Tag Archives: pain research

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?

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 🙂

Fun Facts.

[I want to preface this by saying that I am not currently mentally prepared to engage in a discussion regarding the ethics of inducing pain in animals to advance scientific knowledge. However, given this study has already been done, I think sharing and learning from its findings are a way of making animals’ suffering not be for nothing. As with all things, you are free to respectfully disagree.]

So, we know social factors influence pain experience. And you guys, I just found out mice with pain who are allowed to hang out with their sibling mice experience greater pain relief from narcotics. Adorable. Go hug a mouse. Or your family. (If you have a mouse as a family member, you win at pain relief!)

And if you don’t trust mice, women given electric shocks while holding their spouse’s hand found the pain less unpleasant (as compared to women holding a stranger’s hand, or no hand), as it reduced the perceived threat of the pain. Takeaway lesson for the day: if you can have your family or a loved one present during a painful treatment or intervention, do it!

References:

Coan, J. A., Schaefer, H. S., & Davidson, R. J. (2006). Lending a hand: Social regulation of the neural response to threat. Psychological Science, 17(12), 1032-1039. doi:10.1111/j.1467-9280.2006.01832.x

D’Amato, F. R. (1998). Kin interaction enhances morphine analgesia in male mice. Behavioural Pharmacology, 9(4), 369-373. doi:10.1097/00008877-199807000-00009

Pain Management as a Human Right.

I just came across a quote that resonated so strongly with me that I wanted to share it. For anyone else who has ever been junkie-shamed (as I call it; humiliated and belittled for use of or desire for prescription narcotic pain medication), as I have, or believes, as I do (and as an emerging body of research supports), that adequate pain management is a right of all individuals, regardless of the potential for opiate addiction.

The quote is from Margaret Somerville, a medical ethicist.

“To leave a person in avoidable pain and suffering should be regarded as a serious breach of fundamental human rights [and] can be regarded not only as unethical, but also as negligence … It also should be treated as unprofessional conduct; that is, it should constitute a basis for disciplinary action by the relevant professional licensing body.”

The article citing the quote, for anyone interested in reading further, is: MacDonald, J. E. (2008). Anti-oppressive practices with chronic pain sufferers. Social Work in Health Care, 47(2), 135-156. doi:10.1080/00981380801970285

I hope your pain is adequately managed today.

What Do You Know?

I have a bit of crowd-sourcing to do, just to satisfy my own curiosity, if you’ll indulge me by replying in the comments.

In your understanding, what is the biopsychosocial model of pain management? Have you ever heard of it? Has a health professional used or explained the term to you? What do you think it involves? Whether you’ve heard of it or not, what’s your best guess as to the best way to treat chronic pain? It doesn’t matter if you have no idea, I’d like to hear about that too!

In my recent reading I’ve been seeing a lot that suggests health professionals and patients might have incompatible perspectives on pain, which may be causing some of the communication issues that can arise. I’d be really interested to hear your thoughts, particularly given that I expect all of my readers are patients and also pretty well self-educated via internet resources. And thank you for bearing with me while I read ALL the articles! 🙂

How Far We’ve Come…

I’m flat out doing chronic pain care-related reading for my dissertation in preparation for uni starting back up in a couple of weeks, and hopefully I’ll get around to sharing some of the findings I’ve been reading about here soon, but I wanted to drop in and share something in the meantime.

In an article I was reading, I found reference to another article, which was from 1978 and titled ‘Treating Hateful Patients’. I’m going to let this sink in for a moment; not only did this get written using this terminology, indicating it was common parlance at the time, but it was published in a peer-reviewed, respected, professional journal (which these days generally have very high standards relating to the use of non-discriminatory or emotive language).

So next time you’re cursing an unfeeling or inept medical/health professional (and I’m sure we’ve all met at least one!) take a moment to remember it could be worse; you could be seeking treatment in 1978! 😉

…And for anyone wondering, a) These days they (we!) are generally referred to as ‘difficult’ patients, and b) No, I didn’t track down/read the article, I’ve been reading enough frustrating content in the current literature and I didn’t think I could take it!

Link Round-Up.

http://www.psychologytoday.com/blog/turning-straw-gold/201208/more-what-those-chronic-pain-or-illness-don-t-want-hear-you-say

A crowd-sourced summary of common annoying and ignorant responses to the chronically ill or in pain from others. I’ve had nearly all of these at one time or another and I’m sure a lot of you have too. Print out for insensitive family members and friends!

http://bobisdysautonomia.blogspot.com.au/2013/02/well-at-least-its-not.html

In a similar vein to the previous link, a note on why the response, “At least you don’t have [insert horrible thing]” is not helpful.

http://www.alexandrafranzen.com/2011/03/19/how-to-survive-when-everything-sucks/

Tips for how to get by when life is crappy. This isn’t illness-specific, but most (if not all) of these would be suitable for those times when I’m wallowing in “why me?”, and many could be done from bed if you are having a particularly nasty flare up.

http://fibrofeist.com/2013/02/05/what-i-need-you-to-know-i-do-wonder-why/

I love this series from Fibro Feist, and this piece was really moving for me. I think we all wonder why from time to time, and wonder if there was something we could have done differently to avoid getting sick. For my part, I know my issues had a genetic contribution, but various genes can be activated by environmental factors (the study of which is called epigenetics, if anyone wants to learn more), and I wonder if I could have avoided triggering mine. I’ve been worrying a lot lately about what I can do to prevent activating (if not transmitting) my sub-par genes in my hypothetical future children.

http://sunlightinwinter.wordpress.com/2013/02/05/violins-and-enhanced-sensory-maps-2/

I found this so interesting! I like the idea that all of us individuals with chronic pain are really just very well-practiced and highly skilled at detecting pain – it’s nice to occasionally re-frame what feels like a weakness as a strength. Plus, being hyper-sensitive to stimuli would have an evolutionary advantage; since many of us are too sore/fatigued/immobile/horizontal to run away from or fight off a threat, it helps if we can detect potential threats early!

