Tag Archives: surgery

Link Round-Up.

It’s been a while since I did one of these, but I just found a few links I had saved, so here’s some reading for your Sunday afternoon.

This report on study findings suggesting a potential link between salt and autoimmune disease makes me sad, because I love salt, and I do not love my autoimmune disease. My blood pressure is low and I tend to use salt to ward of extreme dizziness and faint spells. Might be time to find another strategy? I’m curious to see what further research will tell us in terms of dysautonomia and salt though; it seems like the benefits outweigh the costs in the short term at least.

An article discussing a study on the experiences of individuals with chronic pain engaging in online support groups and forums. I thought this highlighted nicely what one can gain from online support, and interestingly, a lot of what patients appreciated from online comrades echoes what is felt to be important (and often lacking) in chronic pain patients’ interactions with their health care providers.

It can be hard to ask for help when we’re incapacitated after surgery or during a particularly bad flare. Even once I’ve articulated that I need help, sometimes I can’t work out what specifically would be helpful, so nothing gets done even where people are willing to assist me. This article on how to help someone who is recovering from medical trauma has some good concrete strategies, and I think would be good to send or summarise to family members or friends asking, “What can I do?”

On the topic of helping, this article gives some advice on how to stop feeling guilty about taking time and energy to look after ourselves. A learned a long time ago, in the midst of some pre-chronic pain depression, how important self-care is for me, and it’s been a valuable lesson since becoming ill. Sometimes I do feel guilty and selfish for taking so much time and energy to make sure I’m healthy and supported. However, when I let these things slip, not only do I suffer, but I am miserable to be around, and have no resources to support anyone else. Affix your own oxygen mask before assisting others!

I’ve followed a range of blogs discussing body love and acceptance and concepts of Health at Every Size. I whole-heartedly endorse them and their exhortations to love your body for what it can do, not what it looks like. At least, I thought that worked for other people. I always struggled, though, with a chronic illness perspective; “How can I love my body for what it does when it doesn’t work properly or do the things I want it to?” I’m getting better and less harsh on myself in this regard, but sometimes it is still a struggle, so I loved this great perspective on loving your body despite malfunctions and betrayals in the form of pain an illness.

I hope you’re having a relaxing weekend 🙂

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 🙂

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.

See-Sawing.

Growing up, I did ballroom dancing for several years. As an adult I’ve always wanted to get back into the Latin side of it (give me a Paso Doble over a foxtrot any day). My partner was wanting to give it a go too, so we bought an online voucher for eight weeks of lessons last year in June, around the time of my back surgery. We knew we had plenty of time to use them after a couple of months for my recovery.

We’ve talked about it intermittently since then, but never made concrete plans, since my recovery didn’t go as expected and I’ve had several facet joint and nerve flares since the surgery rather than the smooth sailing I was expecting. I thought we had until this June, he thought March, so we checked the voucher recently to confirm. Turns out it expired at the start of January and we had missed our chance. I was so upset.

It’s not just the waste of money (it wasn’t that expensive), although I did feel awful since he had paid for it and it was my fault we hadn’t used it. I was disappointed because it was something we had both been looking forward to (we’ll probably still get around it to eventually). But mostly, I was upset because it drove home the fact that, in the last seven months, I haven’t had eight consecutive weeks in which I was pain-free enough to go dancing, despite having spent roughly $7000 out-of-pocket on painful back surgery that was essentially guaranteed to fix me.

I had vastly different expectations for how the last six months were going to go, and it didn’t pan out, and I am disappointed and grieving my loss. That’s life, particularly with chronic illness and pain. On the plus side, I did a shoulder stand for about 2 seconds yesterday, which at any earlier point in the last five years would have been impossible, and I was filled with a massive sense of excitement, pride and achievement. Here’s to the ups and downs!

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.

In the Words of Others.

So there are lots of people smarter than me who also write about chronic illness and pain, and rather than continuing to collect hundreds of bookmarks, I’m going to use semi-regular link round-ups to keep track of them and hopefully share the wisdom (and ridiculousness).

http://www.xojane.co.uk/healthy/my-bad-health-isnt-a-choice

An excellent article, written by someone with the same class of illness as me (connective tissue disease) on why unsolicited health advice based on the assumption that you are ill because you make bad decisions is unhelpful and often unnecessary.

http://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders

Ugh. Uggggghhh. An overview of the proposed changes introduced to the DSM-5 (used by health professionals to classify and diagnose psychiatric disorders) regarding the ridiculously broad and all-inclusive Somatic Symptom Disorder; the symptoms of which describe pretty much every sick person ever, including those with, for example, cancer or diabetes.

http://www.umass.edu/fsap/articles/ill.html

A basic but helpful primer on living with chronic illness.

http://www.spine-health.com/forum/treatment/back-surgery-and-neck-surgery/post-op-must-haves-0

A wonderfully comprehensive list of what to do and take before surgery and what to have handy afterwards; geared towards spinal surgery but useful in general. Also, note that some of the products are American (a ‘johnny’ is an open-backed hospital robe, if anyone was wondering). A lot of products like ‘grabby sticks’ (my term), shower and toilet chairs can be hired short term from chemists, hospitals, or Medihire. I wish I had seen this before my back surgery, as there are some great ideas (towel on bed = genius) but I am bookmarking it for future use.

https://www.facebook.com/may12th.awareness/posts/10151168199522161

Some thoughts on invisible illness and the ubiquitous “But you don’t look sick” (to which my internal reply is usually, “Well, you don’t look like an insensitive ass, but here we are”).

http://www.redcross.org/prepare/location/home-family/disabilities

A link to a Preparing for Disasters kit by the Red Cross for people with disabilities and illness. I live directly next to a frequent bushfire area, and we are currently experiencing a pretty massive heatwave, so bushfire preparedness is on my mind. People with mobility issues need a solid plan in place before something happens; if I’m having a day where it takes me ten minutes to get from my bedroom to the front door, I need to be on alert for emergencies to get myself out in time. I also need to know that someone else can grab my cat to bring her out if I’m not able to carry her.