FMA UK was established in order to provide information and support to sufferers and their families. In addition, the Association provides medical information for professionals and operates a national helpline. Fibromyalgia Action UK is a registered charity administered primarily by unpaid volunteers. The majority of volunteers are also fibromyalgia sufferers who work extremely hard, despite..
"Hello! My name is Matthew, and I’ve suffered with fibromyalgia for the last 8 and half years. I’ve had some really bad times with the condition, but last year I decided to join my local gym. Last summer I started working out at the gym, where I started doing the treadmill and bike for 3 minutes and built it up over time. This year I decided to get a personal trainer whom I see once a week for an hour. What I really noticed first of all was going to the gym, and this is the reason why I was able to start running as I was building up my muscles. When I was at a good level with my fitness I downloaded a running app and over a 9 week period I built up to do 5k.
In my first week, I did 5 minute brisk walks to warm up and 60 seconds running then 90 seconds brisk walking and repeat the whole thing 7 times, then I finished off with a 5 minute brisk walk. I did it 3 times a week. It didn’t feel that I was actually running much, so it was pretty easy to start with. Over time, though, it started getting a little harder. I thought it would be a lot harder because of my fibromyalgia, but I kept going and the next week I increased my running to 90 seconds followed by 2 minutes of walking. It was very much a case of small improvements. I mean, only 60 seconds of running is hardly a big thing. Once I got to 5Km running distance, I started entering races. After I started doing the races, I decided to start increasing my running towards 10Km. I haven’t reached it yet – I’m on week 3 of 6 on my running schedule – but I’m well on my way.
What I have noticed is that, since I started exercising and running, my fibromyalgia has improved. I was a little cynical about this at the beginning, but I feel a lot stronger and more able to deal with the condition. Don’t get me wrong, the condition hasn’t gone away and there are still times when I have flare-ups, and the flare-ups seem to last as long, but I feel a lot stronger, happier, and healthier, and I can do more.
Because I started feeling a bit better with both the exercising and the running – both of which make you think about posture - I recently started looking at my posture and ways to improve it. My personal trainer suggested that I work on strengthening my core, and one of the exercises that he suggested doing was “the plank”. He said that to get the full benefit of my posture improving I should do core exercises at least five times a week. This made me stand better, and sit better. I now hold my shoulders in a different way and my arms feel more relaxed. All of these little improvements have added up to make the fibromyalgia more manageable.
At the start, it seemed hard to make the decision to actually exercise, to make changes in my life. Once I made the decision and stuck with it, it was and is a case of making small improvements, and slowly but steadily pushing myself forwards by pushing back the fibromyalgia"
On a twitter poll which we recently conducted, 87% of respondents said that they had fibromyalgia, with 13% not having it. What does this tell us? It tells us that the overwhelming majority of people who interact with us have fibromyalgia. And quite rightly – we are a fibromyalgia charity after all. But what it shows is the potential we have to reach new people. In order to raise awareness, we need to reach out to those who don’t have the condition or who have little or no knowledge of it. There are numerous ways we can get that awareness, and social media plays a massive part in it. Whether you like it or not, social media is increasingly becoming a massive part of people’s daily lives. And it is because of this, that we can use it to our advantage. Taking 30 seconds out of your day to make an engagement with the charity can benefit us massively – if everyone does one small action it can all add up. Liking, sharing and commenting on content can help our posts reach more people and in turn make more people become aware of fibromyalgia.
As someone who doesn’t have fibromyalgia, and someone who didn’t know about it before joining the charity, I feel strongly that social media can help us increase that much needed awareness. If someone doesn’t have fibro, or know anyone with it, then there is little out there that would make them aware of the condition. We want to change that – and with your help, we believe we can.
