Fibromyalgia Action Uk - Fmauk

Joseph Cooper has been in touch regarding an upcoming Tonight programme featuring opiods/prescription painkillers. The show is looking for case studies, and if you are interested in sharing your experience, please contact Joseph directly, using the contact details below:
ITV TONIGHT SHOW Are you on prescription painkillers? Are you worried about the effect they're having and the possibility of addiction?
... ITV's Tonight programme is making a documentary about opioids / prescription painkillers and wants to speak to you about your experience. If you would like to find out more about how to share your story or know somebody else that does, please write to Joseph.Cooper@ITN.co.uk
Programme Brief: We're producing a documentary about 'Opioids in Britain' that's scheduled to go to air on ITV at 7:30pm prime time on Thursday the 20th of September. It will look at the scale of the issue, the comparisons being made with the epidemic in America and the experiences of people in Britain who are struggling with addiction and dependency. Tonight Programme: The Tonight programme has consistently been the highest rating current affairs series in the U.K. for the past decade and typically attracts around three million people each week. It is fronted by ITV News Presenter and two time RTS Presenter of the Year Winner - Julie Etchingham - who will front this particular programme.
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fibromyalgia and FMA UK were mentioned in a written question yesterday. The question was from Lord Roberts of Llandudno (Liberal Democrat) and he asked "To ask Her Majesty's Government what steps they are taking to progress the diagnosis and treatment of fibromyalgia?"
https://www.theyworkforyou.com/wrans/…< br>

Please see below link to a UK wide survey that the University of Strathclyde digital health team has launched with help from Carers Scotland and The Alliance. Results will help improve understanding of how technology can help carers stay well and care for others.
https://twitter.com/SupportedCar…/statu s/1009766970072453120

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:
https://www.justgiving.com/fundraising/ha rry-corbett-evans

Do you live in Nottinghamshire?
Nottinghamshire County Council would like your help to shape their health services provided from 2020.
"Our aim is to make it as easy as possible for people to use these services and get the information they need to be physically and emotionally healthy. One way we think we can improve these public health services is by joining them up so that they work better for the individuals and communities who use them, and we'd like to hear your view...s."
Have your say now by completing the online survey. https://consult.nottinghamshire.gov.uk/‚Ä ¶/subpage.2018-06-0‚Ķ/
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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

Stacey, Colleen & Carleen, 3 students from West College Scotland (Greenock campus) are holding a fundraising event as part of their course, and have chosen to support FMA UK.
Event: Charity Basketball Game
Location: Sports Centre, Finnart St, Greenock
... Date/Time: Wednesday 13/06/18 @ 10.00am
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Fibromates North West Support Group have been in touch regarding their upcoming event:-
I'm delighted to let you know about our event to raise awareness of fibromyalgia ..................... Fibromates North West Fibromyalgia Support Group will be celebrating our 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 appea...red 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)
Tickets £10
Pay via PayPal to anneprit@tiscali.co.uk or email annefibro@gmail.com or buy tickets at any of our monthly meetings Tel: Anne 07912 084 549 See link below http://www.bbc.co.uk/…/the-best-medicin e-why-this-comedian-…
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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.
2017 was a challenging year for me and cycling helped a lot, which resulted in just over 1000 miles on the bike. The problems I was battling eventually disappeared but my passion for cycling remained. I have decided to challenge myself even more in 2018 and I entered the ballot for the Prudential RideLondon Surrey 100. To my surprise, I have secured a place in the ride and I am due to take part on 29th July 2018.
My training already started and I thought that since cycling helped me battle my problems it would be great if I can do the same to help others.
And now about my chosen charity, Fibromyalgia Action UK.
As Fibromyalgia is becoming more widely recognised it's become apparent that some of the people around me are sufferers.’’
To donate visit Michal’s JustGiving Page: https://www.justgiving.com/fundraising/mi chal-gondolewski
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Fibromyalgia Action UK Trustee, Simon R. Stones, is attending #EULAR2018 this week - the Annual European Congress of Rheumatology. This Congress is one of the largest of its kind in the world of rheumatology, attracting around 15,000 participants from around the world - including researchers, healthcare professionals and patient associations, like ours.

