“I’m very open about talking about my fibromyalgia.”

Chris, 21, shares how his recent fibromyalgia diagnosis (after years of experiencing symptoms) has affected his life and what helps give him strength.

“I first saw a specialist about my pain when I was eight.”

At that time, my pain was thought to be growing pains as I was very young. My symptoms continued to develop across my body throughout my pre-teen and teenage years.

I believed I had fibromyalgia because my mum has the condition and there were similarities in our experiences. However, all of my appointments, blood tests and scans came back with ‘aches and pains – cause unknown’.

My pain became more widespread, more frequent, and more intense when I was at university. When lockdown came, part-way through my degree, I restarted my investigations and just after I graduated, I was diagnosed with fibromyalgia in July 2021.

“I feel pain all of the time and this affects my ability to do day-to-day tasks.”

Every task I choose to do has a trade-off with another. For example, if I choose to cook something, doing the laundry becomes more difficult.

I work from home most of the time and I have a set-up that works for me. Sometimes I work long hours, which is particularly difficult and usually affects my productivity the next day.

Going into the office is a real challenge, firstly the commute is over an hour, so my pain levels are already elevated by the time my day starts.

By the end of the day, I start to lose focus due to pain and I’m just relying on painkillers.

In addition to medication, I use freeze spray, a heat pad, and a TENS machine to help.

“I’m very open about talking about my fibromyalgia.”

I feel comfortable talking to people about my condition, but it can be difficult for people to understand. I don’t blame people for not understanding as it took me many years to understand myself.

As I ‘look’ like a young, black, fit, male and people make assumptions around that and what I ‘should’ be able to do. Once they learn about my condition that image is shattered, and some people don’t really know how to react.

“There’s definitely not enough awareness of fibromyalgia.”

The average person hasn’t heard of fibromyalgia and even people working in healthcare don’t have a good understanding of the day-to-day impact.

When I meet someone who has heard of fibromyalgia, I am always surprised.

I would just like people to understand that chronic pain is not something that just goes away and to understand that everyone’s experience is different.

If you meet or know someone suffering from fibromyalgia you should take the time to understand their particular experience. Think about how you can accommodate them and sometimes the smallest things can make a world of difference.

“My advice to others who have just been diagnosed with fibromyalgia would be...”

• Don’t be afraid or feel bad for demanding what you want from people and from health professionals.
• The experience of chronic pain patients isn’t always taken as seriously as it should be by medical professionals and therefore, we must be assertive about what we think would help us.
• Your care is a two-way process, and you have to be active in it.
• If you can ask for things from your friends, family and work it will then become the norm for them to accommodate you.

It gives me hope that there are organisations like Versus Arthritis and individuals who use their platform to raise awareness, educate people, and provide support.

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