Living with chronic, severe and intransigent, pain…

Note: I started this some time ago, but have been undecided whether to finish and publish it as it seems a bit whiny. Right now, though, I’m hurting enough not to care. That, and I think it’s better out of my head than not – gives me some perspective.

***

I’ve been taking 30/500 Co-codamol for a long time now, except for relatively brief diversion to Dihydrocodeine (DHC), which was somewhat more effective but, given my heart problems since January 2011, has had a tendency to trigger pulmonary oedema. I still take DHC occasionally as part of my “Spoonie Speedball” – 2 Co-codamol + 60mg DHC and 200mg Naproxen, on the intolerable days.

Been a lot of those of late… Not good on several levels, not least because Naproxen screws with my heart. Last thing I need.

For some reason – over-exposure, I suspect – I’m finding pain impossible to quantify, having lived with it for so long. With new pain I have no problem assigning it a place on the simplistic 0-10 scale (relatively new O-A in my right hip, for example gets 9 or 10 when it bites), but I’ve had it in my left hip for 35 years, all through the backpacking/rambling years,** and, like the rest,***  it’s become so much a part of me, life would feel very strange without it. Wouldn’t mind the chance to find out though!

**Got me a rep as a hard bugger. I just felt that if I wanted to do something I loved, then it was part of the package, to be borne, like aching feet and shoulders.

***There’s barely a joint or muscle group that doesn’t hurt to some, often high, degree. Even my long bones ache as if they were broken only yesterday. Almost everything hurts to touch, and all except the original O-A dates from the period summer 1983 to autumn 1985 – no break, no let up. (Friends, by the way, have mostly figured out my code when asked how I am…)

As I said, quantifying pain in any meaningful way is the problem. Sitting still there’s a sort of background level 8 if I concentrate – but like I said, it’s simply become part of what’s normal for me, and it really is very hard to assign a meaningful number.

Getting up from a seated position, though, is a very definite 10+, ditto standing/walking. But here’s the thing –15 years ago I’d have used 10 as the starting point, just sitting around. I’m in no less pain now. A lot more, in fact, as I’ve picked up a few injuries (from falls), and developed widespread O-A since then, and yet, subjectively, I’ve downgraded it, which is foolish and wrong. I know that for sure because it’s times like this, writing about it, that bring it back into focus with a vengeance.

I know that the only sensible answer, if asked to pick a number from one to ten, is don’t be bloody stupid – go find a useful scale! I just have trouble admitting it to myself.

And at night I often wake screaming in agony, as my defences are down and denial doesn’t work.

That is the reality. 10 points high – and rising…

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15 thoughts on “Living with chronic, severe and intransigent, pain…

  1. I haven’t had pain for as long as you have Ron, but I know what you mean. The background pain that’s always there seems to be a 7 right now, but do I do anything about it? No, but I should.

    And I totally relate to the night time pain too – every time I try to turn over.

  2. Ron, in 2002 I had knee replacement, they left the knee cap which caused real pain for 2 years until it was replaced. I have both Osteoarthritis and rheumatoid arthritis . The Consultant today recommends replacing both my right hip and left shoulder. I am not sure I want to risk another failure so will think hard about having operations. I use between 4 and 6 500mg paracetamol on most days, which copes fairly well as a pain reliever. However IF the pain level is above an 8 I use Tramadol, cuts the pains to zero and I sleep really well. On the down side Tramadol acts on me in the same way as 30/500 Co-Codamol = Constipation ! Andrews liver salts to the rescue ! 😉
    Maybe you should try Tramadol ?

    • On a normal day, Geoff, I take 8 30/500 Co-codamol on a normal day, Might as well be Smarties some days. I’d love to try Tramadol, if my GP wasn’t a total cretin. I had to tell him I was suicidal to get DHC (wasn’t entirely a lie either).

      Trouble with analgesia is that all opioids and opiates cause constipation – it’s unavoidable.

      I’ve known 3 people who’ve had knee replacements, only one came out of it better than he went in. One wasted and died – he was no more mobile, and had even more pain – I think he just quit: not one of nature’s stoics. The other was hobbling round on sticks before, and has been ever since.

      Unless RA has caused bone degradation, the hip replacement should be OK. The only reservation I’d have is the improved mobility offered isn’t my idea of improved mobility. Shoulder sounds horribly complicated though – both mine are shot from leaning on crutches for 26 years, but I think I’ll stick with them!

