Tag Archives: choices

A Chronic Pain Primer – Part Two.

So you’ve got chronic pain. Now what? How do you go about getting your life back?

Treatment is possible. Its quality varies widely, unfortunately, but there are a lot of things that have been shown to be helpful, and a lot of other things which generally aren’t. Systematic reviews and meta-analyses of randomised controlled trials are generally the best place to start looking for evidence-based treatment, and there are a few available now that give us an idea of what will be helpful for most people.

Keep in mind though that, as always, research identifies what is helpful for the majority of people or the average person. There are outliers (people who don’t respond to treatments in the typical way) and you might be one of them. Individual differences are important. Use research recommendations regarding effectiveness as your starting point, to help you identify what will likely be the best investment of your resources. But, if you’ve exhausted all the best options and want to try second-best, or if you’re already doing something that doesn’t have great research support but is helpful for you, and is not causing you harm, which includes undue financial burden, stick with it. Do what works for you – but always check with your treating physician/s to make sure a specific treatment option is appropriate for you.

The best recommended course for pain management once it becomes chronic is multidisciplinary, intensive treatment involving a biopsychosocial approach and functional restoration. What does that all mean? A biopsychosocial approach to pain management essentially just requires that any treatment addresses physical, psychological, and social aspects of pain, because these are involved in every pain experience. All chronic pain management should incorporate this perspective (it’s been supported for forty years now), but not all of it does.

Physical aspects may be issues with tissue damage, or central sensitisation (your body’s alarm system continues going off in the absence of or disproportionately to damage).

Psychological aspects do not mean you are crazy if you have chronic pain. Some medical professionals take this stance, and they are ill-informed (and not doing their job properly). Everything we experience through any of our senses is interpreted by our brain, and thus influenced by our beliefs, thoughts, expectations, and previous experiences. Chronic pain is no different.

Social aspects can exacerbate or maintain pain. Things like loss of employment lead to financial difficulties, which limit treatment options and tend to be associated with less healthy lifestyle and dietary choices, and stress, which increases your body’s pain response. Social support and relationships are hugely important, as supportive relationships can protect against and reduce pain and distress. Interactions with health professionals also count as social aspects of pain, and I’m sure a lot of my fellow pain patients can agree that the health system can be a pain in itself!

Just as you need a doctor (and maybe a physiotherapist or exercise physiologist) to address physiological issues, you need someone in your team to help with the psychological and social side of pain to effectively manage it. Coping with chronic pain is hard! Help navigating it can make your life easier, even when the pain can’t be cured. Your GP (and maybe your pain specialist) won’t necessarily have the time, expertise, or inclination to help you with psychological or social issues. This is why multidisciplinary care is important – it’s recommended that individuals with chronic pain see at least a GP, psychologist, and physiotherapist, and if you have access to them, social workers and occupational therapists can be hugely helpful too.

Multidisciplinary pain clinics or centres tend to be the best way to get integrated care from several practitioners, but they vary in geographic and financial availability, and they often have long waiting lists. If you are seeing individual practitioners, it will likely be up to you to make sure they’re talking to each other. Keeping notes at appointments and asking that follow-up letters be given to you or sent to the other people managing your care can help keep everyone on the same page.

Intensive treatment means what you would expect – this is not an overnight fix. A lot of programs range from 6 – 10 weeks or so, so expect to invest a couple of months. As a caveat, not all health professionals are created equal, and just because you have a pain management team doesn’t mean they will be perfect for you. Health professionals are flawed human beings! Advocate for yourself if something goes wrong and find a new professional if necessary and possible.

Functional restoration means that your chronic pain management program should be aiming to help you get back function even where pain is still present. Bed rest and eternal avoidance of painful activities are not a treatment for chronic pain. They will lead to deterioration and further loss of function over time. If you have identified physical damage or abnormalities and your doctor has recommended avoiding a specific activity then listen, obviously. Since my back surgery, I am forbidden from skydiving, bungee jumping, contact sports, and the elliptical machine at the gym – all things I can live with 🙂 But around those restrictions, I am as active as possible, and have ridden horses, gone caving, and at least attempted everything else I used to or need to do. I take more frequent breaks while sitting, but I still sit down.

