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.