'A lot of people suffer in silence': Bramley woman building fibromyalgia support network for sufferers in Leeds

Fibromyalgia sufferers in Leeds are being offered more opportunities to connect with each other by a Bramley woman who has been affected 'physically and mentally' by the condition.

By Tom Coates
Tuesday, 26th April 2022, 4:29 pm
Updated Tuesday, 26th April 2022, 5:39 pm

Astrid Mahon, 37, took responsibility for running a weekly online meet-up on Fridays which was first established by Leeds City Council and has since taken steps to offer more opportunities for support and connection with fellow sufferers.

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She has established a Sunday meeting and a Facebook group called 'Fibro Friends', and has now set 12 May as the date for their first face-to-face meeting as it marks International Fibromyalgia Awareness Day.

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Astrid Mahon is building a support network for Leeds residents suffering with fibromyalgia. Credit: James Hardisty

"I know there's a lot of people with fibromyalgia who are diagnosed and left and don't know what to do," she explained.

"I didn't know anybody who had fibromyalgia, nobody that I knew had heard of it before I was diagnosed either, so I really kind of felt very much on my own. I think I hid how in pain I was for a very long time until I couldn't keep doing it anymore.

"A lot of people suffer in silence. I've been very surprised but happy that a lot of people have come forward."

Astrid was diagnosed with the condition around five years ago and symptoms include widespread pain and extreme tiredness, although there is currently no cure.

Friendships have developed in the Facebook group Astrid Mahon has set up. Credit: James Hardisty

According to the NHS website, Fibromyalgia can also cause muscle stiffness, problems with mental processes, headaches and irritable bowel syndrome.

The Facebook group now has 169 members although the plan is to reach as many sufferers as possible and integrate them within the online community Astrid is developing.

"I've been surprised but blown away, all of a sudden we've had so many more members, it's just been great," she said.

"I'm really pleased that it's helping people but I just want to get it out there for more people because I know there's bound to be more than 169 people in Leeds with fibromyalgia unfortunately. It's been amazing but I know there's more people we can reach and that's what I really want to do.

"I wanted to create a community online where you could talk to people without being seen, [where] you could talk to people no matter how much energy you had, a place for people to meet other people in Leeds with the same condition and make friendships with those people, but also an environment where we can learn from each other."

A background in social work and therapeutic social work has prepared Astrid for supporting others but members of the group are directed towards additional specialist help.

"I've got a background in social work and therapeutic social work, I can use some of those skills to help people," she explained.

"A lot of people with fibromyalgia have anxiety, depression and suffer with panic attacks and things like that, so I can help with that, but also for me to research other stuff to put on there helps me as well.

"I get so much out of it and it makes me feel so much better to know other people are getting something out of it as well."

Although there is ambition for the group to grow in size, members are already reaping the benefits and friendships have developed within it.

There has also been a noticeable increase in engagement with the posts published by Astrid on a regular basis.

"Originally, when I started it, it was just me posting to myself," Astrid admitted.

"I get a lot more engagement now, people commenting on the posts and talking to each other, people are making friends without me being involved, which is great.

"I've got a Gmail account which is for the group and have had people email me asking for extra support which I've been able to signpost on to people who need extra help, or just wanting a chat, or saying they're finding the Facebook group really helpful."

The name of the group on Facebook is 'Fibro Friends Leeds' and any queries can be sent to [email protected]