A physiotherapist is usually in charge of functional restoration. As a side note, I found the physio who worked with my surgeon’s patients post-surgery was far, far more knowledgeable than the other two I had seen previously. She was the first one to come out and say, “You will not re-injure yourself doing normal daily activities. You can’t stay in bed forever waiting for this to go away. You need to get strong and get on with your life.” Her approach was different and frankly kind of shocking to me at that point, but having reviewed so much research literature since seeing her, I now realise she was completely on the ball with the best-supported approach.

I’ll be compiling a Part Three, which will go over the evidence for some specific (conventional and alternative) treatments, beyond psychological and physiotherapy-with-functional-restoration. If there’s anything specific you’d like me to address, let me know! Let me use my university journal access for good 🙂 Do you have any questions about what I’ve covered? Do you disagree with this conceptualisation of and approach to chronic pain management?

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A Chronic Pain Primer – Part One.

My radio silence for the last little while has been due to finishing my lit review on chronic pain management by health care professionals. It’s interesting stuff (to me, because I am a nerd), but it surprised me constantly how much there was in the literature that was taken for granted as the best way to do things, that I had never heard before. I’ve been a pain patient for nearly five years! Why hadn’t anybody told me this before?!

I wanted to share some of the big, important stuff in case anybody else didn’t know it too, and doesn’t have the luxury of journal access via their educational institutions.

The widely accepted definition of pain is from the International Association for the Study of Pain; “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”

There are a couple of important parts to this. Here’s the first one:

Pain does not mean something in your body is being or has been damaged. It feels like it, which sucks horribly. But pain in and of itself is not harmful. If you have new pain, get it checked out, thoroughly. But if you’ve been scanned and tested and your doctor had assured you there is nothing physically wrong, it’s okay to believe it. It’s okay to move your body without fear that further damage will occur.

This does not mean your pain is not real and valid. The pain might be an ongoing signal from an old injury that’s healed, or a disproportionate response to a minor injury, or occurring in the absence of an injury. The definition of pain means that pain is whatever the person feeling it says it is. End of story. So even if medical professionals can’t find a concrete physical cause for your pain, it does not mean that you are imagining it. More importantly, it does not mean it cannot be treated.

The bad news that nobody told me? It might not go away. It’s difficult to fix something if you don’t know what it is. Even where a specific physical cause for pain is identified, as with a damaged disc, and surgery is undergone to fix it, the pain may persist. Because your brain is blessed with the very cool and adaptive ability of neuroplasticity, it learns and changes. Once it gets used to feeling pain, it gets really efficient at feeling pain. It can amplify small amounts of pain or just keep re-sending the same ‘OUCH!’ messages once the problem that prompted them has stopped. For some people, this means that once chronic pain has developed and gotten really entrenched, it can be incredibly difficult to re-program and get things back to the way they used to be. So that’s the hard bit; there may not be a cure for your pain.

Stay with me though, because there’s good news. When the cause of pain cannot be cured, treatment can allow the reduction of pain, the reduction of suffering (that’s the emotional crappiness and distress that comes with the physical sensation), functional restoration (getting your body to be able to manage doing things you used to be able to do), and improved quality of life. And what it boils down to is that pain which has the disability and distress stripped away from it is manageable, even if you don’t ever know where it came from.

It’s not peachy-wonderful, because it’s pain, and it will always be a noxious stimulus. But if you can move and sit and exercise and go dancing and pick up your kids for a cuddle, and if pain is irritating but doesn’t cause you to become depressed and anxious and feel like the world is ending, and you can work and drive and have sex and pay your bills and get by without medication if that’s important to you, then you can have your life.

So, that’s the key. Finding ways to work with it. Getting to do what is important to you and be happy and fulfilled and well in spite of pain. I’m not saying it is easy, I’m saying it is worth it. Because living with pain can suck, but having pain and not living your life is the cause of way more suffering and heartache.

That’s easier said than done, you’re thinking. Pain hurts. It is by definition unpleasant. Well, yes. But a lot of things are unpleasant, and people manage to live good lives in spite of them. So the important thing is to get treatment that enables you to reduce the unpleasantness of the pain as much as possible. And I’ll talk about that in Part Two.

Let me know – are you sitting there saying, well, duh, or do you disagree? Or do you tentatively agree but haven’t been able to make it work for you yet? I agree with this whole-heartedly, and living well despite pain is my over-arching goal, but that does not mean I am a happy ray of sunshine every day, so I’m still somewhere in the middle too 🙂

Silver Linings and Small Victories.

