Warning signs

Reading the great list of papers linked by CSL yesterday, I found that there was only one consequence of long-term opiate use which was both true to me and insoluble.

“Feeling reliant on the medical profession to relieve pain, and as if the only way to relieve pain is pharmacological.”

So, I thought I’d approach that.

The paper suggests lifestyle changes, exercise, activity pacing and (bizarrely) the use of a TENS machine. It’ of course, doesn’t account for the fact that most long-term pain patients are actually very good at pacing, exercising when they can, using any non-medical remedies that they can, and generally trying anything – ANYTHING – that seems plausible to get them out of pain.

So, next time you have a sprained ankle, I want you to not take any pain relief for it – Not even an ibuprofen. Instead, I want you to go for a thirty mile walk. Maybe consider eating a salad, since “Lifestyle changes” is always code for “Lose weight”. Did it work? Would it have been easier to go for the thirty mile walk with a painkiller as well, so that you could concentrate on walking, rather than protecting the sore ankle in a way that would probably do long-term damage? Thought so.

Part of the problem is the definition of chronic pain. Some sources say “Any pain which has persisted for three months or more and has a debilitating effect”, and some say “Any pain which has persisted beyond the physical healing time of the tissue”. If you’re being treated by a doctor who uses the former definition, you will get all the morphine that you need, a tonne of physio, and generally buckets of sympathy. If you’re being treated by a doctor that uses the latter definition, they’ll assume that the pain is neuropathic, try to give you pregabalin, and assume that you’re insane and easily frightened.

My actual on-paper diagnosis is “Chronic pain on a background of joint hypermobility”. Some doctors read this as “Ehlers Danlos Syndrome, beware, fragile”. Other doctors read it as “Is insane and obsessed with being in pain, has slightly unusual joints which back up the delusion”.

Possibly fortunately, possibly unfortunately, my medical record is also full of instances of me presenting to doctors with dislocated hips, wrists, clavicles, shoulders and small joints, and MRIs showing my unstable spine with its herniated discs and trapped nerves. It shouldn’t be difficult to make it obvious that I have constant pain in most of my joints because I have constant injuries in most of my joints – I’ve not had a dislocated shoulder that’s hurt for three years, I’ve had a few hundred dislocated shoulders, and the pain and healing times have overlapped significantly. Thus, I take morphine and diclofenac every day, to keep the pain of the constant-healing-constant-breaking under control. I also take morphine and diazepam PRN for the worst fresh injuries. Just like anyone else would, if they had pain which was so severe that over the counter painkillers didn’t even touch it.

Just a rant. I’m not having a fantastic mental health day – Part of me is very prepared to walk into the river if my treatment is stopped on Monday, since that will be a more permanent solution than arguing with doctors again – so I’m getting it off my chest.

And, yes, I am reliant on the medical profession to relieve my pain. Because even with a sensible amount of exercise, a sensible amount of “just living with it”, a sensible amount of pacing my activities and a sensible amount of unconventional remedies, I still have episodes of pain, closely tied to fresh injuries, which need pain relief. Just like everyone else.

11 thoughts on “Warning signs

  1. I have lost count of the times O have had this argument. Ive blogged it a couple of times. I know you have a rheumatologists diagnosis and impressive documentation from stanmore.
    The last time this happened to me I threatened the gp with a formal complaint and it soon changed.
    One note…I found indometacin waaaaay better than diclofenac. Its worth playing along with waltzing nsaids to show willing. But do not back down. And no waterwalking till you acheive messiah status.

    • I hadn’t realised I could go down the formal complaint route. It’s tempting. I’m just worried because there’s only two GP surgeries that cover my area, I left one of them after they really screwed up last year, and I don’t want to end up with no GP at all.

      • The point is that what the GP was trying to do in my case, and from the sound of it in yours, is to change an established treatment plan without consulting/informing the patient or conducting an examination to decide if this is indicated. And in your case they are doing so contrary to existing best practice and expert advice given at consultant level.
        This is not only stupid it is de facto unethical and would result in censure from the GMC. And if you point that out they tend to backpedal.
        This is adversarial but then it is also unethical to leave a patient without medical care when they have a chronic condition, even if that condition is MH related.
        The fragrant papaver is correct that PALS is less adversarial. You know me, the only relationships I understand are based on mutually assured destruction or commensalism.
        With my GP what happenedd was this…dictat from on high said prescribe less opiates long term. computer gave a list of long term opiates non-terminal and sent all of them a letter or stopped all their repeat scrips. Especially if like me they had 2 types of opiate ( long and short acting). It was computer says no. The problem was the practice allowing the computer to do that blind without, as they should have, scheduling appointments and assessing casse by case This may be what has happened to you…

      • Thank you. I’m actually really glad that there is some recourse, and that everyone thinks that he’s being unethical. This is the same doctor that denied the existence of anything to assist with acute insomnia (Of the “Haven’t slept in four days, starting to hallucinate, can’t eat because it’s too exhausting” kind). He’s old – he’s old and well respected enough to have his own practice – but he is OLD and I get the feeling that he’s used to just getting his own way and going with his gut instead of following guidelines.

        Here’s to me not exploding from stress over the weekend.

  2. Percy, there’s always PALS. I am sure you know who they are. http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68

    My surgery had a ludicrous booking system for appts and ignored my complaint to them. So I think I referred it to PALS, who went round and kicked some butts. Now pre-bookable appointments are available (in small quantities) alongside the ‘book on the day face to face or telephone’ or ‘duty doctor’ options.

    So PALS can be your friend. They are NOT quite the same as complaining – slightly less adversarial, more of an advocate.

    I have some buddies with a Borderline Personality Disorder diagnosis. That opens up all kind of game-playing with them being stigmatised as being demanding and excessively dependent on mental health services. Not surprisingly, people tend to resist being given a BPD label.

    BTW…the NHS doesn’t rate TENS as woo. They say it works for some people, not for others, so a trial is needed to tell whether it’s helpful or not. I had one to use for pain in childbirth. Made absolutely no bloody difference to the appalling agony.

    Lots of love

    Cathy xxxx

    • I must admit to being a great fan of TENS as a distraction/placebo/thing that I use when I’m in pain, I was just surprised that the NHS like it as well.

      I’ve now rang PALS and am waiting for the callback.

      • Tried that, was seriulsy put off after leaving it on a programme which suddenly became spiky and thumpy (The one I use to un-knot the worst of my back) instead of the nice low buzzy one. Caveat electrocutor.

  3. Have you thought about moving to Colorado and smoking pot? I’ve been talking to my pain mgt. doctor about medical marijuana, and he’s actually a fan of the idea. Just not in the state where I live, where it’s still quite illegal.

    • Might be a bit of a trip to get there from Yorkshire 😛

      Plus, from previous weed experiences, it’s never had any real effect on me, even the top-grade stuff, which is a massive shame.

      I’m really glad that the states are getting more sensible about medical mari, we’re lagging behind so badly here. Might catch up this century…

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