If you’ve found this blog, chances are that you need answers, help and most importantly hope. You’ve probably also got fibro fog and can’t focus for long. So no long-winded back-story: I suffered from fibromyalgia since my early 20s, at times debilitating, but mostly just grimly bad. I’m now 39, with a crazy active preschool son and another little bump on the way. For the last 3 years I have been 80-90% fibro-free thanks to an oxalate free diet and a few minor lifestyle changes. I hope to be an inspiration, a helping hand, in whatever small way I can, and a little ray of light in your life. God knows, you probably need it.
Now if you’ve got a bit more mental energy (or you’ve just had your 3rd coffee of the day, more about that later) and are interested in the history, here’s how it goes…
I was diagnosed with glandular fever (or mono, for my US readers) aged 15 – it goes round schools like wildfire, all that lovely saliva sharing that teenagers like to engage in. To my mother’s eternal regret, I didn’t take any time off, stayed in (boarding) school and continued with my rigorous programme of sport, music, and academic studies (I was/am an A type personality, and had to excel at everything). The fever kept flaring every 6 months, leaving me bed-ridden for a week or so. After finishing school I hot-footed it to university to study dentistry (! I know!), which is actually pretty intensive, where 1st year dental students have to absorb the same amount of biochemistry, physiology and anatomy that medics do in 2 years. Cue massive burnout at the end of my second year, and diagnosis of ME (helpfully also known in the UK as the yuppie flu). I took a year off at that point, but travelled, worked and didn’t really try to reset or be kind to my body. Back to university after that to study psychology, leaving 3 years later with a 1st class honours degree, and all the symptoms of fibro.
At that point, my mother was diagnosed with fibromyalgia by a helpful Swiss doctor who was much more clued about it than the doctors in the UK – who, understandably perhaps, view it as a ‘sink condition’ (ie their hearts sink when they see a patient, as they know there’s not much they can do), and worry about the drain on stretched NHS resources. I went to see him too, and aged 24, got diagnosed with fibro. Not willing to be labelled ‘ill’ I threw myself into the life of a young London-living advertising exec, with all the associated excesses. This took a terrible toll, and I had to take more and more time off work. I started to try prescription pills, acupuncture, psychotherapy, supplements, Chinese herbal medicine, I changed jobs (starting my own business! duh…), everything I could really, but nothing helped.
For as long as I can remember, I felt foggy, blue, I had constant aches in all my joints, painful pins and needles on my face and back, had to pee every 10 minutes, and – the killer – never got any proper deep sleep. I was exhausted after 1 glass of wine, got a fever when I exercised – even gently – and IBS was so normal for me that I barely even registered it. These symptoms fully ramped up after the birth of my son, resulting in a diagnosis of post-natal depression (which incidentally, I don’t agree with – it was just full-on fibro).
And then, Thank God, for this article, which literally changed my life in the space of 3 weeks.
3 weeks! That’s all it took. I went from feeling daily pain of 6/10 (where 10 is unbearable), with flares of 8/10, to daily pain of 2-3/10, with a very occasional 5/10. My husband and I didn’t dare to talk about the improvements at first, as I had had so many false hopes over the years. But sure enough, I felt, and still feel (3 years later) 90% fibro free.
Over the last few years I’ve played around with the oxalate-free diet, tried and tested aspects of other diets (paleo etc) particularly as the movement for clean eating has gathered steam. I’ve tried different supplements (jury’s out, still nothing significant except Iron for restless leg, more on that here), lifestyle changes and sleep aids – all with the aim of getting 95-99% free (I’m not sure we’ll ever be 100% fibro free until medicine makes a genuine leap forward).
So this blog is an attempt to distil the advice and knowledge that I’ve gained over the last 3 years into something useful, supportive and positive for other sufferers out there. At this point of course I should insert a disclaimer: I’m not a doctor! It’s personal experience only, and I credit my readers with enough intelligence to treat this information carefully, and always consult their own doctor if they’re concerned, are making significant changes or simply want a medical opinion. It’s a terrible illness, debilitating enough to colour every aspect of your day, but not bad enough that it’s widely understood and acknowledged, so there is no support, no fundraisers, and very limited understanding amongst friends and peers.
Here’s to your recovery – you can, and will!