There is a huge disconnect in the chronic pain world, largely between those who believe opioids are an effective therapy when prescribed appropriately, albeit one that needs to be closely monitored, and those who believe there is no evidence that opioids work for chronic pain, and therefore there is no place for opioids in chronic, non-cancer pain management.
And the disconnect happens, in my opinion, because we’re working with a different definition for ‘chronic pain’. We don’t have the same point of reference. We’re not on the same page!
The simplest definition of ‘chronic pain’ is pain that is ongoing and persists beyond 12 weeks.
By this definition, chronic pain could be caused by anything…disease, trauma, ongoing injury.
But there is another definition, and this definition is the most widely used by Pain Medicine Specialists. But it is a far more narrow definition, and removes sources of chronic pain such as Rheumatoid Arthritis, or Ankylosing Spondylitis, or cancer, or any physical tissue damage for that matter.
The definition of chronic pain most often used by doctors and pain management specialists is that ‘chronic pain’ is where the pain persists long after the initial injury has healed, and the nervous system has become over-sensitized to pain. “Chronic Pain’ is a disease unto itself, father than a product of another painful disease.
This is also called ‘pain sensitization syndrome’ or ‘central sensitization’ and it describes where the nervous system has adapted, and the patient feels more pain for less stimulus. It’s another way of saying the patient develops a really low pain tolerance, thanks to their nervous system screwing up.
The big problem, of course, is that there is no reliable way of diagnosing ‘central sensitization’, and so doctors just assume everyone who has pain has ‘central sensitization’. This wouldn’t be such a problem, except the treatment for central sensitization and other chronic pain conditions is NOT the same.
Many doctors have ‘diagnosed’ me with ‘pain sensitization syndrome’ as it tends to be called here, and sat down to try and explain that my nervous system is feeling ‘real’ pain, but there is no physical cause for my pain.
Bullshit. I have inflammatory arthritis, and my joints are permanently inflamed. THAT is the cause of my pain. It is organic, ongoing tissue damage that is causing my pain. NOT nerve damage or over sensitization.
Opioids are effective and wholly appropriate for my kind of pain. They are effective and safe for me. One pain management doctor actually asked me how I know opioids are effective. Well, let me see. When I take my oxycodone I can get up and function for a few hours a day. I can take care of my kids and cook and clean a little. I can attend medical appointments. I can get groceries. I can pay bills. I can even do low impact exercise.
Without my oxycodone I lie on the couch in tears. I think that’s ‘evidence based’ enough for me.
But here’s another ‘fact’ being used to muddy the waters: There are no studies on the long term outcomes of taking opioids for chronic pain. The media and some medical organizations are using careful wording so that this is seen as evidence that opioids are not effective for chronic pain!
I consistently read ‘there is no evidence for the effectiveness of long term opioids for the treatment chronic pain’ which clearly implies that studies have been done and the results were not favorable to opioid use.
This is purposefully misleading.
Why not be honest and say ‘no long term studies have been done on the effectiveness of opioids in treating chronic pain’. Why? Because it doesn’t pack the same punch and would have people crying out for the studies to be done. So much more effective to use careful wording to bend the truth and support your anti opioid agenda.
What is the word of one, or even many, patients when the CDC has proclaimed from on high that there is an opioid crisis in the chronic pain community?
The other deceptive tactic being used is the party line that opioids cause people to become more sensitized to pain. But when you dig a little deeper, you find that there was ONE study done in rats that says opioids induce hyperglasia (heightened pain sensitivity).
All this hysteria about hyperglasia. From one study, done on RATS. It didn’t even make it to human subjects.
Seriously if that doesn’t reek of a hidden agenda, I don’t know what does. Don’t even get me started on how chronic pain statistics are thrown in together with heroin users and illegal prescriptions to twist the evidence to make it appear that people in chronic pain are getting no relief and dropping like flies from taking an opioid or two, or worse, becoming law breaking addicts swiftly going from pain patient to knocking over pharmacies to steal opioids and trading on the street for heroin. Please.
My pain is severe and constant. Opioids take the edge off that pain and allow me to function. They do not take my pain away completely and they do come with some unpleasant side effects. They do not make me high. The benefits outweigh the side effects for me, and each patient has to weigh that up for themselves. Assuming they are allowed to access opioids as pain therapy.
I’m not saying everyone should be given opioids as a first line therapy, it should be a treatment of last resort. For me, it was. I used many other therapies prior to being prescribed opioids – heat, ice, exercise, nutrition, massage, physiotherapy, surgery, maintaining a healthy weight, CBT, mindfulness, meditation. None of those work as well as opioids do, but all of them work together. But it is taking my opioids that allows me to practice other pain reducing modalities. It’s a holistic approach.