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? 🙂

Silver Linings and Small Victories.

Being chronically ill or in pain is not, generally speaking, particularly awesome. It isn’t always terrible, but sometimes it is, and people aren’t exactly lining up to be gifted with the eternal joy and enforced co-dependency of being sick for most of their lives.

Also, chronic illness and pain aside, I am not a hugely positive person. I am sarcastic and cynical and live with the mentality that, if I expect the worst, at least I can prepare myself for it, and if it doesn’t go as badly as I’m expecting, I’ll be pleasantly surprised. I have kind of a dark sense of humour. I understand that this type of disposition makes you more prone to depression and a short, nasty, brutish life, but it’s a hard thing to turn around.

I’m probably slightly more complainy and pessimistic on this blog than I am in real life, because I feel like I can vent about the negatives to the faceless internet in a way that I can’t always to the people who love me, care about me, and worry about me. Plus, they get sick of hearing it by virtue of being stuck with me a lot more often than my readers. Having this blog as an outlet for when I am struggling or things aren’t going that well is important, and serves a purpose for me.

However, I don’t want it all to be doom and gloom here. There is research in the positive psychology and resilience realm which indicates that individuals with chronic pain and illness who practice mindful gratitude – taking time to note what is good in their lives and for what they are grateful – have better outcomes.

(Side note: this topic is something I have encountered in my studies, but a quick search turned up these two pieces of related research for anyone interested:

http://greatergood.berkeley.edu/pdfs/GratitudePDFs/6Emmons-BlessingsBurdens.pdf

http://hpq.sagepub.com/content/early/2012/03/12/1359105312439733.full.pdf+html)

I don’t want to pretend it is always (or even ever) easy to be grateful for my illness and pain, but there are things in my life which I am grateful for and proud of, which have come about as a direct result of my spinal problems and autoimmune disease. So, I will be making a concerted effort to, once a week, make note of them here. Sometimes there might be lots, sometimes only one, but this is me making myself accountable for my own mental health in the face of adversity.

This week, I am grateful to have a mother who understands what I am going through.

I am grateful to know how deeply my partner cares for me and wants to help me.

I am grateful to be much better than I used to be at prioritising what is truly important and to have finely honed time management skills.

I am grateful to have access to the internet, which facilitates connection and entertainment when I cannot leave my house, or my bed.

I am grateful to have grown in patience and to have a less judgemental attitude than I used to.

I am grateful to have a significantly increased capacity for empathy for those who are distressed or suffering, which will make me a better psychologist, in addition to making me a better person generally.

What are you grateful for?

Link Round-Up.

http://hyperboleandahalf.blogspot.com.au/2010/02/boyfriend-doesnt-have-ebola-probably.html

At the risk of being hyperbolic about a site called Hyperbole and a Half, this is the most important thing on the internet for individuals with chronic pain. Nope, not the Wikipedia page for your illness, or the website you can use to make doctor’s appointments, but this: A Better Pain Scale. I would have already had this printed on a t-shirt to wear to medical appointments if that wouldn’t require me pointing at my boobs when confronted with the “where are we today” question.

http://www.xojane.com/healthy/my-disease-my-family-and-my-finances

A realistic and practical (while simultaneously depressing) account of the financial impact of degenerative illness, and one family’s measures to deal with it. While the government support and likely the legal issues vary between the US and Australia, it still raises some useful things to think about when preparing for probable long-term disability and unemployment.

http://now.tufts.edu/articles/world-hurt-pain?utm_source=Tufts+Now+-+Faculty+and+Staff&utm_campaign=c675a03828-Tufts_Now_internal_120919&utm_medium=email

An interesting look at the history of pain management in the medical field. Happy 60th anniversary, pain specialisation! The article touches on the mechanisms by which chronic pain perpetuates and is distinct from acute pain. It also relates research findings that for individuals with chronic pain or illness, “blogging relieved personal isolation while providing a renewed sense of purpose”. Win!

http://now.tufts.edu/articles/healing-words

Further information regarding the research mentioned above. I had a project involving use of health blogging as a support for those with chronic illness in mind for a potential Masters project, so I’m excited to see research being done in this area. I think online services are uniquely appropriate and important for individuals with illness, pain, and mobility, who may otherwise be isolated and unable to attend pain management or support services. Also, I really wish I was in the US and could do the Tufts School of Medicine Masters degree in Pain Research Education and Policy. It sounds amazing! Hopefully more universities will begin to offer pain management-related courses in the health professions.

http://www.youtube.com/watch?v=KRFanGInvlc

A video on Ronald Melzack, a psychology professor who was a pioneer in pain research and whose findings are integral to our current understanding of the complex processes involved in the pain experience. The video also gives a good outline of historical and current pain theories, including the gate control theory of pain. Melzack also created the McGill Pain Questionnaire based on his research, which as a pain patient I am very familiar with!

http://www.bodyinmind.org/seeing-a-needle-prick-makes-it-worse/

Empirical support for my mother’s advice to wiggle your toes when you are getting an injection/ having an inept phlebotomist dig around for your cowering veins during a blood draw; by not only avoiding looking at the needle go in, but focusing on another part of your body, your perception of the pain is reduced. My mother also sings ‘So What’ by Pink during particularly painful procedures, but each to his/her own.

Thank you to Sunlight in Winter for pointing me in the direction of a few of these valuable links, and for the further resources available she has collected here:

http://sunlightinwinter.wordpress.com/resources/