Zoe runs for FMA UK

Hi! My name is Zoe, and I am running two half-marathons for FMA UK along with my friend Emily, who is running for the Lullaby Trust.

We met while studying for our undergrads at the Uni of Oxford and quickly became close friends. We love having a natter, going out together, and supporting the arts. It was only later on that we realised we were both drawn to running (on occasion!) and started attending Parkrun together, where we revelled in a joyous sense of community. As one does when they surmount the mighty 5km, we soon set our sights on running a half marathon - and then we doubled our aspirations, deciding that we would run not one, but two half marathons, less than 5 months apart!

Training for our first half marathon over a very hot and cold summer in the UK has proven both challenging and exhilarating. Between us, we have faced high heat and humidity, huge inclines, falls, injuries, bouts of illness, and the cumulative fatigue of showing up each day, even when we didn’t feel like it. Completing the Oxford Half on October 15th will be a momentous achievement for us both, having never run that far in our lives! But the discipline required to maintain training alongside our intensive Masters degrees at Oxford and Cambridge so that we may complete our second half marathon - the Cambridge Half - on March 3rd perhaps represents an even greater challenge. However, it is one that we are both keen to overcome because of the many benefits of physical exercise for emotional wellbeing and the causes that drive us: The Lullaby Trust and Fibromyalgia Action UK.

I have chosen to run for Fibromyalgia Action UK (FMA UK) in memory of my dear Nan, who experienced the often-crippling consequences of fibromyalgia for at least a quarter of her life. For those who are not familiar with the condition, fibromyalgia is a chronic pain condition which is widely understood to be irreversible. While the symptoms can wax and wane and vary from person to person, fibromyalgia is typically associated with muscle stiffness and tenderness, persistent fatigue, and sleep disturbance. The onset can be traumatic, but in my Nan’s case, her symptoms developed gradually and worsened over time. Some days, she could hardly move at all and struggled to complete daily tasks because of the excruciating pain and exhaustion that she experienced.

I think one of the biggest challenges that she faced was a lack of awareness and understanding about the level of pain she had to endure each day and the impact it was having on all aspects of her life. She could often be dismissed as exaggerating or moaning about her problems when sometimes it was a battle for her just getting out of bed and making it through the day - especially as someone living alone with a number of other health issues that she needed to manage. Certainly, there is a huge amount of stigma around chronic pain in general and other ‘invisible’ disabilities, which are difficult for many people to perceive. This may ultimately have fed into her reluctance to ask for or accept help, but with your support in aid of FMA UK, I wish to buck this trend.

FMA UK is a brilliant charity which is helping to ensure that people living with fibromyalgia are better understood, never feel alone in their experiences, and can access all the support they need to continue doing the things they love with the people they love. Your sponsorship will help to fund life-enhancing services such as their national helpline, local support groups, online forums, and information booklets for those affected by fibromyalgia as well as healthcare professionals.

In December 2021, I sustained multiple neck fractures while skiing in the Alps and have been working hard to recover my full strength and mobility ever since - running has played a major part in that. My Nan’s life experiences made her extremely compassionate, which makes me relieved that she never had to hear about my accident because I can only imagine the emotional toll it would have had on her.

The reason I mention this is because I have never felt more connected to my Nan than during my rehabilitation. The overwhelming pain like knives in my skin, the sleepless nights and all the anxiety, the difficulty walking and completing daily tasks, the hating feeling dependent on others and not wanting to be a burden, the feeling trapped in my home and frustrated by the limits of my body. I am lucky that my pain was only ever temporary, and I have felt strengthened by my Nan’s resolve every step of the way. She is my hero. I’m doing this for her and others in a similar position.

To donate please visit our fundraising campaign, click here. Please note, all donations made to our page are being split 50/50 with FMA UK and the Lullaby Trust.

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Martyn and Jamie take on the National Three Peaks Challenge for Fibro

“My name is Martyn Dodds, and I want to raise awareness about the chronic condition of Fibromyalgia. My reasons for choosing to fundraise for FMA UK are very personal. This seems to be the only way that most people know about Fibro and understand the struggles that come with it, and for this reason, I want to contribute to making a change.

My mum Debra has suffered with Fibromyalgia for a number of years now. She has her good days, and she has her bad. What is admirable is the way, even through her struggles, she hides her suffering to the best of her ability.

Seeing how she deals with the tiredness, the pain, and the absolute exhaustion that is unexplainable is upsetting. The fact that still Fibromyalgia is mostly unheard of makes things tougher. When people understand about the condition and the links to other conditions, that little bit of consideration would make a world of difference to any sufferers.

Hopefully, new developments will keep coming, and the effects of Fibro can be controlled better.

To help raise awareness, myself and a close friend, Jamie, decided to take on a challenge. One that was going to test us mentally and physically, where we will feel exhaustion and likely some pain at times throughout the challenge. For this reason, we decided to attempt The National Three Peaks. That includes climbing Ben Nevis in Scotland, Scafell Pike in England, and Snowdon in Wales (or Yr Wyddfa as it now likes to be known!).

Oh! And we had to do all this within 24 hours, including driving time.

So far, we have raised £805, which we would like to thank everybody who has donated for their support and generosity.

We even made it into our local newspaper. Click here to read how we got on with our challenge for fibro..

To donate to our fundraising campaign, please visit our JustGiving page.&rquot;

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Purdy takes on the Great North Run for FMA UK

“Hi, my name is Purdy and I live with fibromyalgia and have done so for over 10 years. I work full-time as PCSO for North Wales Police.

I had never ever thought of doing a half marathon until an officer from another force, who set up our emergency services fibromyalgia support group, sent out an email to say there were charity spaces available for the Great North Run, to raise funds for Fibromyalgia Action UK. It was a bit of a spur-of-the-moment thing, and I emailed back to say I’d give it a go. Then the reality of what I had just done hit me! I really needed to do more than the park run a couple of times a month. So I started training, I had a few setbacks, flare-ups and days in bed with pain and fatigue, but I’ve kept going.