Master's student and psychotherapist in training, Zoe Ullman, is still looking for people with fibromyalgia to take part in her study, looking at ways in which people with fibromyalgia experience talking therapies. Taking part will involve either a face-to-face interview, Skype interview or telephone interview, whichever is most convenient for you. To find out more, please contact Zoe using the details on the poster. #Research #ResearchOpportunity #FibromyalgiaResearch

Right now there are around 6.5 million carers in the UK, looking after family and friends. Since caring is part of being human and at the heart of family life, many people don’t identify themselves as carers - they feel they are just doing what anyone else would so they don’t always know what support is available to them.
This #CarersWeek, Carers Week are coming together to build communities that support carers to stay Healthy and Connected. Caring can be a hugely rewarding experience, enriching relationships and bringing satisfaction and wellbeing. However, the hours of care that the 6.5 million carers provide for loved ones often comes at a cost to their own health and wellbeing.
All of us, wherever we live, whatever we do, have a part to play. https://www.carersweek.org

NEW BOOK ABOUT FIBROMYALGIA AND CHRONIC ILLNESS
‘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 cond...itions.
The eBook is available to pre-order on Amazon now: https://www.amazon.co.uk/Dear-Chronic-I‚Ä ¶/‚Ķ/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/pippa stacey.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: spooniesurvivalkits@gmail.com
Pippa Stacey: lifeofpippablog@gmail.com #DearChronicIllness Facebook: /spooniesurvivalkits Twitter: @SpoonieSurvival Instagram: @SpoonieSurvival Etsy: 'Spoonie Survival Kits'
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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.
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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 r...
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today we turn the spotlight on our Regional Coordinators :)

Next week, from 11th to 17th June, is #CarersWeek. Please pledge your support for carers here: https://www.carersweek.org/get-involved/p ledge-support via Carers Week

Did you know that around 20 million people in the UK volunteer each year? Their efforts contribute around £22.6 billion to the economy! #VolunteersWeek #VolunteersWeekScot

Tell us why you volunteer! Save and print the image, and take a photograph telling us why you volunteer. It's #VolunteersWeek #VolunteersWeekScot, and we're celebrating your efforts!

they were there for me when I wanted information, when I was diagnosed and had no idea about FM and didn't know where to go I found this site through a google search and they have been so helpful, and understanding,

This site is very clear on information,I don't feel alone anymore there is always someone to talk to .Thank you FMAUK.

This site has saved my sanity during the past few weeks. I've learnt more fro here than anywhere else. I just wish that someone could help sort my pain meds out succesfully! I'm on so much now (all essential), and at 74 in years, but really an overgrown teenager at heart, I'm becoming more and more lost, depressed & frustrated at not being able to do what I want to do. I thank God for a pure 24ct gold husband who supports me 100%, a wonderful GP who actually believes in the existence of FM, and this Forum, which has such great info on it, and which helps me to realise that I'm not alone in my fight. Thank you so very much. Dorriemouse. XxX.

Thank you so much for all your help and understanding.

So happy I have found a charity that will help with Fibromyalgia. People need to know about this, just as much as other diseases so we can help and improve treatments and research! My mum has this and it has only been the last few years that I have known about FM, which back then we couldn't find anything about it! She's always in pain, it affects her daily life which is sad :(. If only everyone knew about it. Can anyone think of a challenge to get social media involved and raise awareness with this? We need it to go viral x

Love this page. Always look for tips and advice. Waiting for a scan on my ankle as pain has been unbearable only to have a new pain in my head behind my left ear this week. Like a burning stabbing pain. Thought I has ear infection at first but it's not actually in the ear. Any one had it on their head?

It's great to have so much information to hand, I've been suffering for 10 years and only just received a diagnosis on Dec 23rd after seeking a second opinion from the states, l have a doctor's appt in theorning to see where to go from here as my FM effects my mobility, l can't exercise because it made me worse and I've often considered buying a wheelchair. Reading the many articles posted, I realise I have a lot more symptoms that even l was aware of. Not being able to wear a wired bra for instance, l thought it was just because I am a 36HH but discovered it's a common problem with FM sufferers. The thing a dislike the most is having my 4 (now 5yo) have to help me get dressed because on a bad day l just can't do it by myself. Still things are looking up, at least know I'm not going crazy. Plan and progress is my task this year.

ISOLATION and DOCTORS That's it !!!!! When I have the horrendous pain in the Ribs,it causes Breathlessness and dizziness.Does anyone know why or what helps it?????????

I've been using the info, buying from the shop and awareness raising with and for FMAUK for many years!

