Creepy Green Light/We Will Bury You.

I am feeling juggernauty today. I am going to crush people under my hooves and hang their skins from my antlers as a warning to the rest. In the words of someone who was wrong, but had a way with words – “Нравится вам или нет, но история на нашей стороне. Мы вас похороним“.

So, I had my appointment with Dr Rpm yesterday via phone since I wasn’t walking well enough to get to the surgery.

I said that I’d taken the Imigran, twice, and that it did seem to work, sort of, or at least worked well enough to be better than having a full-blown migraine. I asked if it could be taken regularly, safely, and he said it could be. So he added it to me repeat script.

And then, “Oh,” he said “What else are you taking?”

I started listing “Diclofenac-”

“What’s that for?”

“For hypermobility syndrome.”

“Hmm. Go on -”

“Morphine sulphate-”

“The MST tablets? What’s that for?”

“For hypermobility, again”

A sharp intake of breath.

“How long have you been on them?”

“About a year, maybe a year and a half?”

A sad sigh “Oh, we’ll have to bring you in to get you weaned off them, then”

I feel my heart rate go up.

“What for?”

“Oh, they’re just not good to be on forever, opiates, we’ll see about weaning you off”

“But without them, I’ll be in pain.”

“You have to book an appointment so we can taped you down and get you off them.”

“But-”

“Book in. You have to come off, it’s not good for you. You’re in on the 20th anyway, we’ll start then.”

Appointment over. My hands shaking, I sleep for an hour to get my racing anxiety back under control.

Upon waking, I was myself again, fury and reason;

1) I’m using them as directed by my consultant rheumatologist, a plan that was also signed off by the national hypermobility clinic in London. If anyone is going to change my medication that radically, it’s going to be the specialists, so book me an appointment.

2) I’ve not had any adverse effects that I can’t deal with. If you think that damage is being done internally, get me a liver function test. If that shows any damage, then we can talk about “weaning me off”.

3) If you take me off morphine, you’ll have to find another painkiller which does the same job. Long term. Safely. Not a GABA-analogue or amytriptalin, since I get horrific side effects with the latter and the former aren’t licensed for painkiller use in the UK and also have no evidence base for use in the treatment of recurrent acute musculoskeletal pain.

4) Clinical guidelines for both EDS-HM and multiple herniated discs are to prescribe pain relief. First line is an NSAID, then the opiates until one is found that works. Morphine works really, really well. Morphine keeps me out of hospital.

5) If you take away my morphine, I will turn up in hospital every couple of days needing someone to reset my dislocations like you would on a fibrotypical person; Putting me under and booking a surgical team. This will be expensive and waste time which could be used treating people who really need treatment. I will also scream the hospital to a standstill in the process. I have an eight litre lung capacity from a decade of competitive swimming, and am a decently well-trained contralto. I can deliver you four octaves of regret at having me in your department.

6) I can also use all of that shouty energy to deliver an impassioned speech to NICE and get you struck off for letting your personal morality override clinical guidelines, you abstemious shitweasel.

7) You’re going to have to do better than “Boo hoo bad for yoo” – Show me studies, relevant ones, about patients in my position, about doses similar to what I’m taking, about comparative harm of a life on opiates and a (clue: much, much shorter) life in unimaginable pain.

8) You’re going to have to explain your reasoning not only to me, but also to rheumatology, the national hypermobility unit, the pain clinic that I still have an open referral to, the pain psychologist who said that taking my morphine away would be tantamount to killing me, the local hospital trust who will be deeply unimpressed with your attempt to increase unnecessary A+E admissions, Stanmore – who are relying on me being pain-free and in perfect physical condition so they can work their magic, my new physiotherapist who would rather work on someone motivated and cooperative than in pain and immobile, and to my friends and my partner to whom you’ve just given a full-time caring responsibility, since sans-morphine I will be unable to function well enough to feed, clothe or wash myself.

9) And this is me we’re talking about. You’re going to have to expect to see me every morning, at the surgery, at 8am, probably with a deckchair and a book so that I can wait all day, until you reinstate my appropriate medication.

If all of that sounds good to you, feel free. I’ll see you on the twentieth.

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11 thoughts on “Creepy Green Light/We Will Bury You.

  1. “Whether you like it or not, history is on our side. We will bury you “, Is that the translation Percy?

    Looking at the literature, long-term opioid use for chronic pain is a controversial area – so your GP’s response was not that surprising. Some useful reading for you might include:

    1. BNF. https://www.evidence.nhs.uk/formulary/bnf/current/4-central-nervous-system/47-analgesics/472-opioid-analgesics

    2. Local NHS guidance. This is a sample policy (which happens to come from Wales). http://www.wales.nhs.uk/sites3/documents/814/OpioidInNonMalignantPain-GwentGuidance%5BFinal%5DNov12.pdf

    3. British Pain Society policy document for patients. https://www.britishpainsociety.org/static/uploads/resources/files/book_opioid_patient.pdf

    What I’d expect from your GP is an informed, respectful, dialogue. That’s the very least you deserve!

