#RABlog Week 2016: Post No.4

Daily prompt:

The pain of pain meds: Pain medication prescriptions are hard to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members?

I need to start this post with a disclaimer. While I am aware of new legislation and the growing issues for chronic pain patients in North America in obtaining pain meds, opioids in particular, as yet there has not been legislation passed like that in Australia. However, the climate is definitely changing here and those of us who are keeping watch are concerned that the same misinformation and lack of being heard is going to influence the powers that be to move on creating similar legislation. 

As things stand in Australia, there is increasing pressure on rheumatologists and GPs to refer chronic pain patients to pain specialists - the newest medical speciality on the block. I have to say, given my experience of pain specialists to date, they're not my favourite people. Those I've encountered appear to have a number of preset ideas; one, that chronic pain can't be successfully treated with opioid drugs, and two, that all chronic pain is equal. Rather than try and unpack both of those myself, I'll refer you to an excellent post written recently by Arthritic Chick, as she nails it completely. So, go read that HERE, then come back for the rest of my post... 

OK, so, my pain story.  

For many many years, I managed on NSAIDs and the prescription painkiller Capadex, one of two drugs in Australia and New Zealand that were a combination of Dextropropoxyphene (an opioid) and low dose Paracetamol. They were withdrawn in 2010 due to concerns about inappropriate use, particularly in combination with alcohol. When everything started to ramp up with my RA, it was still possible to obtain Capadex, but it was no longer sufficient to manage my increasing pain, and when I saw my GP, she prescribed slow release Tramadol instead, while writing me a referral to a rheumatologist. 

That worked for a while, but as the disease spun out of control, I was in more and more pain, on top of my decreasing mobility. By the time I was admitted, I was barely walking, and pretty desperate. Due to chronic bed shortages in Sydney at the time, my rheumatologist said to go to Emergency as I would eventually get admitted when a medical bed became available - the only way at the time, as we'd waited nearly three weeks for a bed at that stage. That wait in Emergency will be etched on my brain forever, I think. It was horrendous. With the triage process, I rated fairly low on the priority list. It took hours before I was finally ushered into a cubical, where, thankfully, a dose of Oxycodone was administered, and for the first time in many weeks, I experienced some relief. They moved me into an interim space for overnight stays in Emergency and Dragon Dad headed home. I remember waking sometime during the night, again in awful pain, and again, they brought me Oxycodone, which allowed me to go back to sleep, until very early in the morning, when I was moved to a ward. 

My doctor had admitted me for a high dose Prednisone burst via infusion, to reboot my system and knock the runaway inflammation on the head, but decided to take full advantage of me being an in-patient to re-run ALL the basic tests. They started the next day, and with Murphy's Law operating on hyperdrive, every single bloody test showed up something that resulted in ANOTHER test being ordered to investigate that... All in all, I was in hospital for two weeks, during which time Dragon Dad had to head overseas for a business trip that couldn't be moved. A good friend came to Sydney to be there during the day, as No.1 son was working full time and could only get in at the end of the day. 

I should have expected the pain doctor who stuck his head around my curtain a couple of days into my stay, but he was a surprise. Dragon Dad happened to be there which, in the end, was a good thing. 

First, he had a good look at my chart. Then he asked if he could take a history. Fair enough. Only, it became clear very early on in the process that he was doubting both what was in my charts and the history I was giving him. "Why do you think it's RA?" he wanted to know... Uh...well, because it was diagnosed a LONG time ago, on solid evidence of the disease, and there's been no reason to question that... "But you don't have a positive Rheumatoid Factor..." No, I don't, and never have had, along with the rest of the 20% of RA patients who don't...it's a real thing, and still legitimate RA. He had a real problem with that. "I'd like to check you for Fibromyalgia. Is that all right with you?" Well, yes, it was OK. I don't have Fibro, and he was welcome to find that out for himself, since he clearly wasn't going to take it from me... So he did all the pressure tests and I failed to register any of them - because, I don't have Fibro. 

Then he changed tack. "You've been having a LOT of morphine..." Hmmm, well, here's the thing. I was admitted for out of control disease with severe pain. My then dose of Tramadol wasn't containing it, and if I asked for pain relief, what did they bring me? Oh yes, OXYCODONE... Because that's what they give you in hospital when you ask for pain relief for severe pain. They keep track of it, and within a certain time limit, they don't hand it out. They also check with the admitting doctor regularly to see that he's still OKing it. Which mine was. I wasn't asking for Oxycodone specifically. I was asking for pain relief, and that's what they brought me, along with paracetamol, which enhances the analgesic effect. 

