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Bramley campaigner tackles stigma around Fibromyalgia with lifeline support group

Bramley’s Astrid Mahon has set up a support group for people in Leeds with life-changing Fibromyalgia. She spoke to community reporter Michelle Corns about the group, which offers a lifeline to people living with the condition…

Fibromyalgia is a painful and debilitating condition which is thought to affect 1.5 – 2 million people in the UK alone – although the actual figures are unknown, due to variables such as being misdiagnosed by medical professionals or even not seeking help for the symptoms.

Symptoms of fibromyalgia include widespread muscle pain, fatigue, headaches, Irritable Bowel Syndrome (IBS), sensitivity to noise and light, muscle weakness, poor memory (brain fog), reduced cognitive,  poor concentration, muscle spasms,  blurred vision, and restless leg syndrome – although the list is not exhaustive. 

Many medical professionals, however, still doubt the existence of fibromyalgia (FM) and as the sufferer often ‘looks well,’ this can lead to disbelief by family, friends, employers, and colleagues.

For someone suffering from chronic pain this can lead them feeling isolated and with little support.

Bramley resident Astrid Mahon, 37, who suffers from the condition herself, has taken the initiative to set up a welcoming, friendly support group on Facebook – Fibro Friends Leeds – which now has over 260 members across the city. 

The group originated on Zoom as part of Leeds City Council’s ‘Stop Loneliness’ project – which was aimed at people with Fibromyalgia. Astrid however, realised that she had the potential to reach out to many more people with the condition with a Facebook group. 

“There were about four or five of us initially then when I set up the fibro group,” Astrid laughs. “It was us and our friends and I was posting stuff – similar to what I do now really but there wasn’t really any kind of interaction.

“Then the council asked me to take over the Zoom group and I thought, right, really, I need to be doing a bit more if I want the group to work. I want to make sure that people have support, who’ve got fibro – whether they’ve been diagnosed or whether they are on their way to diagnosis, cos when I was diagnosed, there was nothing. When you’re told that you’ve got a life limiting and life-changing illness, then sent on your merry way – it’s a lot to deal with.”

Astrid advertised the group in different community groups and the group soon grew in popularity. 

“We’ve got just over 260 members now, so going from the end of last summer with about 20/30 members to this – is crazy, but it seems to be doing a lot of people a lot of good and it certainly helps me to do it.

“Then there was the Yorkshire Evening Post article and some people contacted me after seeing that. The group is a peer support group where people can meet other people with fibro, share experiences, learn from each other.”

Astrid also aims to use her own expertise to educate people about the condition – and how best to manage it. 

”My background is in social work specialising in trauma and worked for quite a while with children who have been sexually abused and their families, but that is about improving the public’s understanding of trauma.

“No-one really knows what causes it, but there is a bigger school of thought now – as years go on – that fibro is linked to traumatic experiences and how trauma changes the brain.

“I try to give information about that – amongst other things, so it’s giving people coping techniques, making sure people have a safe space basically, to share how they feel, ask questions and be able to speak to other people. I try to make it a much more positive place. There is a really big support community there now. The educational information just stands out and we’ve had a lot of positive feedback from people saying that’s really helpful and I’m actually supporting a couple of people individually as well, over on Zoom.”

Invisible illnesses like Fibromyalgia often have a stigma associated with them and suffers can be reluctant to disclose their health issues for fear of being discriminated against or excluded from social events.

“There is a huge stigma around fibro,” Astrid admits, “but people shouldn’t feel that they have to justify why they are ill, why they don’t work, why they do the things they can do.

“That (stigma) makes people think they shouldn’t talk about fibro. I want people to talk about it – also because there are still people in the medical profession who think that it’s all in the head or psychosomatic and it’s awful that people you know, have to experience that. That contributes to why there’s such a long waiting time to get a diagnosis.

“I read somewhere, and I think it’s probably American because there is so much more American research than over here, that the average person with fibro takes about seven years to get diagnosed.”

The National Institute for Health and Care Excellence (NICE), recently updated their guidelines about treatment for Fibromyalgia – particularly about restricting certain medications – such as gabapentin, for chronic pain – which Astrid suggests are to the detriment of sufferers. 

“There’s been no real guidance on how to deal with it, so depending on who your GP is, I know some people who’ve been on certain medications and painkillers for years, and they were just stopped – that was it, gone, done and then of course, you go into withdrawal. I’m not in that situation and I’m lucky that I’m supported by my GP – which is quite unheard of these days,” 

The new guidelines will have an impact on recently diagnosed patients as they may not be entitled to the medication, they need to alleviate their symptoms – suggesting instead, that they have therapy, which is costly and may not be available on the NHS.

“The NICE guidelines now say that people with chronic pain, should have therapy. A more technical perspective is – if you believe in the trauma kind of theory, then it’s in your brain but for people to be made to feel like it’s all psychological, that’s not the case but having trauma therapy can help if you are dealing with resolving traumatic issues, it can help in some circumstances.

“Then of course it has a massive knock-on effect on mental health services that are already stretched. Then you’ve got however many thousand people just in Leeds, adding to the list and you’ve got an even bigger wait time (for mental health services). They should also be offering complimentary therapies like acupuncture and most GPs won’t do that. A lot of people with fibro don’t work and they can’t afford it. They can’t afford to pay £80 for a massage or £60 for acupuncture – especially when the pain is ongoing, and it would need to be a regular thing.”

