John Speirs is running a series of marathons and runs to support FMA UK work and to raise awareness of fibromyalgia because his wife, Lynn, lives with fibromyalgia. John told us: ‘’So I’ve decided to run a marathon at the grand old age of 42. Why? Very simple, to help raise awareness of Fibromyalgia and hopefully raise some much needed money. My wife Lynn was diagnosed with Fibromyalgia about 6 years ago. Since then she has got progressively worse and she is now in constant pain.
5 years ago after the birth of our daughter my wife was really struggling with pain and eventually had to stop working. Every day is a challenge for her and its made all the more difficult as I am in the RAF therefore live 200 miles away on weekdays. Not to mention being deployed overseas frequently for months at a time (8 in the last 23). Nobody can see my wife’s illness, its invisible. Unfortunately the NHS answer to her illness is anti depressants, sleeping tablets and codeine based (addictive) painkillers. These are not an option for someone looking after a child therefore they were rejected!
She was referred to physio.......the response from the physio was that they couldn’t do anything for her. We spent money that we could ill afford on a private specialist in the hope of some progress....again nothing. It seems that nobody actually knows how to treat a Fibromyalgia sufferer.
Faye who is a fire fighter from Aintree, Merseyside, is doing a number of fundraising challenges to raise vital funds for Fibromyalgia Action UK, because her mum lives with fibromyalgia. She is also raising money for The Fire Fighters Charity. Faye, who has been taking part in a number of fundraising activities over the course of a year, used the treadmill challenge as a training exercise before she takes part in the New York Marathon on Sunday, November 5 to raise even more funds for Fibromyalgia Action UK and the Fire Fighters Charity.
Faye told us: “I’m hoping as many people as possible will continue to support me and raise awareness of Fibromyalgia Action UK and The Fire Fighters Charity whilst helping me raise as much money as possible for two wonderful causes by donating money, visiting my justgiving pages or textgiving. My dream is to raise around £2,000 for the two charities as both are close to my heart and provide valuable services to people all across the UK.’’
To sponsor Faye https://www.justgiving.com/fundraising/faye-disley-1
Liza Jane -Behind a Smile is a song by Liza Barnett-Tweedie
My Name is Liza I am the Chair Of Barnsley & District Fibromyalgia support group
The idea of behind a smile came to me after Alfie Pearson approached me about a idea to raise awareness of his parents illnesses SPS (stiff person syndrome) and fibromyalgia both Dave and Stephanie Pearson have encouraged me to complete this project with the help of Lewis Hill (music and arranged plus recorded the song) Kate Robinson teaching skills , Jim Mcentee designer of CD covers and getting a great deal on cd production, Photography and PowerPoint presentation are courtesy of John Kirk and Angie Kirk . As well as Barnsley & District Fibromyalgia group, friends and family I could not have pushed through the complications of copd and fibromyalgia without them all. My hope for this song is for people to understand our pain and suffering people cannot see. Money raised from the sale of CDs will be split between both chariites.
The video release on YouTube is scheduled for Fri 13th October https://youtu.be/ulYn_RqpTys
Available on most top UK download sites from the 13th October plus information to buy disc direct at end of video
Luke told us: ‘’My Mum and one of my closest friends, Abbie, suffer from Fibromyalgia. Since I've known about my Mum's and Abbie's Fibromyalgia I now know another 2 other people who suffer from the condition.
Whilst my mum has found something that helps, she still suffers some days more than others and that was only after being lucky enough to get some private advice/treatment something that not everyone is able to afford. Unfortunately Abbie has not found something that works for her yet, as I mentioned above treatment is very much pot luck and constantly trying different things, which is incredibly difficult in a situation where you are unable to work, yet you don't get any support to help, no matter how much you try! To see them on their worst days is very upsetting, they can be in so much pain that they struggle to get out of bed and perform simple tasks we take for granted.
Ben Keane will run the 10K run on the 8th October and he has raised already almost £200. Ben told us: ‘’My mum Caron was diagnosed with Fibromyalgia around 4 years ago after suffering for years with what was unknown at the time until a final diagnosis by her GP. She battled on but had to give up work 2 years ago. That was the end of 30 years of hairdressing job she loved. It also meant the end of most of her social life as it is often difficult to compose your thoughts and speech due to fibro fog. The condition affects her both physically and mentally including memory loss, the inability to follow a conversation, joint pain, insomnia and regular fatigue where even to go up the stairs is painful and like running a marathon.
There is no cure for the condition and very little is understood about it. My mum is currently on medication which only masks the symptoms. That's why the money going to Fibromyalgia Action UK is so important to assist in research and to help the charity to continue to help sufferers around the UK and campaign to ensure treatment is no longer a post code lottery which is currently the case.’’
To donate visit Ben’s JustGiving page: https://www.justgiving.com/fundraising/benkeane-lyons
On the photo: Ben with his mum on her wedding day
Nigel Tucker cycled 100km in New Forest on the 16th September to support FMA UK and to raise awareness of fibromyalgia. Nigel told us: ‘’Yesterday was the big day, I completed my 61 mile/100km bike ride in 4hours and 6 minutes which was fast enough to earn me a silver time in the event, just 10 minutes and 55 seconds short of gold.
