In October, last year an internationally recognised set of speakers gathered in Japan for a symposium on fibromyalgia. The event brought together researchers from many different areas of science and medicine to discuss new findings about fibromyalgia. Below is a summary of some of the articles that were presented. It’s important to keep in mind that some of the conclusions are preliminary and will require further study or trials to confirm or improve their understanding.
It is now widely accepted that problems with the central nervous system are important in fibromyalgia. The central nervous system includes the brain and spinal cord. The rest of the nervous system is known as the peripheral nervous system. Less is known about the role of the peripheral nervous system in fibromyalgia but the symposium highlighted some new research findings in this area. One particularly interesting topic was about how overdrive of the fight-or-flight response (which is created by a part of the peripheral nervous system known as the sympathetic nervous system) may be involved in fibromyalgia. New findings about the role of the peripheral nervous system in fibromyalgia help improve our understanding and may help in developing new treatments at some point in the future.
We are very proud of Lewis Beckwith, 5 years old, who run over a mile in the Mini Great North Run and raised £250 for FMA UK. Lewis’s’ mum, Charmaine, said: ‘’ We have decided to donate the sponsor money to your charity. The reason behind this is my Mum, Lewis's Granny, suffers from Fibromyalgia along with other conditions and has done for a number of years. She has her good days but mostly her days are shadowed by pain, a massive lack of sleep, 'fibro fog' and other symptoms. The way she deals with her illnesses is so admirable. She is such a strong person and she makes us proud every single day.’’
We say well done to Lewis!
Kerry Sheran does beautiful handmade gifts through crafts and innovative personalised gift bottles for every occasion: birthday, anniversary, friendship and many more. She runs a facebook shop ‘’Gift that Bootle’’ https://www.facebook.com/Craftykerz/ and donates £1 from the sale of every item to FMA UK.
Kerry tells us why she supports us: ‘’the reason I chose to do this for FMA is that I was diagnosed with fibromalgia & FND (a neurological condition) in January after I lost the feeling in my legs...although now after research mostly through FMA UK website I realise I have had this horrible condition for many years. My life has changed drastically over this year, having to give up work has been difficult for me to get to terms with. I'm extremely fatigued, spend most days in pain & don't want to go out the house..however I found a hobby making personalised items at home..I find it therapeutic.
Annie Wigg, who lives with fibromyalgia will take part in a challenging event skating race and she shares with us her inspiring story: ‘’In February 2012 I was involved in a bad crash whilst training with my team (inline speed skating) and did quite a bit of damage including: severe whiplash, widespread soft tissue damage, a torn facet joint, 2 subluxated ribs, and 1 dislocated rib which was also fractured. From this trauma I developed Fibromyalgia and Post Traumatic Stress Disorder. However I wasn't officially diagnosed with it until 2014 due to malpractice from my hospital and local doctors surgery.
I have been on skates since I was 1 1/2 years old and racing since I was 10 (2006). I started racing internationally in 2014 with the Le Mans 24hour being my first event abroad. Skating is pretty much the only thing that helps me get away from the hell of my FM. Sometimes it can bring on a serious flare-up however for the most part it actually helps me with both the pain and the mental onslaught that I deal with 24/7. I've been skating my whole life and it is now a huge part of who I am, I can't let FM take that away from me so I continue to skate as best I can. I'm not as fast as I was before the accident but I'm slowly making progress and pulling myself back.
Danielle Thornton and Shelby Ford will do a parachute jump on 24 June to raise awareness of fibromyalgia and raise funds for FMA UK. Danielle has fibromyalgia and Shelby’s mum lives with the condition. A couple of local businesses support their fundraising efforts. Danielle told us: ‘’I have had fibromyalgia since I was 17 years old with NEADS and Chronic Fatigue.
For 17 years I enjoyed life doing horse riding, dog walking, taking part in local shows. I have also started a course in health and social and was looking forward to going to Africa to do some voluntary work. Then my life changed
I started to get pain, pins and needles, with a burning sensation in my legs. I also felt drained and unwell and just thought a virus!!! From that day I developed blackouts which I have 20 a day, pain spread across my body with spasms, chronic fatigue, occasional fits and now going through my body puffing up if I try and do too much or if I do too little. People giving me cuddle or touching me can be so painful. I have to be supervised 24/7. I am 25 years old now missed out on all those crazy things even though I try to do them sometimes.
