Fibromyalgia Friends Together is pleased to report that we have received a donation from Fibromyalgia Scotland, who’s Trustees decided that due to health, they were no longer sadly able to keep their organisation going. We are overwhelmed by their generosity receiving a donation from them of over £8,000! This boost to our resources will mainly be used towards our core running costs, to enable more people to access our services and to raise awareness of Fibromyalgia.
We are looking forward to welcoming you to our next Fibromyalgia Friends Together meeting this coming Monday!
This month, we are delighted to be joined by the Lightbulb Project.
They are a fantastic local service dedicated to helping people stay safe, warm, and independent at home. They will be discussing housing support, including home adaptations, technology to assist with daily living, and general housing advice. It is a great chance to see what practical support is available to make life a little easier.
Please note the timings for this session. You are welcome to arrive early (from 12pm) to get settled before the formal start at 1.15pm.
Doors Open: 12:00 pm
Main Meeting Starts: 1:15 pm
Close: 3:00 pm
Refreshments will be available for purchase before the meeting begins. If you would like tea or coffee, we kindly ask for a donation towards the cost of these.
We will be meeting at:
Bright Hope House in North West Leicestershire
Full address: Bright Hope House
Talbot Lane
Swannington
Leicestershire
LE67 8QT
Google maps link: https://www.google.com/maps?
what3words: ///trying.items.fuses
Look out for people wearing lanyards – if you need any support joining us for the first time or with anything else on the day they can help!
If you are having problems finding us, then please call 07825 610 925.
We look forward to seeing you there for a cuppa and a chat!
Warm regards,
The Fibromyalgia Friends Together Team
January can be a difficult month for those of us living with Fibromyalgia.
The weather is often cold and damp, causing our pain levels to flare, yet the world around us is shouting about “New Year Resolutions,” gym memberships, and doing more.
At Fibromyalgia Friends Together, we believe that traditional goal-setting often sets people with chronic illness up to fail. It doesn’t account for fatigue, pain, or the unpredictable nature of our condition. It encourages the “Boom and Bust” cycle—doing too much on a good day and paying for it for the next three.
This year, instead of rigid resolutions, we invite you to try Gentle Intentions. Here is a simple tool to help you look ahead without punishing yourself.
The problem with a standard goal (like “I will declutter the house” or “I will walk for 20 minutes every day”) is that it assumes your energy levels are the same every morning. We know that isn’t true.
Instead, try setting your intentions using the Traffic Light System. This gives you three different ways to succeed, depending on how many “spoons” you have when you wake up.
This is for days when your pain is manageable and your brain fog is low.
The Goal: The ideal version of what you want to achieve.
This is for the days where you feel “meh.” You aren’t in a crisis, but you are tired.
The Goal: A scaled-back, gentle version of the task.
This is for days when your body is shouting “No.”
The Goal: Rest. On a Red Day, stopping to rest isn’t “giving up” on the goal—it is part of the goal. It is maintenance work to help you get back to Amber or Green.
If the Traffic Light system feels like too much right now, try the concept of One Tiny Thing.
Pick one intention for the year, but make it small. Then, make it smaller.
Instead of “I will read 20 books,” try “I will listen to a story when my eyes hurt.”
Instead of “I will cook from scratch every night,” try “I will add one piece of fresh veg to my easy meals.”
Instead of “I will go for a walk,” try “I will open the back door and breathe the fresh air for 30 seconds.”
If you are reading this and feeling the weight of the “New Year, New Me” pressure, please take a deep breath. Your worth is not measured by your productivity. Living with Fibromyalgia is a full-time job in itself.
Be gentle with yourself this year.
Many people in our community rely on Personal Independence Payment (PIP) to help manage the additional costs of living with fibromyalgia — including travel to medical appointments, heating, mobility aids, and daily living support.
The government has recently expanded the terms of the ongoing PIP review to include current claimants, not just future applicants. This means people already receiving PIP could be affected by any recommendations that result from the review.
For those living with long-term pain, fatigue, and daily challenges, this uncertainty can be especially worrying. PIP is a vital source of stability, independence, and dignity for many.
As a charity, Fibromyalgia Friends Together is committed to:
Raising awareness of issues affecting people with fibromyalgia
Providing clear, reliable information to our community
Amplifying the voices and experiences of those with long-term health conditions
Supporting efforts that protect essential disability support
Understanding changes to PIP — and how they may affect you — is an important part of that mission.
Disability-focused organisations are gathering people’s views to ensure the experiences of those who rely on PIP are represented during the review.
One of the questions being asked is whether the government should rule out cuts to PIP for current claimants.
If you would like to share your thoughts, you can take part in the short survey by the Organise Network here:
👉 Share your view on PIP changes
Your response can help highlight why stable, reliable financial support is essential for people managing complex, fluctuating conditions like fibromyalgia.
Fibromyalgia often brings:
Chronic pain
Fluctuating mobility
Fatigue
Impact on ability to work
Higher daily living costs
Any changes to PIP could have real-world implications for the wellbeing and independence of thousands of people with fibromyalgia across the UK.
We will continue to monitor updates and share information as the review progresses.
Nominate Fibromyalgia Friends Together for us to have the chance to win £1,000 for our charity!Living with Fibromyalgia can be overwhelming — this is why we set-up Fibromyalgia Friends Together – making sure no one has to face it alone. 💜
Right now, our Charity has a chance to receive much-needed funding through the Movement for Good Awards, but they need nominations from people like us.