At the end of May, I got a tick bite, I didn’t notice it for about a week and then had 3 weeks of antibiotics for Lyme disease, which left me feeling rough. I was not giving up and the training continued but reduced. Then on 1st July I fractured my feet but didn’t know for the first 3 weeks, so I was still running, but not much as it was a little sore. I then found out it was a fractured metatarsal, not good. I was advised not to run for 3 weeks and so you see my training program (written on the blackboard in the kitchen) was completely out the window, I am now back to training with only a week to go as I am determined to complete this run, it may be slow and May be painful but I aim to reach the finish line on the same day I set off for the start line.

My main aim is to raise awareness of fibromyalgia and if there is one thing that helps with pain and fatigue for me, it is it’s to keep moving. I love to challenge myself, so why wouldn’t I at least try the Great North Run? I don’t know how I’m going to do it, but I’m going to give it everything I’ve got.”

You can support Purdy's GNR2023 campaign by donating to her fundraising page here.

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Kirsty Takes on the Great North Run 2023 for FMA UK

click here to donate to Kirsty's fundraising campaign.

“It has been nearly two years since I was diagnosed with Fibromyalgia (FMS), despite seeking a diagnosis for at least five years.

My health had slowly been declining since 2016, and I had been experiencing more and more pain, lethargy and brain fog which had increased my existing anxiety and depression. Every visit to the GP and numerous tests came up with nothing, and I felt as if maybe I was imagining it all.

This eventually led to a mental breakdown, whereby I was unable to leave the house and take part in the activities I once loved. I felt alone, isolated and hopeless. Once an active, outgoing person, I had turned into a shell of my former self. I thought my life, as I once knew it, was over. It had affected my relationships with my husband, friends and family. I never knew from one day to the next how I would feel, and plans were often ruined. Eventually, it was just easier to stay home, sit on my settee and watch television. I was in constant pain and could spend several days in bed, never feeling like I had had any sleep.

Though I am managing this much better currently, my symptoms now vary, and I still have days where I am totally exhausted, can’t get out of bed and experience immense pain. More recently, I have been experiencing grip issues and have started to be a bit clumsy and forgetful. However, I am a member of a local FMS support group, so now know this is nothing to be ashamed of, and I am not on my own in experiencing these symptoms.

FMS was not entirely new to me as my mum had been diagnosed after a three-year battle nearly 20 years ago. Back then, we had no clue what the condition was, its symptoms, how to treat it and what support or assistance could be accessed. We quickly found out there was very little information and support out there. It was difficult to find anyone else locally with FMS, and my mum also broke down, believing she could no longer do anything anymore. The change in her was heartbreaking for me and my family.

At the time, I was a fitness instructor and was able to research safe and effective ways to get her active again. This was the starting point, and from there, her confidence grew, and she has never looked back. Yes, she often struggles but she provides me with an amazing role model and example of how to live well with FMS. It isn’t always easy, some days are hard, but it can be done.

Fibromyalgia Action UK (FMA UK) is so important. Not only does it raise vital funds, but it provides information about the condition and allows people to access reliable information with suggested treatments and advice. The charity is so important in raising the awareness and profile of FMS so it can be better understood by everyone, not only us who have it. This understanding can aid in better support, empathy, diagnosis and treatment, which will make such a dramatic difference to those with FMS. FMA UK’s presence makes us feel seen, listened to and more importantly, believed. We feel less alone and know there are charities and people out there, who understand what we are going through on those bad days when flare-ups happen, and we feel exhausted and low.

When I saw that FMA UK had charity places for the Great North Run, I knew I had to put my name forward. Before my diagnosis, I had been a keen runner, regularly completing half marathons and even the TCS New York Marathon in 2019. At the end of last year, I had the confidence to sign up for a local couch to 5k course with Notts Women’s Runners after thinking I’d never be able to run again. It was hard, there were tears, and I had to come to terms with the fact I’d never be the runner I once was.

I am pleased to say that I graduated (with my mum) in December 2022, and we did regular 5k’s with our club, The Mansfield Maidens. I had no plans to run any further than this and never thought I’d run a half marathon again. When I found out I had gotten a charity place with FMA UK for the GNR 2023, I cried with joy. I had never run for a charity or participated in the GNR, but I feel it is my opportunity to raise money for a fantastic charity, give back to the FMS community and raise awareness of what it is like with FMS, how we can be supported, and to aid further understanding of the condition. Most importantly, I want to show that your life is not over, and you can do still things and live your life. I am not the same, but I am learning to live with FMS and adapt my life slightly differently.

The fundraising is going well, having exceeded my original target, I hope to raise even more money before I cross the finish line. The training is hard, but I am slowly progressing, keep on going and am determined to fly the flag high for FMA UK in what is the biggest and best half marathon in the world. Wish me luck. I promise that I will not let us down.”

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Business Owner Mel Fundraises and Raises Awareness of Fibro Through Sales

“I’m Mel, owner and creator at MawsBoutique.com.

At about 17, I became incredibly poorly literally overnight; my parents got the doctor to make a house call, my blood was so thick he could barely draw it, thought I had late-stage meningitis and told my parents to be prepared to lose me.

I don’t remember anything from this time, except I lost a lot of weight. It turned out I had multiple viral and bacterial infections all together.

Since this time, I've never quite bounced back from illnesses; each illness takes a further toll on my body.

Eventually, in my 30s, my doctor diagnosed my constant morphing symptoms as Fibromyalgia and Chronic Fatigue Syndrome. We tried multiple concoctions of medications and exercise, which never particularly worked that well. As I build tolerance quickly, when Oramorph stopped working, I thought that was it for any type of pain relief.

I started crafting as CBT in 2018 at my doctor's suggestion, which, whilst I was working helped take my mind off the pain, but afterwards, it was tenfold. I tried many different crafts until I found my passion for bath and beauty products. With this new love, I started creating my own recipes, most of which would be put to one side and revisited many times.

I have gone on to create some products that I find to be personally beneficial in easing muscles and helping me to relax into a better night's sleep.

