The painful truth

Chronic pain is an insidious beast. Though it may not incapacitate, even in milder forms it is debilitating to a degree that many people never understand. It is difficult to comprehend that someone who can walk and talk and move perfectly well is being eaten away from the inside – dragged down, mauled about, and forced to struggle through every waking moment.

In my early twenties I had chronic fatigue syndrome (CFS). In my case it didn’t involve a lot of pain, but it was incredibly debilitating. CFS shares with chronic pain the problem that you can pull yourself together and look “normal” from time to time, and this makes it difficult for people to wrap their heads around the severity of the condition.

For the last few months I have been having a run-in with chronic pain. In my case there is a light at the end of the tunnel (albeit faint and flickery), and there is a good chance I will be free of it after surgery in a few weeks’ time. Unfortunately many people with chronic pain are not so lucky, as they have conditions that really can’t be tackled in any definitive way.

Arthritis, inflammatory bowel disease, fibromyalgia, and many, many more conditions can cause constant, debilitating pain. Sometimes the pain is low level, sometimes it is fierce, but in all cases it has a profound impact on quality of life. Modern medicine is not as good at pain management as we would like to think. Opponents of assisted dying often argue that palliative care is perfectly adequate. No-one needs to suffer, they would have us believe. Yet the pain management available even for low level chronic pain is simply not adequate.

Strong painkillers cause drowsiness to the point where life has to be postponed until the effects wear off. Milder painkillers are woefully inadequate. All painkillers have side effects that increase dramatically with frequent use. And this is for low level pain. The intense pain that can come with terminal conditions like cancer is a whole different class of opponent.

Despite the scientific tendency to separate mind and body, pain is a clear example of how inextricably intertwined our minds and bodies truly are. A psychologist friend of mine sums it up beautifully: “We believe in mental health that about 50%* of patients who present to GPs with pain are actually showing signs of clinical depression. In some cases the depression causes the pain (psychosomatic) and in the rest the pain causes the depression!”

Pain drags you down, both mentally and physically. It makes it harder to sleep, wrecks concentration, and makes getting through life a constant battle. You wind up sleep deprived, exhausted and irritable. The irritation is a feature both of the pain and the sleep deprivation. It makes parenting an even bigger challenge than usual, as your fuse becomes shorter and shorter. It makes work incredibly difficult – particularly work that requires a high degree of either patience or creativity. It takes a massive toll on relationships, both personal and professional.

Pain pushes you closer to the edge. It makes otherwise bearable situations unbearable. It makes tempers shorter and perspective much more elusive. It is, in short, incredibly difficult to live with.

The bright spot in my current brush with pain has been the support of the people around me. I find magnificent solace in the colleague who takes one look at me. says “you’re in pain today, aren’t you?” and subsequently takes unobtrusive care to lighten my load. In the friends who check in to see how I’m going. In the way my husband takes on the lion’s share of work around the house without complaint. In the myriad of small but poignant ways in which people express their sympathy, concern and support.

Now *that’s* pain relief.

*figures are a rough estimate, not experimentally tested
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5 thoughts on “The painful truth

  1. Joe

    Golly, once again you manage to touch on one of my pet peeves. (Either I have more of those than I thought, or you’re good at pre-emptively channeling my dead spirit. Next you’ll be ranting about obstetricians’ needs to comply with population-based statistical treatments, rather than diagnostic / individual case care, in order to satisfy insurance / liability requirements.)

    Paracetamol – fever reducing (almost useless) and maybe inflammation reducing in some case. Useless to me personally.
    Ibuprofen – dunno, on paper it should work for some things but again it never seemed to do much for me.
    Aspirin – has some effect, indeed a small amount is probably generally health beneficial, but not so good in medium or high doses over a long haul.
    Codeine – locks up your digestion, addictive, rapidly diminishing returns… how is this even available over the counter?

    Not to mention things like … it took over ten years to go from the research showing no causal link between fever and febrile convulsions, and the UK medical authorities changing the recommendation for doping children.

    Most drugs have diminishing returns. Drug treatments fail to acknowledge the control / measure / target / feedback systems in physiology which mean that trying to counteract a measure just produces (over time) an adaptive response as the body continues to attempt to maintain a target. About the only control system adjusting drug I can think of is insulin. Take an “inflammation reducing” drug for long term and no doubt the body will fight back to attempt to reach the “right” level of inflammation your own immune system assesses is needed for appropriate treatment. And so on.

    My sister thinks I pooh pooh herbal treatments. Actually I’m pretty scathing about most chemical interventions… herbal chemical soups or constructed isolated drugs.

    Much more counselling is needed for long term ailment management, and a much lower assumption that drugs can even help significantly, let alone “fix”.

      1. Joe

        True.

        Though humans have been demanding quick fixes from authority figures since waaaaay before there were _faceless_ or _corporate_ profiteers.

  2. I think the whole mind-body connection is hugely under-estimated and misunderstood. I wonder what we could cure/solve/prevent if we had a greater handle on what was *really* going on for people.

  3. Chronic Pain can be very debilitating, even when it isn’t severe. I hate it when they ask me to give my pain a number on a 0-10 scale. They think pain in the lower numbers (often 4 or less) doesn’t need treatment. But when you have a constant 2, 3, or 4…it takes it’s toll. And it will often spike at some point, often during the night when I’m not asked for a number. (ok, little rant there.)

    I have found Limbrel to help somewhat. It is a food grade pharmaceutical supplement that helps reduce inflammation. You have to get a prescription, but it hasn’t caused me any ill side effects. I still have to take Vicodin occasionally. More often than I’d like really, but the Limbrel has really helped a lot.

    (I have chronic hip and pelvic pain, among other conditions.)

    I hope they can stop your pain!!
    wendy

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