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?

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?

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 🙂

Silver Linings and Small Victories.

This week:

I am grateful for reconnecting with old, good friends who understand the challenges of ‘chronic life’.

I am grateful for my body’s unpredictability, since I overdid it badly on Wednesday and was expecting Thursday to be awful, but it wasn’t.

I am grateful for tiny bursts of motivation and the satisfaction of Getting Stuff Done.

I am grateful for the online community of my peers; young women with chronic pain or illness, sharing their experiences and making me feel less alone.

I am grateful for the air conditioning that makes it bearable to lie on a heatpad when it is 40 degrees Celcius.

I am grateful to live in Australia, which, although imperfect, has a vastly better social security and health system than many other parts of the world and is working to improve it through the National Disability Insurance Scheme.

I am grateful to have learned early in life to budget effectively and to live on less, where others would probably struggle.

I am grateful to have the world’s snuggliest cat to keep me company when I’m stuck in bed.

I am grateful to have a father who, despite not really being able to afford it, makes it a priority to pay for my spinal surgeries when I otherwise could not afford them.

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 60^th 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/