Put your story of fibro in front of the experts

We are excited to announce that FMA UK will participate in a Fibromyalgia Sandpit hosted by ORUK in central London on September 30, 2025.

This is an event which will bring together a multidisciplinary group of experts from the NHS, the musculoskeletal (MSK) community, the third sector, and other interested parties to discuss a wide range of issues related to this often misunderstood and under-researched condition.

We need our community to contribute their experience to this discussion. We are looking to feature videos that represent our community and show the experts the challenges we face. We will be arranging interviews over teams in August and if you want to take part then fill out this form below. 

Tips & Tricks To Help With the Heat

This year is breaking temperature records over and over again and the majority of people are struggling at times. In this country, our homes are insulated to keep the warmth in during the cold weather and we don't have the water saving infrastructure or cultural differences such as closing everything in the afternoon for a siesta that other countries have. Even for those of us who find our Fibromyalgia symptoms ease with heat, these things can make it very difficult and of course there is heat and then there is 2025 heat! 

Back in 2020, Jenny Timms wrote an article for the FMA UK website entitled "How heat can can impact my Fibromyalgia" and her experience of experiencing the heat in an extreme way is backed up by a recent study which suggests that at least some people in the Fibromyalgia Community have additional temperature sensing nerves. Read the article Temperature Sensitivity in Fibromyalgia here. 

Although it is good to know that it is not "just me", what we really need to know is how to deal with it, so I posted the question on our Facebook Group "What Tips help with coping with the heat?" and we were fortunate to receive the Tips and Tricks below:

Wearables:  

• Neck fans and chargeable hand fans that go wherever you do
• Ice towels and frozen wheat bags for the neck, chest, or to tuck under your sheets
• Wear loose cotton or linen clothing to help your skin breathe
• Choose sunglasses and a wide-brimmed hat when heading outdoors
• Take an umbrella for portable shade

Bedtime

•  Pet cooling mats — yes, for humans too — pop them in the fridge before bed then under your sheets
• Spritz cold water on your hair before bed to cool down long enough to fall asleep
• Lay a towel on your pillow to wick away sweat and stay cooler

Clever Cool-Down Routines

• Run your wrists under a cold tap for a quick refresh
• Keep damp towels in the freezer to roll around your neck
• Take multiple cool showers throughout the day
• Retreat to the shadiest room in the house for a lie-down with a fan
• Try the “fan-forced duvet fort”—a surprising trick that makes a real difference and great fun for the kids too (Google it)

Keep Your Home Cool

•  Close curtains, windows, and doors during the day to block out heat
• Open windows and doors in the evening to let cooler air in
•  Place fans in as many rooms as possible for cross-ventilation
• Air coolers with ice packs for instant heat relief

Meals

• Drink much more water than you think you need—it’s essential
• Eat cold or cool food

Be kind to yourself. Stay hydrated before you overheat, take breaks often, and remember: pacing yourself isn’t weakness—it’s wisdom. You don’t need to push through the heat. Instead, give yourself compassion and rest.

Understanding Health-Related Guilt in Fibromyalgia

Living with fibromyalgia can be challenging, not only due to its physical symptoms but also because of the emotional and economic burdens it can impose. Recently, Helen reached out to us, expressing her concern about whether it was acceptable to hire a cleaner for her home. She worried that others might perceive her as lazy for doing so. 

Health-related guilt manifests in various forms and can significantly amplify an individual's struggles. A 2021 study explored this issue, revealing that participants often grappled with diagnostic uncertainty and questioned the legitimacy of their pain. Many felt that their actions or lack thereof —could impact those around them. This guilt surrounding health and the inability to engage in what society deems "normal" is a common experience for many living with fibromyalgia or chronic pain. The research indicated that such guilt is linked to increased pain and diminished functionality. 

The study concluded: "Health-related guilt is perceived by people living with chronic pain as a consequence of the expectations they impose on themselves and those, they believe others have of them. This guilt has a negative impact, leading to further distress and withdrawal." Our environment, our interactions within it, and our self-worth can intertwine, exacerbating our pain and reducing our ability to function. Many individuals receiving benefits have shared their concerns about how they can spend their Personal Independence Payment (PIP). 

This financial support is intended to help cover the additional costs associated with chronic conditions. Importantly, recipients can use these funds for anything that alleviates these extra expenses, without needing to justify their choices to anyone. Common expenditures include:

• Higher energy bills for maintaining a comfortable home environment or powering necessary equipment.
• Hiring a cleaner or laundry services.
• Purchasing special diets, clothing, or equipment that aids in managing their condition.

