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Matthew Dobson: My experience with fibromyalgia

"I've had fibromyalgia and chronic fatigue syndrome for 17 years. At my worse, I was on multiple, high doses of pain management medication and off work on disability benefits for approx 18 months. I still need medication now, but I'm on a much lower dose/amount of days it's needed.

With support and work from myself, on mental health/anxiety as well as managing fibromyalgia and CFS.

Lockdown came into place and I was worried about the lack of daily movement, which is one of the worse things for my fibromyalgia. Sitting around, the pain building, just can't get comfortable, needing to sleep, feeling I'm letting my family down, all this can come about on my worst days.

So, I decided I'd try and start working out, with the aim to lose a bit of weight, get a bit fitter, but to move my legs as often as I can, to keep the pain managed as best I can.

5 months later, I feel a lot better in myself, and decided to buy a cross trainer, to see how that helps with cardio. After a few weeks on that, it was going well, so I decided I wanted to challenge myself.

This challenge is to help me have a goal, keep up with my fitness, but also to push myself a bit. I've done a program on pacing before, which was useful, but I felt I'd gone "too protective" and worrying about the impact on my fibromyalgia and CFS. Which has led to me not doing things I wanted to do. This challenge is to try and show me that I can do more than I think, even if it's 1% more and it's helping me recognise when I really need to rest, or when I can do a 20 min workout or a 10 min workout. All this is a big positive on my mental health, as I'm more aware of my capabilities and can do more things with my family and 2 children (Maximus and Enzo) that I would have backed away from over the years, due to me worrying about a flare up.

Now, I still worry and have flare ups, I'm not cured, it's a lifelong illness, but I feel I can catch it early and do what I need to do so the flare up lasts a day, instead of a week. I also understand and accept that some days I need to sleep or say no to activities, but that means I can do more activities in the future. It's a balance really, but is working out well.

The challenge I've set it so cross train the 90miles/145km distance of Hadrian's Wall (I love history!) I set myself 2 months to do the challenge, so it gives me chance to have bad days, but the reality is, if it takes a year, it takes a year. And I'm ok with that.

I feel people need to understand what fibromyalgia is. I'm 37 years old and look normal. I got this disability when I was 20. I've had 17 years of people really not understanding what it means to be disabled with something like fibromyalgia and CFS, but not "look" disabled. For me to say I'm tired or in pain, people link it to their tiredness or pain and think I'm exaggerating or lazy, not understanding the levels of pain and tiredness these disabilities can cause.

I feel I'm lucky, I've got more freedom and movement and ability than I have in years. But I've been a blue badge holder, off work, on disability benefits with the same disability I have now, just at a different level. That's hard to understand for people as well, so the more awareness of this we can raise, the better for people with friends and family members with it, better for people newly diagnosed (when I was diagnosed there wasn't anything readily available. It was about 8 years in before I was offered group support and therapy) and better for sufferers like myself, who can see that things can improve and get better."

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