Before getting these products cosmetically assessed, samples were sent out to fellow sufferers in return for honest feedback, which blew me away. With these products being aimed towards fellow sufferers, I thought it only fair to give back to a Fibromyalgia charity from the sales. I believe if your products are aimed at a specific condition, it’s only fair to support those who support others.

After doing some research, I decided on FMA UK, a charity that is active in support and fundraising to raise awareness. As a microbusiness, my donations are never going to be huge, but I’m so proud of each and every sale and the fact that people are getting some type of relief as a result.

Fibromyalgia has robbed me of being the mother, wife, daughter and friend I wanted to be. I feel old, way before my time. I have become more and more reclusive as the thought of the pain after an event is enough to say no to most things. My short-term memories slip away from me, brain fog and confusion are a daily part of my life, and planning a day around pain and aching is a daily occurrence and the new normal, but as many sufferers know, a smile doesn’t mean we’re ok, it just means after many years we get better at masking it.

Hopefully, with enough awareness and fundraising, eventually, there will be a better understanding of Fibromyalgia and CFS/ME and maybe even something to truly ease the suffering.”

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Alison and team take on Potters 'Arf

“Hello, my name is Alison and I have just taken part in my first marathon (walking) to raise funds for the charity Fibromyalgia Action UK. I want to share my story about why I chose to raise funds for this charity as someone very special to me suffers with Fibromyalgia and struggles as she faces daily life.

Twelve months ago whilst in our local city centre, Hanley, Stoke-on-Trent, celebrating my youngest daughter, Amy’s, birthday, the participants in the Potters ’Arf were crossing the finish line. We stopped to applaud and cheer their achievements. Whilst there we discovered that there was also a walking race over the same distance and course. We said, “We can do that, let’s do a girls challenge”. At this point we realised it wouldn’t be practical for my older daughter, Charlotte, to do this as she is a sufferer of several conditions, Fibromyalgia being one of them. Her partner, James, kindly agreed to join us and so the decision was taken to register for the race and to support Fibromyalgia Action UK.

Charlotte, my daughter, has suffered with this condition for many years. Like many with this condition, she struggles with things many of us take for granted. It causes her widespread pain throughout her whole body, which makes sleeping difficult and results in her being extremely fatigued. She also suffers from IBS as a consequence which results in her having low tolerance of some foods. In addition to this, it causes her to have sensitivity to light and temperature making everyday life very difficult. We chose this charity to support to try and get the condition out more in the public eye. It can be a hugely debilitating condition for which there is no cure and people need to recognise all disabilities are not visible. More exposure of this condition will help to educate people about the effects this condition can have on an individual and continue to support those affected.

Walking is one of our favourite hobbies, and I thought combining this passion with the desire to help others would be perfect. However, we did not realise how much of a challenge the Potters ‘Alf would be. Training has not always been easy with a full-time job but 13.1 miles long and tackling the infamous ‘heartbreak hill’ we have truly thrown our all into this challenge in aid of a brilliant cause.

We walked for my daughter and everyone who is suffering, knowing every step we took is towards a better understanding and future for those who suffer.

I am proud to be supporting Fibromyalgia Action UK and I hope that our efforts will make a difference for all those affected.

I would like to thank Amy and James for walking with me and John, Charlotte and Jack our backup crew for all their support. Also, to each and every person who has sponsored us and given their support to this challenge.”

To donate at Alison and her team's fundraising page, please click here.

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Durham Univerisity Jazz Society raises awareness of fibro and funds for FMA UK

UPDATE: since their Charity Jazz Ball, Durham University Jazz Society have won the Palatinate award for Best Music Outreach and Fundraising 2023!

Durham University Jazz Society recently held a Charity Jazz Ball in aid of Fibromyalgia Action UK. Their Social and Outreach Officer, Athena, recently told us why she chose to fundraise for FMA UK and raise awareness of fibro.

“Fibromyalgia has made my mum’s life difficult in a way I could never even begin to imagine. It’s made working and managing a house extremely challenging, but more than that, it has deprived her of precious life experiences with her family.

When I was younger, I used to want to go to a theme park every year for my birthday, and so we would all go as a family. Gradually over the years, it became more and more taxing for my mum to go on the rides, and soon enough, she was only able to sit and watch while my dad took us on the rides.

Similarly, as a musician, I’ve always enjoyed going to concerts, but the whole ordeal of attending a concert over time has become too much for my mum, and so again, my dad became my concert buddy. Don’t get me wrong, my dad has always been the best concert buddy, but my heart hurts for my mum knowing that she can only watch on from the sidelines.

This by no means, however, is to say that my mum has never been involved. She is the best mum I could ever ask for, and has time and time again sacrificed her own comfort and exacerbated her symptoms in order to prioritise my and my sister’s needs and support us in her own unique way when that sacrifice is not possible.

Hence, I chose to support Fibromyalgia UK as they help those who have the condition in a variety of hands-on and life-changing ways. A couple of the things within the long list of ways in which they help out that hugely stuck out to me were the benefits support and their involvement with medical professionals. It is rare to find a charity that advocate so strongly for the people they are supporting with such complex issues that are often hidden behind closed doors. Sufferers of fibromyalgia get very little support from medical professionals and are left in the dark about what is happening to their bodies and what they can do to help themselves and so having a charity like Fibromyalgia UK to represent them in a professional environment is vital to understanding how to still live a fulfilling life.

Durham University students love nothing more than a ball, and the Jazz Society host a charity ball each year for their members. Being the 2022-23 Social and Outreach Officer, planning the ball fell to me this year, and I thought there couldn’t be a better way to represent Fibromyalgia than with this event. We hired three jazz bands as well as a party band, all student-led, to entertain our eighty-three guests as well as putting on a meal for them in Durham Masonic Hall.

My mum has taught me that having the energy and facilities to be able to play music and perform is valuable, and so I wanted to provide as many people as possible with the opportunity to do what they love for a great cause. The meal also gave the tired students a chance to sit back and relax and not need to worry about cooking for themselves, another challenge that people with Fibromyalgia face.

