Yes, puff – as in inflammation!! How ironic is that when you think of the accident I had – an exploding fit ball!
It is now officially proven; my body has been in a battle with inflammasome – not a pain gene!
As I awaited my DNA results and the final consultation with Dr Valerio Vittone (Valerio), I shared my thoughts about inflammation and whether my chronic pain saga might just end up being a story of inflammation.
I was right!
‘Pain is a unique experience’ we’ve all heard it, and by now, most of us believe it. But, after viewing my personal genetic report, I’m now sure that pain is a unique experience.
Perhaps it’s not even pain for some of us. It’s not for me!
This genetics investigation exposed the elephant standing by my side the last 15 years – actually, it’s been with me all my life but it took an accident to begin its stampede!
I was an asthmatic child, and I still have a reaction to horses, kittens, puppies, hay, food such as the Curcubit family and a bundle more allergies.
Known explicitly as NF-kb, IL-6, IL1B, TNF CCL2, inflammasome, these markers in my genetics don’t indicate pain genes; they indicate activation of a process that won’t shut up after being ignited by trauma. Moreover, their combination is rare in the way they ‘present’ in my body – in fact, I’m in the 2% range of people in the world (who have had genetic testing done) with this inflammation cocktail.
Had I not figured out how special I was up until now, I certainly know it now (clearly sarcasm!).
Official diagnosis – not pain; it’s inflammation.
And it always has been!
I’m not dealing with pain genes; I’m dealing with an inflammation process. I’m not trying to rewire trauma memories or change a tune learned after years of ranting. And I must admit I have found it hard to believe that my brain has been belting out a pain tune.
It hasn’t felt like a fit for my experience since I first heard Prof Lorimer Moseley speaking to Margaret Throsby on ABC Classic FM and felt compelled to switch the radio off!
Pretty rude. But as you all learned, I later wrote to Lorimer, who helped me enormously. It was he who put me in touch with my diagnosing physiotherapist.
Of course, that was helpful, but my first investigation should have been with a genetics doctor like Valerio, (quals such as a PhD in Biochemistry, Molecular Biology & Virology to identify complex conditions relating to disease!).
(Listen to this Talking Health Tech podcast with Peter Birch and Dr Valerio Vittone)
Don’t we all need one of these consults in our lifetime? It only has to happen once to have the information you need for the rest of your life.
I have been questioning pain research ever since I started reading it – as a patient, it’s been ‘my job’. Unfortunately, people with chronic pain have to figure out their own way forward – that’s hard! Harder if you’re searching in the darkness without your genetic information.
I’ve had some great teachers, Maddy Lock, Anne-Florence Plante, John Quintner, Raffaele Vavala and UniSA’s Pain Revolution have all presented me with their experience and research and I have had many takeaways but none fit my experience completely. Valerio’s investigations do.
That pain is made in my brain confused me as a definition, and I found myself making up a simpler explanation in order to cope: “Poke the pain, and it pokes you back. Poke it harder, and it’ll poke you back harder. “
This was a ‘simplified’ approach to help me form a rule to live by; ‘try and avoid putting pressure on your pelvis Soula’. It was a kind of Spoonie approach (an ingenious pain management approach that has helped thousands).
Well, now, I have another way to combat my discomfort – with food! And I have been. And it is making a huge difference.
Big news. Big expectations. Pain redefined
It will take a while to process all this and comprehend what happened to me in the past 15 years, but I think the main message is; had I met someone like Valerio within 6 months of my injury, I would not be in this mess today.
Had I met someone like Valerio at any time in my life, I would have been armed for the rest of it and known how to manage my health and any traumatic events. DNA genetics and AI blood testing should be essential to every human.
Even with a Pudendal Neuralgia diagnosis early on, I am now not convinced I would have solved the mystery completely. Do I have Pudendal Neuralgia? Does anyone else have it? Do we all just have inflammation issues?
My heart is about to burst, my brain is subsiding from endless questioning, my belly and whole body feel calm and peaceful, and I suddenly feel smaller too – dare I say deflated (!!).
I received my DNA results in a final zoom appointment with Dr Valerio Vittone. I’m genuinely gobsmacked and overwhelmed. But, I’m also disappointed, sad and angry that it’s taken 15 years to discover this crucial information and, once again, I had to instigate the process all by myself!