The fibromyalgia cause is close to my heart because one of my closest friends lives with the condition every day – she was diagnosed 5 years ago. I chose Fibromyalgia Action UK from the JustGiving website as I want to help raise awareness and support the great work you do in helping people like my best friend.
Whilst I am a keen cyclist I have never done more than around 60km in any one day so 100km is a big push for me.’’ Nigel has been training hard before the event, cycling a lot and up to 100km a week before the event.
To donate visit Nigel’s JustGiving page: https://www.justgiving.com/fundraising/nigel-tucker
Matthew Painter raised over £600 for FMA UK in a 12 miles sponsored run/walk in Swindon area. He walked for 5 hours to raise funds and awareness of fibromyalgia. Out of 5 hours, 3 hours and 31 minutes was walking. ‘’I decided to do the walk to raise money and awareness of fibromyalgia because I've suffered with it myself for nearly 7 years. No one else in my family has it, but someone else, the wife of a friend, also suffers from it. I only found out when he told me
I trained for 8 weeks in the run up to the walk for two days a week, starting from a hour and a half of sustained walking and building up to three and a half hours - in my last bit of training I reached 8.2 miles walked. My girlfriend supported me by coming along on some of the training. On the day of the walk, my brother came along to support me in his car, and drove to certain points to check I was alright and supply me with bananas and drinks along the way.
The biggest problem I had to overcome was bad feet - plantar fasciitis! Luckily I was able to buy a new pair of trainers before the walk, and with my heel properly supported all the pain went away in time for the walk.’’
We would like to say well done to Matthew!
Get involved on social media:
We’ll be sharing them throughout the week!
Lynsey Read-Edwards from Norfolk together with her husband Paul will walk 14 km from Dale Head to Catbells in Lake District on 23 September for FMA UK with the aim of raising £1,000. She has already raised £760.
Lynsey told us: ‘’I wish to complete the challenge and raise awareness for Fibromyalgia Action UK because I wish to help fellow sufferers. I feel it is important to speak honestly in order to raise awareness and hopefully raise some money to donate towards a cause very close to my heart. Fibromyalgia is difficult to explain but it does effect every aspect of your life and for me it was life changing.
It took away my Independence and isolated me from the world. The condition hit my life like a nasty flu bug. It zapped all of my energy & strength. I was not independent. I couldn't walk anywhere without support. Those early days were the hardest thing I have ever experienced. This stage of my fibromyalgia lasted for about two years. And after that every year I have been able to do more and more with the hope of one day being able to be more active and more able.
Demi-Louise Bailey has contacted us with her story about competing in charity pageants, and is competing in Miss Voluptuous UK in September. She tells us:
"I was diagnosed when I was 15 (2012)- at this time in my life I was practically immobile. I was forced out of school. I had to force and push to get this diagnosis, I had been discharged and then referred and that process was repeated and FINALLY I was told that my chronic pain, my tiredness, depression, anxiety, ibs. It was all linked.
I've been through several medication changes, my weight has fluctuated massively. Self acceptance was probably the hardest part of my diagnosis. With medication, check ups every 6 months, I am now mobile.
I will not let my disability define me, I am stronger than that.
So I started competing in 2013, when I won the title of Sheppey Princess. I then has a serious ankle injury, which led me to take a break for two years. I've then gone on to compete in charity pageants. But I came back on a national stage again in 2016 as Miss Kent Curve. I placed top 5, won congeniality and publicity award. I've then gone on to compete again and placed first runner up! Won top Top Model!
I am now competing in Miss Voluptuous UK, for my chance to be there first UK queen. This is a platform based competition and Miss Voluptuous directors pride themselves on their girls charity work. So here I am! "
GOOD LUCK ...and be sure to let us know how you get on.
Hayley Kenward together with three friends raised over £1,000 by abseiling 100 metres down the Spinnaker Tower on the 12th August to raise funds for FMA UK because her partner, Michelle, lives with fibromyalgia. The Emirates Spinnaker Tower is an iconic building soaring 560 foot (170 m) above Portsmouth Harbour and the Solent. It is taller than the London Eye, Blackpool Tower and Big Ben and has already established itself as a national icon for Britain.
Hayley told us after the abseil: ‘’I’m seriously overwhelmed and overjoyed by the support we’ve had and the amount we have raised’’. Hayley wrote a blog on the abseil and you can read it here:
Sue Hanson sent us this picture of her nan, Hilda - and shared why the family donated in her memory. Our sincere condolences are with the family and our thanks that they thought of FMA UK at this sad time.
I recently lost my lovely Nan, Hilda. Instead of giving flowers the family asked for donations in her memory to go to charity. I was touched when I heard that they had chosen FMA UK to be the chosen charity as I her granddaughter suffer from the condition and they said they knew that this is what she would have wanted. I feel I had a special connection with my Nan and although we did not talk about my condition often she always showed a real understanding and empathy for the struggles in my life and a wish for my life to get better. I know that it would have made her very happy to know that FMA UK had received over £400 in her name and memory. It is obviously a very sad time for all of the family and I miss her more than words can say but I feel that this in a special way is my Nan continuing to give her love and support. She was always a loving and caring lady with a great sense of humour and even at 102 years old was still young at heart. I am truly thankful to have had her in my life for so many years.