Pushing me to the edge all over again…

The District Staff nurse phoned the GP surgery this morning, telling them I needed a home visit (got a temp of 37.7C) – that won’t happen, I said, it never does – at best I’ll get a phone call – so she went round in person to impress upon them that I needed a real, live, doctor! And soon.

Didn’t get one.

Sometime after 15.00 I got a phone call from their reception asking if a doctor had been – well, no, but don’t they bloody know?

Later, I got a call from one of the doctors – who doesn’t know me at all, but she has announced her intention to bugger up my pain meds without giving a toss about how much damage she’s doing. And I think I’m on safe ground when I say that she appears to have not the slightest idea how appalling the pain of lymphoedema can be. If she wants to know she can ask my neighbours how often they’ve heard me screaming in agony, especially if I have to get out of bed in a hurry. Or the nurses for that matter – removing dressings that have welded themselves to raw flesh is as much fun as it sounds.

So, I’m writing this blog post because at this rate they’re going to Continue reading

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Update on the role of purines in beer on arthritic conditions…

In August 2010 – doesn’t time fly when you’re having fun? – I wrote about the effect purines in beer had on my osteo-arthritis.

Fast-forward to, well, now, when my beer consumption has been as close to zero as makes no difference (less than 500ml a week), for around 3 months,** and it’s finally sunk in that, while Continue reading

Beer and arthritis…

As regular readers may know, I have serious and widespread osteo-arthritis – the result of being struck by lightning in 1983, which damaged most of my joints, among much else.

As the condition deteriorates, I’ve noticed that going to the pub means that the following day will be a bad one, both for mobility and pain. I’d assumed that this was caused by to-ing and fro-ing to the Gents’, but it’s a very small pub and I really couldn’t see it being the sole cause, so I started checking out beer and arthritis.

Pretty much immediately I struck gold, with Continue reading

Pain – the problems and dangers of control…

For new readers, or old readers that might have missed it, a little background about pain as it affects me.

The most dominant pain is that resulting from being struck by lightning, in the hills of North Wales, in the summer of 1983. This damaged most of my joints, but those in my legs are affected more than others, and it quite literally fried my feet, internally – melting the fatty pads in the soles, so that all that’s between the bones of my feet is skin and a very thin layer of muscle, the effect being akin to walking on shingle. It also destroyed an expensive pair of walking boots. I have no doubt Continue reading

Pain and ME/CFS…

I’ve just read that in the US, the FDA is muttering darkly about withdrawing Percocet and Vicodin (and how will House cope then?), and other drugs containing the particular ingredient causing the FDA anxiety, acetaminophen, which is the active ingredient of Paracetamol. Possibly, this will prompt the trolls at NICE to review Paracetamol.

Here in the UK, doctors have a touching, if somewhat misplaced, faith in the power of Paracetamol, despite the risk of liver damage from long-term use, or abuse, and the fact that, in stand-alone form, it’s Continue reading

Where is the effective pain control for UK sufferers?

“Thousands ‘left in pain’ due to shortage of specialist clinics,” says an article in today’s Observer, and Professor Sir Liam Donaldson, the author, is perfectly correct in his assertions. Just a shame he had to drag in Jade Goody. He could have made his point – that provision for people with severe, intransigent, pain is hopelessly inadequate in this country – without jumping on the populist Goody bandwagon. But hey, many thousands of us who are Continue reading

Arthritis and exercise…

I’ve commented elsewhere, and unfavourably, on the current fad for treating arthritis with exercise. I still think it sucks, and what prompted this is that I have raised my exercise levels slightly of late, which has had the effect of causing a substantial increase in my pain levels, culminating in nights which are pretty much sleepless – I am not Continue reading

Pain control – a personal view…

A caveat: this is a very much a personal view – what works for me may not work for you. One important point – never take too much Paracetamol or you risk liver damage.

Paracetamol, for anything other than a headache, is pretty inadequate on its own, even though it’s the analgesic of choice for many doctors. However, combined with a more potent analgesic, like codeine, as in Co-codamol, or dihydrocodeine, then it can be very effective.

Co-codamol comes in 2 flavours, the over-the-counter version, with 8mg of codeine and the prescription-only version, with 30mg, both combined with 500mg of Paracetamol – it goes without saying that the latter is better. My pain, though, progressed beyond the point where 30/500 Co-codamol was effective (and it was never very effective anyway – it blunted the pain, rather than relieving it in any meaningful way), and I was prescribed dihydrocodeine (DHC) – the sustained-release version, and it was with that, for me, that Paracetamol came into its own.

Eventually, the effectiveness of DHC began to lessen, probably because I was taking only half the prescribed dose (the full dose was 120mg every 12 hours – I only took the morning dose because all opioid analgesics are constipating. and, with the full amount I was locked solid – I also wanted to keep something in reserve for the days when the pain got away from me), and I started looking for something that would give DHC a boost.

