The trickiness of chronic pain is its chronic-ness. It’s ongoing, unending. Auto-correct suggested chronic mess for chronic-ness, that seems sadly apt for how I feel and sometimes how I feel I am seen.
Researchers use the words chronic and persistent to describe pain, fatigue, nausea, itch, ulcers, wounds, stress, sadness, fear… The whole Pandora’s box of ills that humans can experience that carry on beyond the “normal” or “expected” healing time.
Chronic and persistent are neutral words that convey the time aspect but not the emotionality of the experience. Not the draining of you and the disruption to your place in your world that happens when the pain doesn’t ease.
Our society isn’t set up for those of us with chronic illnesses. It doesn’t know what to do with us.
We may not be productive in the usual ways the social systems we live in expect. We may need support or accommodations for elements of our daily lives. There may be no label for our constellation of symptoms. No pill or surgical intervention to right us.
I’ve had people ask “what’s wrong with you now?”. I violate the expected course of illness.
By violating the expected, I sometimes feel like I hover on the edges of life. Statements like “what’s wrong with you now” confirms my feelings that I am the b word.
With no medical ease to my pain, I turn to non medical solutions. Here is a list of all the Western medical and alternative remedies/approaches I can remember trying to help manage my different pains, in no particular order:
Other anti-depressants/drugs originally developed as antidepressants
Some of these made no difference, some had awful side effects, some helped but the relief didn’t last, and some help me manage my pain. I’m sure I’ve forgotten many things I’ve tried. Now I use a combination of approaches that are a mix of Western medicines, seeing professionals, and things I can do myself. I’ll talk about what I do in an ongoing fashion in another pinch – managing pain is a full time job in itself!
I said when I started this blog that I wouldn’t put pressure on myself if I didn’t write regularly. All in all, I’d give myself a B+. Very good performance, but not excellent1. I haven’t posted since August and have felt only a little guilty about it. I often feel guilty when I don’t do things because of my pain (the b-word arises) and I really didn’t want Pinches to be associated with guilt.
I am still here and still want to write about my pain and pain science. I need to practice being kind to myself and work on Pinches when I have the mental capacity to – it shouldn’t be a chore. My pain makes it hard for me to think. Between life and work since August, there just hasn’t been any brain space for Pinches.
It’s hard to describe what it feels like when I can’t think properly. I find it very hard to talk, to find the right words. Once in exasperation when trying to talk, I said “my brain closet is full“. This is the closest I can get to conveying the feeling that there is absolutely nothing left for thinking, for making decisions.
The last week has been hard, pain- and fatigue-wise. I’m very lucky that I’m in a work position that is flexible and have my awesome, supportive people around me. I can work at home if I need to. I can take a nap if I need to and pick up work again later in the day. The last two days have been better…I’ve managed to do some crosswords and am writing this pinch!
Alongside the pain, life has been really, really good. I’ve got some research and amplifying lived experience news that I’m excited to share with you too.
 I’ve been doing a lot of marking the last few weeks. I’m assigning grades to everything!
The hardest thing about my ongoing pain is the recurring thought that I am a burden. It’s taken me over a month to write this post. That’s how hard it is to even think about, even now when most of the time I don’t have thoughts that I am a burden.
When my pain is at its worst and I can’t do anything else except lay in bed, that’s when I feel like a burden. When I can’t spend time with my family or friends, when I can’t cook or clean or do washing, when I can’t work; I start to think about how useless I am, how I don’t help with anything or contribute, that I am a burden.
Feeling like a burden is overwhelming, I’d do anything not to feel it. So, I used to try to hide my pain, to push it away even from myself. Never ask for help until I was too unwell to do anything for myself.
The people who love me have never made me feel like a burden. The number of times I have actually been made to feel like a burden are few. So why do I get these thoughts?
For me, I think partly my character and partly society drive this recurring thought.
Character wise, I’m a perfectionist. I put a lot of pressure on myself. When I was first in the pain management programme, I was resistant to the suggestion that I could relax the demands I make of myself. My healthcare team gave me journal articles to read about perfectionism and chronic pain to help me see the link between my expectations and my pain (they learned an effective way to get through to me pretty quickly!).
Society wise, we are a ‘productive’ culture. You are seen to be succeeding when you contribute to society by working, by looking after yourself and your family. There is a stigma around not being a productive part of society.
