“….You don’t have that kind of pain!”

As a person dealing with chronic pain, the debate over pain medication drives me nuts.

Being a person who focuses more on logic than emotion, I know that pain medication has it’s dangers, is overused, addicts abuse it, it poses a risk to the general population, and so on.

As someone who uses pain medication on occasion, I know that it’s devilishly hard to find a doctor willing to prescribe it, particularly in the post “war on drugs” era.

My problem is this: why do we punish people who through no fault of their own are living with chronic pain? If the powers that be (doctors, government, what have you) don’t like the pain meds available, great, dream us up better pain meds. Give us more options. I’m a parent, I have a small business, and I like being able to drive when the need arises. Narcotic pain meds make all of those things needlessly hard. I would trade my right arm for non-narcotic pain meds that don’t otherwise negatively impact my ability to function (excessive fatigue, interfering with other medications, interfering with sleep, interfering with appetite, causing headaches, or potential for harm) and are as effective as narcotic pain meds.

We don’t punish cancer patients by denying them treatment because some people smoke (or eat too much, or drink too much, or any other risky behavior that correlates to risk of developing cancer).

I can’t really blame the doctors, it’s a scary world out there as far as this issue goes. Some bite the bullet, and do it anyway, and try and make an uneasy pact with their subconscious about the potential fallout.

Others won’t write that damn prescription, no how, no way.

Of the most notable recent visits to Kaiser in my quest to find someone willing to learn about and treat AD, we were assured that Dr. T (names have been changed to protect…. nevermind) was great, very inquisitive, loved learning about new diseases, and so on. Almost as an aside, there was the tiny post-script that some patients didn’t think he had the best bedside manner.

Not an issue for me, I’d go to Voldemort himself if he’d just treat this damned disorder already. So I make an appointment.

A few days later I get a call from his nurse trying to un-make the appointment, using some incorrect information, and badly flawed logic. Having neatly dispensed with both of the above, I gather information, and wait for my appointment. A few days later, the doctor himself calls to try and un-make the appointment. Not succeeding there either, he agrees to see me, but says “I don’t have a lot of time to spend with you”.

Okay. Duly noted (cough).

I bring in the information about AD, we have a less than pleasant discussion where I spend most of my time trying not to come across as being too demanding, he is flatly insulting, and I’m trying to keep my husband (there for moral support, since I no longer go to Kaiser alone) from knocking his block off (figuratively folks!).

He says to make an appointment for a month out, he’ll do some research, and we’ll come up with a plan then.

Fast forward a month, and he starts the discussion with telling me he doesn’t in fact have time to research AD. He did read the information I brought in last time about AD, and spent the majority of the visit telling me why the researchers don’t know what they’re talking about, and that he doesn’t think I even have AD.

He did offer that surgery might be able to help. I explained in my experience surgery did more harm than good, and for the most part, my current regimen was adequate for dealing with symptoms, that my greater concern was long-term risk factors and how to mitigate them.

He asked what my current regimen was. He was supportive of diet and exercise, although completely dismissive of the suggestions made by Dr. Herbst as useless. He couldn’t see how chiropractic care could be of any use, in spite of my saying it reduced my pain dramatically. He asked what adjustments could possibly do to help with pain, and I tried some analogy about pulleys and vectors, and friction from lipomas causing irritability of muscle fibers, but he wasn’t impressed. I mentioned that I used to use Lidoderm patches, at which point he merely rolled his eyes violently. I explained that for some reason I have skin that seems to have mistaken itself for an oil slick, and as often as not, when I’m having a flare, they merely fall off within 15 minutes, no matter what I do to help them stick. They’re great when they stick, when they don’t, it’s a useless waste of money. He of course didn’t believe that either. He was similarly nonplussed with my use of  heating pads and hot tubs and therapy pools, in spite of my using them with great success (at my own cost). Oh well.

I mentioned that I have 5mg oxycodone for times when nothing else is working.

His voice rising from it’s already tension-filled pitch: “I think that’s a bad idea”.

I point out I’ve been using it for years, that as we’ve learned more about AD I’ve developed an excellent routine that has dramatically reduced my need for pain meds, and I get 30 at a time, and they typically last me 6-10 months, since I prefer to use them as a last resort. I asked given the minimal nature of my use of oxycodone, and the long-term success I’ve had with it, what would be the concern?

He couldn’t elaborate other than to stammer out twice more: “I think that’s a very, very bad idea”, and then finally, “you don’t have that kind of pain”.

Growing more hysterical, he points out he’s probably not going to be able to help me with AD, that he can’t really help me with the pain issue. I remind him my concern is more inflammation and long term risks, that my pain is pretty well under control, I still have pain meds left, and I’m not asking him for any oxycodone, I already have enough… and he breaks in with “BUT YOU WILL!!!”.

Well, possibly I would have. Somewhere down the road. In the 4 months since that appointment, being the stubborn cuss that I am, I think I’ve taken them twice, in spite of having some truly awful, white knuckle days. At that rate, I still have about 9 months supply left in my bottle. Even if I’d been a bit less prideful about the whole thing, it’s unlikely I would have needed a refill for 6 months. I know people with AD who take the amount of oxycodone I use per year several times per month. Given the difficulty of getting my hands on oxycodone in the first place, I don’t tend to be wasteful about using them, since I never know if more will be available in the future.

And I’m not done trying other methods. As I said, oxycodone sucks as far as pain relief goes. It works, but not without a serious price. But of all the things I’ve tried, it’s the safest, and has the least side effects. Usually when I use it, I do so round the clock for a day, and somehow it seems to decrease my perception of pain for weeks afterward. But I still hope for a day when I don’t need it at all.

As infuriating as his assumption that this was blatant drug-seeking was, I was more incensed by his insistence on what kind of pain I do or don’t have. He dismissed everything the current research indicates about AD, he refused to do any looking it up on his own, he didn’t ask me one bit about my pain other than what self-care I used to deal with it, and he admits he knows nothing about AD, and has no intention of learning about it.

So how exactly does he know what kind of pain I do or do not have? Is he psychic? A little birdie told him?

When I tried asking him what kind of pain he thought I had, so I could perhaps use the information to increase my pain-free days, he only replied: “not that kind”.

Perhaps it’s a trendy new medical term.