Chronic pain and opioids – my take

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oxycodone opioid pain medications

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).

One study.

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.

17 COMMENTS

  1. Amen amen amen amen!!!! Without my Norco 7.5, I would NOT still be working full time (with RA-ILD mind you). It makes life liveable again. I may not be able to do anything after I get home from work, but I’m not on the dang system! I’m still out there, earning my own income and paying my own health insurance….all because my doctor is empathetic and caring enough to prescribe what I need. Fine, I’ll do the drug test, so what. You want to count my pills every month, fine I have nothing to hide. Bottom line though….and I even told my GP this….”I’d rather be hooked, than hurt” period. because constant, never ending, non-stop, mind numbing pain, will drive you to drastic measures. And if you decide to start some sort of petition or something, count me in. I’m so damn tired of this war on pain medicine. Its like its some sort of clandestine conspiracy. but just like the meth heads killed good OTC cold medicine for everybody, the people chasing the buzz are killing it for those of us who really need the pain meds.

    • Exactly Melissa. Well said. And you, like so many others, are able to work and contribute to your own health and wellbeing, because of opioids. Where is this story in the mass media hysteria? It has been completely lost, focusing purely on addiction. Rather be hooked than hurt? Well said! And that’s exactly it. I’d rather have that choice, informed decision, knowing the risks. I applaud you for being able to continue to work, it can’t be easy. And I hope your GP continues to allow you the norco you need to be able to do so. I ‘ll post back here if I do start a petition. Thanks for your support.

  2. Thank you, thank you, thank you. I couldn’t agree more with your comments on this – I’ve heard the type of pain you have, which I share, called ‘chronic acute pain’. It happens all the time, hence chronic, but the actual pain is not from one sustained or otherwise healed injury, it’s from repeated injury, such as the repeated and constant damage of joint and insertion point inflammation.

    I’ve used pain meds for about 3-4 years. They still work. Without them, however, walking is almost impossible. Scratch that. It’s impossible. The pain is so unbearable that before I had access to pain meds, there were days where I actually blacked out entire days because of pain. I would wake up the next day and remember only a glimpse or two of the previous day.

    The entire opiod media storm drives me crazy. I don’t want anyone getting hurt or dying of an overdose or taking heroin. But I also need my rights to be protected, and the rights of other vulnerable people like me.

    • Well said Maggie. Just one day in our shoes…just one. And the CDC would be prescribing themselves opioids. Addiction and chronic pain should never have been lumped together this way. I hope you continue to be able to get the medication you need to manage your pain. Days like you describe, that are just a blur of pain and suffering, where you black out, that should never happen. it doesn’t need to happen. Not when there is a therapy that can prevent it. Take care of yourself. We’ll keep fighting for our rights, and for our pain to be recognised.

  3. I suffer from AS and my pain specialist understands completely what I’m going through and has no issues giving me Targin 40mg and I’m soo thankful for that if he didn’t I would be still sitting in a wheelchair crying my eyes out, even my physio and rhumetologist agree the pain meds work. I only ever take what I’m prescribed and my specialist had me taking 60mg I didn’t like taking that much so I dropped it back to 40 yes I still get pain but but no where near as bad if I wasn’t taking anything, my regular Dr is happy to give me 3 months supply because all my specialists consult each other and can see I’m not a junkie just a normal person with severe disabilities who needs help and there’s nothing wrong with that and as one Dr said unfortunately you are a 36yr old with the body of a 70yr old, I’m seeking quality of life and taking pain meds help give me that.

  4. People who have never experienced the pain I lived with when my Rhuematoid Arthritis Disease was uncontrolled should have no say in how my specialist doctor and I choose to treat it. I was unable to even lift a kettle without deep searing pain. I tried many treatments, including anti inflammatory suppositories for goodness sake. This disease is capable of slowly but surely taking away your dignity and livelihood, not to mention your hobbies and friends. I would take whatever it takes to allow me to grasp on to whatever vistages of my life I have left. Chronic pain from a disease like R.A, if not controlled by immuno suppressent therapy is unrelenting and Im sorry but if it means that I can continue to have some quality of life dam straight Im going to take opioids. The world is not going to stop spinning because I may need strong pain medication to lead a fulfilling life.

  5. Before I was prescribed opioids, I could not perform the simplist tasks due to my chronic pain from rheumatoid arthritis. Whilst I am not pain free, I can actual manage to “live life” a bit easier than before I was prescribed them. I agree, longterm use of opioids come with some issues, however, so does not being able to get out of bed and live life, not being able to perform simplist tasks and suffering chronic pain caused me to spiral into depression. Its pathetic that people who have absolutely no idea what chronic pain feels like and how it changes your life for the worst, get to make so many important decisions for us! If these people walked a day in our shoes, we wouldnt need to be having this discussion in the first place. Being diagnosed with a debilitating illness is not what anyone wants, so what are we to do? Suffer in silence???? Tried that for a while and it doesnt work. Opioids help us! Pure and simple.

