Addendum to I cannot – seriously – continue to live like this…

Yesterday ended in the worst pain-related crisis to far.

In the morning, when the scheme manager saw the state I was in, she went off to shout at the GPs again. She got the guy who had turned out the previous day, and was as unimpressed as I’d been. Luckily, in the afternoon, someone else came out.

We had a chat – was I really suicidal? YES!!! And what can we do about that? Fix my intolerable pain!

We kicked a few ideas around, and finally settled on Gabapentin.

As he was leaving I asked, if it turned out there was no medical solution, was there a surgical one – amputation (I decided long before the current crisis that if it was ever offered I’d grab it with both hands). He said no surgeon would perform such an operation which, frankly, I don’t believe, especially if every other course of action has failed.

On reflection, raising that question at that time was probably dumb – doubtless he perceived it as suicide by instalments.

So the Gabapentin was delivered about 16.00, and shortly after the pain roared off the scale and pulled me under – I was flipping between unconscious and semiconscious until around midnight, when I slipped into an uneasy sleep until about 09.00 this morning, punctuated, not for the first time, by my waking up in the night screaming in agony. Things didn’t get much better once I was awake. Worse, in fact, as there was no escape from it.

The nurses arrived, bringing one of the staff nurses as I’d been in such a parlous state the previous day, and we had a long talk about medication – apparently I should have been told to take both the Zomorph (which I mysteriously typed as Zoloft yesterday**), and Gabapentin in addition to my existing pain meds. As I’ve written in these pages before, you must always ask the question, when getting new meds, are these as well as or instead of. I didn’t. However, knowing that particular GP as I do, the answer would have been instead of, I’m quite sure.

**Actually I think I fell victim to the spell checker – it offered me Zoloft and I unthinkingly clicked it.

Anyway, she stood over me while I shovelled down everything I had – Tramadol, Zomorph, Gabapentin and my illicit stash** of  Naproxen – we forgot the Paracetamol.

**Naproxen is one of the few things that moderate my pain, but my GP won’t prescribe it because I had a gastric bleed. It was, however, nothing at all to do with Naproxen and everything to do with me puking for 12 hours because my bowels has stopped working. Got hauled off to hospital, pumped full of i-v laxatives, problem solved. At no point was Naproxen ever considered.

At the moment, then, pain levels are worse than I’m happy with, but considerably better than they’ve been – the difference between tolerable and FFS end it now! I really don’t know how I’ll cope if it gets worse again, though. The staff nurse asked me to promise I wouldn’t kill myself – I was horrified to hear myself say No!

If, though, the pain can be held at its current level until the drugs kick in (apparently Zomorph’s effect is cumulative, which I wasn’t told, and Gabapentin has to build up over several days, which I was told), that won’t be a problem.

How successful this will be in the long term I don’t know, as my GP has an innate resistance to the idea of effective pain control (and if he knows I’m taking everything I’ve got, is liable to stroke out!), but after the staff nurse has seen me tomorrow she’s going to meet with that GPs and insist that they come up with a sustainable pain control programme. Also wants them to refer me to a pain clinic. Perversely, though, I’d have to improve a hell of a lot before I could attend.

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18 thoughts on “Addendum to I cannot – seriously – continue to live like this…

  1. I’m on Gabapentin for nerve pain and it works for me, but as you say, you have to gradually increase it til you get to the right dose. My dose is now 600mg morning and night.

    • I’ve started on 300mg very 12 hours, to go up to 900. However, as the maximum dose is 2 x 1800mg there’s plenty of scope for finding a level that works.

    • Ah – you didn’t see the unedited version! 😉

      Writing does provide a distraction, though, and one of the reasons I’m writing about myself lately (apart from getting a record of all this medical crapola into the public domain), is that it needs no research – something which is beyond me at present.

  2. I was on gabapantin for shingle pain and was at the lowest dose and could not stay awake. I think it was more of a knock you out drug than a pain med

    • A lot of the more effective analgesics cause drowsiness, especially the early doses, but it generally passes (and they don’t affect everybody to the same extent). I initially found, with Tramadol, that the second dose would make me very tired, but not the other 3. Taken one dose of Gabapentin so far, expecting to be drowsy, but wide awake.

  3. Stick with it it does take about a week to really take effect -Hoping this combo works for you.

    As always all best Ron, everything that can be is Xed for you xx

  4. KEEP ON TRUCKING, ‘R KID!

    I have been on 8×300 for some time. Life has become bearable on “do nothing days”, more is needed if any type of activity is attempted.

    More power to your nurses!

