“Fibromyalgia may be invisible to you, but it’s very real to me.”

01 July 2021
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Stephen, 37, injured his neck at school when he was 14 and experienced ongoing pain for many years, including hot stabbing sensations, memory problems and extreme fatigue.

It took nearly 14 years for him to get his fibromyalgia diagnosis. Stephen also has osteoarthritis, high blood pressure, Coeliac disease, and sleep apnea.

“I injured my neck at secondary school.”

As a result of the injury, I had pain all over and hot stabbing sensations. My neck would click and grind and over time the osteoarthritis pain has got significantly worse.

Also, I was getting confused and finding it hard to get words out or to locate them from my memory. I had extreme fatigue.

I was eventually diagnosed with fibromyalgia around five years ago. It’s taken about 14 years to be diagnosed. I felt I was going mad. No one was listening.

Balancing life with so many disabilities is really tough. I find that if my neck flares up it affects my fibromyalgia. Then I become more tired, and my blood pressure increases too. It’s a vicious circle!

“I was relieved to have a diagnosis. I knew something wasn’t right.”

I’d never heard of fibromyalgia, so I didn’t know anything. When I looked it up on Google, I had every symptom.

The rheumatologist gave me a leaflet and that was it. No follow up appointment. I felt like banging my head against a brick wall. I’d waited that long for a diagnosis and all I got was a leaflet.

I found Fibromyalgia Action UK (FMAUK) via Twitter and others with fibromyalgia online. Not many men though! I found that fibromyalgia affects 1 in 20 in the UK and out of that, only 1 in 7 is male.

I’ve used Versus Arthritis’ website. It’s great that I can get information and support there too, as it covers several of my conditions. Especially the section on fibromyalgia.

It’s encouraging to see awareness of fibromyalgia is improving. I would guess a lot of people have arthritis and fibromyalgia. So, thank you Versus Arthritis for highlighting on your website.

“What’s it like living with fibromyalgia?”

Where do I start? I wouldn’t say I’m living; it’s more surviving one day at a time.

I had to give my job up as I was in too much pain.

There are days I can’t even put my socks on, so I need help and my boys do that (they are age 13 and 11). It’s heartbreaking having to rely on them, but they never complain. They’re amazing.

Exercise is difficult. I used to run 6-10 miles effortlessly. Now getting up the stairs is a huge challenge. Impossible on bad days.

My motivation to be here for my wife and children keeps me going. I can’t do what a lot of dads do, but I can still be a great dad.

“I’ve found that not many people actually understand fibromyalgia.”

It’s a great comfort chatting to others online, as people with fibromyalgia just ‘get it’ and understand how I’m feeling.

My condition has most definitely had an impact on my mental health. Fibromyalgia can be really isolating.

My biggest support has been from my wife and children. Without them I wouldn’t be here today. There was a time I contemplated ending it all. I was in severe pain constantly. The pain was too much even with Fentanyl and Oxynorm. I wasn’t living. I was barely surviving.

“I'm a ‘typical male’ that struggles to reveal how I truly feel.”

I’m getting better at sharing, although I find it much easier to write how I feel, rather than express things verbally. Communication in whatever form is vital.

Me and my wife on a good day will go to a local park or shopping. She’s keen to get me out of the house (when I’m able to) for a walk (or wheelchair or mobility scooter) around the local park.

I really enjoy watching my two boys at sport. Lewis (my youngest) is a very good footballer and Kieran is athletics mad.

I can’t watch films because I can’t concentrate that long but I can manage time on the Xbox playing badly at FIFA. It’s always dependent on my pain levels because even a game on Xbox can hurt.

“Finding the right words to describe fibromyalgia is so hard.”

I want people to know fibromyalgia may be invisible to you, but it’s very real to me. It affects women much more - but men can and do get fibromyalgia. I’m living proof!

To others who are recently diagnosed I’d tell them to look on websites like Versus Arthritis and FMAUK. Social media is amazing for finding others in the same position.

Three things that have helped me are:

  • go to bed at the same time
  • check out social media for groups for support and
  • lastly, and most importantly in my opinion, pace yourself. Listen to your body, mind, and rest.

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