  6. I have RA , lcv degenerative disc disease rheumatoid vasculitis and a myriad of autoimmune conditions. I have been taking opiate pain relief for quite a few years on a consistent dose closely managed by my specialist doctors. These medications have made quite a difference in my life as i am mostly housebound due to pain and disability from the RA and all its comorbid conditions. Without these medications which i was very reluctant to start taking i wouldnt be able to get out of bed. No they dont take the pain away completely but reduce it to the point i can tolerate it and it allows me to do things previously unable to do. I lead a quiet lifestyle and i do quite a bit of craft and artwork from home which the pain management regime has allowed me to re commence. The joy i get from being creative is enormous , it gives me a sense of purpose lost when i could barely move . Whilst cortisone does give relief the long term effects of steroid use has left me with type 2 diabetes a side effect of these oh so tempting steroid medications . Opiates was the next choice , whilst they dont reduce inflammation they reduce my pain levels to a manageable level and i feel i can achieve a few things allowing me to feel more able to contribute something to people that enjoy my work . This is important in maintaining my sense of self worth my relationships and most of all reducing my dependence on others. Im not an addict but merely someone taking these medications in order to maintain a quality of life without which i feel my mental health would be threatened . It’s not easy living with chronic disease or chronic pain and the small things that help reduce that load on a daily basis are necessary and make life liveable . Im using these medications for legitamate reasons and i work closely with my doctor to get the best benefits from the lowest doses. I dont abuse or overuse these medicines and i understand the impact they have when abuse does occur. In using these meds for the purpose intended how can i be regarded as an addict when they were prescribed by a specialist i have been seeing for many years and work closely with him every step of the way . These medications make huge differences in the lives of people that truly need them and take them responsibly . Its awful when in hospital and i am often treated with contempt and labelled by drs that do not know the full extent of my health conditions and i resent the fact i have been labelled on occasions by drs in public hospitals as an addict even though i have never sought prescription from anyone but my soecialist . I do believe the strict prescribing guidelines are needed but no one has the right to judge or label someone that has been unwell for over 20 years based on assumption as happens in many public hospital scenarios . I have authorisation to be prescribed these meds by one doctor and i use them strictly as indicated. Without these i wouldn’t be able to live at home nor would the relationships i have survive as i would simply be too much of a burden to care for by those i love dearly.

  7. Great read. I will be reposting this.
    Thankyou! I even find myself worrying whether I should be taking what I do in order to function. Each morning as I struggle to get moving – painful to toss towel over shower rail, turn on tap, squeeze shampoo bottle OUCH, let alone wash hair! Then my pain relief slowly kicks in. And off to work or pilates or just be a regular mum. A few hours later pain prevents normal activity again. Holding a tea cup, a pen, a steering wheel, or just walking is difficult. I struggle until next dose is due. And so it goes on.
    I could give up work, go on disability, be a burden etc, but opioid medication gives me a choice. And I choose to live.

  8. I struggle daily to be able to perform just basic activities of daily living. Things most people just do without thinking…..toileting, brushing teeth and hair, making a simple meal. I take Targin twice a day and most days I need to take Endone as well as the pain from RA is just too much to bear without them. These drugs help me to remain living independently as they take the edge off the constant pain. With out these drugs I would not be able to function enough to continue living alone.

  9. Thank you for writing this amazing and insightful piece. I am lucky enough that I don’t need the likes of targin and endone daily but I do need panadine forte daily. I would not be able to participate in even the most basics of family life without them. When I take endone or targin it’s because I am in debilitating pain.
    I ask that the powers that be to read this and think about what it’s like to live a life in constant pain. To not be able to work in a job you once loved, to feel you are failing your family and never be able to plan anything in advance. Please talk to people like us and open your hearts and minds.
    We are not addicts we are in need of medication to try and normalise our lives. Just like people with other diseases. Would you deny a diabetic of insulin? Admittedly our lives are still not normal but without them we would be completely debilitated.

  10. Brilliantly written post. I am very lucky in that I’m in the UK and my GP is more than happy to prescribe my opiates, likewise my rheumy is happy for me to be on them. We don’t take these meds for fun or for a high, my body is now so used to them they don’t even make me fuzzy as a rule any more, they just take the edge off and let me have some daily function. Without them I’d not have been able to enjoy the weeks holiday with my family that we just got home from, I still had to rely on my cane and some days my wheelchair, we don’t use those for fun either, but I couldn’t have gotten through each day without my pain meds.
    I’ve tweeted this article too as I think it’s so well written and needs to be heard.

  11. Hoorah for you ! I’ve just found your site and read this article, everything you say here is what I believe. I am on low doses of opioids now, I’ve reduced them over the last two years but this is now being spoken of “‘pain sensitization syndrome’ or ‘central sensitization’ ” and I don’t believe it! I know when I am in pain and what sort of pain it is, also when I am in pain changes depending on what I am doing. Some days I need a bit of a top up if I’ve done a lot, surely that wouldn’t be effective if I had pain sensitisation syndrome. I love your site though and will read all your blog posts.

    • Thankyou so much for the support, Anne. As I’m sure you know, its a constant battle with doctors, most of whom now believe opioids are NEVER appropriate, or that the question is just too hard, so they decide not to prescribe to avoid the trouble. It helps to know there are other people out there who feel as I do. Best to you xx

      • I forwarded your article to a friend and he is of the same opinion. He is very frustrated with being told that he needs to get a handle on his pain rather than resorting to drugs all the time. You only have to watch him walk to see how well that is going to work for him.

        • I suppose he’s been advised to meditate? Think happy thoughts and the pain will go away? I’m totally pro meditation and positivity, but they can’t take that kind of pain away. I hope he can find a more empathetic doctor to help him manage his pain x

          • Exactly that! We do too, he’s having a really bad time with it at the moment. Thank you for the support 🙂

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