I’m going to refer back to an image from my last blog showing my pain in a biopsychosocial model (described fully in Sad, not happy):
Another aspect in the widest circle are cultural norms and stigma regarding how we see those who need support in our society. I see these norms and stigma every day in my life, for example in the limited support we give to those who cannot work for various reasons (even in New Zealand with a history of relatively good social support), the attitudes towards people who need support, even the language we use about the cost of chronic illness1 and metaphors in our day-to-day language (e.g., “pull your weight). All this information reinforces the perfectionist in myself and on bad pain days I can feel like a burden again.
These days, when I have good self-management techniques, the thought never lasts for long, but can you imagine how crushing it is to feel even for a short period of time?
I know I’m not the only person with chronic illness to feel this way2. It is important to recognise the link between thoughts and pain, as in the biopsychosocial model, because these thoughts don’t exist apart from the pain; they are associated with increased pain.
The point of sharing that I sometimes feel like a burden, is to make this aspect of chronic pain a little more visible.
You see, I’m not a burden. Even when I can’t help out, or need to cancel plans, or need time off from work, I’m still a valued person who brings a lot of joy to my family and friends. I just need support sometimes. If more people understood what life was like for those with chronic pain (and illness more widely), that we are just ordinary people who need support. Not burdens on our family and friends, or society. Then this recognition might begin to reduce the stigma in society and the pressure on the thinker of the b word.
Auckland University of Technology (AUT) is currently running a project called “Stigma: How Does it Affect People with Chronic Pain?”. If you experience chronic pain, please consider participating. It is an online survey and takes approximately 30 minutes. I’m going to participate now: https://aut.au1.qualtrics.com/jfe/form/SV_3Ia4KppeaE5LHN3
Kowal, J., Wilson, K. G., McWilliams, L. A., Péloquin, K., & Duong, D. (2012). Self-perceived burden in chronic pain: Relevance, prevalence, and predictors. Pain, 153, 1735–1741. https://doi.org/10.1016/j.pain.2012.05.009
Question from health professional: “How do you feel?”
Answer from me: “Sad… not happy”.
Pain is multidimensional. The experience of pain is not generated from physiological processes alone. Considering the multidimensionality of pain is especially important for both 1) understanding why chronic pain has such a large impact on peoples’ lives, and 2) for developing effective pain management for each person.
There are many models of pain that try to capture the varied dimensions of pain. In biopsychosocial models (1), there are sensory, affective, cognitive, and behavioural dimensions1. There are many variants of biopsychosocial models so I’ll outline the general way these dimensions are described.
The sensory dimension is the “pain” part of the pain experience. This includes physiological processes and systems, such as activation of nociceptors (free nerve endings in our periphery which are sensitive to heat and cold, pressure, or chemicals).
The cognitive aspect is the thoughts or “cognitions” about pain that a person has. For example, not being able to stop thinking about pain.
The behavioural dimension is the action or inactions associated with pain. For example, avoiding certain movements.
The affective dimension is the emotional feelings a person with chronic pain may have about their pain. For example, feeling scared that the pain might never go away.
These dimensions do not occur in a vacuum. A person lives in a social environment: family, friends, work, communities, countries. These social environments affect the immediate sensory, cognitive, behavioural and affective dimensions too.
I’m going to give a personal example to illustrate the importance of considering the affective dimension in pain management.
In 2012 I was assessed by a group of health professionals at a Pain Management Clinic. I was in the midst of the worst flare up of my fibromyalgia that I had experienced (and is still the worst I have had). When I went to the Pain Management Clinic, I did not know a lot about pain or pain management.
One of the concerns identified in this assessment was that I could not name my emotions. When asked how I felt, I could only reply “sad” and “not happy”, which to any person seeing me would have seemed like a huge understatement.
At this point in time, my pain was out of control, I was taking large amounts of codeine, taking other medicines to manage the side effects of taking so much codeine, and the one way I knew how to cope – pushing my pain aside until later – had stopped working. I was deeply depressed. I had resigned from my job and was basically spending most of my day in bed. And all I could say, was “sad” and “not happy”.
When I was then asked just to name emotions, I couldn’t even write a list. This was quite shocking to me. My honours and masters research in psychology had been on emotional language. I had spent hours thinking, reading, and writing about emotions. Yet, I could not list emotions. There are quite a lot of emotional feelings or states!
Happy, sad, angry, fearful, surprise, disgust are basic emotions, and then there are all their nuances; delighted, distraught, steaming, terrified, shocked, revolted to name a few. And all I could say, was “sad” and “not happy”.
Alexythimia describes this inability to name emotions you are experiencing or that are being experienced by others.