Ultimately, the ball was a blast, a cracking party which, for me personally, was a chance to celebrate my mum and all the amazing things she has achieved despite her condition. I’ll never be able to repay my mum for all of the sacrifices she has made for me to have such a fulfilling life so full of love so the least I could do was honour her with this ball.”

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Gemma's 100 Day Fibro Fitness Challenge

Gemma is taking part in a fitness challenge for FMA UK, and you can donate to her fundraising here. Read on to hear more about why she chose to take part in a challenge and raise awareness of fibromyalgia.

“I was diagnosed 4-5 years ago, and initially my life completely changed. It took approximately 18 months to get my diagnosis, and during that time, I became depressed, frustrated, and generally felt worthless. I tried medication initially and found that, for various reasons, it didn't work for me. I eventually came off the medication about 2-3 years ago and started joining support and advice groups like Fibromyalgia Action UK and researching alternatives. It has taken years, but I have found ways to manage my condition. I work full-time and have two daughters, two stepdaughters and a husband. We love festivals and outdoor adventures, but I have had to learn and accept my limits. I don't let my condition stop me from experiencing anything, but I have to make sure I don't physically or mentally push myself too far. I still get days where I am fed up with my limitations, and I can't do everything I want to, but overall, I have found a good balance.

I think it is very important to increase awareness of Fibromyalgia and also to share experiences of how different people manage the condition. I have seen the advice and support Fibromyalgia Action UK offer people and want to help to contribute to their important work.”

To donate, please visit my JustGiving page here.

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Grace runs her first half-marthon for FMA UK

“Hi I’m Grace and I have just ran my first half marathon and raised over £1,200 for FMA UK.

I decided to raise money and help raise awareness of fibromyalgia because this is something that affects my mum every day. Watching my mum suffer in many ways, from brain fog and low mood to burning skin, muscle pains and fatigue, as well as other symptoms, is awful, and it’s not something most people know about. My mum has raised a family of five and has always been the glue between us, arranging dinners and parties and supporting us however she can, even when she’s not up to it.

Whilst this isn’t one of the more commonly known medical conditions, it affects so many lives, and so many people are struggling with it every day. So I think it’s incredibly important to raise awareness where we can, and that’s why I chose FMA UK as my charity to run for!

FMA UK and their volunteers are working hard to support those people who need it the most, and I’m so happy I could help them just a little bit along the way!

Running is something I have got into the last couple of years but it doesn’t come naturally to me so sticking to the training plan and making sure I’ve got time in my day to get out for a run has shown me a level of dedication I didn’t know I had and I’d like my mum to know she has that same drive and determination when she gets up everyday to get on with things even when she doesn’t feel her best.

Running is something I have gotten into the last couple of years, but it doesn’t come naturally to me, so sticking to the training plan and making sure I’ve got time in my day to get out for a run has shown me a level of dedication I didn’t know I had, and I’d like my mum to know she has that same drive and determination when she gets up every day to get on with things, even when she doesn’t feel her best.

Here’s to raising awareness and helping people wherever possible!

To donate, please visit my JustGiving page here.”

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Josh Runs his First Marathon for his Wife Sophie and FMA UK

“Hi, my name is Josh, and I have just run my first Marathon to raise funds for the charity FMA UK. Today, I want to share a story about someone very important to me and the struggles she faces daily.

My wife, Sophie suffers from fibromyalgia, which causes chronic pain, fatigue, and brain fog, as well as other conditions. while helping Sophie with Fibro, I came to realise many people are unaware of it or misunderstand it.

Living with fibromyalgia is not easy. Sophie like many other fibro warriors struggles to do things that many of us take for granted, like going shopping, doing household chores, or even just getting out of bed in the morning. Some days, she is in so much pain that she cannot leave the house at all. We have strategically placed heated blankets in the house.

Despite these challenges, my wife is powerful and resilient. She refuses to let her condition define her or hold her back. by making adjustments and accommodations along the way. such as being able to work from home, and changing things in the house, such as converting the bath to include a sit-down shower.

As her husband, I want to do everything I can to support her. That's why I think it's so important to raise awareness of fibromyalgia and support organisations like Fibromyalgia Action UK, which work to provide information, support, encouragement, and resources to people with this condition.

To help raise awareness and funds for this important cause, I decided to participate in the Manchester Marathon. Running is one of my favourite hobbies, and I thought it would be a great way to combine my passion with my desire to help others.

Training for a marathon is not easy, especially when you have a full-time job and other responsibilities. But every time I hit the pavement, I think about my wife and the challenges she faces. So I run for both of us in our marriage, knowing that every step I take is a step towards a better understanding of fibromyalgia and a brighter future for those who suffer from it.

I am proud to be supporting Fibromyalgia Action UK and hope that my efforts can make a difference in the lives of those affected by this condition. I encourage anyone interested in learning more about fibromyalgia or supporting this cause to check out the resources available through Fibromyalgia Action UK on their Facebook page.

By participating in the Manchester Marathon and supporting this important cause, I hope to raise awareness and funds for fibromyalgia research and support. Fibromyalgia is a hidden condition that affects millions of people worldwide, including my wife. It's a daily struggle to manage the pain and other symptoms associated with this condition, but with support from organisations like Fibromyalgia Action UK, people with fibromyalgia can get the help they need to live their lives to the fullest.

Thanks for your time for reading.”

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Leigh-Ann takes on the Great Bristol Run 10k

Read on to hear why Fibromyalgia is a cause dear to Leigh-Ann.

“This May 14th I’m running my first ever 10k in order to raise money for FMA UK.

Now, anyone who knows me knows that cardio has never really been my forte! But that’s kind of the point. It was important to me to do something that pushed me, something that was new. And I know that the beloved family friend we lost due to complications related to Fibromyalgia in 2020 would have found it entertaining to hear about my desperate pant heavy runs and be proud of me for giving it a good go (as well as poking gentle fun!)

