I haven’t written much about my chronic pain journey, and to be honest, that’s because I was being paid to write about inflammatory bowel disease (IBD) and ostomy topics, and that took all of my time and energy for a good few years. I’ve more recently started writing a bit about mental health, but I need to play catch-up on chronic pain topics, too.

I have suffered with pain for one reason or another since 2007. Sure, there were some short periods of respite between ulcerative colitis, pouchitis and cuffitis flares, intestinal strictures, abscesses, and surgeries. Still, the majority of the time between 2007 and 2018 involved me being in pain. 2018, if not before, I began also suffering with fibromyalgia. I was diagnosed in 2020, and other than knowing a lot of people in the IBD community were also diagnosed with it, I knew very little.

Before my diagnosis, during a chronic pain flare

I’m not the kind of person to take things lying down and I wasn’t going to simply accept I was bed-bound, regardless of my body making me feel that way. I’m determined, some would say stubborn, and I was certain I was going to fight my way out of the house! I’d had bowel surgery, and whilst I was used to recovery feeling like it was one step forward and two back, I was very much feeling like the one step forward wasn’t happening. It’s important to note I’d had six bowel surgeries prior to this, so I knew what to expect “normally”.

The pain was incredible. I knew I should be up taking walks around the block by now, but I was finding it difficult to even make it to the kitchen (I lived in a downstairs flat). I made really slow progress, but it was progress all the same.

My mental health was really suffering because being in pain 24/7 does that to a person. I was frustrated, bad-tempered, and often upset. The surgery, in my head, was finally going to be the end of my constant pain. Then, this. The pain seemed to be spreading around my body, so within a few months of surgery I was experiencing widespread muscle and joint pain, plus allodynia, which is super sensitive skin, plus sensitivity to light and sound. I felt so fragile and pathetic.

Still, I kept pushing, because progress is progress, no matter how miniscule!

Back sprains and dog walks

I promise this is relevant to the story! Just bear with me a moment; I’ll keep it short. Constant back sprains led to me seeing a physiotherapist. I had the first appointment and then the March 2020 COVID-19 lockdowns happened. Physio appointments were cancelled for the foreseeable, so I was left to fend for myself. The movements the physio had given me were very basic because my abdominal muscles (understandably after 7 surgeries) were so weak. Most were just mobility-based rather than strengthening, so it wasn’t long before they weren’t helpful anymore. I asked Dr. Google about beginner’s exercises for the lower back and core, which is when yoga was recommended. I decided to try it when I realised all the movements the physio had given me were also used in yoga, so it made sense that yoga would be a suitable progression. I’ll talk more about yoga another time, but let me just say, I could never have foreseen the benefits.

During the same period, we moved into a bungalow that didn’t yet have a secure garden. This move took place in February before the March lockdown. I had three dogs, each with teeny tiny bladders and rectums for storing waste, so for several weeks, I had to take them out every couple of hours. I was overwhelmingly exhausted, but it had to be done. I was so relieved when the garden was finally secure, but I made the decision to continue walking the dogs every day. They loved going out, so I wanted to do it for them, but I also wanted to do it for me. I’d proved to myself that I could, albeit incredibly painfully. I figured a short daily walk would do me good, and would serve as a good foundation for the daily movement I knew was necessary. I’d already figured out no movement increased pain just as much as too much movement!

The fibromyalgia diagnosis and treatment

The rheumatologist who diagnosed me in Sept 2020 told me I was already doing everything I could do to help myself. I didn’t find that very helpful; I was desperately seeking more relief from the daily chronic pain… I asked many questions, and he had very few answers. Fibromyalgia, as it turns out, is a poorly understood chronic pain condition, with some doctors still refusing to accept it as a real condition. I get it, the list of varying symptoms is enormous, and the crossover between conditions like M.E, fibromyalgia, and chronic fatigue syndrome makes it difficult to distinguish between one and the others. I knew daily yoga and a 15-minute walk was more than many others with fibro do, but it certainly wasn’t enough to stop me from crying at the end of every day because my body hurt so much and it all felt so unfair. He told the GP to prescribe Nortriptyline and consider medications like Pregabalin or Gabapentin for pain control. And that was it, I was left to fend for myself again.

I couldn’t function on the nortriptyline so that didn’t last long. I started Gabapentin and slowly increased the dose until I felt it was effective. Still, I cried at the end of every day.

I think the whole process of diagnosis, grieving for my old life, and reaching acceptance, I’d already been through with IBD kind of primed me for my chronic pain journey. Yes, I still undoubtedly went through that process again, but it was a whole lot quicker. It took me 7 years from being diagnosed with IBD to reach acceptance. It was less than a year with the fibro.

An introduction to pain science

In March 2021, a friend sent me a video, Healing Our Pain Pandemic, with Dr Rachel Zoffness, a leading global pain expert and thought leader. From there, it was down the rabbit hole into the BioPsychoSocial approach to chronic pain management. I wanted to dive into chronic pain science and start actioning things immediately! The video had brought things to my attention that I’d never heard before. I learnt more about chronic pain in that one hour than I’d learnt from any of the health professionals I’d sought help from with regard to my pain in the previous years. Some of the revelations felt truly shocking to me. Everything I thought I knew about pain, that I’d learnt from healthcare professionals, TV and media, and all of the people around me were being undone. If only everyone knew the truth about how pain is created and experienced!

Slowly but surely, things have been improving. One of the first things I did was seek more professional psychological support. It’s been a trial-and-error process, and some things I’ve tried haven’t helped at all. This is not a one-size-fits-all quick fix, I’m afraid, but it’s a bloody good start! I dread to think where I’d be today if I hadn’t come across this BioPsychoSocial approach.

It has resulted in me leading a much healthier lifestyle because I realise how many other factors play into my experience of pain. Plus, the connection between my mind and body feels so much stronger now. There was a disconnect for many years, probably partly because I felt let down and betrayed by my body. So when people said things like “You must listen to your body”, I’d just feel annoyed because

1. I couldn’t trust it
2. I couldn’t decipher what it was telling me

Now, I feel fully connected 100% of the time. It’s often a bodily sensation that first brings an emotion, such as stress, to my attention.

I must end here so that future articles can have more focused topics. I hope reading a little about my journey has been useful, and that it may even give you a little hope.