At the end of this first visit to the Pain Management Clinic, I had learned that it wasn’t just the sensory dimension of pain that was stopping me from managing my pain and living my life. All dimensions of my pain needed to be addressed.
It is easier to change some dimensions than others. Thoughts and behaviours are the easiest (though by no means easy!). In the next pinch, I’m going to give a personal example to illustrate the importance of considering the cognitive dimension in pain management.
 Some biopsychosocial models have three dimensions.
Asmundsen, G. J. G. & Wright, K. D. (2012). Biopsychosocial approaches to pain. In T. Hadjistavropoulos & K. D. Craig (Eds.), Pain: Psychological Approaches (pp. 35–57). New York: Psychology Press.
I am now open about my pain with my family, friends, colleagues and even people I’ve just met. This is not how I was for most of the time I’ve had chronic pain.
For a long time the way I handled my pain was to tell myself that I couldn’t process what was happening now, I would “deal with it later”.
I deliberately haven’t used the word “managed” as looking back, I don’t think I was managing my pain at all.
I imagined my pain was a ball that I could isolate and put aside, out of sight, to be “dealt with later”. I did this for years. I started “dealing” with my pain this way in school when I had pain from my jaw, knee, and hands.
I continued this in university and in the rest of my daily life.
It was exhausting and not very effective.
Shutting myself off from pain started to extend to my emotions too (the next pinch).
Hiding my pain meant asking for help was hard. I hated asking for help for two reasons. It meant feeling like a burden (the pinch after next) and it meant bringing the pain into sight and feeling it.
This combination was often overwhelming. As I never brought the pain up to myself or to others, I was alone with the thoughts of feeling like a burden and terrified of how bad the pain could get.
I’m going to skip ahead now to end this pinch on what opening myself up to my pain has meant.
I realise now that although my pain is not who I am, it has shaped who I am. I like who I am so that’s not a bad thing.
I have found that the more open I am about how I feel about my pain, the more open I can be with other people; and the deeper relationships I have.
Everyone has something difficult in their lives, often more than one thing.
It took me a long time to stop hiding my pain. I still by default don’t want to talk about how I’m feeling when the pain is bad.
When I do talk about my pain, I feel a relief. It takes a lot of energy to hide my pain and I’m not hiding what shapes me from people who care about me.
I drafted this pinch on my phone one evening. I’ve left the first half as I wrote it in the moment.
Pain in the moment
It is 6.20pm on a Tuesday evening and I’m struggling.
My pain has flared up over the last week. I’m stuck in a loop where I’m sore so I’m not sleeping well, but not sleeping well makes the pain worse, which means I’m sore so I’m not sleeping… aargh sums up the frustration.
I’m in bed already. I’m trying to focus on a thought which was key to a shift in how I managed my pain.
At the Pain Management Programme, I was introduced to this thought: it is not my job to deal with any future pain, it is only my job to deal with the pain in this moment.
I used to panic when I felt this level of pain. I would spiral into thinking: how am I going to cope if this never eases? How will I have any life? How will I work?
All that worry took a lot of energy. It certainly didn’t help me manage the pain!
Dealing with the pain in this moment is a type of mindfulness.
“Mindfulness” doesn’t only refer to one thing. There are lot of aspects to mindfulness and many ways to be mindful. People practice mindfulness for many reasons. One reason is to help manage pain.
Researchers measure whether mindfulness practice is effective for pain management by asking about changes in pain or other quality of life factors. In some studies, some types of mindfulness seem to improve some measured outcomes1,2. There’s still a lot we don’t understand about mindfulness and pain management.
As with all strategies for pain management, it is about finding what works for you. If mindfulness doesn’t work for you, don’t do it. If some parts work for you, just do those.
Being aware of my pain and trying to let it, and the emotions and thoughts that accompany it, go by without judgement, is really not for me! I tried for a few months but I find this type of practice makes me more distressed.
Focussing on my breathing helps me to lose some of the tension associated with my pain.
Reminding myself that I am here in this moment and I only need to manage the pain is this moment, not in a minute, or in an hour, a day, a week, a month or a year helps a lot.
So, I’m here dealing with the pain only in this moment.
I can see that I’m going to write many pinches about fibromyalgia as this is my pain condition. I’ve labelled this pinch “fibromyalgia (1)” as I don’t know how high the numbers will go.
In this pinch, I’ll give a glimpse into what led to the start of my pain management journey – from when I first began experiencing pain that persisted to when I was diagnosed with fibromyalgia.