I’m feeling the ending of a long and ghastly story is drawing near – I didn’t think I’d ever get finale feelings!
But this new information has provided a colossal management mechanism to help me live out less uncomfortable days. I’ve only had two such strong memories of hope like this, and they were when I was diagnosed and after my nerve stimulation implants.
This new info also has me reimagining these terms now; rewiring, negative thoughts, relearning, neuroplasticity, pain tunes, brain training, nerve pain, burning, flare-up, aching, tingling, stabbing, allodynia, spasm, electric, neuralgia, hypersensitivity etc. All these words are either in my ‘no longer relevant’ pile or in my ‘description for inflammation’ toolkit.
And there is sense to be made from my pain responses and coping strategies over the past 15 years. For example, cold running water to settle flares, inability to sit in the sun for very long, preferring a cool climate, only wearing cooling fabrics and responding negatively to heat were all obviously pointing to ‘inflammation’.
I’m dumping chronic pain.
(Line in the sand) I don’t have chronic pain. I have chronic inflammation.
Can we ever attempt to understand one’s personal trauma response without knowing their genetics?
I don’t believe that’s possible. And regular blood tests just aren’t enough.
My results specifically are stated as ‘overall Artificial Intelligence (AI) Polygenic score’ and associated areas of concern as:
- INFLAMMATION 98th
- BLOOD SUGAR 81ST
Pain isn’t number 1; pain isn’t even in my top 5 ‘parts’.
Looking back at my treatments, I now know why some worked and some didn’t. Research indicates that stimulation treatments and nerve blocks inhibit inflammasome (my elephant). No wonder the nerve stimulators are effective for me. My spinal cord stim was a management tool up until now. Well, from now I’ll be expecting continuous progress.
Everything has changed for the better.
(Excuse me while I have a little dance).
Another example: My treatment with Raffaele Vavala (my Italian Chinese Medical Practitioner), entailed repeated conversation about the body’s pulses and heat and how his treatment attempted to cool and calm all that down. Perhaps that’s the closest I’ve come to realising the role of my genetics in all this.
To date, all the effective treatments have been fighting inflammasome, squashing its voice. So what I was doing by not poking the pain is actually not encouraging inflammation. By not encouraging inflammation, I get better.
I wonder if this might be the same for other people who supposedly live with chronic pain…
Rheumatoid Arthritis seems to be clearly related to inflammation. Why can’t chronic pain be? We get hot, we fire up, we feel we’re going to explode from the inside, we go numb, we spasm, we hurt, it’s the same erratic behaviour people living with nerve pain experience.
Today I said to myself, ‘Yesterday’s yoga and too much sitting may have caused today’s pain’.
Well, ‘hold up, Soula, shall we address the elephant?’
‘You treated yourself to a croissant in the morning, one coffee with the sweeter style coconut milk and then had Thai/Korean take-out for dinner that included dumplings with just a couple of dips of sauce and Nasi Goreng? Perhaps it’s not my activity so much that’s causing inflammasome to set the bells off… maybe it’s the food!’
What if part of the discomfort is related to food my body can’t process easily – worse still, sets off the inflammation process? Down goes the food, in the gut and through the pelvis… well, what if that’s not so simple with some foods?
In addition to the trauma of the accident, eating unsuitable foods for over 15 years may have been continuously putting enormous pressure on this pelvis.
I think genetic testing should form part of everyone’s health plan.
When I think of all the appointments I’ve paid for, the pain treatments I’ve tried that haven’t worked, the aids I’ve bought, the creams and heaven knows what else, the price to pay for knowing your genetic make is totally worth it – and you only need to do this testing once! And you can do it via zoom.
It’s a consultation that doesn’t demand more and more appointments (or forces you to endure blank stares). This investigation has a clear path and an ending. And best of all, it arms you with actual facts and valuable, helpful information specific to YOU. Unique health information about your whole body, blood, and genetic make-up.
I am so grateful to Valerio for supporting me through this investigation, sticking with me until I understood the reports and how the results impacted me and my situation.
I’m so happy for myself (😂). And I’m so happy to be able to share this information. I feel like all my ranting and raving has actually amounted to something significant for you all.
That there may be another way you investigate your health issue in order to find a solution means the world to me. It is the only positive outcome to enduring all this.
Whether you see Dr Vittone or find your own version of Dr Vittone, please investigate this important part of you. And let me know how you go!
I’m off to do another little dance!