He asked a few more questions around that, the same question reworded a few ways. And then asked the one that was dangerously close to an accusation of drug seeking, at which point the air suddenly went solid... Dragon Dad was furious. Actually, by then he was beyond furious. He'd sat through this interrogation biting his tongue, but at that point, he'd had enough, and then some. As Dragon Dad sat up straighter in his chair, I saw the doctor look at him, and clearly not liking what he saw, he excused himself very quickly and fled.  

Then, Dragon Dad let fly. It's a good thing the doctor had gone, because he was so angry. He had wanted to deck the guy - thankfully he hadn't gone that far. It was the first time he'd seen what was beginning to happen to all too many chronic pain patients.

He wasn't there the next time the pain doctor came back, again, most concerned about the Oxycodone. Asking me if I'd be prepared to try something different. Contrary to the opinion he probably eventually formed of me, I'm not non-compliant. I will ask questions, and I will challenge doctors as to why they're advocating a particular course of action, but I'm quite prepared to try it out once I've ascertained that it's reasonable. So I did all that, and took the first dose of Lyrica he gave me. A few hours later, I was aware of discomfort in my arms, and looking down I found that the insides of my forearms were bright red, hot, and numb... I called a nurse, who looked at it and was most perturbed. She paged the pain doctor - many times through the night and into the next morning, and kept checking me regularly documenting changes. The redness faded quite a bit by the time the pain doctor finally put in an appearance, but the numbness was still acute and mindful of my experience with Enbrel, I was very wary of taking another dose and said so. His response? "I've not read about a reaction like this. It's probably not the Lyrica." Except that the dose of Lyrica was the only thing that had been different in that 24 hours... So I refused another dose. 

"Well then," clearly irritated, "Lets try Gabapentin then. I'll start you on 300mg tonight, and then we can work up to the full dose." With not a little trepidation, I took the pill. Nothing happened immediately, and I eventually drifted off to sleep, only to wake up the next morning weeping copiously - and I couldn't stop. I'm not a crier, and nor do I suffer from depression, but that morning, the world was a black and nasty place, believe me. I could not stop crying, and one nurse who'd been on mornings for the last few days went off to find a Mimms to look up side effects from Gabapentin. There it was, in black and white - can cause depression. The pain doc wasn't having it, though, and insisted on a second dose. The next morning was much worse, and I knew it was the damned drug. When he came in later that morning, I was SO over it. And angry as well, by then. Then, all he could say, AGAIN, was, "This is very odd. I've never read about reactions like this to Gabapentin..." When challenged at that point, even he had to concede that in all the times he'd seen me in the hospital, I'd never been anywhere even close to a state like that. I told him I was done, and I'd really appreciate it if he took himself away and didn't come back. 

When my rheumatologist did his rounds a little bit later I asked him to park and took him through the whole of the previous three days. My arms were still numb at that point - and it would be a bit over a week before I had full sensation back. I asked him if it was possible for him to manage my pain meds, as he had up to that point, and he said, of course. And there we were. And that's how it's been - between my GP and rheumatologist ever since. 

As an interesting end note, I did see the pain doctor again, in the company of the senior pain doctor in the hospital on the day I was discharged, when one by one, all the doctors I'd seen during the two weeks came to take a last look at my chart and sign off on it. The pain doc who'd given me so much grief couldn't even look me in the eye - but his boss seemed nice. But it'll be a long time before I'll happily go see another pain specialist. 

At this stage, I'm still using Tramadol slow release for my pain, and on the whole, it's doing the job. On the good days, I can drop down to 50mg for the morning dose, and 100mg at night. Towards the end of an infusion cycle when the pain is starting to ramp up again, I might need to go up to 150mg for both doses. That's something both my GP and rheumatologist were aware of and had sanctioned. And we've added a low dose of Oxycodone for break through pain when I flare severely. 

Meeting a new GP last week when I needed a script for the 100mg tablets was interesting. He rang Medicare for a single authority script (60 tablets, based on my average daily plan of 100mg twice a day) but wouldn't ask for a script with repeats, as I have been getting from my Sydney GP. He said as he doesn't know me, he won't prescribe anything else until he has my records, and as it was, he was on the borderline with the Tramadol script, but I was clearly knowledgeable about RA and my treatment over the years, so he'd do that much. I'm still deciding if he's the GP I want to see, or whether to head over a few suburbs to the one my Sydney GP recommended for me. I might do that and test the waters there before I decide. 

It does show that there is a lot of caution around pain meds in Australia now, particularly the narcotics. All the knowledge of what works for me will be useless if we end up with laws like the ones that are being created in the US, and the fearmongering about opioids and addiction that is on the rise here won't help that. And from what I've experienced, and stories from friends, the pain doctors aren't on our side.