    Cathy

    PS if you still have energy left, an ‘official’ systematic review has been conducted in the USA. I’d expect this to be good quality. The summary report is here: http://effectivehealthcare.ahrq.gov/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productID=1988

    • I’ve read the first three now – They all seem to broadly agree with my reasoning, which is good, since the only ones talking about discontinuation are talking about either when the pain stops, or if the drug stops working or if the dose has to keep being increased, and the only ones talking about it having limited efficiency are ones talking about traditional chronic pain (which I don’t as-such get – I just get injuries so often that I’m always healing something).

      And yep, that was the translation – Khruschev, talking about communism. Referenced because I feel like I’m on the right side of history, in that I think that people should be prescribed drugs based on their conditions, rather than on vague guesswork about their social caste.

      The last one, being longer, I’ll wait until after tea. The paper I found was this http://www.ncbi.nlm.nih.gov/pubmed/12855350 which seems to agree that there’s not too many side effects that you won’t spot immediately as the patient.

      Dialogue definitely needed, and if the GP won’t do that, I’ll have one with the rheumatologist instead. I think it really was just his unilateral puritanism, or can I even say paternalism, that got my goat up.

  2. Good for you. You are right – you are an individual and your care should be tailored to your needs/preferences/clinical condition(s).

    Cathy

    PS I referenced the last one, as being a systematic review, it carries more weight than an individual paper.

    You may know that NICE has a Scottish equivalent, called SIGN. Interestingly SIGN has produced a recent guideline on just the topic we are discussing. It would be well worth looking at that. Full guideline here: http://sign.ac.uk/guidelines/fulltext/136/contents.html and patient pathway here: http://www.ckp.scot.nhs.uk/Published/PathwayViewer.aspx?id=608.

  3. I have blogged about this shit before.
    http://rantingsciencezebra.blogspot.co.uk/2015/01/drugs-are-bad-mmmkay.html

    essentially GPs are shit at this, the evidence is not there for hyperalgesia, pain patients do not become addicts or rather do so far less frequently than doctors do (theres a thought) the long term effects tend to be PGH axis hormonal disruption, liver function, mental in that order and can generally be coped with and actually when used in a controlled way they are among the safest and best understood drugs on offer.

    The doctor is acting in an unethical way and should be struck off for the distress he causes you. He has no business practicing medicine

  4. Khrushchev and shit weasels. I haven’t known you long, but I’m sensing you might be pissed off.

    GPs are always morons about opiates. Try telling them it’s prescribed by other doctors, and not their concern. If they would like to consult with those doctors, present those phone numbers. Just be firm. If he’s not prescribing it, he can’t take it away.

    My old pain management doctor used to get incensed when I’d tell him some minor emergency clinic doc or GP almost called him to say he was prescribing me too many drugs or too many painkillers. Hopping mad.

    • Sadly, it was prescribed by a different GP – The UK system is usually that the GPs (For awkward reasons, in urban areas it’s pretty normal to see half a dozen GPs at the same practice, completely at random) fudge around together presribing whatever they see fit, then you get to see a consultant four times a year who reviews what you’re on and then sends a letter back to the GPs practice to tell them to prescribe you whatever other drugs are needed too. The GPs usually set the rates (ie, if you’re getting a dozen pills a month or a hundred) unless the consultant has been really specific.

      In retrospect, it’s really inefficient, especially if the GPs all think it’s someone else’s job, or don’t see eye-to-eye with the consultant. This is why we have so many avenues of complaint.

      And, yep, it’s a familiar feeling to have a consultant or a specialist suddenly go ballistic and send Many Angry Letters to wayward staffers. They tend to enjoy pulling rank like that. Mine pretty much sent a physio back to training for me last time I saw him.

      • That’s horrible. I’m so sorry. I’d offer to go with you and use my Voice of Doom and Icy Glare of Death to help, but I’m far away. Instead, I’ll keep offering the always welcome Unsolicited Advice.

        Ah, here’s another bit of that crap right now. Is it possible to be pre-emptive and call someone over the GP’s head, warn them what that idiot wants to do, get a letter from them stating what you need and what he/she must and must not do that you can wave like a war banner?

        Sorry. I’m one of those people determined to help. I can turn it off, but you’re going to have to tell me to.

      • Thank you – And absolutely true, I’ve been ringing around the Patient Liason service, and on Monday morning I’m going to ring my rheumatologist, to at least get the green light to hand over his phone number and give the GP the proverbial sore arse from above.

        Forty eight hours, and hopefully it’ll come to nothing.

      • I’ll cross my fingers and toes for you. Perhaps if you’re specific to the GP. Tell them that what they want won’t stand. Tell them all the steps you’ll take to make sure their stupid plan for your painkillers will be undone, so they might as well straighten up and fly right, right now, damnit!

        Oh! Doctors make me so mad when they get on these “too many painkiller” kicks that have nothing to do with us personally, but just a general thing because of a statistic or a study. Suddenly, our world gets turned upside down, and it’s not about what’s good for us, as a person. It’s about a quota or a report. Grrr.

  5. In the UK, GPs are usually the prescribing doctors. For financial reasons, consultants rarely (in my experience) issue actual prescriptions, because then it comes out of their budget. They rely on the GP to issue the scripts, and incur the costs of the drugs. So the GP holds the cards (unfortunately) in terms of legally obtaining medication.

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