Still the only fibromyalgia resource and charity to bother with. I am always giving out the website address to new people x

I just watched the program on BEN about Fibromyagia would just like to say thank you so much for talking about this condition, I felt so lonely when I was diagnosed 6 years ago but now more people are hearing about it and taking it seriously it's a huge relief!!

I'll keep fighting too!

Thanks again xxÔøΩ

I have fibromyalgia and when I emailed you for help I had no reply ÔøΩ

I found Fma on Google joined the group and then read your on here , so glad to have found you x

Hi I'm a fibro sufferer have been for along time I make and print bags in my spare time I have a page on fb will be launching a fibro fighters bag today and will be sending half of the takings to yourselves. Just wondering one if I can post on here and two on my packaging I put a sticker with my business name and how to find me on and was wondering if u have stickers I can buy with your Web details on I could add to it. If not its fine I can get some made or write your details on. Thank you xx

Glad to be able to talk to someone who is in the same boat, I am not alone

Fabulous place for resources by a friendly team :)

Well done to all at the charity for all their hard work

Brilliant site with lots of advice and details on the latest news & research

A very useful page and charity. Good advice especially for those suffering from this painful illness. Th Pai is Real

It's nice to see how other ppl are getting on and not be judged by how you are feeling as understand x

Can anyone tell me if they suffer from really painful Achilles heel and calf pain, I'm finding it a struggle to walk or to stand any ideas?

they were there for me when I wanted information, when I was diagnosed and had no idea about FM and didn't know where to go I found this site through a google search and they have been so helpful, and understanding,

This site is very clear on information,I don't feel alone anymore there is always someone to talk to .Thank you FMAUK.

This site has saved my sanity during the past few weeks. I've learnt more fro here than anywhere else. I just wish that someone could help sort my pain meds out succesfully! I'm on so much now (all essential), and at 74 in years, but really an overgrown teenager at heart, I'm becoming more and more lost, depressed & frustrated at not being able to do what I want to do. I thank God for a pure 24ct gold husband who supports me 100%, a wonderful GP who actually believes in the existence of FM, and this Forum, which has such great info on it, and which helps me to realise that I'm not alone in my fight. Thank you so very much. Dorriemouse. XxX.

Thank you so much for all your help and understanding.

So happy I have found a charity that will help with Fibromyalgia. People need to know about this, just as much as other diseases so we can help and improve treatments and research! My mum has this and it has only been the last few years that I have known about FM, which back then we couldn't find anything about it! She's always in pain, it affects her daily life which is sad :(. If only everyone knew about it. Can anyone think of a challenge to get social media involved and raise awareness with this? We need it to go viral x

Love this page. Always look for tips and advice. Waiting for a scan on my ankle as pain has been unbearable only to have a new pain in my head behind my left ear this week. Like a burning stabbing pain. Thought I has ear infection at first but it's not actually in the ear. Any one had it on their head?

It's great to have so much information to hand, I've been suffering for 10 years and only just received a diagnosis on Dec 23rd after seeking a second opinion from the states, l have a doctor's appt in theorning to see where to go from here as my FM effects my mobility, l can't exercise because it made me worse and I've often considered buying a wheelchair. Reading the many articles posted, I realise I have a lot more symptoms that even l was aware of. Not being able to wear a wired bra for instance, l thought it was just because I am a 36HH but discovered it's a common problem with FM sufferers. The thing a dislike the most is having my 4 (now 5yo) have to help me get dressed because on a bad day l just can't do it by myself. Still things are looking up, at least know I'm not going crazy. Plan and progress is my task this year.

ISOLATION and DOCTORS That's it !!!!! When I have the horrendous pain in the Ribs,it causes Breathlessness and dizziness.Does anyone know why or what helps it?????????

I've been using the info, buying from the shop and awareness raising with and for FMAUK for many years!

Still the only fibromyalgia resource and charity to bother with. I am always giving out the website address to new people x

I just watched the program on BEN about Fibromyagia would just like to say thank you so much for talking about this condition, I felt so lonely when I was diagnosed 6 years ago but now more people are hearing about it and taking it seriously it's a huge relief!!

I'll keep fighting too!

