Living with RA (and other painful conditions) and pain management and my GP

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I saw my GP this morning, as a follow up to my pain management specialist yesterday.  My pain doctor doesn’t actually write prescriptions himself – he writes to the GP authorising the medication and dose and outlines the treatment plan, and the GP does the prescribing.  This means that he pockets a very large fee, and then I have to go to my GP soon after who pockets another fee, not to mention the time and energy it takes out of my day to attend not one, but two appointments to obtain my medication.

I can’t think of another medication that is this onerous to obtain.  I can think of many medications that have a much worse safety profile.  But opioids have a PR problem.  A huge PR problem.  Even the “experts” believe the propaganda.

Doctors don’t have time to delve into the evidence on opioids.  Partially that’s because there haven’t been many studies on long term opioid use. I think the longest was only 12 months.  But that fact – absence of evidence – has been converted most disingenuously from “there is no evidence on the risk vs benefits on long term opioid use”  to “there is NO evidence that opioids are safe or effective long term.”

Those two statements meant completely different things.  The first one is the truth, and in these situations doctors generally rely on patient experience.  Opioids are already very closely monitored in this country and that’s how things should have remained.  GPs are well placed to monitor and judge the effectiveness, or otherwise, of a trial of opioid medications.  For me, they were life changing, and having them taken away is also life changing. 

The second statement is what organisations like Pain Australia are constantly repeating.  It is a false statement.  It is twisting the truth to make it say what they want it to say. 

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An absence of evidence is NOT evidence of anything.  No intelligent person can draw reasonable conclusions from and ABSENCE of evidence. What this means is the studies need to be done.  High quality, placebo controlled, peer-reviewed, long term studies. 

And in the meantime, GPs need to be allowed to manage patients on opioids. If Pain Australia and the government cared about chronic pain patients, they would be demanded that the studies be done, not regurgitate the US bullshit party line.  What has happened in the US should not be allowed to happen here.

But there is no empathy for chronic pain.  Especially if that chronic pain is invisible.  And pain generally IS invisible.  It can’t be seen. It can only be measured by the person feeling it, and therefore the rest of the world – doctors, friends, family, co-workers – have to take the leap and believe the person experiencing the pain about how severe or otherwise that pain is.

I can’t count how many times I’ve listened to a conversation where a person was maligned and questioned (behind their back, of course) and people stated that they did not believe their pain could be that bad.  I should have intervened…I usually didn’t.  But those attitudes are rife, and they are everywhere. I’ve heard my family members do it – often as a way to tell me obliquely that they don’t believe that chronic pain can also be severe and invisible.  I’ve had friends have that conversation in front of me, I’m sure sometimes at least their goals were the same.  To let me know that they think that if people who suffer chronic pain would “just get out more” then their “psychological pain” wouldn’t be severe.

Worst of all, I’ve been in a conversation with a bunch of RAers, most of whom denied that opioids are necessary for RA pain.  Incredibly disappointing to be met with disbelief and open contempt from people within your own chronic illness community.

But I have gone off on a wild tangent, as I am so often wont to do once I get started on pain and opioids.

What happened at my appointment?

I told my GP that my pain management doctor had agreed to 20mg of Targin but wanted me to reduce my oxynorm, and hoped to taper me lower. I told her that I’d told him that we (my GP and I) had just performed that exercise, and 20mg of targin was the dose that controlled my pain most of the time and allowed me to sleep at night, exercise during the day and perform self-care and basic functions of life with minimal help. 

She asked what his response to that was, and I replied honestly that he didn’t have a long term plan, nor did he want to see me again.  Infact, in hindsight, I believe his complete disinterest in me as  patient is because he KNOWS I was only there for continued authorisation of my opioids prescriptions. 

He must have literally hundreds of patients in exactly the same situation as me.  Their GPs are no longer able to prescribe opiods without his seeing their patients and providing written approval.  He must be spending every evening signing a form letter, and I’m betting he just fills in different current doses and a taper schedule to appease the powers that be – namely the government at the behest of the “advocacy” of Pain Australia.

