Oh i know, you have heard me talking about drugs a good deal.
They form a major part of my life, and the lives of most zebras. And there are some experiences we all have in common, I think.
We have tried to soldier on without them, putting ourselves through pain and damage.
The expert medical advice is to medicate at the first hint of pain, to avoid damage and kinesiophobia.
We have had a loved one tell us the drugs change us and they hate it.
As a very wise woman put it, would you rather me be 90% me, 10% drugs or 10% me 90% pain?
We have had doctors, often locums, refuse to renew our prescriptions, sentencing us to agony.
Show me a chronic pain patient and I will show you someone who stockpiles drugs. If your life depended on something, would you secure your supply?
We have had "alternative" pain relief pushed at us by relatives and medics.
See below, but basically it doesn't fucking work.
We have been told that taking opiates will give us hyperalgesia and lead to even more pain.
See below, this is , well what is a polite word for bollocks?
We have been told that the drugs are addictive, and this is awful.
So OK how do we deal with this and come to a sensible idea of how to live.
First of all amongst the few experts in EDS-HT out there there is no argument that pain must be controlled and controlled early. NSAIDS are recommended as are the lesser opiates such as codeine and tramadol. The advice is plain, at the first hint of pain take the pill. Put simply the pain causes movement alteration which sets off other joints etc. Also the pain is NOT going to go anywhere. So take the damned pill.
Oddly most zebras are resistant to this. Many of us try for years to not take pills, to struggle on. And we make ourselves worse doing it. Partly this is because of the massive peer pressure against any kind of drug use. Partly it is the side effects, and here is where doctors should have a pineapple shoved up their recta (what is the plural of rectums?) because a bit of counselling and co-medication could eliminate these. With NSAIDs for example there is no excuse for not co-prescribing omeprazole to stop the really horrible stomach symptoms. No-one enjoys vomiting blood. It is not a rare event, it is rare to have no gastric sequelae from NSAIDs. So why is the co-prescription not automatic? Similarly with opiates. I have had a few opiates over the years. Currently on tramadol but Codeine and buprenorphine also. All of them constipate you. I currently shit once every 3 days, a turd of such size that it blocks the toilet. When you flush the water builds up behind it until it fires it through the pipes like a torpedo. Sometimes if i am dehydrated, or have been inactive, its a hard one.
Tell me gentle reader, have you ever done a shit so large the pain of passing it has made you faint, so you wake up head down, arse up half on the toilet with a giant poo-pole hanging out of your arse? No?
It is an experience. And thats a good one. I have had poos that just wouldnt come out. Being hypermobile means that you can reach 6 inches up your own arse, which comes in handy on those occasions.
What many people do not realise is that those experiences, which all opiate users will recognise, are TOTALLY UNNECESSARY. Study after study has shown that combining an oral opiate with naloxone gives full opiate activity and no constipation at all. I have one painkiller for long flights that is called targin, combines long acting oxycodone with naloxone. Not only does it not cause constipation, it unleashes the pent up tramadol poo-hordes. I have to take it for a day pre flight to shit it all out. So why do opiates not automatically get prescribed with naloxone?
Other side effects only go away with time. The wooziness, cognitive difficulties, sleepines etc. tend to fade after a few weeks. But there is no doubt that this manifests as the kind of behavioural changes our loved ones dislike. But then our loved ones need to feel our pain, really its not an option to hurt like that all the time.
So what about the alternatives to drugs, I hear you say?
Well oddly most of us have come across these already. Nociception, the actual nerve stimulus, is not the same as perceived pain. So if you distract yourself, keep busy, keep moving, it gets less hurty. this is how all those mindfulness courses etc. work and it does work. I took up origami as a distractor and to keep my hands moving ( being still hurts. I know this is a bracket but take a while to think about that- the act of resting hurts. That says it all about EDS for me) and it helps a bit. The other thing is not to allow too much space in your consciousness for pain. Do you remember "A Nightmare on Elm Street" where by turning your back on Mr Krueger you robbed him of power? Well if you think of pain as a message, and a fact, but nothing to worry about then it gets less. If pain itself upsets and panics you then it will get worse. And that, children, is how CBT for pain works.
So two woo-ey methods with some point. now on to the dubious bit. Accupuncture.
Why it is that people who care for me want some escapee from a Jackie Chan movie to ram unsterilised needles into my taint I have no idea, but this is the number one suggestion. And it doesnt work. Or rather it is a placebo. Pretending to do it works just as well as doing it. Placebos are unethical, end of.
Now what about the opiates?
Well we know they are addictive. But we also know that if you take them for pain, not pleasure, they are much less so. We also know that using addiction as a term for dependence is unethical and just stupid. This paywalled study gives good data to suggest that fewer than 10% of chronic pain patients go on to become addicted in any reasonable definition and this number drops if you discount needing to take the drug to stop the pain as a condition. In fact chronic pain patients are considerably less likely to be drug addicts than doctors.
Hyperalgesia is another one. Most doctors will peddle this. This is the idea that drug dependent people, habitual opiate users, will become hypersensitive to pain. There is evidence too. Sort of.
You see when you induce pain for studies you cant just kick people in the nuts. you need science pain. So they use Cold Pressure. And using Cold Pressure you see hyperalgesia in all opiate users. the pain gets worse the more they take.
Unfortunately this only applies to Cold Pressure pain, which is totally unnatural to anyone except penguins. Electrically induced pain does not show hyperalgesia, nor does heat. Or being kicked in the nuts, So this bears limited relationship to actual pain , except for some headaches. So as a reason to withhold treatment it isnt.
Fuck it, its time to go to the gym. But you get the gist- lots of poor information, lots of pressure. I cant get no satisfaction etc.
By the way i can give a couple of tips. Endorphins. Once i start at the gym i get pain relief, which lasts at least 30 mins afterwards.
Similarly when enjoying the carnal delights of Mrsinky I am pain free, and will remain so for about an hour after finishing. Perhaps not practical for pain at work, but it definitely helps me sleep.