I’m still prescribed Co-codamol, and while that, combined with DHC, is excellent (yep, I do know you’re not supposed to do that – I don’t care, it’s my pain, I’ll deal with it, especially as the only really effective alternative is alcohol, and that brings its own problems), but in Sainsbury’s one day I picked up some Paracetamol on a whim. And here’s an interesting fact – otc sales of Paracetamol are restricted, to reduce the risk of suicide, but the maximum quantity you can buy otc is 25% more than the lethal dose – how the hell does that work?

Anyway, I quickly found that taking Paracetamol while the DHC was in my system was amazingly effective – a bit like a giant Co-codamol (a caveat: I have no idea if this is officially sanctioned – all I can say is that it works, and that’s good enough for me). So, I take my DHC at 5 in the morning, then go back to bed, so that it’s in my system by the time I get up then, later, I’ll take 2 Paracetamol if I need them, repeated after 4, at need. That gets me through to the point where DHC has pretty much worn off, then I revert to Co-codamol at 5 in the evening which, as I’m far less active by then (for a given value of active), is good enough.

If necessary, I’ll take Co-codamol instead of Paracetamol, but I try not to. I don’t think it’ll harm me, it’s just that I have another source of codeine – codeine linctus – so I don’t want to overdo it.

Non-steroidal anti-inflammatory drugs (NSAIDs), are also valuable analgesics. Like Paracetamol, though, the most popular NSAID, Ibuprofen, isn’t wonderfully effective and, for me, at least, does nothing at all. The problem, though, is the more potent NSAIDs carry a much higher risk of serious side effects, like gastric bleeding, I have Naproxen (aka Naprosyn), which is excellent for reducing pain and stiffness, but is very high in the risk table for gastric erosion, so it’s something I keep for when all else fails.

I found out that by taking Naproxen either during or immediately after my evening meal, side-effects were minimised. The problem is that I’m in a constant battle to keep my steroid-induced weight gain under control, and very often my evening meal is insufficient to blunt the corrosive properties of the drug. So it’s a bit of a vicious circle – if I want more pain relief, I have to accept that I need to eat more and thus gain more weight, placing even more stress on my joints and muscles. I got around this by just having one meal a day, in the evening, so that when I need Naproxen, I can minimise the problems with sufficient food. That worked well for several years, and I’d have no reservations about recommending it for those with weight problems. Now, though, I have a new problem – a rapidly diminishing appetite, probably at least in part due to eating so little for so long, and I don’t know what the answer is.

Personal difficulties aside, though, with adequate food to buffer it, Naproxen is an excellent drug. There’s just one reservation – NSAIDs, as a group, can cause respiratory depression. As my lungs are pretty well shot, my GP expected serious problems with respiratory depression, but in reality there have been none at all. Presumably the drugs I’m taking for COPD are countering any tendency towards respiratory depression. One unexpected side-effect – and a bit scary until I figured out what was causing it – is that about half an hour after taking Naproxen, my heart would begin to beat hard and fast. It doesn’t last long, though and, as far as I’ve been able to establish, it isn’t harmful.

Personally, I have a problem with GPs’ reluctance (and it does seem to be widespread), to prescribe effective analgesia, in the same way that they’re parsimonious with antibiotics. I was pushed to the brink of suicide before mine would prescribe DHC, and that’s just not acceptable. My advice, if you find yourself in that position, is to sit your GP down and make it quite clear that you’re heading in that direction – before you actually get there. I don’t know what the suicide rate is for chronic, intransigent, pain, but I suspect it’s pretty high. Get treatment before you reach that point – there’s no virtue in suffering.

I know more people than is really sensible who won’t take analgesics because they don’t like the side effects which, to my mind, is just stupid. Just as there’s no such thing as a free lunch, there’s (pretty much), no such thing as a drug without side-effects, and if you want effective analgesia, you’ll have to deal with that – feeling a bit spaced-out, or a little pukey, is infinitely preferable to excruciating pain. And if you persevere, most side effects go away or, at least, are greatly reduced, so be prepared to make a bit of an effort. For example, when I first took DHC I was totally stoned, so much so that it would have been dangerous to drive. That lasted about a week, before fading away and now, even on the maximum dose, I don’t get so much as a buzz. The people I have in mind, though, would have stopped them on the first day and, to that sort of attitude I can only say that their pain can’t be that bad – if it was they’d go to any lengths to put an end to it, instead of just bitching and whining about it

For the moment, then, my pain is under reasonable control. I still, from time to time, get break-through pain, and that’s a problem that really needs addressing. Maxing out my DHC would probably help – there does seem to be a slight cumulative effect with the full dose – but I need to find a way around the constipation problem first, preferably without recourse to even more drugs. I have been taking ground-up linseeds, which are effective, but for some reason, they’ve triggered my IBS, so I’ve had to stop them, and finding a substitute is still a work in progress.

