Fibromyalgia: My Health Journey

Recently I was diagnosed with Fibromyalgia, a multi system chronic condition that is characterised by chronic widespread pain, extreme fatigue, brain fog, digestive complaints and depression. For a sufferer of Fibromyalgia, stress is a major driving force in exasperating symptoms. It is a lifelong condition (there is no cure) but with a range of therapeutic care, symptoms can be managed and even improved. It sounds like a lot, and it is. It has felt like I’d stumbled into a dimly lit tunnel filled with physical and psychological challenges coupled with medical puzzles that needed a large brains trust to solve. I’ve been in this tunnel a long time, but have now stepped into some sunlight.

Rather than being completely devastated by this diagnosis, I felt a huge sense of relief, validation and overwhelming gratitude. For my persistent struggle with extreme fatigue, insomnia, digestive complaints, low moods and pain have for the past 7 years made me question my sanity, and doubt my capabilities as a person. I’ve often despaired that my health would never improve. Typically, attaining a diagnosis is difficult, as there is no scan or blood test that shows a problem, which means for many people, myself included, the journey to get to this point has been very challenging. I’ve often felt like I lived with an invisible disability.

For as long as I can remember I have experienced back pain. Some days I wake with it, some days it comes on gradually, some days it’s a dull persistent ache, and some days I have what I label ‘distracting pain’; the kind that is so unrelenting and intense all I can think about is surviving the day, until I hopefully fall asleep, stay asleep and reset. Some days I’ll be feeling good, and then 10 minutes of sitting in an uncomfortable chair or turning my head to talk to someone sitting beside me will bring on pain so intense it will take me several hours to control it again. It’s a rare, but delightfully memorable day to have no pain.

What started out as a minor back injury when I was 19 years old developed into a chronic condition that has meant for the past 25 years I have been seeking answers and finding help to manage the day to day of life’s demands. Being a mother to 4 children has been taxing on my body; difficult pregnancies and a couple of surgeries have added to my load. When my kids were young, I lived in the hope that once I didn’t have to carry small children the physical demands upon me would be alleviated, thereby giving my body a chance to heal, recover and be pain free once again. Turns out it wasn’t that simple. Things were about to get worse, not better.

No sooner was I saying goodbye to my youngest at the school gate, when my eldest was entering high school. While physically, I was enjoying more stamina and less physical load, the mental and emotional life load was increasingly heavy. Coming to recognise the correlation between my physical pain experience and times of high emotional stress would take me years to understand and accept. I used to jokingly say that I was allergic to stress! Turns out, I wasn’t far from the truth.

For a long time my rhythm of living was between boom and bust. My booms were when I had just enough energy to power through; racing about each day meeting all the demands that were required of me. I lived on Panadol and scorching heat packs to get me through until my next Osteopathy visit. I was good at hiding my pain, most people wouldn’t have realised I was in agony. I used all my energy in the day, but my evenings I busted; back pain would render me useless. At first my busts were tolerable, as I have a high threshold for pain. However, persistent pain is draining and makes even a sunny personality feel quite bleak. I was at a complete loss on how to properly care for myself. I would reason, what mother on the planet has the luxury of rest? But when my first experience of fatigue so extreme reduced me to lying on the couch for several weeks, I began to worry and wonder. It felt like the tap to my life source had been turned on, and all last drops of energy had wastefully eked out onto the floor; now an invisible weight fell upon me, forcing me to submit to its acute pressure.

It wasn’t until I found myself suffering from debilitating insomnia, a symptom of building pressures in life load and post traumatic stress that I hadn’t addressed properly, that I was spurred on to seek effective help and deal with long held hurts. After sleep studies ruled out anything sinister I was told the most effective help was cognitive behavioural therapy.

I must say at this point, that walking alongside me and faithfully treating and guiding me, has been my amazing Osteopath. A kind, empathic, attentive, knowledgeable and skilled woman who has seen me through many a storm and who has gone above and beyond in her continued care of me. From the first treatment I had with her, she has sought to treat me as a whole person. Not only treating my physical symptoms, but looking at the interplay between my emotional well being, life load, diet, exercise, sleep patterns and how each one interacts with and impacts the other. She has coached me on how to think differently about pain and challenged my views about myself. She’s helped me to increase my capacity and tolerance and has gently encouraged me to try new things; to recognise the need and importance of having fun and making time for things that nourish me. She has been an integral part of my health journey.

As has a wonderful psychologist who is godly, wise, insightful and funny. He’s helped me to talk through the most painful of memories, bringing each of them to God and has given me space and tools to courageously face my fears and find healing in Christ. Being able to articulate what I know of God and believe he would say to me in those times of greatest pain. I can still feel (even now) that wonderful deep breath of peace relaxing my anxious body as I think of God’s great love and delight in me.

Finally, I’ve had a very thorough GP who has sent me for so many investigative scans and tests, that when I walked into the Rheumatologists office armed with my thick file of test results, and my body that speaks for itself, she could pronounce quite confidently what I was suffering from.

I don’t write all this to have a good moan, or to have people pity me. I’ve done enough moaning and pity parties to know that never makes you feel better. I write this in part, because it’s played a significant part in my journey of understanding myself, and where I find myself now. In writing this there has been countless twists and turns in my health journey that I’ve had to leave out; so many rabbit holes I’ve been sent done. It’s also been helpful personally to reflect upon how far I’ve come. So often it’s easy to get weighed down by what’s in front of you, to forget where you started.

While I’ve come a long way, I’m still learning to manage and thrive. I still have my freak out moments, I still get discouraged and cry, I still have pain days and triggers that cause a flare up. However, I’m more comfortable with respecting my boundaries, advocating for myself and taking time to rest. I’m learning to say “no” more, being okay to disappoint people, and learning to pace my activity so I can manage and enjoy the things and people I want to give my time and love to. I also write this to educate others, as most people I know have not heard of Fibromyalgia, and even if they have it is not an easily understood condition. I know too that each persons story and journey is different to mine.

The person who was the most thrilled for me to receive this diagnosis was my husband. He has been my comfort, my champion and closest companion. He has faithfully and sacrificially loved me through all my highs and lows. I realised in that moment how big a toll it has been on him emotionally as he’s cared for me, sat beside me in waiting rooms, dropped everything to help me, worried about me and prayed for me daily. I love him dearly and am so grateful to God for him. How blessed I am.