While sensational headlines might suggest that a "PIP recipient goes to the gym at taxpayers' expense," it's crucial to recognise that such activities are often medically advised and can be subsidised through programmes like those offered by Nuffield Health. Unfortunately, societal pressures can contribute to the health-related guilt that exacerbates both physical and mental distress. PIP is designed to enhance the quality of life for individuals with chronic conditions, enabling them to lead more fulfilling lives, including the ability to work if they are able. Just as we would never question the necessity of a wheelchair or glasses, we should not question the need for a cleaner if it allows someone to maintain a clean home and enjoy their living space. 

Whether funded through benefits or personal savings, investing in items or services that facilitate a more normal life should be embraced. It is essential for individuals with chronic health conditions to feel included in society. We must allow ourselves to seek help from resources that can improve our quality of life. To address Helen's question directly: it is not about what others think; it is about living the best life we can.

[Health‐related guilt in chronic primary pain: A systematic review of evidence - Serbic - 2022 - British Journal of Health Psychology - Wiley Online Library](https://bpspsychub.onlinelibrary.wiley.com/doi/full/10.1111/bjhp.12529)

Welfare Reform Update: Confusion, Climbdowns, and a Continuing Fight

After a whirlwind series of government U-turns and last-minute changes, many are left wondering where Labour’s welfare reform plans now stand. The short answer: the PIP 4-point rule is gone, but major concerns remain.

The most controversial element of the Universal Credit and Personal Independence Payment Bill was the PIP 4-point rule. Amendments to the Bill removed this change completely and there will be no immediate changes for existing or new PIP claimants at present. Any future changes to PIP eligibility will depend on the outcomes of the upcoming Timms review.

The Bill was renamed the Universal Credit Bill as there will still be changes affecting Universal Credit. These changes will affect new claimants with existing claimants being protected. From April 2026 the health element of UC will face a nearly 50% cut and a freeze in payments. Existing UC LCWRA claimants will be protected from both the cut and the freeze.

The criteria for Severe Conditions still remains extremely strict, with no concessions made during the latest debates. Other proposals such as the plans to abolish the Work Capability Assessment, combine ESA and JSA and restrict PIP-linked UC payments for 18–21-year-olds remain in play however, these will need separate legislation and further information.

The Timms Review had already been set up and is due to report back in November 2026 but the government were trying to change things before the results were out. This review is now central to any future changes to PIP, as it is wide-ranging and may propose a full overhaul of the assessment system. It claims to include co-production with disabled people but past consultations have inspired little trust.

Despite the bill passing its first vote, the government was forced into major retreats under pressure from disabled people and advocacy groups. The removal of the PIP 4-point rule alone wipes out most of Labour’s projected £5 billion savings. The Bill has now passed through it's final reading in the House of Commons as a money bill, which restricts the House of Lords from making changes.

The fight is far from over — but campaigners have shown that real pressure can shift policy.

In summary: The bill has been weakened and the worst proposal is gone but further cuts and uncertainty may still lie ahead. Disabled people are bracing for the next round and several of the MPs who rebelled against the government have been suspended from the parliamentary Labour party however, in the short term, existing benefit claimants are being protected from the changes.

August 7th & 21st

Online Support Group

Join Hazel & Zoe for an hour of fibromyalgia chat and sharing experiences. Thursday 7th and 21st August from 6.30 - 7.30pm. Meeting will take place on MS Teams - camera can be on/off. Please register to confirm attendance - MS Teams link will be sent automatically. If you are unable to attend, please cancel your ticket and allow another member of our fibromyalgia community to join.

Any queries please email hazel.borland@fmauk.org

Newsletter Feedback Survey

Thank you to everyone who participated in our survey about the newsletter! We are thrilled to report a resounding thumbs-up regarding its reception, along with some fantastic feedback. Your insights are invaluable in helping us deliver the content you want. In this issue, our article on health-related guilt is a direct result of your suggestions, and we have more contributions lined up to provide additional articles on topics you’re interested in.

We sincerely appreciate your positive feedback and the impressive 4.5/5 rating! In upcoming editions, you can look forward to content on support groups, dental visits, working with fibromyalgia, and many more subjects. Thank you for your continued support!

GNR 2025 Team Member

Meet the Team: Malini

"Some of my concerns as I prepare for the Great North Run are navigating the training schedule and fitting in the necessary longer runs, all while carefully managing my fibromyalgia symptoms and balancing my day-to-day commitments. 