Getting the diagnosis, the syndrome itself, and my experience day-to-day of having fibromyalgia is complicated. Neither the diagnostic process, the syndrome, or the day-to-day experience of having fibromyalgia is well understood.
Growing up, I had several chronic pain experiences: temporomandibular joint (TMJ) disorder starting at 10 years old, with many years of uncomfortable dental treatment (a series of plates to expand, then stabilise, my jaw); repeated kneecap (patella) dislocations starting at 11 years old, culminating in surgery when I was 16; and carpal tunnel syndrome in both hands starting at around 15 years old (surgery when I was 17).
These were painful experiences, and chronic in that the pain persisted for more than three months. I still have residual effects, including pain, in my jaw, knee, and wrists. I didn’t have widespread pain though, pain beyond the specific areas that had healed tissue damage, until I was 18 years old, in 2005.
I started feeling sore all over, all of the time. This was new. The pain was confusing. The deep achy and burning sensations moved around – I wasn’t sore in the same place all of the time. The symptoms that came with the widespread pain were new too – debilitating headaches, general feeling of being unwell (like the beginnings of a virus), low grade fevers (around 38 degrees Celsius), and brain fog.
Brain fog is a colloquial term for cognitive dysfunction in attention, memory and decision making (1, 2). Fibro fog is brain fog specific to fibromyalgia.
“Brain fog” captures the feeling of your thoughts being fuzzy. It can be incredibly hard to think. For me, when I have brain fog, I struggle to find the words I want to say. My usually quick thinking, questioning brain seems to grind to a halt. It’s an effortful struggle to follow a plot in a book, or even a conversation.
I also experienced hyperalgesia and allydonia.
I didn’t know the terms for these experiences but they were signs that something had changed in how my brain and body were processing, and interpreting, signals of nociception (of danger to body-tissue: heat and cold, pressure, and chemicals1) and touch.
This diagram below shows the relationship between how intense a stimulus is (e.g., pressure or heat) and the reported level of pain (here on a scale from 1 to 10). The diagram shows a change in sensation for the same level of stimulation as a result of injury.
Hyperalgesia describes the phenomenon where something that usually hurts a little, hurts a lot. Bumping into a doorway hurts a little (well depending on how hard you do it!), but for me it can feel like I imagine it would if someone took a hammer to my arm.
Allydonia describes the phenomenon where something that doesn’t usually hurt, hurts a lot. Your clothes sitting against your skin is usually unnoticeable, but for me it can be not just noticeable but painful.
Over more than a year, I went with my Mum to my GP, to various specialists, and finally to a Rheumatologist to try to find an answer to the scary, strange, unpredictable, collection of symptoms I was experiencing.
A Rheumatologist is a medical professional specialised in understanding and treatment of autoimmune (impaired inflammation response) and musculoskeletal conditions such as the varieties of arthritis, lupus, and fibromyalgia.
Along the way I had a lot of tests! I’d had some earlier when I had carpal tunnel syndrome. It is unusual for someone so young to show evidence of nerve damage in nerve conduction tests – so I’d had an MRI to rule out Multiple Sclerosis (MS).
To sum up the tests, thankfully there seemed to be nothing physiologically wrong with me. Yet something was evidentially wrong with the amount of pain I was experiencing.
The Rheumatologist diagnosed fibromyalgia by 1) ruling out MS, lupus, forms of arthritis, and many other autoimmune and musculoskeletal conditions; and by) testing for tender points.
I didn’t have any signs of any other conditions, and I was sore when touched in many of the 18 tender points. In my final appointment, my Rheumatologist told me I had fibromyalgia and sent me away with a leaflet about it.
The leaflet was produced by Arthritis New Zealand and was an older version of this leaflet2.
So, my diagnosis process ended with me being sent away with a leaflet. My pain management journey started there and is an ongoing process.
Spoiler alert, there were some very hard times ahead. Especially in 2012. To be continued in fibromyalgia (2)….
 Nociception will have its own pinch at some point.
 Arthritis New Zealand are a wonderful organisation. They support people to manage their arthritis and pain, and raise awareness about different forms of arthritis. I have attended informative sessions about fibromyalgia and pain management run by their educators. Their Facebook groups connect me to other people with pain.
One thing I starting noticing once I had chronic pain was the images used to depict pain. I noticed what images were commonly used to show pain, and what images weren’t.
Open a new tab now and Google “pain”, look at the images tab. What do you see? Do the same for “chronic pain“.
You’ll see images of the nervous system and of people (both cartoons and real) curled up, tensed up, screaming, crying.