And in recent months, with a new treatment that is helping my inflammatory arthritis, I have actually reduced my daily dose of oxycodone. Almost halved my dose in fact. That is significant to say the least, and the media would have everyone believe that patients require ever increasing doses of opioids to get the same relief, and this too, is not always true. I have reduced my opioid dose because my pain levels have decreased. Maybe one day I won’t need opioids at all, that’s the hope. But until then I need to have access to oxycodone to have any kind of semblance of a life.
But I have digressed significantly. Back to the main problem – not everyone who has chronic pain has a pain sensitization syndrome. Neuroplasticity and the ability of the nervous system to evolve, and in some circumstances to misfire and continue to feel pain after the pain causing stimulus has healed is the current latest trend in pain medicine research and the darling of the pain management world.
And of course it’s a real thing. Some people DO suffer this kind of chronic pain. Whether opioids are helpful to those people, I do not know. I DO know that if I wanted to find out, I would ask the patients, not the media.
And then there’s the people like me, who suffer ongoing pain from a well-recognized as extremely painful disease process. Inflammatory arthritis. Just because you can’t see my inflammation, doesn’t mean it isn’t there, causing injury to my tissue. Just because you might not even be able to palpate swelling doesn’t mean it’s not there, sub-clinically destroying my joints.
Every time anyone decides to wave an ultrasound machine near me they can easily detect synovitis (inflammation of the synovium, the capsule that surrounds and lubricates the joints) and enthesitis (inflammation of the insertion point of the tendons) in pretty much any joint they want to examine. Pretty conclusive. The inflammation is there. And it hurts. And this is physical pain, and opioids are long proven to be effective on physical, organic pain caused by tissue damage. That’s why opioids are given routinely after surgery. They work.
But back to the point. One is neuropathic pain, caused by a misfiring nervous system, which I do not have. And the other is nociceptive pain, tissue damage caused by the inflammation of autoimmune arthritis. Which I DO have. That’s a pretty huge difference.
Until we start getting our definitions straight and understanding the difference between the two types of pain (neuropathic and nociceptive) this argument is going to be moot and circular. We are simply not discussing the same things. Each type of pain responds very differently to different treatments. Anti- depressants and anti-epileptic medications, used off label, have been shown to be very effective for nerve pain or neuropathic pain. They do nothing for nociceptive pain however.
It’s so blindly simple and obvious that I just want to throttle doctors and law-makers and media. Nothing is going to change until we get our definitions straight. No reasonable discussion can be had until we get our definitions straight.
‘Chronic pain’ should continue to be used to describe all forms of chronic pain, NOT just the subset with a pain sensitization syndrome.
‘Pain sensitization syndrome’ or ‘central sensitization’ is the name for when the painful stimulus has healed, yet the pain persists. How about doctors go back to using this definition, because not all chronic pain is caused by nervous system adaptations.
Studies and patients are saying that opioids work for their pain. Believe the patients. Opioids are not pleasant drugs, no one wants to be taking them. But for a great many people, they are the difference between being a functional human being and lying in bed in the fetal position. Opioids are the only opportunity to live a semi-functional life, in my case. So yes, I get a little annoyed when ignorance is reigning supreme, and hysteria and a collection of half facts are the only messages getting through.
Britt (Hurt Blogger)’s appearance at MedX yesterday, and the rest of the panel’s almost complete dismissal of her presence is the perfect example of how many health care professionals treat the patient. Invisible, unreliable and not part of the conversation.
For any meaningful conversation to happen, everyone has to understand the following 5 points. Probably a few more too, but this is a rant off the top of my head, because I’m pissed.
- Understand the difference between the different types of pain – Nerve pain/neuropathic pain and nociceptive pain where there is a physical cause for pain, as there is in inflammatory arthritis and cancer.
- Understand the difference and between, and the definitions of, addiction and dependence and tolerance.
- STOP throwing chronic pain patients in with heroin addicts and illegal drug users. These are completely different problems, and different populations and in no way related to each other.
- LISTEN to patients, and stop getting hysterical about one study done in rats to ‘prove’ that opioids don’t work and that they make pain worse. Stop using misleading statements and data.
- Look at the real chronic pain statistics. Several studies show that addiction occurs in chronic pain patients in less than 3% of chronic pain patients. Hardly a crisis in the chronic pain community.
I’m going to pull out references to back up what I’m saying here. But I’m too cranky right now, and I’ve just written this off the top of my head after watching the Stanford Medx panel. They will be forthcoming. The whole thing just makes me furious.
But hey, I’m just a chronic pain patient. What would I know.