Sarah Hamburg, a trustee of FMA UK recently attended the Nice 2018 conference in Manchester. The theme of this conference was improving healthcare, with a particular focus on technology and how it can help health outcomes.
Patient involvement in activities such as this can help shape discussion as well as keep fibromyalgia part of the health conversation. Anyone can be a fibromyalgia patient advocate with participation on your local GP or NHS trust patient liaison committee being a great place to start.
Please see attached a copy of the report from the European Network of Fibromyalgia Associations (ENFA) Conference held in Malta this May, which Simon Stones attended on behalf of FMA UK.
How pain’s unpredictability can affect interpersonal relationships, and recognising help when it appears.
With between one third and one half of people living with chronic pain in the UK alone, the number of people experiencing the effects of pain explodes when considering family and friendships. For some of these people, life can become a cycle of hospital visits, blood tests, and scans. So, what can be done to ease these relationships?
In this edition of Airing Pain, Paul Evans and eminent psychotherapist Dr Barry Mason speak about their personal experiences with fibromyalgia and ankylosing spondylitis.
With many chronic pain conditions being “invisible”, explaining your pain may seem impossible, and as the family’s “uninvited guest”, it can cause people to close up to those looking to help. Dr Mason explains that not speaking about this uncomfortable topic can lead to further issues, and how opening up can lead to better family teamwork.
We hope this edition of Airing Pain will help those living with pain to understand the importance of communication within relationships.
Airing Pain 103: Pain and Relationships is now available on our Audioboom page, which you can find here.
Harry Corbett-Evans has run a second run to raise awareness and finds for Fibromyalgia Action UK because his sister lives with fibromyalgia. Harry run the Shrewsbury Half Marathon last week and beat his target of 2 hours! 1:58 to be exact. Harry raised £1,150 so far, beating his target of £1000. We would like to say well done and a very big thank you to Harry!
Harry’s JustGiving page closes very soon: to donate, please go to today:
Fibromates North West Fibromyalgia Support Group are celebrating their 4th birthday this year by raising awareness of fibromyalgia with a comedy event at The Naval Club, (Near Rocket Flyover) 38 Bowring Park Rd, Liverpool L14 3NN
Scottish comedienne Carina Macleod, who recently appeared at the Glasgow Comedy Festival will be performing her one woman show, ‘Fibro My Arth’ for the first time in England.
Carina has fibromyalgia (and osteoarthritis) and is trying to find the funny side of fibromyalgia; she says “The only way to cope with the condition was to write a show about it.”
Rather than let the condition rule her life, Carina found that the best way to cope was to include the day-to-day trials of living with fibromyalgia in her touring stand-up show, Fibro my Arth!.
“They say laughter is the best medicine and I definitely recommend laughter for any fibromyalgia sufferer,” says Carina.
Carina has recently toured the Hebrides and surrounding areas with her sell-out show.
Venue: The Naval Club, (Near Rocket Flyover) 38 Bowring Park Rd, Liverpool L14 3NN
Date: Thursday 28th June 2018 at 8.30pm (Doors open 7.30pm)
Contact Anne - email@example.com or 07912 084 549
Please note that the benefits helpline will be closed on the following dates in June/July 2018
Friday 22nd & Monday 25th June 2018
Monday 02nd & Friday 06th July 2018
Michal Gondolewski will cycle the RideLondon Surrey 100 in July '18 for Fibromyalgia Action because Fibromyalgia is not widely recognised. Michal raised £255 so far and is raising more funds to help the charity’s work.
Michal told us: ‘’I have enjoyed cycling for many years but a couple of years ago, whilst going through a very difficult time in my life I found that, for the time I was on the bike, it helped me forget about the problems and gave me lots of happiness. I have re-discovered my passion for cycling and decided to do it more often. I have entered a few cycling events which was a new thing for me. This allowed me do what I love whilst meeting new people and exploring new places in the UK. This was the first time in the 6 years living in the UK that I finally started to get to see the places I should have seen long ago.
‘Dear Chronic Illness’ book features a collection of short letters written by young people, addressed to their long-term illnesses and impairments, detailing what they would like to say to them. The letters are not your typical sob stories, and provide a light-hearted and humorous commentary on the writers’ various experiences, and also giving insight into the challenges of navigating life whilst learning to live with their conditions.
The eBook is available to pre-order on Amazon now: https://www.amazon.co.uk/Dear-Chronic-IllnessPippa-Stacey-ebook/dp/B07BS6DS1G/ref=lifeofpippa21
The paperback will be available to order on the same page from the 14th June, and also from Wallace Publishing: https://www.wallacepublishing.co.uk/pippastacey.html
Pippa Stacey, who compiled the letters into the book said: ‘’All royalties from the book are to be donated to Spoonie Survival Kits, meaning that each book sale will directly equate to funding the social enterprise and continuing our development. This will hopefully enable us to raise even more funds for charity, and create even more accessible opportunities for fellow chronically ill and disabled people’’. Contact Spoonie Survival Kits: firstname.lastname@example.org
Pippa Stacey: email@example.com #DearChronicIllness Facebook: /spooniesurvivalkits Twitter: @SpoonieSurvival Instagram: @SpoonieSurvival Etsy: 'Spoonie Survival Kits'
My name is Kelly Joanne Treasure, Im 29 years of age I live in Swansea, Wales Area.
