications do not work on me. To date three pain meds do Morphine, Hydrocodone, and Oxycodone. The last leaves me too loopy to deal with life though.
    Do I wish I could take something or be operated on and fixed hell yea. But the docs told me ain’t no way to fix my arthritis and even if they did knee replacement or cartilage replacement surgery I would still suffer with my shoulders and hands just as much. So I am lucky I have a primary care doctor that monitors what pain meds I get religiously and piss tests me when she thinks she should(surprise fill the cup please).
    She has helped me find ways to cope with my extreme pain.. And folks I am talking about pain even under medication that 4 out 7 nights leaves me with 4 or less hours of fitful sleep. There is no one comfortable position to get into. During the day I move from chair to bed to chair to stool. If I stay in one position more than 2 hours I can suffer painfully when I try to move out of that position and be stiff for an hour afterwards.
    Before you tell someone suffering with Chronic pain that they should cut their meds down I suggest you spend a week on their sleep schedule waking up when they do trying to move with the minimum amount of impact on the affected joints, constantly applying hot and cold to help with pain management.
    Then right after your last night of suffering through sleep deprivation make the decision that they do not need that pain medication to survive. BTW this has taken me better than 45 minutes to type. I used to be a 38 word a minute typist.

  4. Nila Jones
    Mar 16, 2016

    In the parts of the US I am familiar with, pain management docs’ primary job is to get people in serious, chronic, pain OFF of all opiates.
    It doesn’t matter if no other therapies are effective enough to keep them out of bed and in the workforce. All that matters is that they don’t have any scary drugs.
    And no, they will not be receiving disability money, because their medical history shows they are able to work. The fact that the ability is contingent on having their pain controlled — and it no longer IS controlled — is irrelevant.
    Real life health care is not like the ideals we are taught in school.

  5. Scyllacat
    Mar 17, 2016

    This is the whole world. Punish everyone because someone might be getting away with something. D:

  6. Jessica
    Mar 17, 2016

    As a fat woman with multiple autoimmune disorders, the last thing I need is more doctors getting in my damn way. Research has shown that women are already chronically underprescribed pain medications, and the same goes double for fat people (Google it!). I have to fight so many idiots just to get good care, and I’m tired of it. I don’t want to be on opiates, but I prefer them to having a permanent nerve stimulator inserted into my body or having nerves burned out. And the old saw about how so-and-so was fine on 800mg of ibuprofen is a diversionary tactic. It equates someone’s temporary pain with my constant pain and that is utter bullshit. I don’t need more barriers to good, competent medical care, I need less. I’m already fighting social security so that I can get disability benefits, and that’s a 1-3 year struggle. I don’t need more doctors with their god-damned superiority complexes arguing with my about my disability. I need advocates. I need people who want to help my by listening. I’m tired of being demonized for my illnesses.

  7. Stacy Ashton
    Mar 18, 2016

    I had chronic sciatica for about a year of my otherwise healthy and pain free life. It was unrelenting nerve pain down one leg that I could bear when I was up and active, but that prevented any sort of resting position, like sitting or lying down to sleep.
    My wonderful regular doctor gave me three kinds of painkillers, including a quasi narcotic for the worst days. Combined, I could manage to sleep for about 4 hours at a time, and only had a few pain induced panic attacks a month.
    When I went for a refill from a substitute doctor, he suggested I use over the counter Ibuprofen to avoid addiction. Well, that was infuriating.
    I wasn’t going to get better if I couldn’t sleep. I’d also learned that nerve pain has no upper limit because when your body is processing lots of nerve pain it concludes you need more nerve sensors to carry all that information, so if you don’t control the pain, you just get more sensors to deliver more pain to your brain.
    Addiction, as Ferrett suggests, was the least of my problems. The meds took the bare edge off, so I could sleep and function. I was lucky. The nerves that were pinched managed to get untangled through physio and massage, even though it took over a year. Now I’m pain free, but I always remember the fear of a doctor taking away my best shot at getting better, to protect me from a potential addiction.

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