I’ve also never heard of an advocacy peak body that advocates AGAINST its most vulnerable constituents.  But hey, I’m at risk of going off on another tangent again.  Back to the appointment.

She called for authority on the script and while she was doing so I confessed that he also suggested amitriptyline, most likely because it was on my list of recent medications.  I took it for four weeks after my multi-level spinal fusion and it did calm down the nerve pain, which was absolutely the worst pain I’ve ever felt.  It did nothing for my arthritis pain or spinal pain.  And it did cause me to gain 6kg very quickly.

I told her again that I do not want to take amitriptyline, as it causes weight gain. And I am currently 20kgs overweight, medically obese and it is the single biggest problem in my life.

“worse than pain?”  she asked.

The answer to that is yes.  I was a far happier person when I was a normal bodyweight, even at times when my pain levels were higher.  There’s a complex set of reasons as to why that is true, and its for another blog post.  Bodyweight and body image is a very emotive issue and I’m trying to keep focussed here.

Then she dropped the bomb.  She told me (and it was for my benefit, not to be a bully) that if I refused the amitriptyline that my pain doc had recommended, that would be grounds for non-compliance and it could jeapordise my ongoing opioid scripts.  She said it was mandatory to trial alternative pain-relieving medications for everyone on opioids, and refusal to do so would risk been seen as a sign of opioid use disorder.

I told her that I’d tried all these other agents before, that I’d trialled everything from paracetamol to every class of NSAID to anti-depressants and gabapentinoids and anti-epileptics and the only thing that was effective was opioids. 

She said she understood that, but it was her job to trial these agents again, because my opioid dose has to be reduced.

“Why isn’t it up to me which medication works best for me?”

The unanswerable question.  “Government policy” was her answer. Which may be true, but its clear to me that she is choosing to voraciously implement that policy because of her experience in addiction medicine, and her personal view that opioids are not helpful medications. 

So I will try the amitriptyline.  It’s a tiny dose, 10mg, I was on 50mg a few months ago. But she admitted that we would have to raise that dose, that’s just a starting dose. 

I have no choice. I barely even have a say. 

I genuinely wish that every doctor, and politician, and most of all staffers at Pain Australia who advocate against opioids, would tomorrow wake up with severe pain all over their bodies.  And then have to start the process of trying to get a diagnosis and trying to get pain relief that most of us had to go through. And live through the months, and more often years, that those of us with high impact chronic pain have lived through, with constant pain, with little empathy, and even less support.  I’d like them to go through that experience and tell me that opioids have no therapeutic value and have no place in modern pain management. 

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5 COMMENTS

  1. Proving to your doctor that you are indeed sick – that is one of the most humiliating things with invisible illness. And not having too many (if any) blood markers to prove it. And then the specialists forwarding you from one another, not willing to take responsibility. That is so exhausting.

    I live virtually on the other side of the world, but I am glad I found this blog. Codeine helps me now, but even then I get weird looks in farmacies. Yet the other crap – mtx, prednisone, amytriptiline, gabapentin, and the the diagnosis of seronegative arthritis and depression – ticking so many boxes.

    • first we have to prove we’re sick…then we have to beg for help. That’s so true and its so sad…the most vulnerable people get the worst treatment. People don’t understand how humiliating it really is. And it shouldn’t be that way. Trust…belief. From people sworn to heal. Shouldn’t be that big an ask.