Though not blood, that friend was family to me and losing her was devastating. I think about her every day. I’m running this 10k in her memory, and though 10k isn’t far for a lot of people, for me it’s about dedicating myself to a goal and following through. For her.

Watching what she went through was horrible, but she came at every day with kindness and tenacity, and I have unimaginable admiration for that. There was very little I could do to help her aside from being there as a friend, hearing her out and supporting in the small ways that I could. I hope that the money I raise through this 10k means that somebody else is able to have the professional and community support that they deserve and that they don’t have to deal without the people around them that share their experiences in the way she so often had to.

I’ve had the pleasure of working with FMA UK in the past and know that there’s so much heart and care behind what they’re doing. I’m honoured to play even a small part of raising the funds to allow them to continue their amazing work.

I’ll be thinking of my friend, the whole FMA UK crew and most importantly, all those who live with Fibromyalgia when I cross that finish line. I know I can’t do much, but I really hope to be able to support in any small way I can.”

Please support Leigh-Ann's fundraising campaign by donating here at Enthuse.

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Asla's Cake Sale in aid of FMA UK

Asla shared her personal story of fundraising in honour of her mum. “My name is Asla Shaaban, and I’m in year 8 (and) this is how I raised money and awareness of fibromyalgia.

I wanted to raise awareness as my mum has it, and I know how it isn’t well-known, and some people think that it isn’t real, even when it is.

I had a week to prepare for a bake sale on Fibromyalgia Day. I was able to do it with the help of my friends and my family. My friends helped me with baking and promoting it and with everything. We made cookies, cupcakes, pizza wheels and one big cake. So many people came to buy food, and we were sold out within 20 minutes! In total, we raised £73 for FMA UK.

I’d like to give a special mention to my friends: Swara and Flavia for baking; Manasika and Sarah for helping decorate; and Anna and Maisie for helping me out with taking care of the money. I’d like to give thanks to everyone who supported and encouraged me, including my teacher: Ms Jain as she supervised this event and helped me prepare and promote it.

I hope this has helped, and I wish to continue doing events like these in the future.”

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Jo goes alcohol-free for 12 months in aid of FMA UK

Jo tells us in her own words why she has taken on 1 year challenge to remain alcohol-free.

“After about 2 years of not understanding why I had the following symptoms;

• - pain all over my body.
• - poor concentration.
• - IBS symptoms.
• - depression.
• - fatigue.
• - headaches.

I went to see my GP; luckily, I had been keeping a diary over the last year documenting my pain level and food/drink so I could show her my symptoms. I was diagnosed with fibromyalgia. I had actually heard of this but didn't really know much about it or what it meant for me going forward.

I then spent many hours researching anything I could find relating to fibromyalgia, and that's when I came across FMA UK. I was really impressed with how much useful information and facts there were and how it was all run by volunteers! I already felt so much happier because I'd found support and information. Help like this is very valuable.

The way fibromyalgia has affected my life is that I have to regularly take strong pain relief. The worst part for me personally is that my mental health has suffered; I have mild depression and find it difficult to concentrate as a result. This has led me to reduce my hours at work to part-time.

I suffered severe depression about 20 years ago, so to have it come back, if only mild, as a symptom of fibromyalgia was like a step backwards for me!! Once I got help from my GP and FMA UK, I started to understand the condition and realised "I'm not alone".

Throughout the years, I have fundraised for various different charities. This year I have chosen FMA UK because I realise how many people actually suffer from the condition. Plus, being diagnosed with fibro, I thought it just made sense.

I chose to fundraise by giving up Alcohol for 12 months! The reason I chose this fundraising idea was to improve my mental health, as alcohol can, in the long term, cause problems as it's linked to a range of mental health issues. I was drinking every day as an escape. I didn't want this to be my lifestyle or to determine who I was. It will also positively benefit my condition!

Help to raise vital funds!! You can find my fundraising page here on JustGiving.”

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Daniel Johns runs the Bristol Half Marathon in aid of FMA UK

Daniel Johns will be running in the Bristol Half Marathon this September.

In the video below, Daniel Johns talks about his personal reasons for sharing awareness of fibro and fundraising for FMA UK.

To donate, please visit Daniel's fundraising page at JustGiving.

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Aimie's '50 Miles in May'

Aimie will be walking '50 Miles in May in aid of FMA UK. To donate to Aimie' fundraising campaign, click here and read on to hear why Aimie has chosen to fundraise for FMA UK.

“Hello, I'm Aimie, 25 years old from Scotland and this is my story!

I was diagnosed with Fibromyalgia in 2017, at the age of 21. My doctor actually told me that it was one of the youngest cases that she had ever diagnosed! At the time, I had no idea what this condition was and also was unaware of how much it was about to change my life. Over the years, my condition, unfortunately, worsened which has made me lose the ability to carry out many of the "normal" activities that I used to be able to do with no struggles; walking long distances being one of them.

I spent hours on the internet, looking for information about Fibromyalgia until I came across FMA UK. Not only was it a charity close to home, but I was also able to get the information I needed from them and they have no idea how much they have helped me get through the uncertain times of my condition.

In May 2021, I decided that I was going to challenge myself by getting out and walking more. I also wanted to do it for charity and to raise awareness for FMA UK and also for the people who experience the same daily battle as I do. This condition is often left out of the public eye in society these days and I felt like I wanted to do my part to bring it to people's attention!

"50 Miles in May" was what I decided to call it. Whilst 50 miles in the space of a month may not seem like a lot to the average person, to myself and many others, it can be challenging!

I managed to raise £257.21 for FMA UK and felt very proud of myself! Admittedly, there were times throughout the month that I wanted to give up, but with the support and motivation from friends and family, I kept going and absolutely smashed my goals.

This year, I have planned to participate in the same challenge to fundraise for FMA UK! I feel very positive about it this time round and hopefully in the future, others can join in too!”

To donate please visit Aimie's fundraising page here.

