10:29pm July 27, 2013

➸ Chronically Something: The Problem With Pain Pills: A Letter to Mr. Barry Meier and The New York Times

Recently, a piece on opioid medication and chronic pain was published on the New York Times Well blog. The article, entitled The Problem With Pain Pills, focuses on author Barry Meier’s ‘expertise’ re: problems associated with pain killers. Barry Meier is the author…

Also as far as side effects go, opiates are safer than most other pain medications. NSAIDS have horrible long term side effects. So do steroids. Anticonvulsants withdrawal is potentially deadly but nobody calls that kind of physical dependence an addiction.

I’m on anticonvulsants partially for pain control partially for seizure control. (Neuropathic pain doesn’t respond as well to opiates.)

If I can’t take them through my feeding tube, I have to go to the hospital to get intravenous anticonvulsants. Because even if you’re not epileptic, going off them rapidly can be life threatening. But nobody does scare campaigns about the use of anticonvulsants for pain relief. Even though they are overused for kinds of pain they DON’T EVEN TREAT, because people are so damn scared of opiates. Opiate withdrawal is unpleasant, but not usually life threatening unless you have other health problems.

I’ve done some research, and the demonizing of opiates causes lots of people to either go without pain control, go without adequate pain control, or get pain control that, unlike what opiates usually do, damages many of their internal organs (stomach, liver, kidneys) and puts their health in serious jeopardy.

I go to a pain clinic. I’ve refused to see their psychologist, because she is so uninformed that when an autistic adult patient took her articles on autism and responses, to pain, she told him “but autistic children don’t live to adulthood!” I have no use for that level of ignorance.

I do, however, get nerve blocks for my trigeminal neuralgia and neck problems. They work well. Before I got them, my trigeminal neuralgia pain reached a 10 on the pain scale (passing out).

Let me tell you something about that level of pain. It is common to become suicidal. I did. I was not depressed. I was in the most severe pain I’ve ever felt. It was like getting hit by lightning over and over. When pain is that bad you get scared of it. It is emotionally traumatic. My friend looked at me once and was shocked to see the same thousand yard stare she had seen on war veterans.

It is not depression. It is not a psychological problem. Psychiatry does not help, except for people who really do have additional problems. Appropriate pain management does help. For me, that meant changing me from Neurontin to Lyrica (a similar but more potent drug), adding Trileptal, and giving me frequent nerve blocks with steroids. After I began removing more and more pain, the suicidal thoughts vanished. So did the thousand yard stare.

Trigeminal neuralgia is not called the suicide disease for nothing. Before effective treatments existed, it was notorious for causing pain so bad that people killed themselves in large numbers. This was not because they had depression alongside the pain or needed to see a psychiatrist or were catastrophizing. It was because they needed pain control. I have a friend who is never, ever depressed. She became suicidal during an intestinal blockage. She couldn’t figure out where the thoughts were coming from. They stopped when the nurse put opiates in her IV.

Let me tell you something else. I’ve had severe chronic pain all my life. Autonomic and sensory neuropathy run in my family. Sensory neuropathy usually means neuropathic pain, one of the worst kinds of pain. It feels like burning, and sometimes ice cold at the exact same time. It takes any other kind of pain and amplifies it. It’s not good.

People who have lived with pain all our lives. Who have never not been in pain. Who will never realistically been without pain. We are the ones who can teach psychologists coping mechanisms. Not the other way around.

I’ve lived with pain forever. I know how to ignore pain so well that it’s endangered my life, because I never report pain. I can detach myself from pain so well that I don’t need to do any of that visualization bullshit. I don’t need to see myself on a beach or whatever. I just go away. When they give me nerve blocks – extremely painful injections right next to a very sensitive nerve – I practically never flinch or make noise. Even though the local anesthetic frequently fails on me. They comment on this often, apparently it’s quite unusual. Speaking of local anesthetic, it failed while they were cutting a hole into my stomach for a feeding tube. I groaned a lot but I didn’t thrash around.

I have a million psychological strategies to get through pain. But they do not make the pain go away. They just calm me down or make me dissociate heavily. (Before I was diagnosed with chronic pain, psychiatrists used to wonder why I was severely dissociative “for no reason”.)

Thing is. You can do all the psychological tricks you want. Pain still affects your body just the same. Being stoic about pain does not help your body in any way.

Pain puts a severe strain on the human body. It interferes with health at every possible level. It causes physical stress, not just psychological stress. Removing psychological stress does not remove the physical stress. Pain makes every possible health problem worse. It interferes with healing from surgery and other wounds.

And the only possible way to change that is to treat the pain. Not the person’s mind. Not their response to pain. The pain itself. Teaching a person to handle pain better is okay sometimes, destructive others, but it does not change the effects of pain on the body.

For most kinds of pain, opiates are the safest and most effective treatment. One reason they add Tylenol to opiates prescribed after surgery, is to make them UNSAFE for addicts to abuse in quantity. (It also has a synergistic effect sometimes, but that’s not the main reason.)

Stirring up fear about opiates and addiction and addicts is not the answer. It hurts actual addicts, who are quite rare among actual pain patients (look it up if you don’t believe me). It hurts pain patients who could benefit from opiates. It hurts doctors who prescribe opiates. It hurts everyone. Literally, in the case of people living with pain that could be easily and effectively treated if given the right medication.

Read up on the issue. Advocacy groups for pain patients will tell you exactly what I am telling you. That many pain patients are being misprescribed meds that don’t even treat the kind of pain they have. Or meds that treat it, but not well. Or meds that are far more dangerous than opiates. Or all three. And being given psychological treatments that don’t remove the bad effects pain has on their health.

And absolutely anything except giving them the meds most likely to work with the least severe side effects when used correctly.

Doctors meanwhile have been penalized and even prosecuted for prescribing opiates in a completely medically appropriate manner.

Comprehensive treatment is all well and good. But it’s HORRIBLE when used as a euphemism or an excuse to not treat pain in the most
effective manner possible. It’s like telling people exercise will cure their depression.

And by the way. Physical therapy? Can make pain worse in some cases. I went to PT for my neck problems and I ended up in a neck brace as a result of the PT. He did everything right, my body just apparently responds to massage and neck exercises by locking itself into severe muscle spasms. I went to PT for a hip injury, meanwhile. And again he did everything right. But my neuromuscular problems meant I couldn’t do all the exercises. PT is not for everyone in all circumstances.

Additionally, physical therapy can be triggering for many disabled people. Physical therapists frequently have a gym teacher, no pain no gain attitude. And they frequently tell disabled people that our limits are all in our minds. I knew it was time to quit PT when I began having nightmares about my physical therapist. He didn’t care that I had a movement disorder and probable myasthenia, he insisted that I was just “afraid” to balance in one foot. This is a common attitude among physical therapists.

So just as it is not appropriate to send every pain patient to a shrink, the same goes for physical therapy.

And whether or not a person is going to these, it’s totally inappropriate to do so as a substitute for appropriate pain medication. Whatever that medication happens to be, which will vary from person to person: steroids, NSAIDs, antidepressants, anticonvulsants, or opiates. But for many people, opiates will be the most effective and safest option. And it’s a crying shame that anyone is trying to take that away IN THE NAME OF SAFETY. Talk about backwards.