Welcome our Cwtch Community Leader & Co-Creator

Barb Thornton

My journey with chronic pain began in 2003.

In the early years, life centered around doctors, tests, medications, physio and surgeries. My world consisted of pain, waiting and uncertainty while raising a family and caring for an ill parent. The career I worked so hard for slipped through my fingers. Depression took hold.

To get me through, I focused with high hopes on the date of my next appointment with the next doctor who would have the answer, fix me and make the pain stop. It would build to a crescendo but before the grand finale that reveals the answers and the fix, the curtains fell and the lights went out every single time.  Sadly, my story is not unique to the chronic pain community.

It didn’t take long to realize that life with chronic pain is so much more than pain. Chronic pain invades every aspect of your life. It is isolation, frustration, depression, grief, humiliation, shame, judgement, confusion and disappointments. It steals jobs, partners, friends and finances. It quietly steals your energy, motivation and self-worth. It is pleading your case for disability income, parking passes and extra red tape when you need to borrow money. It is wanting to participate in life and having no idea how you can or who can tell you.

Chronic pain is lonely.

I remember wondering how many others were as confused, scared, lonely and overwhelmed as I was. Wondering who I could ask (that gets it) for suggestions to help make my life fuller, richer, and more in line with what I want from life. I needed purpose in my life. I needed sound advice from someone walking the same path.
And so Cwtch (pronounced kutch) was born.

I am excited to bring my passion to life as part of The Chronic Pain Academy. Cwtch is the place to connect with others who get it and to grow your life into a life you love. It is a safe place learn and even have some fun. It is by warriors for warriors. 

 
I will be forever grateful to Deana, Pain 2 Possibilities and The Chronic Pain Academy for her incredible work and dedication to the chronic pain community. I am excited to see Cwtch come to life and to be part of building a truly meaningful experience to those who, like me, live with chronic pain. 

 
Wishing you a low pain day and sending gentle hugs. Come find your Cwtch with me.

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Pain and the brain are intricately linked.

Our perception of stimuli, out thoughts, behaviours and our emotions all have an impact on pain. In other words, what the brain perceives, the body feels. 

This is especially true for chronic pain where the brain transitions away from protection (acute pain) into over protection (chronic pain). It is what the oldest part of our brain (the amygdala) has done for thousands of years. And because we evolved for survival (and not happiness) we have what's called a negativity bias. This is where we tend to primarily focus on pain and problems in our lives.

When we focus on the pain, the pain becomes stronger creating this continuous loop of sympathetic dominance (think the 'fight or flight' response playing on repeat), which in turn makes the pain worse.

So what helps to unravel the loop of pain and focus?

There are a few things that need to be addressed, one of which includes finding safety in much of what you do. When the brain perceives activities as safe then it softens and the pain becomes less.

Secondly, gratitude and acknowledging small wins throughout the day helps prevent us from being overwhelmed with negativity. The glass is half full as well as half empty, but it's very hard to see unless we make an intentional effort.

Continual focus on the pain, as we see with chronic pain, can make it very difficult to 'see the forest through the trees'.  But acknowledeging the small wins throughout the day and being grateful for them can, over time and with repeated exposure, help the brain to signal the nervous system to 'soften' and be a little less vigilant.

In a recent study of 2,004 Americans, when asked about the impact of life’s little successes (a.k.a - small wins) they discovered that the average person has four small wins a day, or 1,460 every year. The study also found that four in five have become more conscious of their small wins since the start of the pandemic.

Small wins can include a wide array of possibilities such as finding a great parking spot close to the entrance, a 5 dollar bill in your pocket that you didn't know was there, or even a song playing on the radio that brings you back to a happier time. All of these instances help to flood the brain with feel good chemicals and respite from the negativity. Essentially it is a way of tapping into your own internal drug cabinet.

Just like a muscle becoming stronger with repeated exposure to strength training so too can your ability to recognize the wins of the day. It might not sound like a big thing to do but over time, it helps to shift our perspective away from the pain and intentionally towards the good that is happening all around you. It's also a great way to flood our brain with 'feel good' chemicals. 

However.....finding the wins can also be very difficult, especially if you live with chronic pain and/or unresolved trauma.

Because our brain has been designed for survival and thus the negativity bias, it seeks to 'protect', and in doing so, often misconstruing activities normally deemed as safe to be dangerous... even if they are not. So, course of action would be to work through the trauma with a therapist who specializes in trauma. The more safe you feel in your body, in your actions, the easier it is to acknowledge the wins.

Interested in learning more about chronic pain and self care management? Get on our email list for content your Doctor doesn't have time to tell you about.

Welcome to the first of our series of 6 articles about Fibromyalgia. in this 'episode' we dive into the fundamentals of Fibro.

The name was derived from the Latin word 'Fibro' or fibrous tissue and the Greek terms for 'Myo' or muscle and 'Algia' or pain, which describes the symptoms but not necessarily the cause. Fibromyalgia is currently classified under Rheumatology. And if we were to define what Rheumatology is, as described by the Mayo clinic, as an autoimmune and inflammatory disease that causes your immune system to attack your joints, muscles, bones and organs.

But Fibromyalgia is not technically considered an autoimmune or an inflammatory disease, at least not with primary Fibromyalgia. So what is it? The pain is not a result of the stimuli felt from the body being harmed. In other words, it's not an issue with the tissues. So how do we best describe Fibromyalgia? 

Fibromyalgia, as we are learning may have two different types. As stated by Jill Mueller, MD, 'the latest research is now suggesting the possibility of two types of Fibromyalgia - primary (what we are discussing in this post) and secondary. Secondary Fibro occurs when there is an underlying inflammatory condition within the body eg. Rheumatoid arthritis, inflammatory bowel disease, etc that sets up the process for the development of FM symptoms. This just emphasizes the need for a thorough investigation to rule out underlying conditions.'

In simple terms, we can describe Primary Fibro as a hyper vigilance disorder, which is more or less an issue of the processing of pain by the brain. Essentially our brain learns pain overtime and many of the pain behaviours that happen as a result of prolonged pain, only strengthens the pain response making the nervous system even more sensitive or hypervigilant. 

What are the precursors to Primary Fibromyalgia?  From what we know so far, there may be a slight tie in to our genetics. There may be some who have more of a propensity towards Fibro due to their genetic blueprint. But by and large,  Primary Fibromyalgia's antecedant is prolonged exposure to stress or trauma in early life which over time, can lead to Fibromyalgia.

We also know that infection can often lead to Fibromyalgia as well. The Epstein-Barr virus, and the viruses that cause influenza, and hepatitis B and C have all been linked to the development of Fibromyalgia.

When the neurological system is learning pain early on, and over time, it can become locked in this sympathetic dominant loop. In other words, your nervous system is always feeling there is a threat...which over time leads to physical consequences and a nervous system that is over worked and under payed! When living with chronic pain, over time, the brain actually learns pain and pain behaviours (focusing on the pain, wincing, talking about the pain, fear of movement, avoidance, frustration, muscle tension, tears, withdrawing from favourite activities) all add up and become stronger over time.

If pain is coming from a hypervigilant nervous system (primary Fibromyalgia), is there anything we can do to help mitigate the pain beyond the medication? The good news is...yes! We may never cure Fibro or get rid of the pain completely but it is possible to turn that pain into something more manageable. Our brains are incredibly resilient and plastic (neuroplasticity)....which means that given the right tools, a change of thinking, understanding the underlying issues, and getting the appropriate help, the brain can begin to heal and the nervous system calmed.  

Stay tuned for more articles on Fibromyalgia and self care techniques!