The above article is my own personal opinion on how we can boost awareness. If you have any suggestions/ideas on raising awareness, please do contact me by email at Reece.Henderson@fmauk.org
As the communications officer for Fibromyalgia Action UK, you’d be forgiven for thinking that I know it all about fibromyalgia. The truth is I don’t know it all. I hadn’t even heard of the word before I joined the charity. For a while, I had trouble even pronouncing it, never mind knowing anything about it. Since then, I’ve began learning about the condition, as well as hearing personal experiences of it from those in the office and everyone on social media. Hearing how destructive and life changing it can be for sufferers, I now struggle to comprehend how very few people know about it. I now know just how devastating it can be. It’s something that I’m fortunate not to have, but I know it’s something which could impact me or my family at some point. And that’s why I want to make people aware of the condition – especially people who haven’t ever heard of it. But I ask myself, why didn’t I know what fibromyalgia was?
I’d heard of Lyme Disease, I’d heard of ME, I’d heard of Arthritis, But I’d never heard of fibromyalgia.
I’m 19 and when speaking to my friends, none of them have a clue what it is (just like I didn’t before joining FMAUK) – but it isn’t our fault as young people. In my personal opinion, there is near enough nothing that would make us aware unless we knew someone with, or had fibromyalgia ourselves.I also know that it is just good fortune that I do not have it as it can affect men, women, and children.We need to increase awareness of this cruel condition, and we need to make younger people aware. We’ve a long way to go, but by utilizing social media, we have the chance to do so and make people aware of this condition. To reach people who don’t know about fibro and make them aware of the condition, we have to reach beyond our social media pages.
Audiobooks can be a great way to continue reading when fibromyalgia makes it difficult to concentrate or hold up a book for long periods of time.
Listening Books is a national UK charity that offers a postal and online audio book library service for anyone who finds that a chronic condition or disability makes reading difficult. Membership starts from £20 per year, and they also provide free memberships for anyone who couldn’t cover this.
Unfortunately, we are going to have to restrict our helpline service for the next couple of weeks as we are critically short of volunteers to operate it. Therefore, we will be replacing the welcome message to inform callers of when the helpline is best to be contacted while it operates in this limited fashion.
We are currently reviewing how we operate this service as it has been hard to maintain with volunteers but we are not in the position yet to have paid staff operate it. It has always been a critical service that has provided much needed support and signposting of information. 150 returned voicemails from the helpline over the last 6 weeks gives you an indication of how important this service is.
We will keep the community informed of how this progresses but we remain committed to offering this and other services and hope to find a solution that allows us to provide a reliable, informative helpline service.
With this in mind we are reposting our advert for helpline volunteers. If you have already applied in the last few weeks then you should have been contacted and we will be processing your application.
We offer to train volunteers by placing them on the helpline partnerships training events starting with the essential helpline skills course. This is provided free to volunteers and our expenses policy means that a volunteer will not be out of pocket for any expenses while helping the charity.
Below is the start of our year in review document. You can read it all by clicking on the link at the end.
Welcome to our 2018 report where we show some of the activities that FMA UK has carried out over the past year. The charity plans to increase its communication output about its activities. We have already increased our content on social media due in large part to recruiting our digital apprentice Reece Henderson to concentrate on this area.
As always, the charity’s main aim is to raise awareness of the condition and ensure those that are newly diagnosed are signposted to information and resources that can help them. We participated in the patient participation event at Bath hospital in November, attended events at parliaments, as well going along to partner organisations events to represent our condition.
Our charity activities are predominantly carried out by volunteers and supported by a small number of staff. So please read on and find out some of what the charity has been up to across the UK as well as some of the events we have attended and what we are planning for the future.
Adam Warner has run 5k Inflatable Run in Farborough to raise funds for FMA UK because three important peple in his life with fibromyalgia: his Mum, Sister and a very special friend.
Adam tells us why he did this challenge: ''Because this is a condition that people can't really see I think is gets overlooked by people who think you're just a bit tired or in a bit of pain, but they'd be wrong so anything you can give will be massively appreciated and will go towards trying to find a cure for Fibromyalgia''.