Surgical appointment…

Trigger warning – suicide mentioned.

 

Next Tuesday morning an event that has taken two years of incessant pleading and nagging will finally happen – I get to meet a vascular surgeon who has expressed a willingness, no doubt hedged about by caveats, to possibly amputate my right leg below the knee.

Actually, that crisis was brought about by an unwillingness on the part of my GP to prescribe effective analgesia. In the end I had to go over his head to the senior partner in the practice. By then it had taken a year.

My GP was – probably still is – convinced that a effective dose of morphine would shut down my breathing reflex. True, it might, but might is a universe away from will, yet he treated me as if possibility equalled certainty, and it does not.

Continue reading

The dangers of the medication lottery . . .

A Caveat – I don’t really expect you to read this. I’m writing it to get it out of my head, before it tips me into a breakdown. So why publish it, I hear you ask?

Good question, and I’m not sure. I do know it’s not an appeal for sympathy, though.

Having spent this morning having my legs debrided by the nurses, and much of the rest of the day sleeping through the resultant pain, I’m glad it’s over.

Sadly, it all starts again tomorrow, and the day after, and the…   Well, you get the picture.

The situation has become intolerable – there has to be an end – and yet, there isn’t. That’s not Continue reading

Some thoughts about controlling pain from WebMD…

According to WebMD, some ways to reduce chronic pain include exercise, meditation, avoiding alcohol, cutting smoking, practicing (sic) better eating habits, keeping a pain journal for doctors, scheduling relaxation and distraction. (source:- ThirdAge.com ).

Let’s look at those a little more closely, from my perspective, because some are nonsensical, and not just for me.

Exercise – Simply 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.