        • Cheers Geoff – fact is, though, all opioids and opiates are addictive, the latter far more so than the former. I was addicted to DHC – coming off is like a bad case of flu. Considering how edgy I get if I run out of codeine linctus, I’m probably addicted to codeine too, but I’m not too bothered.

  3. I just love the way you are able to explain how the pain affects you and it affects me the same. I dont have OA or RA but have prolapsed discs, upper and lumbar and Degenerative Disc Disease, also have trochanteric bursitis in my left hip which is off the scale pain wise.
    I have used a Fentanyl patch for 3 years, had it doubled in strength last week, also on a bad day can take 30/500 co codomol x 8 and has no effect, theres no where to go when the pain is so intense.
    Ive tried Tramadol and dont like the loss of control, they dont relieve the pain, I was told by consultant that Tramadol arent as strong as 30/500.

    But I feel as though theres no end to this, Ive just had a spinal epidural which has not relieved the pain but has aggrevated the condition, Im back 2 years…boo hoo!

    • It’s not unknown, of course, for doctors to lie when they don’t want to refuse to prescribe a drug – it’s as though public access to the British National Formulary, and the Internet, had never happened in their odd world.

      Bottom line, Tramadol is for moderate to severe pain; Paracetamol and Codeine, together or separately, are for mild to moderate pain. Ergo, you’ve been lied to.

      • It’s irrelevant really, it’s me who doesn’t want Tramadol, I don’t like the effect they have.
        I’ve had 4 years of pain in various degrees and am really not bothered if I am addicted, I can’t see any alternatives.

        • There are ample alternatives. They might all do effectively the same thing, covering the spectrum from mild to severe pain, but many affect the patient in different ways – there should be something that doesn’t disagree with you too badly,

          Have you thought of asking for a referral to a pain clinic?

          • Yes there must be something, I go from codeine to cocodomol,, try that for a while and then change it.
            Pain clinic consultant suggested epidural, that was March had that done July, now I’m trying to see what gets me through the day – I need to go back to work to save my sanity!!!
            Fentanyl must to something, I’m useless if I forget to change it.

            It takes too long from GP to consultant at pain clinic to recommend something else to try. Still in pain with nothing that works.

            I getting be very desperate with no end to the pain that is still winning!!! !!!!

            • Fentanyl patches are supposed to be very good – they’re used to treat the pain of cancer. Try setting an alarm on your mobile to change it on time (I have alarms for all my meds – not missing a dose makes a big difference).

              Or if you have Outlook on your computer, you can use that.

              • I think if I forget on purpose not to change it I’m proving whatever, not really cos. Hurt that’s all.
                I had hip pain for a year and I walked stupid before I had the 1st injection that was wonderful,life saver. I reduced Fentanyl at that time until the pain came back and it was increased again.
                Thoracic slipped disc happened 1991, so it’s been a very long journey. And very little does very little for that!!!!!!!! !

  4. I’ve been using Fentanyl patches 50mg change every 3 days, for around a year and I find they do help, but like everything else, sometimes less then others.

    That might sound strange but as a 20 yr chronic pain sufferer, sometimes I just HAVE to push myself (for a variety of reasons) and when I do I end up on a multiple cocktail of drugs which, for me results in, during the pm/evening of day 2 I actually start withdrawal – this is vile; but overall, I find them useful

  5. A late reply Ron, I am definitely with Geoff – Tramadol is worth a try,if you can push your cretinous GP into giving you a month`s trial.I started with it after a hip resurfacing op 5 years ago and found it greatly relieved my other long–standing
    severe pain in my head,neck, chest, back,legs arms – all over really.I used to take co-codamol and they were like your smarties in comparison.Once I came off the drug the withdrawal symptoms were pretty bad,and my pains returned with a vengeance.I managed to cajole my GP into continuing with the Tramadol and have been on them now for over 3 years,with no regrets.(The serotonin release helps,I feel more relaxed.)At 64 ,I have no intention of stopping,so don`t worry about withdrawal again.

  6. PS.I only take a couple a day max,and usually with paracetamol.In fact it`s how I start every day.I discovered that they have this as an over-the – counter remedy in South Africa (Smaller doses of course)Mine are 50mg

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