Leeds used to have a six-week programme at Chapel Allerton Hospital for newly diagnosed Fibromyalgia patients, but Astrid says there is nothing in the city anymore and had to travel to Harrogate for her own diagnosis.

“I was diagnosed in Harrogate because there weren’t’ any appointments in Leeds/Bradford and I was lucky that the registrar who diagnosed me, was really knowledgeable, helpful and gave me lots of advice. They offered me a six-week support group. I was driving then, but by the time I was able to attend the classes I had to stop driving because of the pain and everything so I didn’t get to go. Somebody in the group said there used to be groups in Leeds but there isn’t anything now.

“There used to be a pain clinic run by the NHS, but I think it’s been privatised now. It depends on the person that you get, the knowledge that they’ve got of fibro and their core belief about it as to what help you get. There isn’t an NHS-wide response as to how to deal with fibro – even just in Leeds, so many people have had different experiences.”

As well as the physical symptoms associated with Fibromyalgia, the condition also affects mental health. 

“It’s really important that people understand that fibro can have a massive impact on your mental health. I always see on the internet that one of the symptoms of fibromyalgia is depression, well actually, it’s not that fibromyalgia physiologically causes the depression, it’s the impact that it has on someone’s life that causes the depression.

“Then there is the anxiety about going out when you have been isolated for so long or going somewhere where you have to use crutches that you’ve never used before – or worrying about your IBS or any of your symptoms. Obviously, different people are affected by fibro in different ways. The biggest symptom that most people have is the widespread pain that never goes away and that can be debilitating, and you can’t do things that you used to do before.”

Astrid also runs two Zoom meet-ups a week, for group members – with guest speakers who give advice on pertinent issues that affect sufferers – including employment rights and disability benefits. 

“Fibromyalgia is now recognised in the UK as a disability, but under the equality act, under law any illness that is expected to last more than three months and has a significant impact on your daily life is classed as a disability. Yet, it’s still incredibly difficult for people with fibro to get PIP. I mean, it’s difficult for people with many different illnesses to get PIP but fibro certainly, everybody that I’ve spoken to about that subject, has either had to get Citizens Advice Bureau involved or they’ve had to go down the Mandatory Reconsideration route…many give up because I think, that process is so time-consuming and so energy-consuming that when they get knocked back, they think there is no-one going to help them and it’s too much for them to do anyway because of their anxiety and their energy levels. Disability aids aren’t cheap, and you don’t always get given say – a walking stick.”

Although research has been conducted for many years – though mostly in the US, there is still no definitive answer to the cause of Fibromyalgia as well as any congruent treatment plan – and certainly no cure. 

“A big thing for me is to encourage exercise because if you stop completely because of the pain, you lose those core muscles and it’s difficult to do anything. Also there is a pain cycle where you are frightened of pain, so you avoid exercise and the less exercise you do, the more pain you get.”

One common symptom that sufferers share, is the loss of cognitive functions – particularly the lack of concentration and poor memory. Sufferers often find themselves forgetting even simple words, describing their mind as a foggy haze.

“The brain fog is a really difficult one – losing your memory, losing words, IBS, restless leg syndrome as well. I get that but it’s not just in my legs, it’s everywhere, sometimes, I get like a twitch in my eye as well. There are so many symptoms, some are pretty much what everyone has and then some depend on the person. I guess that doesn’t make it easy to be managed by professionals.”

Astrid describes the process as a type of grief. 

“You can’t accept the limitations that fibro brings into your life until you kind of grieve for the life you had before – and that can be the toughest part.

“It’s taken me years and I still haven’t totally accepted that fibro has come into my life, because I lost my job, my house, my car and my relationship, family members, friends – you know – all of that stuff, so I’m still not fully accepting of it, but I’m in a place where I can get past it and I think that, that acceptance is a really big thing and once you find your limitations and you learn how to manage what you can and what you can’t do and learn to pace yourself and your spoons then it becomes a little bit more manageable. You can do a little more than you think you can do, but there isn’t much support to help you get to that point.”

The ‘spoon theory’ is one that was developed, to explain the energy limitations that are faced by sufferers of chronic, debilitating illness such as Fibromyalgia and Chronic Fatigue Syndrome. Astrid explains in more detail:

“It’s about imagining that you have twelve spoons which equals your energy for the day. Depending on how you’re feeling, you know, getting out of bed is one spoon, having a shower might be two spoons, having something to eat might be two spoons, then you’ve got whatever the rest of your day is.

“It was a way for people to explain to others who don’t understand chronic illness, how it impacts on you and your energy levels – and why, I guess – people can’t do things they used to before because fatigue is such a massive thing with fibro. That massively zaps your energy levels as well as being in pain, so we talk about spoon theory a lot and trying to preserve your spoons so that you’ve got enough energy to do what you want to accomplish that day. It helps people understand their limitations that day, really

“So that’s how it all came to and because of my own experiences, personally and professionally, I’ve felt that I might be able to use my skills to support people and hopefully, that’s what I’m doing. There is a real gap in support services for people with fibro and that’s hopefully a gap that I’m trying to fill.”

If you would like more information about the group or the condition itself, please contact:

Email: fibrofriendsleeds@gmail.com

Facebook: https://m.facebook.com/groups/fibrofriendsleeds/

For more information and statistics: http://www.fmauk.org.

John Baron Thu, 27 Feb 2020, 10:00 to John, me

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