✨ If this charity has touched your life — or if you simply want to make a difference for someone struggling with chronic pain, fatigue and many more symptoms on top of that — then, please nominate us.
👉 https://movementforgood.com/#nominateACharity
(Search Fibromyalgia Friends Together, it will then display our charity number 1210681)
A single nomination can change someone’s world. Thank you. 💜
#SupportFibromyalgia #MovementForGood
Fibromyalgia Friends Together Annual General Meeting as a CIO takes place on Thursday 9th October 2025 from 10.00 – 11.30 AM. Below is the agenda for this meeting. As a CIO the voting members are the Trustees.
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A BIG THANK YOU to our supporters who have shopped with us through easyfundraising.
Whenever you buy anything online – from your weekly shop to your annual holiday – you can raise free donations for Fibromyalgia Friends Together.
There are over 8,000 retailers on board ready to make a donation – including eBay, Argos, John Lewis & Partners, ASOS, Booking.com and M&S – and it won’t cost you a penny extra to help us raise funds.
All you need to do is: 1. Go to here (click) and join for free.
2. Every time you shop online, go to easyfundraising FIRST to find the site you want and start shopping.
3. After you’ve checked out, the retailer will make a donation to our group at no extra cost to you whatsoever! No catches or hidden charges.
We are really grateful to everyone who has supported us through easyfundraising. Thank you very much
Grants for People Living with Fibromyalgia
At Fibromyalgia Friends Together (FFT), we understand the financial challenges that can come with managing fibromyalgia. While we do not provide grants ourselves, we are committed to helping our community find the right sources of support.
One of the key organisations offering assistance is the Florence Nightingale Aid in Sickness Trust (FNAIST). This UK charity provides grants for items and services that improve quality of life for people of all ages living with illness or disability — including those with fibromyalgia.
The Trust awards grants where no other funding is available. These can cover:
🦽 Mobility and independence aids – such as wheelchairs, walking frames or stairlifts
🛏️ Medical equipment – including orthopaedic mattresses, nebulisers, or communication aids
🏠 Daily living support – household equipment and adaptations to make life easier at home
🌿 Respite and convalescent care – short breaks to aid recovery and reduce stress (not holidays)
Applications are open to people across the UK who are living with long-term health conditions, including fibromyalgia. To apply, a request must usually come from a healthcare or social care professional such as:
Applicants should demonstrate that:
✔️ The item or service requested is medically necessary
✔️ No statutory or other charitable funding is available
✔️ The support will significantly improve quality of life
To keep grants focused on essential needs, the Trust does not usually fund:
❌ Holidays or general leisure costs
❌ Items already purchased (retrospective funding)
❌ Services normally provided by the NHS or local authorities
If you believe you could benefit from a grant:
1️⃣ Speak to a professional – ask your GP, nurse, occupational therapist, or social worker to support your application.
2️⃣ Gather information – quotes, costings, and professional evidence of need are important.
3️⃣ Submit the application – completed forms should be sent to the Florence Nightingale Aid in Sickness Trust.
You can find full details and application forms on their website here:
👉 Florence Nightingale Aid in Sickness Trust – How We Can Help
At Fibromyalgia Friends Together, our goal is to support and empower everyone living with fibromyalgia. By signposting trusted charities like FNAIST, we hope to make it easier for our members and community to access funding that can improve daily life, independence and wellbeing.
Fibromyalgia changes our lives dramatically. The physically active find that they are no longer able to participate in activities they love. Even those among us who are academic who love to visit museums and art galleries find they are unable to cope. A visit to the theatre can be daunting. Younger members with young families find it too hard to keep up on visits to the park.
A lot of parks throughout the country are now investing in off road mobility scooters at their sites to help anyone with a disability enjoy being able to get outdoors. I have spoke to a number of these sites and they all report the dramatic change it has bought to peoples lives. The scooters they are investing in are called Trampers.
Deborah Aydinli and I, Janet Hall went to Elvaston Castle, Derbyshire to trial 2 Trampers. We prearranged our visit, booking the trampers. We both had a marvellous time, we felt like kids again because we were given our freedom.
We thought it would be helpful to members to know of accessible sites, so we are complying details for our members. If you have had a good day out, which has been helped by the availability of a wheelchair, not excessive walking, plenty of places to sit and rest please let us know about your experience, for us to include in our accessible places.
Accessible Places
Tramper Sites
Leicestershire
Bradgate Park, Newtown Lynford LE6 0HB 1 Tramper
Booking needed contact Estate Office 01162362713
The Outwoods LE11 3YG
Booking through the Ranger 07890999176 2 Trampers
Derbyshire
Derbyshire County Council has trampers for hire at a number of sites. It is
necessary to provide 2 forms of identification such as passport, driving
licence or blue badge plus a recent utility bill.
You can pay by the hour or choose to become a registered user which is
£25 for the year. A registered user can use all the sites.
Elvaston Castle Country Park – 01629 533870
High Peak Junction Visitors Centre – 01629 533298
Middleton Top Countryside Centre – 01629 533298
Shipley Country Park – 01629 533991
Tapton Lock Visitor Centre – 01629 533020
Cresswell Crags Visitors Centre – 01909 720 378
National Trust
Calke Abbey – 01332 863822
Nottinghamshire
National Trust – Clumber Park – 01909 476592
Rufford Abbey Country Park
Ollerton NG22 9DF – 01623 821338
( The motability scooters for hire are not Trampers but are suitable for the
park)
Lincolnshire
National Trust – Belton House nr Grantham – 01476566116