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Jasmine's Skydive for FMA UK

Jasmine will be doing a skydive in aid of FMA UK. To donate to her fundraising campaign, click here and read on to hear why Jasmine has chosen to fundraise for FMA UK.

“Hi, I’m Jasmine. I’m from the Midlands and have been living with fibromyalgia for 10 years.

When I was in my early teens, I started to develop symptoms what I now know to be fibromyalgia. I particularly suffered with pain in my hands; to the point where my right hand looked deformed. I was tired all the time, struggled with concentration and the smallest of things felt the greatest of efforts. After several visits to the GP and a couple of trips to the general hospital, I was referred to the Nuffield Orthopaedic Centre in Oxford where I was diagnosed with fibromyalgia. Following my diagnosis, I was offered a two week rehabilitation programme where I had input from a psychologist, an occupational therapist and a physiotherapist. These two weeks changed my life and my outlook. I came away feeling confident I had the skills to manage fibromyalgia. Of course, I still have my bad days – where the brain fog and fatigue is so bad I don’t want to get out of bed and the pain makes me want to curl over. In these dark moments, I get into my head feeling like I’m not good enough and feeling angry with the world. Sometimes in these moments, I cave in to my body and will do nothing. Other times, I feel more determined to keep pushing through.

On September 1st, I will be skydiving for FMA UK. I have chosen this year to skydive because it marks 10 years since receiving my diagnosis. Many of my friends and colleagues still don’t know I have fibromyalgia! It is something I don’t talk about because I’ve felt I can’t be bothered to explain it, I don’t want to be judged or treated differently or seen not to be able to do something. I think this attitude comes from being in secondary school being asked by my peers ‘why have you been off?’ ‘what’s wrong with you?’ and from doctors ruling out condition after condition making me feel like maybe it is all in my head.

As I’ve got older and worked within mental health, I’ve concluded more awareness needs to be raised of hidden disabilities and I can make a positive difference by being the voice for so many others in the same situation. In my career, I try to instil hope for others and it’s taught me to be a lot kinder to myself! You have to find your own coping strategies and make sure you make time for them. I accept my diagnosis and my limitations during a flare up but this doesn’t stop me from achieving my goals.

I am aiming to raise £500 for FMA UK and will be self-funding my sky dive so all proceeds will directly go to the charity. FMA UK is important to me because they really do work hard to support others. It is mainly volunteer ran and these volunteers are the reason sufferers know about support groups and are able access online forums and helplines. I am grateful for the support they offer and want to give something back.

To donate please visit my JustGiving page here. Thank You!”

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Alice's 120 Miles in June

Alice will be walking 120 miles in June to raise awareness of fibromyalgia and fundraise for FMA UK

If you would like to donate to her fundraising campaign, click here.

Alice shares why she is walking '120 Miles in June'.

“I have had fibromyalgia for some time now, since I was very young I have always had strange symptoms which I now know were fibromyalgia! It started off with pain in my knees, tiredness like actual exhaustion after not doing much at all. I found it hard to come home from school and not take a nap, I was just so tired to the point where I would throw up. I for some reason thought it was normal to feel like that and I didnt want to make a fuss. Anyway, the pain started to spread and eventually it sneaked into every part of my body. The pain levels increased and I decided it would be wise to visit the doctors. They said it was growing pains and they would go when I'd finished growing.

I then started to realise I was getting all these strange symptoms with the pain and fatigue. I had had them for ages but hadn't really put them together. They were things like itchiness, headaches, feeling too hot or too cold, burning pains, being tender to touch, brain fog, finding it hard to think clearly, trouble with loud noise, clumsiness, dropping things, dizziness, sleeping all the time, pain in eyes, IBS - the list could go on for pages! I still get these now, with a lot more added to the list as well. I finally got my diagnosis of fibromyalgia and chronic fatigue syndrome when I was 17 - I am now 23.

Fibromyalgia affects me daily, I struggle with things people would normally find easy, I often find myself having to rest after a small activity. I haven't had a day without pain or some of the symptoms for years. It makes it hard to study, I am currently a university student so this isn't very helpful as you can imagine. University is hard at the best of times without being chronically ill! It's very hard to manage fibromyalgia at times, I sometimes think of it as small people inside my body who often get angry. It helps me sometimes when I picture that, its like oh my little fibro people are angry again today and they want me to rest!

So, I am raising money for FMA UK because they are a fantastic charity who help many people like me with fibromyalgia. It can be a scary place to be on your own, but FMA UK are there for you when you need them. They have all sorts of advice on their website, there's guidance on different things you can do to help manage fibromyalgia. There's lots of important information to look through and it does help so much! They give so much support to fibro sufferers and their families to help them through what can be the hardest time of their life. Chronic illness diagnosis is really something that tears your world apart, but having charities like FMA UK there to help really does make that crucial difference. This charity is run by volunteers and many of them have fibromyalgia too, this is why it is so important to me to raise money and awareness!

Finally, I'm going to be walking 120 miles in June to raise money. This is a big challenge for me, but I am doing it because I kind of want to show fibro who is boss, I feel like it has taken a lot from me and I want to start getting those things back. I have always loved walking and I thought why not do this challenge and I can explore my beautiful county at the same time, whilst raising money for this fantastic charity. I think this is going to be one of the hardest things I have ever done, but I am one of those people who love a challenge and thrive off the sense of achievement it can bring.”

Please click here to donate to Alice's campaign.

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SME Midlands and Wales Real Estate Team – Lloyds Bank Walk for FMA UK

UPDATE! - Molly's employer, Lloyds Bank have matched donations to Molly and her team's fundraising campaign bringing their total to just over £9500.

Molly and her Team from Lloyds Bank Midlands & South Wales Real Estate Team recently took part in a fundraising walk for Fibromyalgia Action UK. They have already raised over £4700 in donations, so far.

To donate to Molly and her Team's campaign, please click here. Read on to find out why Molly and her Team were motivated to fundraise for Fibromyalgia Action UK.

