- Take part in the TwoPointSixChallenge
- CoronaVirus and Fibro
- Resource Request
CoronaVirus and Fibro
For more info on fibro and coronavirus see www.fmauk.org/coronavirus
Resource Request
Click here to request resources
Corona Virus: We are still here but physical orders are delayed as our staff are remote working. When we return to the office we will clear the backlog ASAP. More Info on Coronavirus Our helpline continues to be available between 10 and 4 weekdays on 0300 999 3333
Contact Form Issues - We are having some issues with our contact forms. If they do not work please email head.office@fmauk.org.
Volunteer Week: Jenny's story
Hi All, my name is Jenny Timms, I am a volunteer for FMA UK, as a Regional Co-Ordinator for the Midlands area.
I have followed FMA UK for many years as I was diagnosed with Fibromyalgia in 2000.
Then recently I came across an advert for my role, on the FMA UK website. I then applied and was given an interview, which I was successful in and was then offered the position.
During my time as Regional Co-Ordinator I have been given several opportunities.
One being given training and further learning about the benefits system, which I take a great interest in as I know how our condition can greatly affect our incomes and therefore our life!
Janet Horton: Why I volunteer for FMA UK
My role in FMA UK is as a trustee and my specific role is Benefits Adviser, I also respond to all the emails that come in on the This email address is being protected from spambots. You need JavaScript enabled to view it. emails. I help in any other way also, as needed.
I became involved with FMA UK - then Fibromyagia Association UK in November 1993 when I got my official diagnosis of Fibromyalgia, I had had it 4 years by then. I immediately offered to do benefits advice as I had been volunteering for Citizens Advice since 1990. The offer was accepted and I have been the Benefits Adviser ever since. I was not a trustee at the time but became one when Bob Stewart took over FMA UK in 1997. I took on the role of responding to emails in the early 2000's.
Apart from being available on the Benefits Helpline every Monday, Wednesday and Friday up until 2000 and since then Monday and Friday, I have attended all the conferences that FMA UK have arranged, travelled several times to London for meetings with various bodies of Government including the Chief Medical Officer of the DWP back in the early 2000's.
Kelly Bisgrove: My experience with fibromyalgia
I wanted to share my story, to raise awareness on the long-term condition called Fibromyalgia, and
how it has been affecting my life. Maybe some of you can relate?
It’s a condition which can cause widespread pains/aches, extreme tiredness, muscle stiffness, ‘fibrofog’, headaches, and IBS; (to name a few). What I’ve learned from this is there’s a range of symptoms, and there is no test to prove it – which is why it seemed so difficult to get a diagnosis.
A year ago, I went through some trauma which changed my life. For weeks, I was ill and felt
miserable, it became difficult to get out of bed every morning - this is when my symptoms
worsened. While working full-time, it was a challenge to take time off work, going back and forth to
doctors/hospitals to get blood tests, and medication to help me through the process.
Amber Price: My experience with fibromyalgia and why I set up a support group
I've always been a very positive, happy person, but being diagnosed with Fibromyalgia when I was 25 changed my life immensely. I went from a hardworking, busy individual to having to change my whole lifestyle to manage the many symptoms that come with Fibromyalgia. I lost my career in Business Travel in the Oil industry, lost many friends who could not understand the condition and how it affected me, and lost a lot of my confidence in daily life. However, I refused to let the condition bring me down. I made it a point to find projects to do and ways of working from home, to keep my mind busy, giving me purpose and not allowing myself to get depressed. However, it can be very challenging and as much as this helped me, I still found myself extremely isolated and lonely. So, I then decided this year to see if there was anyone else in the community with the condition who would be interested in joining to make a support group. I posted on our local village page on Facebook and was surprised to see lots of other ladies and a few men with the same condition in the village and nearby. I then contacted FMAUK for support in starting a new group and received lots of helpful documents and handouts to start it up, as well as contacts to help with any questions I had.
Georgia: How fibromyalgia impacted my life
I was always very active and driven. I did a sport or activity every night of the week. I loved Musical Theatre and sang and danced almost every day. I wanted to pursue Musical Theatre as a career and was training very hard to get there. Unfortunately this did not work out as I would have liked it to because of my fibro. I am very lucky to have very supportive people around me. My family have been great and support me through the anger, the pain and upset, the career downfall, the mental health and the tiredness. It has had a massive impact on my life, but I refuse to let fibro define me. I push through my pain everyday so I can provide a good life for myself and any future children I have. I'm still the same driven, ambitious person that I was before but now I have to fight myself more to have the energy to get there.
Exercising during lockdown with fibromyalgia
When the suggestion of working from home was first mentioned in relation to Covid-19, I had no concerns. Due to having fibromyalgia, there have been several occasions over the years when I’ve had to do exactly that due to being unable to go into the office. Normally that would only be for a day or two – with the longest time I think being two weeks – and more often than not I would be sitting on my bed using the laptop and propped up with pillows.
However – this was going to be more than just a couple of weeks – so I had to consider the best option for working. My chair is a rocking/nursing chair and I was fortunate that we had a small folding table which was a good height next to it. With the help of a cushion I was able to get a fairly comfortable work set up – which while not perfect, was suitable for a day’s work.
More Articles...
- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (10am - 12pm Mon and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
Trustee meetings are held monthly via Skype and last about 2 hours. There is an annual meeting that coincides with our group leaders’ meeting over a weekend.
If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
We are delighted to announce that our recent assessment for The Information Standard has been successful and we continue to fulfil the criteria for using the TIS logo on our publications.
The rigorous process that has to be in place ensures that up to date evidence is used and presented to people in an appropriate way. The process is ongoing and requires much diligence by everyone involved.
We would like to thank everyone who has worked on our publications or sent in their comments and suggestions for improvement
Important Notice‼️ | At the end of March, our JustGiving Text service which allows you to donate using your phone will be ending. Instead, you can now take advantage of our new Text service with Donr. To make a donation, text 'FIBRO' to 70085 to donate a default £10. This costs £10 plus a std rate msg.
Alternatively, you can opt to give any whole amount up to £20, by texting Fibro + the amount you wish to donate, e.g. FIBRO 5 to donate £5.
Please share to make our followers aware of our new text donation arrangement.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