Thanks again xxÔøΩ

I have fibromyalgia and when I emailed you for help I had no reply ÔøΩ

I found Fma on Google joined the group and then read your on here , so glad to have found you x

Hi I'm a fibro sufferer have been for along time I make and print bags in my spare time I have a page on fb will be launching a fibro fighters bag today and will be sending half of the takings to yourselves. Just wondering one if I can post on here and two on my packaging I put a sticker with my business name and how to find me on and was wondering if u have stickers I can buy with your Web details on I could add to it. If not its fine I can get some made or write your details on. Thank you xx

Glad to be able to talk to someone who is in the same boat, I am not alone

Fabulous place for resources by a friendly team :)

Well done to all at the charity for all their hard work

Brilliant site with lots of advice and details on the latest news & research

A very useful page and charity. Good advice especially for those suffering from this painful illness. Th Pai is Real

It's nice to see how other ppl are getting on and not be judged by how you are feeling as understand x

Can anyone tell me if they suffer from really painful Achilles heel and calf pain, I'm finding it a struggle to walk or to stand any ideas?

they were there for me when I wanted information, when I was diagnosed and had no idea about FM and didn't know where to go I found this site through a google search and they have been so helpful, and understanding,

This site is very clear on information,I don't feel alone anymore there is always someone to talk to .Thank you FMAUK.

This site has saved my sanity during the past few weeks. I've learnt more fro here than anywhere else. I just wish that someone could help sort my pain meds out succesfully! I'm on so much now (all essential), and at 74 in years, but really an overgrown teenager at heart, I'm becoming more and more lost, depressed & frustrated at not being able to do what I want to do. I thank God for a pure 24ct gold husband who supports me 100%, a wonderful GP who actually believes in the existence of FM, and this Forum, which has such great info on it, and which helps me to realise that I'm not alone in my fight. Thank you so very much. Dorriemouse. XxX.

Thank you so much for all your help and understanding.

So happy I have found a charity that will help with Fibromyalgia. People need to know about this, just as much as other diseases so we can help and improve treatments and research! My mum has this and it has only been the last few years that I have known about FM, which back then we couldn't find anything about it! She's always in pain, it affects her daily life which is sad :(. If only everyone knew about it. Can anyone think of a challenge to get social media involved and raise awareness with this? We need it to go viral x

Love this page. Always look for tips and advice. Waiting for a scan on my ankle as pain has been unbearable only to have a new pain in my head behind my left ear this week. Like a burning stabbing pain. Thought I has ear infection at first but it's not actually in the ear. Any one had it on their head?

It's great to have so much information to hand, I've been suffering for 10 years and only just received a diagnosis on Dec 23rd after seeking a second opinion from the states, l have a doctor's appt in theorning to see where to go from here as my FM effects my mobility, l can't exercise because it made me worse and I've often considered buying a wheelchair. Reading the many articles posted, I realise I have a lot more symptoms that even l was aware of. Not being able to wear a wired bra for instance, l thought it was just because I am a 36HH but discovered it's a common problem with FM sufferers. The thing a dislike the most is having my 4 (now 5yo) have to help me get dressed because on a bad day l just can't do it by myself. Still things are looking up, at least know I'm not going crazy. Plan and progress is my task this year.

ISOLATION and DOCTORS That's it !!!!! When I have the horrendous pain in the Ribs,it causes Breathlessness and dizziness.Does anyone know why or what helps it?????????

I've been using the info, buying from the shop and awareness raising with and for FMAUK for many years!

Still the only fibromyalgia resource and charity to bother with. I am always giving out the website address to new people x

I just watched the program on BEN about Fibromyagia would just like to say thank you so much for talking about this condition, I felt so lonely when I was diagnosed 6 years ago but now more people are hearing about it and taking it seriously it's a huge relief!!

I'll keep fighting too!

Thanks again xxÔøΩ

I have fibromyalgia and when I emailed you for help I had no reply ÔøΩ

I found Fma on Google joined the group and then read your on here , so glad to have found you x

Hi I'm a fibro sufferer have been for along time I make and print bags in my spare time I have a page on fb will be launching a fibro fighters bag today and will be sending half of the takings to yourselves. Just wondering one if I can post on here and two on my packaging I put a sticker with my business name and how to find me on and was wondering if u have stickers I can buy with your Web details on I could add to it. If not its fine I can get some made or write your details on. Thank you xx

Glad to be able to talk to someone who is in the same boat, I am not alone

Fabulous place for resources by a friendly team :)

Well done to all at the charity for all their hard work

Brilliant site with lots of advice and details on the latest news & research

A very useful page and charity. Good advice especially for those suffering from this painful illness. Th Pai is Real

It's nice to see how other ppl are getting on and not be judged by how you are feeling as understand x

Can anyone tell me if they suffer from really painful Achilles heel and calf pain, I'm finding it a struggle to walk or to stand any ideas?