“My colleague's father, Michael Hall, who sadly passed away this year, suffered from this debilitating disease for 25 years. It had a huge impact on his day to day life and that of his family.

Over time he learnt to live with this chronic condition and made the most of what he could do whilst managing the pain and fatigue caused by it. In memory of him, the Lloyds Bank Midlands & South Wales Real Estate Team chose to raise funds in aid of the Fibromyalgia Action Group in support of all the good work this smaller and less well-known charity carries out.

The Team took part in a 17-mile charity walk from Monmouth to Chepstow, with clients, professionals, and colleagues sponsoring us for this great cause.

We hope that our fundraising efforts have been able to heighten peoples awareness of this awful condition and the impact it has on the lives of those who suffer from it.”

If you would like to donate to Molly and her Team's campaign, please click here

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Emma's 350k Steps for FMA UK

“My name is Emma. I am doing 350,000 steps in November to raise awareness and money for everyone affected by Fibromyalgia. You can donate to my 350k Step Campaign here.

My fiancée Stephanie was diagnosed five years ago with Fibromyalgia after years of severe body pain, weakness, fatigue and numbness in hands and fingers.

Before I met Steph, she struggled as a single mum with her condition. Her flare-ups cause Steph to be unable to do everyday things, like housework or lifting our daughter. Waking hurts, sitting down hurts, laying down hurts. No matter how much sleep Steph gets, she is constantly tired. On a good day, she will do as much as she can, knowing that she will suffer for it, either way, the next day. Her memory is affected, and sometimes she forgets her own age.

FMA UK is important to me because it raises awareness about a little-known condition.”

Click here to donate to Emma's 350k Step Campaign

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Ruth is Running for FMA UK - UPDATED!

Ruth is taking part in a series of runs leading up to the big one - London Marathon 2021

Click here to donate to her fundraising campaign. Read on for more about Ruth.

LONDON MARATHON 2021 UPDATE - “I survived!!! The London Marathon was everything I had ever hoped it would be!

The stress and anxiety preceding the day itself sadly caused a big fibro flare with chronic back pain and fatigue. That accompanied by a chesty cold meant that I was dreading the extra, extra challenges that I was sure to face on Sunday.

However, Marathon Day was probably the best day of my life! Having dreamt about doing it for 40 years, it really was a dream come true. The atmosphere was indescribable and the wall of noise from spectators and bands lining the route was deafening!

I was prepared for the inevitable pain that would accompany this bonkers challenge but had to dig extra deep with mental strategies, a few stops to relieve foot pain and a lie down to stretch out the back. I even gave 'fibromyalgia' a friendly talking to...allowing it to come with me on this journey but not letting it define me.

I felt proud to be wearing the FMA UK vest and in doing so, raising awareness on the streets of London for this charity.

The enormity of what I have achieved in completing my dream goal whilst 'befriending fibromyalgia' hasn't really sunk in yet but for now, I will continue to wear my medal with pride and spread the word to anyone who has the time to listen.

I have so nearly reached my target fundraising goal of £1,000 so hopefully just a few more donations can help this to be achieved too.” - LONDON MARATHON 2021 UPDATE

“Hi, my name is Ruth and 7 months ago, after 4 years of visiting 5 different consultants, I was finally diagnosed with fibromyalgia. Whilst this was not the best news to receive, it came as such a relief that I wasn’t imagining all the different varieties and levels of pain, fatigue and weakness. Since the diagnosis, my life has changed so much. I feel that I have no choice but to accept the fibro, ‘befriend it’ and deal with it as best as I can. Working now only part-time, learning meditation/mindfulness techniques and above all, continuing with exercise are all helping me to learn what works and what doesn’t work.

I have been a runner for many, many years so it came as a huge surprise that I could have fibro whilst still being able to regularly run. What came as a bigger surprise was to gain a place in this year’s London Marathon on 3rd October. To take part in this event after 40 years of watching it in awe and admiration, is a dream come true for me. Accepting the ‘extra challenge’ of running in constant pain and abandoning everything when the fog, fatigue, pain and weakness is at its worst has ignited a fighting spirit within me.

I am determined to get to the start/finish line of the London Marathon and help to raise funds and awareness for FMA UK. Having already completed some Half Marathons in preparation for the biggest event of my life, I can honestly say that I was both privileged and proud to wear the FMA UK vest and by doing so, help to raise awareness of this debilitating condition.

So today I completed my fourth Half Marathon in preparation for THE BIG ONE…THE LONDON MARATHON on 3rd October. Coincidently, today is also the start of Fibromyalgia Awareness week. I can honestly say that today I felt both privileged and proud to wear the FMA UK vest and by doing so, to help raise awareness of this debilitating condition.

The journey so far has been a huge, character-building learning curve in managing fibro symptoms whilst building up longer and longer runs so thank you to everyone who has helped me along the way. This ‘fibro-warrior’ is determined to ‘befriend’ this chronic condition and help other sufferers like me.

If you would like to find out more about the condition please click the link below or if you can spare a penny or two for this charity then my justgiving page is there too. Onwards and upwards everyone :O)

Any help in reaching my fundraising target would be greatly appreciated”. - Please click here to give.

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Lucy runs the Windsor Half-Marathon in aid of FMA UK

Lucy shares her experience of having fibro and why she is keen to raise awareness and funds to support those with the condition.

Click here to donate to Lucy's Windsor Half-Marathon Campaign

“I first started to get symptoms when I was 16, chronic migraine, sickness, and lots of left shoulder pain/sore neck to the point I could hardly bear to touch it and was hunched over. Over the next couple of years, my symptoms worsened, chronic sickness, subsequent weight loss, chronic fatigue, IBS, all of which stopped me from studying, and I spent six months of my second year at university at home in bed or in hospital. Every scan, every test came back clear, every consultant/ department said I was normal, but my debilitating pain continued.

I left university with a First Class Honours Degree and a Masters by Research degree and then threw myself into my Sales career... which was soaring…then on Thursday 28th June 2018. I woke up in agony, and I couldn't move... my back went into spasm for 12 weeks. I was unable to walk, drive, see my horse, work... in 24 hours I had lost control of my body. It was terrifying and endless. The weeks were turning into months. I made the hardest decision to leave my career behind.