  5. I spent quite a long time, a couple of years back, having to go through the stage with both pain clinic consultant and GP where they give dire warnings every time the morphine dose needed to increase (and as you probably realise, Zomorph is merely a brand name for slow release morphine). But when I changed to a different pain clinic (different hospital) things became a lot easier – my new pain consultant is a lot more realistic about the need for morphine. I find that slow release morphine, paracetamol, an anti-inflammatory and top-ups of Oramorph (morphine syrup) work fairly well. The beauty of this regime is that I can do the fine regulation using the oramorph while taking the rest on a long term basis.

    I don’t know what you’ve been told about pain control, but my previous doctor said you should address the pain before it escalates, which is what the long term, constant doses do. If you leave the pain to get really bad before taking pain relief, there’s a much steeper hill to climb to get it under control.

    Whilst your circumstances are different, i would imagine the same principles apply. The long acting morphine (Zomorph) does take time to build up in your system. It sounds to me as if your pain relief combination needs to be stabilized at a base dose first. You could then ask if you can have oramorph or something else to take as a “top up” when things are really bad.

    I hope some of this might help! And that things get more tolerable. So sorry it’s got so awful!!

    • Your regime is what the nurses want to get me on to, but I think they’ll have an uphill battle. I hope they succedd as, by all accounts, this pain isn’t going to go away

      I was referred to a pain clinic in the early 90s. The doctor who, of course, had never seen me before, announced that unless I accepted that my pain was psychological, I wouldn’t be accepted onto the programme. I came very close to killing a doctor that night.

      Not only had I had osteoarthritis in my left hip since I was 32, I was struck by lightning in 1983, which literally fried my feet (melting the fatty pads that cushion the soles, so that walking, since then, has been like walking barefoot on shingle beach), and damaged most of my joints, so that as time passed, OA spread to pretty much my whole body – sod all psychological about that!

      Anyway, the idea of taking every pain drug I have this morning (Zomorph, Gabapentin, Tramadol and Naproxen, to which I later added Paracetamol), seems to have been the right approach. Still have what I previously would have classed as severe pain, which is nowhere near as severe as it was overnight and this morning, which was so far off the scale it was in a different universe.

      There’s just one downside – it’s playing hell with my typing!

  6. Ron, I really feel for you. Gabapentin can be a wonderful medication where normal pain killers dont work ie neuro pains. It is cumulative but you suddenly one day you find you haven’t had much trouble with burning, itching and crackly pains. I pray this happens for you. It doesn’t stop every pain and even though I’m on 1200mg 3 times a day I still need to top up my pain relief and I’ve been ‘diagnosed’ with ideopathic oedema ** that leaks, although not as extreme as yours.
    **shorthand for we-don’t-know-why-oedema

    • This morning I took all my pain meds, including the first dose of Gabapentin and there was, after a few hours, a huge improvement, maintained until the next dose 12 hours later, minus the Gabapentin. Still hurting, but more of an inconvenience than devastating. I can certainly like with it, which I couldn’t have before.

      Have you checked out the lymphoedema website? Well,you never know, if your docs are as dumb as mine.

      http://www.lymphoedema.org/Menu4/1How%20to%20recognise%20lymphoedema.asp is the diagnostic info page.

  7. as long as we can understand what your typing it dont matter Ron. what does matter is that you no longer have to go through what you’ve been going through.whatever it takes.

    i know when i was in hospital in Bedford over 16 years ago, for removal of abdominal tumours (2 the size of kilo bags of sugar i was told). their pain relief regimen was brilliant. i never had any pain at all. apparently before you were stitched up they injected morphine into the wound. you then had 4 hourly morphine the first day. 4hrly pethidine the 2nd day and 4hourly Tylex x2 after that. i had those for the next 4 days (was in 6). took some home with me. but the following day i felt awful after taking it.rang the surgery .district nurse came out, said i probably didn’t need the Tylex .they were possibly too strong for me. to use paracetamol if i needed anything.i found i didn’t. have had nothing but praise for that hospital even though the poor nurses were run off their feet.i could not have had any better treatment.

    • Compare and contrast with APH, where the nurses could take 2 hours to respond to a patients’ alarm call, when they might just have wanted water, or needed pain meds, or were bleeding to death – it made no difference. While there I never got my Tramadol less than an hour late, and a few times not at all.

      The hospital is criminally lax.

      And no, APH, I will not take this down – you should know that by now, so don’t bother.

      • as i said that WAS over 16yrs ago. times have changed and how since then/ i am now told that hospital is nothing like it was then. mind you i expect it will depend on the staff as much as anything plus the cut backs.what they are allowed and not allowed to do now. no matter what aspect of life and things we need in life…. changes have occurred and i cant see it ever being the same again. at least not while this evil lot are in power. nevertheless their regime then is worth remembering as it ,to me, can be the answer to a lot of our pain./pains. get under the pain to get over it. start pain relief before it gets too bad.

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