This week:

I am grateful to be feeling better mentally. Less brain fog, and less down in the dumps.

I am grateful for plentiful and freely given cuddles and kisses and love and affection.

I am grateful for choice.

I am grateful for advocacy.

I an grateful for passion to right wrongs and the potential for change.

I am grateful for knowledge and insight and lived experience and expertise.

I am grateful for ease and grace.

I am grateful for radiant, glorious sunsets and the beautiful, healing, natural surrounds in which I find myself.

I am grateful for treats and spoiling myself; it happens rarely so I appreciate it all the more when it does!

I am grateful for progress. I have a couple of jobs I want to apply for, and have been stressing out massively over a lack of references (given my illness-related employment gap and that most of my study has been external) as well as anxiety over explaining my health issues in terms of my employment history and physical limitations. Then it hit me; I’m feeling well and able-bodied enough to be seriously considering working a couple of days a week. That’s huge, and a cause for celebration, not stress. Likely nothing will come of the applications, but I feel like submitting them will be a milestone nonetheless.

What are you feeling grateful for this week?

Silver Linings and Small Victories.

Another hard week, but heading in a better direction. So this week:

I am grateful for the discovery of new movies and songs that move me (sometimes literally, to dancing in my kitchen).

I am grateful for pain flares, because for all my catastrophising they are not, actually, the end of the world. I am grateful that I can and do manage them, and I am grateful that they pass.

I am grateful for the passing of the storm.

I am grateful for recovery after setbacks.

I am grateful for burgeoning wisdom.

I am grateful for improved coping skills.

I am grateful for chances to see how far I’ve come.

I am grateful for most of my lit review being written (although if I was suddenly gifted with the ability to write more succinctly, I would be grateful for that too!).

I am grateful for first cuddles with my nephew and the fact that he enjoyed them! I’m always terrified babies will bawl as soon as I hold them. I am also grateful for the smell of a baby’s head and teeny fingernails and podgy elbows and hope.

Thought for the Day.

One of my favourite things to do used to be going out to this awesome little Pad on Thursday nights with my friends and dancing the night away. I haven’t been in months now – I blamed mostly giving up drinking, poverty, and being busy. Actually, I’m pretty sure I haven’t been since my back surgery last July… hmm.

But it’s a public holiday tomorrow, and my friends are going, and I agreed happily. And I’ve missed it, and I’m glad to be going. But at the same time, as the hours have passed today, I’ve been getting more and more anxious and felt panic tightening my chest.

What if I look awful, because I’m eczema-blotchy and purple-legged and my bald spot is showing? What if I can’t do it without my old, eight-times-what-I-currently-take levels of opiates? What if I’m hobbling and people look at me weird, or I look strange dancing because I’m in pain, or I’m just awkward and a fun-spoiler because it hurts?

So, it appears I may have had some serious fear-avoidance happening without realising it. But tonight I’m determined. What if the worst happens? Well, people will think I’m odd (won’t be the first time), my friends will think I seem grumpy but forgive me because they love me, and I’ll come home early but hopefully still feeling triumphant I gave it a go.

So send good, strong-backed vibes my way and wish me luck! I’m feeling the fear and doing it anyway.

Chronic Coupledom.

http://www.xojane.co.uk/sex/on-dating-with-a-disability

As I’m both in a long-term relationship, and someone with a predominantly invisible illness/disability, this article raised some interesting issues I hadn’t previously considered regarding being approached by men as a woman with a visible disability. It got me thinking about my own illness-specific issues around dating and romantic relationships, and I wanted to share my own experience.

I’ve only begun one new relationship (my current partner) since becoming sick, and it wasn’t an issue then since we had been friends for a year before we got together (he knew of the existence of my spinal issues if not their severity), but my main concern in dating would be when to disclose an invisible illness to a new partner.

I certainly had ‘the talk’ with him early on – as in, you don’t know how bad this gets and if you want to back out now I won’t think less of you – and still have periodic breakdowns where, in my weaker moments, I try to get him to leave me because I worry about him being stuck as my carer for the rest of my life. I haven’t managed to discourage him so far, but I still get incredibly anxious that he doesn’t know what he’s in for, down the line; as my body deteriorates further, as money is always tight because I can’t work full-time and my medical costs are high, as having children is complicated (or maybe impossible), as I snap at him when I am exhausted and in pain and out of patience, as I get sicker and need more humiliating assistance that you don’t want from a man who sees you as sexy and desirable. As I die a few decades before him and he is left alone. As the stress of being a partner and a carer makes our relationship strained and makes him resent me for needing help, and me resent him for seeing my weakness.