Addendum:

One thing that completely slipped my mind is Amitryptiline, a tri-cyclic antidepressant that, in sub-therapeutic doses can aid with pain control. I don’t think anyone knows why, but it’s a well-documented fact that it works. There’s also a bonus effect which, for people with ME/CFS is valuable – I’ll come to that.

The dose for pain control is far less than the psycho-therapeutic dose, at 10-30mg, taken about an hour before bed. Start with 10mg and see how you go. Unlike when used for depression, when it can take several weeks to kick in, my experience is that it works from the first dose.

I take 20mg, with the occasional excursion up to 30mg, but at 30mg – although that’s still a long way sub-therapeutic – you can start getting side effects, like a dry mouth, and there’s something of a hangover the next day. At 20mg, I’m not aware of any problems at all.

Right, now for that ME/CFS bonus. Many ME/CFS sufferers are plagued by extremely vivid, often deeply unpleasant nightmares. Amitryptiline shuts these down very nicely at 20mg.

In my case, though, the nightmares tend to the ultra-violent, and while most of the time I’m the observer, just occasionally, I’m the victim. As, for the most part, I’m the least violent person you could wish to meet, I find these nightmares very worrying, not to mention extremely disturbing – and they are the reason why my Amitryptiline occasionally goes up to 30mg.

This morning, I had a minor epiphany, after the latest in a serious of horrendous nights – I think it’s pain causing the nightmares. I’m in probably more pain, lying in bed, than when I’m up and about, in the same way that standing still is more painful than moving around, and I think the violence of my dreams is my subconscious trying to rationalise the pain. Makes sense to me, anyway. Obviously I have a remedy, 30mg of Ami, but I’m finding tne hangover increasingly difficult to deal with as, recently, it’s wiped me out for most of the following day. If I find an alternative solution, I’ll post it here.

Remembrance of things lost…

Previously posted here in the early days when I was getting few hits. A favourable comment prompted me to move it up the timeline and repost it. I’ve had to change the post title – I like the original better.

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I have remembered a thing…

A time when dawn never came unbidden, or too early; when snow could never be too deep or crisp; when the jingle of harness and the clink of milk-bottles announced the coming day, in counterpoint to the dawn chorus of birds not yet decimated by chemicals and prairie farming, and the clatter-scratch of the knocker-up, as he trod his round, come balmy dew or raging storm.

A time when lust and love ran side by side in my blood, and neither were sated too often; when people were old at 50, and for ever; when summer sprang to full bloom between July and September, and the seasons ran, orderly, in their allotted spans. When autumn gales boomed through the streets, demanding combs and kites, and fish and chips came in yesterday’s newspaper, all the better for it, and scratchings were free.

A time, when small children raced in the streets, heedless of a mother’s cries to stay close – and never came to harm; when little kids really did hear sleigh-bells at Christmas, which wasn’t Xmas; when people were nice to each other, and to themselves – a lost art; when a skinned knee was a major disaster, and major disasters happened to someone else, thousands of miles away, and the world was unimaginably huge.

A time when my blood sang brightly in my ears, lying quietly abed, waiting for sleep, and my bones rode easily within my flesh; when pain was a sudden, and fleeting, thing – here, and goneforgotten in a flash; when the footfalls of midnight mice rang like thunder, in the days before thunder came to sound like the footfalls of mice, and when each new day was joyfully greeted as a friend, to be enjoyed, not cursed as an enemy, to be endured…

I have remembered – how it was not to be old…

See also here.

I have remembered a thing…

I have remembered a thing…

A time when dawn never came unbidden, or too early; when snow could never be too deep or crisp; when the jingle of harness and the clink of milk-bottles announced the coming day, in counterpoint to the dawn chorus of birds not yet decimated by chemicals and prairie farming, and the clatter-scratch of the knocker-up, as he trod his round, come balmy dew or raging storm.

A time when lust and love ran side by side in my blood, and neither were sated too often; when people were old at 50, and for ever; when summer sprang to full bloom between July and September, and the seasons ran, orderly, in their allotted spans. When autumn gales boomed through the streets, demanding combs and kites, and fish and chips came in yesterday’s newspaper, all the better for it, and scratchings were free.

A time, when small children raced in the streets, heedless of a mother’s cries to stay close – and never came to harm; when little kids really did hear sleigh-bells at Christmas, which wasn’t Xmas; when people were nice to each other, and to themselves – a lost art; when a skinned knee was a major disaster, and major disasters happened to someone else, thousands of miles away, and the world was unimaginably huge.

A time when my blood sang brightly in my ears, lying quietly abed, waiting for sleep, and my bones rode easily within my flesh; when pain was a sudden, and fleeting, thing – here, and goneforgotten in a flash; when the footfalls of midnight mice rang like thunder, in the days before thunder came to sound like the footfalls of mice, and when each new day was joyfully greeted as a friend, to be enjoyed, not cursed as an enemy, to be endured…

I have remembered — how it was not to be old…

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Yeah, OK, I’m only 63, but I’m having a deeply shitty day!

See also here.