On the 5th June (9PM BBC1) the BBC Programme Doctor in the House will be featuring an item on Fibromyalgia. While we do not know what, the episode will be about we know that the series has a Dr Rangan Chatterjee spending time with the patient in their own home and looking at the condition from a fresh point of view.
Dr Chatterjee’s mantra is that “the majority of patients don’t need a pill, they need a lifestyle change so it will be interesting to see how fibromyalgia is covered. The BBC Website features this snippet about the upcoming programme:
“Nicola has been diagnosed with ten different conditions, including fibromyalgia, ME, sciatica and depression. Her pain and exhaustion has led her to become addicted to painkillers and almost housebound. Can Dr Chatterjee help Nicola find the cause of her problems and improve her health so that she can enjoy life with her three young sons again?”
Programme Details can be found here: http://www.bbc.co.uk/programmes/b08tlyzs
Please note the the National Helpline number will be closed on Monday 29th May 2017 and the Benefits Helpline will be closed from Friday 26th May until Friday 2nd June 2017(inclusive)
John Stammers from Stanford-le-Hope will cycle in the Annual Thurrock Cycle Marathon on 4th June to support Fibromyalgia Action UK because his mother lives with fibromyalgia. Fibromyalgia is an incurable condition that causes widespread body pain, extreme fatigue, brain fog and other debilitating symptoms. The cause for this condition is unknown and the treatment options are limited.
John told us: ‘’The main reason this charity means so much to me is because about 3 years ago my mum was diagnosed with Fibromyalgia, this was after suffering with the symptoms for about 4 years prior to the diagnosis. She often suffers with many of the symptoms presented by Fibromyalgia such as: fatigue, fibro fog and muscle pain. There are also other family members and friends that suffer from Fibromyalgia. More research is needed to diagnosis this condition quicker and treat it more effectively as currently there is no cure. By donating to my just giving page, you can help sufferers and their families in adapting to a life with this condition’’.
Kathryn Moore-Smith together with her boyfriend Adam and friend Kaytlin will run in the Summer 10k Wolf Run on 3rd June in Leicester to raise funds for FMA UK because Kathryn’s mum and Adam’s step mum live with fibromyalgia.
Kathryn told us: ‘’My Mum and several other people I know suffer with FM and it is heartbreaking to see how badly it affects their day to day life and that they just have to deal with it as there isn't enough known about the illness for there to be a better treatment for it. I spent some time googling about Fibromyalgia and looking for charities and found your webpage and decided that this is the charity I wanted to raise money and awareness for.
I did a Wolf Run a couple of years ago just for fun, and over the last year or so I've wanted to do another one, but I wanted to do it for charity and actually train for it properly as the first one I did I didn't really do much training for and as much as I enjoyed the experience I regretted not training for it! So with that in mind I started training and knowing I was doing it for a good cause has kept me motivated to keep training!
Kelly Thompson is taking part in this year’s Summer Wolf Run 10K in Stamford Hall in Leicestershire on 3rd June. Kelly told us: ‘’For those of you that don't know it's a 10k essentially muddy bog with hills , obstacles and lots of water and some sections I will be conquering my own fears but in comparison to people suffering with fibromyalga it's nothing.
I’d like to raise as much money for FMA to help increase awareness of this invisible disease.
This is a charity close to my heart as my mum suffers with this condition. Fibromyalgia affects the body in so many ways and not many people are aware or even heard of it. Chronic pain all over the body and extreme fatigue, short and long term memory loss, muscle spasms and nerve pain are just a few of the symptoms people with it have to deal with every single hour of every single day. Supporting this charity will aid people to learn methods to try and deal with these symptoms and make their lives more manageable.’’
To donate to Kelly’s JustGiving page visit:
Stephen Williams' wife Amanda suffers with the debilitating condition fibromyalgia
A devoted Chester husband is planning a sponsored cycle ride from Exmouth to Chester to raise funds to tackle fibromyalgia, a condition from which his wife suffers.
“To support this charity, me and some of Amanda’s cousins - Emma White, Ben White, Hannah Bown - are doing a long distance cycle from Exmouth to Chester, that’s 220 to 250 miles depending on how bad our map readings skills are or how big the hills are!” said Stephen.