I am mum of two amazing children.
5 years ago i started feeling really exhausted, legs and back ached so much i was working alot at the time so i genuinely thought it was because i was on my feet all day and working alot is why i felt so ill & apart from the normal stresses of life, my life was good.
It carried on like that for 2-3 years missing days of work, feeling more & more exhausted, week, mood swings were up & down, headaches, abdominal pain, swelling, legs & back felt like they had a tone of weight on them i could hardly walk on times because the pain was so unbearable.
Then 2 years ago i moved and started a new job it lasted 3 months as it came to the point i couldn't bare with the pain no longer i knew something wasn't right i was crying in pain and the thought of going to work wasn't even an option I felt so lifeless it was literally taking over my life.
So i visited my new GP at the time and they referred me to see a neurologist as my local hospital.
I was on the waiting list for 9months before i got to see anyone.
I had numerous blood tests and a MRI scan but they all came back fine so by this point i was so frastraighted i literally started thinking it was all in my head.
I got so depressed, i didn't leave my bedroom i was sleeping all the time in total agony & began to have awful memory loss, lost all motivation to do anything it was awful.
I was on orahmorph for a little while for the pain as i waited to see the neurologist but I stopped taking that due to feeling incapible to do anything let alone be a mum to my two children.
By this point id been back and forth to the doctors and pain clinic where they did other tests to rule out any other conditions but there was talk that i may have a condition called Fibromyalgia.
John Beaty is organising a concert in Worksop in aid of Fibromyalgia Action UK because his wife, Gwyneth, lives with this condition. John told us about the concert and why he decided to do it: ‘’The event we have planned for the 7th July 2018 is a musical evening. I am in a band called Moonlightn’ and we perform live music from the 50s, 60s and 70s. My youngest daughter Jayne Crow is a music teacher and sings and plays keyboard. Between Moonlightn’ and Jayne we decided to raise some money for FMAUK, a very worthwhile charity. It is also a perfect opportunity to make people aware of Fibromyalgia, this debilitating illness.
The evening will be full of great music. We will have a bar, and food will also be available. Great raffle prizes can be won and a lucky bag table is planned. We are very grateful that the North Notts Arena in Worksop, have given us a room with a bar and food for a very low price, to allows us to support our charity.
John’s wife, Gwyneth told us about her story: “ About 10 years ago I started getting abnormal pains in my feet and ankles. Visits to the doctors and then visits to the hospital orthopaedic depart, for X rays and other tests. Was it arthritis? Did I need supports in my shoes? The problems were the X rays didn’t really show anything and the insoles specially made for my feet were unbearable to wear. The dreaded “Fibro” was starting to make it’s mark on my life.
FaffiSalus will undertake3 streams of 4 hours gaming live-stream to raise funds for Fibromyalgia Action UK. He told us why he raises funds to support our work: ‘’A friend and fellow streamer, who goes by the name „FibroJedi“ on the social platforms like Twitter and such, has Fibromyalgia and he recently had a really bad time with it.
I always wished to be able to do something for him but helping is more easily said than done…especially if you live in different countries. So I had a little chat with him about charities and he recommended FMA UK because he remembered having contact to this particular organisation in the past. So I thought about donating some money to FMA UK in order to help people who suffer like my friend. And then I thought „Maybe I can do even more…“ and I remembered seeing streamers having special charity streams where they collect money for organisations like this. So the idea of having my own little charity stream was born. I may not be a well known or famous streamer…but I have a bunch of friends that are relatively known on social media and if we push this with combined forces we may get people to notice it and thus to donating money.
John Speirs completed Edinburgh Marathon on Sunday and raised over £550 for Fibromyalgia Action UK. John told us about the physical pain he felt during and after the marathon and how he admires how his wife copes with fibromyalgia every day ‘’So it’s done. Edinburgh Marathon complete. It went great until mile 21 and from there on in it was leg cramp torture all the way to the end. I spent a lot of that time thinking about Fibromyalgia sufferers, especially my wife. It helped me to keep going when my body was waving a white flag of surrender and my head was questioning my sanity.
I should say though from a personal note that I ran really well and finished in 3hrs 8mins. Months of training clearly paid off. Once I was home my wife Lynn was chuckling when I was struggling to walk and had to shuffle down the stairs on my bottom. Welcome to my world was her exact words! We both had a good laugh at my expense......think Lynn was enjoying it more though. Family day out to the beach the next day to celebrate and relax. 15 minutes in the Irish Sea later and I was painless. Mainly because my body was in shock at the water temperature! Lynn won’t ever give up fighting. You shouldn’t either!’’
To donate visit John’s JustGiving Page: https://www.justgiving.com/fundraising/john-speirs4