Love is always terrifying. There is a vulnerability inherent in giving someone the capacity to destroy you. It seems so much more complicated now, though, with the added stresses and strains of illness, particularly at a young age where I feel like things should be easy, and we should be getting our family established and secure. Our coupled-up friends have their own stressors, obviously, but they don’t seem to have that looming spectre of future complications shadowing their relationships. Maybe it’s just in sharper focus for us, because we know the form it is likely to take, while for others, the shadow – the cancer or infidelity or infertility or death of a family member or job loss or a thousand other stressors and traumas – will be a surprise.

Maybe because we know it will be difficult, because we are prepared and braced for the struggle, we will deal with the strain better. Since we know our future together will be difficult, we bond all the tighter and can put conscious work into strengthening our resilience and our relationship, perhaps in a way that other couples our age don’t consider until they are in the middle of a challenge.

I hope so. I hope we get through it, that we’re one of the couples who manages to survive chronic illness and be made stronger by it. Whatever happens, I am so glad for this time and this support, and the patience, love, and strength of a man who can and will carry me to the bathroom or the ambulance if I need him to, and never make me feel less for having to ask 🙂

Motivational Conflict and Pain Avoidance.

http://www.bodyinmind.org/a-new-perspective-on-avoidance-behavior-research/

I recently read some research on avoidance of behaviours which cause pain, and the effects of conflicting goals on that avoidance. The gist was that people with pain will engage in behaviours that they know will cause pain if there is motivation to do so because the behaviour will fulfil a goal that is important to them. There was also evidence that the brain helps override the pain avoidance by dulling pain signals, thus facilitating the achievement of the goal.

I found this kind of irritatingly simplistic. Of course people with chronic pain sometimes override their inclinations to avoid pain so that they can do something that is important to them. I’ve done this recently; on a bad back day, I was giving my favourite six-month-old boy a cuddle while walking around. It was uncomfortable but manageable. When my discomfort increased, I went to lay him down on the couch next to his mum, which involved bending over with a few kilograms in my arms; usually a big no-no for me, but I hadn’t really thought it through. Halfway down, my back seized and I was suddenly in intense pain.

My choice was to drop the baby and right myself, or continue in the movement causing me pain. I did not drop the baby (thank goodness!) because the goal of keeping him safe was more important to me than the goal of making the pain subside. In the moment, the decision to not avoid the pain was easy. The aftermath of that movement was five days largely bed-ridden and in agony. I would still make the same decision again.

I find this research, and the line of thinking it implies (that if it is important enough to you, you’ll do [painful thing]), problematic because it omits the consequences from the equation. When medical staff or allied health professionals see chronic pain patients, they see our present pain but not the aftermath of our actions. When I visit a physiotherapist and she asks me to bend in a certain way, the movement may not cause unbearable pain in the moment, but it may mean a week spent in bed because I pushed beyond what was comfortable. The next time I see her, she will say, “I know you can do it, I saw you do it before”, but she isn’t the one helping me get to the toilet for a week in between appointments.

To me, the equation is not:

If [importance of goal] is larger than [immediate pain of action to fulfil goal], then complete action.

It is something more complicated:

If [importance of goal requiring action] is larger than [Expected intensity + duration of pain] x [fear of that pain and consequent disability], then complete action.

It also makes me wonder where novelty comes into it. When [expected intensity + duration of pain] is novel and therefore unknown (such as when engaging in a new or unfamiliar activity), is an individual more or less likely to act? Will that vary by importance?

Personally, when the goal is more important and the potential pain is unknown, I think I am more likely to act than when a goal is important but the potential pain is known (because I can hope that the pain will not be too bad, and I know the action is important). When the goal is less important and the potential pain is unknown, I am less likely to act than when the goal is unimportant and the potential pain is known (because I am not willing to risk large potential pain and disability for a relatively unimportant goal).

How do others deal with these decisions? How do you decide when to override your pain-avoidance behaviours? And does anybody else sometimes just say, “Screw it, this isn’t important and my potential pain is likely to be huge, but I’m going out dancing anyway because I’m tired of being sick” – or is that just me? 🙂