  2. Everything you have said is bang on. The ‘Opiod Crisis’ is completely regurgitated due to the phentanyl crisis in the USA. We need to do something about this! I am F*cKing sick as hell of politicians making nonsensical rules (10 tablets at a time for example), without consideration for the people with chronic health condition needing ongoing pain relief. That pain relief used to be available OVER THE COUNTER. I could have kept taking the Panadeine Extra (that’s how i got through my days at work, back when i was still struggling to keep my job). Now i have been using Panadeine Forte for my chronic pain (from various diseases, Rheumatoid is the most frequently painful one of them). I am so lucky that my rheumatologist gets me 6 months worth of medication (2 tablets a day on average, because some days i don’t need them at all, and on bad days i need to take 6 over the day or night). It’s f*&king awful being in severe chronic pain. When you describe shitty painful broken sleep after tossing and turning and pacing and rubbing pain creams all over your joints night after night and you are so exhausted, waking up with the pain whacking you all over from the moment you open your eyes… and then it hangs around again all day. You know what i’m talking about. Hands, wrists, elbows, shoulders, hips, knees, ankles, toes, neck, jaw. Nothing is spared. Plus i have endometriosis so the pan forte is useful for that too. The medication that I’ve been allowed to have has SAVED MY LIFE. Depression is an ongoing battle for a lot of people with chronic pain and to have that pain uncontrolled (when it could simply be prescribed without all this nonsense) is cruel. It is cruel to the disabled community who NEED pain medication. Simple analgesia that works. You are right, it is a dependency, for a legitimate reason, it’s not an addiction. If i’m lucky enough to have a day or two in a row that my pain isn’t severe, I push through and don’t even consider taking the Panadeine Forte. But that works out for me, because when i have a bad day, I have enough to get me through. When are they bringing in this 10 tablets at a time thing? I’m really peeved about that. Immune suppressed people don’t like going to public places (the chemist especially), the journey itself is exhausting and it’s just something I avoid as much as possible. Most of my life is spent in my bed. The second biggest chunk is managing my conditions (doctors appointments, daily exercise with my hound – within limits of what i can manage), and god forbid i need to run a different errand, drive to see a friend or have to go into a shopping centre. I avoid like the plague. I need pain management to be able to get through those tough times. The idea of attending the chemist weekly to pick up a pack of 10 panadeine forte tablets that would last me one week is absurd. I can’t make weekly trips to the pharmacy, my health does not allow for that. Why is this happening to us? What can we do to fix this ridiculous new legislation that is a cruel punishment for chronic pain patients? Pain Management Australia sound like complete idiots if they don’t see the value in analgesic medication that works (and has been working just fine) for the management of chronic pain conditions. It absolutely can be taken long term, when it is used responsibly (as we use it). The amount of other pills they try to shove down your throat that affect your liver, heart, brain chemistry etc, oh, they’re all perfectly fine. But Panadeine! Oh no! You must be a drug addict. Seriously WTF Australia. I will be looking into whether there is any petition against these new rules. They are STUPID. Our Health policy makers should be helping us and they are HURTING us, literally. You are right, they need to experience one single day, say a 24 hour period of what we go through and then try to tell us that meditation, exercise, or prednisone (a bloody terrible drug with horrific long term side effects) is better for our health. People will start turning to the black market for opiate medication if they can’t get the pain relief they need. And that just seems ridiculous when a couple of years ago you could buy it over the bloody counter at the chemist. Rant over sorry but this really gets me mad. These diseases are permanent, lifelong, degenerative diseases that cause a lot of pain. If a patient has a dosage that they use responsibly to manage their pain they should not have this stripped away from them and to be treated like a drug addict. It’s just another way to humiliate us and like you say, this leads to more specialist appts, more stress (and probably flare ups) for you, and of course more money for them. Just do the bloody research you need to do Australia, get your sh*t in order and start looking after your most vulnerable. Leave no one behind.

    • Im so sorry I didnt reply earlier…pain..you know the drill. But everything you said, EVERYTHING is correct…and its only gotten worse since then. Australia is copying all the mistakes the US made. I’m so sorry…but I’m still trying to do something about it. PainAustralia need to help us, and the media. We have to band together, unite our voices.

  3. Hello! I am a student trying to conduct a project on the relationship between Vitamin D and rheumatoid arthritis. Please help me in this initiative by taking a few minutes of your time to check the link below. I hope to be able to contribute useful information for the betterment and treatment of this painful condition. Your help will be extremely valuable. Thank you!

    https://docs.google.com/forms/d/e/1FAIpQLSefMjx8Rjb1lq3rOaI_GXkxZbH1MXUJIS9hWe5u3fBr9piAqA/viewform?usp=sf_link

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