I planned to make this post live on Friday. However today, Tuesday 12th May, is Fibromyalgia Awareness Day. The topic seemed appropriate.

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My chronic pain has the diagnosis fibromyalgia.

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 allodynia.

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.

Allodynia 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)….

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[1] Nociception will have its own pinch at some point.

[2] 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.

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1. McCracken, L. M. & Iverson, G. L. (2001). Predicting complaints of impaired cognitive function in patients with chronic pain. Journal of Pain and Symptom Management, 21, 392–396. https://doi.org/10.1016/S0885-3924(01)00267-6
2. Moriarty, O. & Finn, D. P. (2014). Cognition and pain. Current Opinion in Supportive and Palliative Care, 8, 130–136. https://doi.org/10.1097/SPC.0000000000000054

One of the key changes in the way that I think about my pain that resulted in great improvements in how I manage my pain is:

Chronic pain is my brain and body being really, really, really good at protecting me.

I was first introduced to this way of thinking about pain at the Pain Management Programme I attended in 2013.

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.

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1. Moseley, G. L. (2007). Reconceptualising pain according to modern pain science. Physical Therapy Reviews, 12, 169–178. https://doi.org/10.1179/7108331907X223010
2. Moseley, G. L. & Jones, L. (2009). Pain. In S. Kumar (Ed.), Ergonomics for Rehabilitation Professionals (pp. 71–102). Boca Raton: CRC Press.
3. Tabor, A., Keogh, E., & Eccleston, C. (2017). Embodied pain – negotiating the boundaries of possible action. Pain, 158, 1007–1011. https://doi.org/10.1097/j.pain.0000000000000875
4. 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