I’m not saying these images don’t depict pain. They do and the photographers capture this pain, physical and emotional, in a beautifully raw way.
However, most of the images are of people alone. Some of the images have few clothes on.
Yes, pain is a personal experience. Yes, pain is an unpleasant experience. Yes, pain is a vulnerable experience.
You don’t often see images of people in pain with other people though. And if you do it is usually an unidentified hand, or in a healthcare setting.
You don’t often see images of people in pain doing activities or out and about.
I believe this depiction is one factor that contributes to the invisibility of chronic pain. Real people with chronic pain don’t look like the people in images of “pain” so they must not have real pain. I don’t look like the people in images of “pain” so I must not have real pain.
I have real pain here:
I’m out and about here. Before this photo was taken I’d been on a walk with my husband and his parents while we were on holiday. I was sore and tired and needed a rest. That’s what we’re doing here. Resting (my husband calls it Hazel-management) before continuing on with the rest of our day. I’m living my life.
I have pain here:
I’m doing my job here. This is me introducing a speaker.
Sometimes I get a bit stubborn and still try to do the things I love when the pain is worse than usual. Then it’s a bit more noticeable that something’s not right.
People can live a full life with chronic pain. I live a full life with chronic pain. My life is different than it would be if I didn’t have chronic pain but not lesser. I don’t think about my pain every hour of the day.
I do often need help. My husband helps me, my parents support me, my friends are there for me. I have flexibility at work. I have had lots of professional healthcare support to develop pain management strategies that work for me. I take medication.
With this support I am able to be me. To do the things that bring me joy – spending time with my people, learning, reading, attending music and science events. With this support I am able to be a good wife, family member, and friend, and to contribute to my fullest ability at my job.
If chronic pain was a little less invisible, then my journey to get to where I am now might have been easier.
I was never interested in knowing more about pain, or about my pain, before this programme.
I was certainly not interested in studying or researching pain! Why on earth would I want to learn more about something that was such a negative being in my life!?
Turns out understanding pain is a powerful tool in your pain management toolkit and that there are a lot of unanswered questions about pain. For my PhD, I tested if an impairment in attention might be one reason that pain makes it so difficult to think. That’s another story for another pinch or more another time.
Pain is produced when your brain detects threat to body tissue. One of the best explanations of pain I’ve seen is this talk by Lorimer Moseley.
In chronic pain, there is either ongoing damage to body tissue, or your threat protection system has become overactive and detects threat when there is none (1, 2, 3).
Many factors go in to the assessment of threat: including your previous experience (as with Lorimer and the pain he experienced from a scratch from a branch in the video), the context of the current situation, even your knowledge of pain (1, 2, 4).
Detection of threat is not under your conscious control, but one thing that is possible to change is how you think about and respond to the pain. I’m not saying this is easy. I’ve been practicing thinking that of my pain as my “overactive threat protection system” for years. It doesn’t always help me, and sometimes I still hate my pain.
The more I practice thinking about my pain this way though, the more I don’t feel overwhelmed by the pain.
Peters, M. L. (2015). Emotional and cognitive influences on pain experience. In D. P. Finn & Leonard, B. E. (Eds.). Pain in Psychiatric Disorders. Modern Trends in Pharmacopsychiatry (Vol. 30, pp. 138–152). Basel: Kager. https://doi.org/10.1159/000435938
I am Hazel. I experience chronic pain. I have conducted research to extend our understanding of chronic pain. I live a full life. Most hours I am in pain. Sometimes I suffer, most of the time I don’t. I am a wife, a daughter, a friend.
Pinches of pain is starting out as a place for me to share my thoughts about my chronic pain, about our scientific understanding of chronic pain, and about how I and other people with chronic pain live in this world.
Some of the pinches will be short, some long. Sometimes they will be released weekly, sometimes irregularly.
I’m also going to share resources I have both found helpful in my pain management and that are consistent with our current understanding of what pain is.
For a long time I found it easier to never talk about my pain, to not share that part of my life. I ended up completely unable to manage my pain. A lot of things happened, that I’ll share in some of my pinches. I learnt that sharing my pain experience didn’t make me weak, it made my relationships richer and managing my pain a hell of a lot easier.
Pinches of pain is the next step in me sharing my pain. I am now comfortable sharing my pain with my family, old friends, new friends, and colleagues. I hope sharing my pain and linking my experiences to the science of pain could be useful to other people experiencing pain and the people supporting them. I hope sharing my life and science will make chronic pain a little less invisible.