What It’s Like to Have Fibromyalgia: My Story

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What is fibromyalgia like? Relentless, widespread stabbing pain, burning sensation and muscle spasms which I woke up with and went to sleep with. Combine that with dizziness, sleep disturbance, nausea and anxiety.

After years of living with fibromyalgia, I have come to a point where I can manage it and live a relatively normal life, but it wasn’t easy and I didn’t get here overnight.

This is my story of how my condition developed, how I got diagnosed and how I manage my symptoms. 

I had been having some pain in my feet and legs for a couple of years on and off. At it’s worse I had  stabbing pains when I walked and the feeling of my stockings or jeans was really irritating against my skin. At it’s best, My legs felt tight and I had muscle spasms.

Quite suddenly, the pain grew, almost as though overnight, no longer restricted to my lower body it had spread to my hands, arms, neck and upper back. Normal daily things like walking, holding my phone, using a knife and fork, holding my new baby nephew, sleeping on my side, doing my makeup and writing were impossible for me to do without extreme pain.

I was terrified.

My sister died of brain cancer when she was not much older than I was. The fear that I too had a brain tumour or something malicious growing inside me was in the back of my mind for months while I lived with this debilitating undiagnosed chronic pain.

I saw various Doctors, Consultants and a Neurologist who did various blood tests, MRI scans, nerve conduction tests that looked for conditions like MS, HIV, brain tumours and cysts. But there was no conclusive reason as to where my symptoms were coming from.

I was given pain killers and tried to get on with my life as best I could.

I was away one weekend and ate a lot of junk food. In the days that followed, my pain was stronger than ever and it got me thinking: is it possible that I am putting something into my body that is upsetting it?

So I decided to do an experiment, completely cut out refined sugar from my diet and focus on food which was high in nutrients.

The results were astounding. After less than a week, my pain was completely gone and I eventually came off of my painkillers.

I thought I had solved the great mystery of where my pain was – a simple food intolerance, completely able to be controlled! Inspired and motivated by this big change, I started a three year intense course in naturopathic nutrition.

Fast forward one year later and I had started to get really busy with, I was cramming five days of work into four days in and office so I could go to school on Fridays. I spent all my weekends and evenings studying and working on the blog, when I wasn’t working, I was thinking about.

Needless to say I was exhausted and stressed 90% of the time.

Something had to give in my diary somewhere. Although my diet stayed sugar free, the pilates and  swimming I had enjoyed for the past year reduced from daily to almost never. As my work load became more intense and my studies more demanding, my stress levels were through the roof.

The pain came back almost as suddenly as it had gone. 

I was absolutely devastated. I didn’t understand why the symptoms where back, wasn’t it just a sugar intolerance?

By this point I was halfway through my first year of bio-medicine and we had discussed fibromyalgia in one of our lectures. I went to my GP and asked him if it was something we could look into.

I saw a rheumatologist who diagnosed me with fibromyalgia and anxiety. After years of unexplained pain, it was a huge relief to know, finally, the name of my condition.

It was hard for me to accept that I couldn’t carry on with a website I loved, studies I was passionate about and a busy job I enjoyed while living in a thriving, hectic city I called my home.

I knew I had to give up one of the three and slow things way down so I could focus on my health and wellbeing. I left my job and started to work part time and carry on with my studies and my website so that I could help others with chronic illness. I moved from London to another city, far less polluted and with a slower pace. I started doing yoga  and including mindfulness in my daily routine.

When you are diagnosed with something like fibromyalgia, it is easy to focus on what you can’t do. I may never be able to have a life where I can handle three super demanding things at once, live in a fast paced city, eat whatever I want, drink whatever I want, not get enough sleep or exercise regularly.

Instead I focus on what I can do. I am able to take control of my condition, I am able to listen to my own body in a real way, I can help others who have my condition, I have found a purpose and career that I am really passionate about, I can be grateful that I know what I have and how to manage it.

Perhaps most importantly, I am able to know that I am strong for fighting to have the life that I want, despite the condition that I have. 

Was this helpful to you? If you are thinking about cutting out sugar from your diet, check out my other articles:

Cutting out Refined Sugar? Here’s Where to Start

Surprising Food with Added Sugar and Alternatives

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  • Reply Amy October 5, 2017 at 4:22 am

    Thank you for creating this amazing blog. Such an inspiration.

    • Reply Michaella's Kitchen December 10, 2017 at 12:09 pm

      Thank you so much Amy, that is so nice of you to say and thanks for checking it out!! 🙂

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