I enrolled in a pain programme which enabled me to start to rebuild my physical and mental strength. I struggled with the diagnosis at the beginning and with that my mental health. No cure was a tough pill to swallow at 24 years old... just learning to accept it and rebuild my life from scratch, living with the devil that is Fibro. I felt it took away my identity and changed the way people treated me.

After three years in recovery, three years of dedication every day to psychology, nutrition, physiotherapy, meticulously managing every aspect of my day-to-day life – sleep patterns, diet, water, exercise, work, rest, mindfulness. I am proud to say I have rebuilt my career and have my dream job as a Research and Development Manager, something I never thought would be possible. My company are so supportive of my health and enable me to keep chasing my dreams! I sold my flat and bought a new house ???? - another dream which is yet to sink in.

I am a fibromyalgia sufferer, so this charity is extremely close to my heart. Every day I am in pain, yes, all over my body, but with the right coping strategies in place I can keep that pain to a tolerable level.

At one stage, I never thought I would walk again, never regain any independence. I never know what tomorrow will bring or if and when a flare-up will happen, and yes, they are inevitable. Ever since I got the freedom of my legs back, I have tried to make the most of them. Running has helped both my physical and mental health throughout my recovery.

I want to raise awareness, vital funds and encourage those people with pain that through hard work and a positive mindset, you can put your mind above the pain and make progress. Bedbound to a half-marathon in 365 days was my biggest achievement in 2019. Living life in the fast lane is what has kept me alive!

To each and every person living with an invisible condition that controls their lives, I run for you.”

Click here to donate to Lucy's Windsor Half-Marathon Campaign

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Dan takes on the Brighton Marathon in aid of FMA UK

Dan was due to run in the Brighton Marathon in April 2020, but the outbreak of Covid-19 saw his race postponed till September 2021.

Click here to donate to Dan's Brighton Marathon Campaign and read on below to see what motivated Dan to take part.

“My mum first became ill with fibromyalgia about 12 years ago. We didn’t know what it was as it wasn’t diagnosed until a couple of years later, as she had other health issues that doctors believed could be causing her pain, exhaustion and complete lack of energy.

As a nurse who was on her feet a lot during her shifts, the condition stopped her from working. There were some days where she had no energy to even get out of bed. However, through persistence and determination over the past decade, she has managed to get back to work and even do some regular gentle exercise.

As you can imagine working in the NHS during the pandemic has been extremely challenging mentally and physically. Not only during work but outside of it too. Having fibromyalgia can be isolating in itself, let alone during a pandemic. And the pressures of work on top of that makes it all the more challenging.

My mum and I used to run regularly together, but it is too uncomfortable for her now as she suffers from hip pain if she’s on her feet too long. Luckily I have been able to get a few training runs in with her cycling with me.

I’m running the Brighton marathon this year to help raise awareness of fibromyalgia as there are so many people who have never heard of the condition, let alone know what symptoms include and how it can affect people’s daily lives.

Whilst my mum has improved dramatically, she still suffers from hypersensitivity, joint and muscle aches (particularly in the shoulders and hips) and profound fatigue. As she used to be extremely active, this can be frustrating as there are days she wants to go out and exercise, but her body won’t allow it.

I was originally planning to run the Brighton Marathon in 2020, but we all know what happened there! I have been running at least 50 miles a month since then to keep my legs ready for when the marathon would eventually go ahead. 18 months later, race day is almost here, and I can’t wait to complete the race for such an important cause.

Fibromyalgia is draining both physically and mentally for all people that suffer from the condition. By running a marathon this year, I hope I can raise money and awareness that will hopefully lead to more effective treatment and understanding.”

Click here to donate to Dan's Brighton Marathon Campaign

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Ryan will run in London Marathon 2021 for Fibromyalgia Action UK

Ryan recently sent us a video explaining why he is running in London Marathon 2021.

You can donate to his Marathon campaign here

Gabby's Walk, Run, and Raise for Fibromyalgia Action UK

Gabby and her friends recently raised over £730 for Fibromyalgia Action UK through a sponsored walk.

“For the last 5 years my mum has had fibromyalgia and it has affected our whole family. My mum gets severe tiredness and aches which means we really have to pull together as a family to get everything done especially having a 6 year old sister!

FMA UK is important to me because before my mum was diagnosed I’d never heard of the illness and to this day so many people don’t know about it and I think awareness is really important and needs understanding as so many people do have it and may suffer in silence.

I chose to fundraise the money by doing a 5km charity walk with my friends because it was nice to get other people involved as well. Whilst we were walking we wore the t-shirts that Fibromyalgia Action UK provided to help spread awareness to the public about the illness.”

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Eva's 10k Walk for Fibro

Eva recently walked 10 kilometres and raised over £300 for Fibromyalgia Action UK.

“I wanted to do the 10 mile challenge as I was diagnosed with fibromyalgia at the end of 2020 after a rough couple of years. I was under a huge amount of stress. I had left a domestic violence relationship, then contracted Covid 19 and had a car accident over the space of a few months. All of which I believe contributed to the condition.

I was utterly heartbroken when I heard the diagnosis as I love being outside and walking. I crumbled a bit with sadness thinking of what I couldn’t do, not what I could do!

I wanted to complete the walk to prove to myself I am still the person I was and can still live a relatively normal life with a few modifications. I treated myself to a mobility walker as I wanted to be able to get out more without struggling to walk.

I was nervous the first time I used 'Wilma the Walker'. I am 35 and this is not how I had planned my life, but it has given me freedom and by getting out and about I am actually managing the condition better than I was previously.

I like to help others by way of coming to terms with things which have happened to me, so I decided to raise money at the same time as completing the challenge for my own personal acceptance of fibromyalgia.

I am hoping the money I raised helps another person with the condition in the best way it can! I plan to do more challenges in future for FMA UK”

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