The Basics

From diagnosis to today: how I live with chronic pain

I developed Fibromyalgia nine years ago when I was 24 years old. What started as back pain soon spread to my arms, my neck and my legs, and in a matter of months I was struggling to get out of bed. Frequent visits to the doctors and numerous tests at the hospital resulted in nothing, and no one could tell me what was causing the pain.

Doctors wrote prescription after prescription for a variety of pain-killers, none of which worked, and I was eventually referred to a rheumatologist. Unfortunately, the rheumatologist decided there was nothing physically wrong with me, so referred me to a physcologist, and so began a frustrating medical journey experienced by so many other chronic pain sufferers.

Fibromyalgia takes a while to diagnose. It can’t be identified with a blood test or scan, so it becomes a process of elimination. It took 18 months for a GP to confirm I had Fibromyalgia (a fairly quick diagnosis in comparison to some stories I’ve heard) and during that time my physical pain was also accompanied by a gnawing fear that my body and mind were slowly falling apart.

When I was finally diagnosed I assumed everything would start to get better, but for every pain consultant I saw, I saw a further three psychiatrists – all of whom wanted to link my pain to some kind of previous emotional trauma. I was asked about rape, abuse and violence over and over again, none of which had occurred.

Everything I said was analysed and re-analysed, from my relationship with my father to my flippant comment about being a control freak, each word I said was turned into a suspected reason for my pain.

During this time my office job had become more difficult to maintain and I was on such a weird combination of medication that pretty soon my social life become difficult to maintain too. I stopped going to gigs and festivals, stopped seeing friends as often, I moved back in with my parents and I quit my job. It all seemed pretty crappy.

There is no doubt about it; learning to manage my pain has been quite a journey. I started off pretty scared and felt completely out of control, not really knowing what lay ahead of me. But, after a while, I took the time to get to know my condition; I observed my body and the way it responded to things, and I tried to explain it to others – some who really ‘got it’, others who tried to, and some who didn’t.

I am very lucky that my boyfriend got it from the start. His dad has had ME/CFS for 40 years so he is familiar with chronic pain and fatigue and knows just how to support me and my condition. However, I’m very independent and I like to be busy, so my biggest fear was that I would become reliant on his support – physically and emotionally.

Thankfully, as I started to understand my body, I identified my triggers and I developed coping strategies. I soon went back to work, moved in with my boyfriend and we got back to our ‘normal’ way of life – working hard and playing hard. The problem with that, of course, is that I got cocky. I quickly learnt my old life and my new condition didn’t really work very well together, and so I spent a lot of time pushing myself to be the old me, trying to do everything on my own, only to find I would flare up and crash a few weeks later. The harder I pushed myself, the longer I crashed.

And then, in 2013 – four years after I first became ill – things changed. I had a bit of an epiphany moment where I realised I really had to change my routines and find a new way of living, and so I started this blog. A Life Less Physical has probably been my biggest achievement to date. I needed to try and find new hobbies that would keep me busy and having fun but that didn’t require quite so much physical activity and, after a while, the hunt for a life less physical became an activity in itself. I started the blog as a way of recommending fibro-friendly things to do but pretty soon I realised the blog itself had focused me. I started writing about coping with Fibromyalgia and as I learnt new strategies for managing pain, I would recommend these to my readers. I’ve made connections with fellow Spoonies across the world, and discovered social media is the perfect place to meet like-minded fibromyalgia sufferers without having to leave your sofa.

I am by no means perfect at managing my pain, and I often have to remind myself to take a bit of my own advice. I work full time, I write almost every day, and I am always trying to find new things to do – if only to make sure I have something to blog about! I’m forever being told I don’t rest enough, and consultants have recommended I reduce the amount I work in an attempt to balance my energy and my flares.

However, though it may seem like I’m not giving myself enough rest, I don’t make a single decision without thinking about my ability and my pain. Managing my body and my symptoms are now parts of my daily routine; a fibro-friendly way of life is at my core. I recently wrote,

“Once upon a time, my pain was something that made me different to others and for that I was angry. Now my pain is something that makes my blog different to others and for that I am surprisingly grateful.”

Fibromyalgia is, quite frankly, an incredibly weird condition. It’s unpredictable, it’s mysterious, and it’s very difficult to cope with because our medical professionals haven’t cracked it. There’s no treatment plan, no support nurse, no guidance, no proven medication. Advice is contradictory, most GPs seem dismissive, and learning to manage our pain on our own is exhausting. Like so many chronic pain conditions it’s an emotional rollercoaster. But, having failed at managing my pain quite spectacularly in those early days, I think you have to go through that disaster before you learn how best to manage it and what works for you.


16 comments on “From diagnosis to today: how I live with chronic pain

  1. You sound like my twin 😉 same story for me but onwards and upwards 😘

  2. You did get diagnosed with Fibromyalgia much more quickly than others. My gp took ages after he eliminated all other conditions apart from the ones I already had. I can remember that I initially got sick…then was diagnosed with chronic fatigue syndrome. eventually thyroid then fibromyalgia…then the others…

    • I used to work in medical publishing and had seen a book on Fibro. I suggested it to my GP after we weren’t getting anywhere and he agreed with the diagnosis. There’s still a part of me that wonders if I have something else, seeing as I basically diagnosed myself!

  3. This is very much my story and where I am currently. I only had a diagnosis last year, but the affects on my life has been so immense and now I find myself wondering what my future holds for a career? A life less physical, I love that website name.

  4. Agree with you completely… almost as if we have to be our own medical advocates now a days….since we know our bodies best.
    Thanks for sharing what works for you..

  5. Thank you so much for sharing that!! I was diagnosed in 2003. I had major surgery, large ovarian tumor/full hysterectomy. Six months later I was having swelling in my ankles and pain in my legs. After a while the pain spread to the rest of my body, I felt like I had the worst case of the flu ever, but no fever. Luckily I had friends with Fibro who told me they believed that’s what I had. I told my Dr I believed I had it, she agreed it sounded possible and sent me to a Rheumatologist, who confirmed my diagnosis. Then in 2012 I was diagnosed with Rheumatoid Arthritis and Osteoarthritis. It’s a struggle. I can no longer work. I’m still trying to get disability. I tried when I just had Fibro and I was denied. Now that I have Rheumatoid too, I’m trying again. I have a very hard time remaining positive, so I really enjoy reading your posts and knowing I’m not alone. Thank you so much for your blog!!!

    • Aw thank you so much for this!! It’s hard to be positive all of the time, so it’s good to have little pockets of the internet to cheer us up when we need it. Wishing you lots of luck for your next disability assessment. x

  6. I was diagnosed 1990 after months of testing. I learned to cope until 2016 I had a heart attack. I went into a flare and hasn’t stopped. June 2017 I started with my back burning tingling in my neck pain. I was never given pain meds so always relied on Tylenol. I have tried alternative and that worked from 1993 to 2016. Now nothing seems to help. Open to any suggestions.

  7. Get yourself checked for Epstein Barr virus

  8. My life in a nutshell. 35 year mom of 4. Diagnosed about 4 years ago. I am so different from the way I used to be as far as what I am able to do. Mine was infact brought on by severe emotional trauma though. Life is good now…except this and it appears there is no end in sight with this “F-word”

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