Day 1 of ‘Chronically talking about pain’

As ‘Chronically talking about pain‘ launches for the first time today, I wanted to write a quick piece about my background. About me and my chronic pain.

I appreciate some of you followed and supported my work throughout 2020 (I cannot thank you enough!) but I have already had people reach out to me on social media regarding this initiative, wanting to get involved, who are now stumbling across ‘Joel vs Arthritis’ for the first time. So it feels like a sensible place to start.

I support ‘Chronically talking about Pain’ this January. Talking about life in daily pain to raise awareness. Get involved with the hashtag #MyChronicPain (#JoelvsArthritis #ChronicPain)

The kid with arthritis

I have had Juvenile Idiopathic Arthritis since around my 11th birthday. In my 20’s, I developed Psoriatic Arthritis, so now my condition is commonly referred to as Psoriatic-associated Juvenile Arthritis.

Over the years, I was diagnosed with other conditions, such as Ankylosing Spondylitis (AS), but in my Dr’s defence, they observed an evolution in those early days. Trying to pin down the areas of pain to what type of arthritis it could be. In my 20’s, as my spine showed no sign of fusing but my skin developed rashes, and my toenails started to fall off (I warned you this series would be a no-filter look at these things!), it was clear that we had backed the wrong horse.

In fact, I only discovered AS was a misdiagnosis when I asked last year why it was never mentioned anymore – funny how you are given these big, life-changing chats when diagnosed with these things but no one wants to explain when they get it wrong. It’s ok; we’re all human – talk to your patients more, please, Docs. 🙂

Muddying the waters

I have lived with long periods of chronic pain throughout my life, in line with my arthritis flares. In some cases, particularly as a child, these bouts of constant pain lasted years. It’s become a normal part of my life – it doesn’t make it okay, however, or something that I should accept without question.

Around five years ago, this subject became more complicated for me. I started experiencing what back then I referred to as ‘weird sensations‘. Pins and needles, feelings of my hands or feet being on fire or trapped in a door. Some days, loss of feeling altogether, which is just as unsettling as it sounds.

I would jump out of bed at night with sensations of ‘prickly spiders’ crawling over my ribs – only to be fully lucid minutes later and still experience it, quickly ruling out my thoughts of it simply being a nightmare. I also put a lot of this down to side-effects of treatment or swelling from arthritis flares that sometimes coincided with these episodes. And they are episodes – still today, they come and go in periods of immense disruption, just like my arthritis does.

Things started to change when one day I ended up in hospital after collapsing at work and then developing the most severe headache I have ever experienced in my life.

More questions than answers

To cut what could be a very long story short, fast forward five years, and I am still none the wiser. My symptoms have gone from something that flares a month or two each year, to virtually ever-present since 2019, where a biologic treatment change, seems to have put all of this into overdrive.

You can read more about that here:

Over the last five years, I have had numerous referrals, mostly to Neurology, when I have been told its migraine, spent time on hospital wards ruling out stroke and meningitis and was subjected to lumbar punctures and all that other unpleasant stuff. Each time we found something, however, it was frustrating put down to either my chronic condition or its treatment.

I had a breakthrough during the dark days of 2020, however, when I was able to get the all-clear from Rheumatology, confirming that I am now ‘active arthritis disease-free’ currently, which puts my issues firmly back in Neurology’s court again.

The current line of thinking is it’s either nerve damage from years of arthritis flares or something autoimmune but targeting my central nervous system instead of my joints. I get many letters from the hospital to my GP at the moment that end with, and I quote: ‘we are unable to rule out Multiple Sclerosis at this time’, which terrifies me.

Modern-day and the #MyChronicPain campaign

So that brings you very quickly up to speed – thank you for indulging me – but it will help explain some of the more detailed experiences I go on to write about this month as part of ‘Chronically talking about pain‘.

As mentioned before, this campaign is to talk about the real-life experiences of life in chronic pain. How people like me don’t have answers after five years of some really troubling and upsetting experiences (imagine waking up with no feeling in your legs for the first time, for example!). How for some, there is no end in sight to this nightmare, the painkillers have long since stopped working, relationships have broken up, jobs have been lost, and mental health suffered irreparably.

We might not be able to fix people’s pain, but we can, at the very least, shine a spotlight onto it. To let people know they are there and just how much effort goes into getting to work on time, their child dressed and in school or, in some cases, simply getting out of bed each morning.

This January, I hope the #MyChronicPain campaign gets people talking, opens eyes and lets those who need to hear it during these challenging times, that they are not alone.

I will be ‘Chronically talking about pain‘ each day through January – will you join me? Get involved with the #MyChronicPain hashtag and let me have your suggestions for future posts and podcasts this month in the comments.

Join our Facebook Support Group to talk to others with arthritis and autoimmune disease.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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