When I saw the opportunity to apply for a Great North Run place to raise money, I knew this is what I wanted to do, as running has played such an important part in managing my symptoms, as well as supporting my mental health. 

I am very grateful for all of the advice I have received from FMA UK and am proud to be representing them in the Great North Run 2025..."

👉 Read Malini's full story here.

👉 Donate to Malini's fundraising page.

GNR 2025 Team Member

Meet the Team: Shaun

As an assistant manager in PureGym Paisley, Shaun spends most of his days helping others become stronger, fitter, and more confident. 

But earlier this year, after a chance conversation during a visit from our charity team, he agreed, without hesitation, to take on a completely different kind of challenge: running 13.1 miles to raise money and awareness for people living with fibromyalgia...

👉 Read Shaun's full story here.

👉 Donate to Shaun's fundraising page.

The Embleton Murders

By Bear Lawrence

Volunteer reviewer: Judi

Date reviewed: 6th July 2025

After ten years of working at Embleton University, Professor Robbie Mustoe is ordered to take a sabbatical by senior management. Within days of his sabbatical starting, two of his trusted lecturing staff are suspended and eventually leave the university under a veil of secrecy. Months later, two staff members involved in the removal of his trusted colleagues from the university, die in separate incidents. 

Professor Mustoe suspects foul play and turns to his friend since school days, DCI Parrish. DCI Parrish had to take early retirement from the metropolitan Police on health grounds. Diagnosed with ME / CFS and fibromyalgia, symptoms including chronic fatigue and pain prevented him doing his job properly. But it was brain fog; poor concentration, memory problems, difficulty speaking and counting, that ended his career. After talking with Robbie, Parrish begins researching the mysterious deaths. He feels the excitement of being involved in a case again. But is it a case? It is when a third member of the university goes missing. 

I read this book in two days with brain fog, and I enjoyed it. It isn’t a long book, 255 pages and the print is clear with a minimum of bolding and italics. The author set the scene well and used a clear time-frame as he moves through the book so I didn’t have to go back too often to pick up bits I couldn’t remember. I found the central character, DCI Parrish relate-able and had quite a few of “Me, too!” moments when he sketched out some of his problems with ME / CFS and fibromyalgia, as I have both these conditions too. There was enough detail of police procedures but not too much. 

It gave a feel for the investigation, how and why it had been wound down and then surged open again. It was a real pleasure reading a book with little bad language, gore, and sexuality in it. This makes it a book my 80 year old Mum would enjoy too, as she and I both love the likes of Agatha Christie and Edward Marston. There were enough twists and turns to give interest but not so many that I couldn’t follow them or gave up. Bear Lawrence kept the number of characters down which meant it was easy to remember who was who and who the secondary characters were as well considered as the main characters. I did wonder at times whether there was a bit too much detail about pill-taking, etc., however, if you know someone who likes a good murder mystery and feel it would be helpful for them to have a bit more understanding of ME / CFS and fibromyalgia, this would be a good book to give them. 

In summary, most of the characters were believable and relate-able although I did wonder if one or two's nastiness was exaggerated too much. It’s an easy book to read as there isn’t a lot of techno jargon or police procedures to wade through. Bear lives with ME / CFS and it was refreshing to find a novel written by someone with that perspective and two of his characters had ME / CFS and fibromyalgia. This book is a good read, and I will be looking out for more by this author.

Meet the Author, Bear Lawrence

Even though I say it myself, I've had a very interesting life. I've raced karts, motorbikes and yachts. I've done everything from gardening to being a university lecturer and a commercial helicopter pilot and flight instructor. I am originally from the North East of England and I live there now that I have retired. In between, I've lived in the USA, Norway and Aruba in the Caribbean.

Just before Covid struck in 2020, I got ME from a combination of stress and a viral infection. About two years later, I was on an ME forum and commenting on a post about pain. Someone replied to my comment, saying that I probably had Fibromyalgia. So, I went to my GP who diagnosed it and also gave me a telling off for the various pain killers I was taking, almost anything I could get from friends and family. She prescribed me my own medication and this works well, most of the time.

I had got frustrated at explaining ME and Fibromyalgia to people, so I took to writing. Firstly, little articles and eventually my first book, 'Bear with ME' which was published in 2022, a collection of humorous, heart-breaking and heart-warming stories and articles inspired by true events I had experienced. This was the first book of three addressing different issues, the second being bullying and the third Snoring and Sleep Apnoea. 'The Embleton Murders' was my fourth book, but first novel as I had decided to try and reach a wider audience through representing ME and Fibromyalgia in a detective thriller. 'Recognition Man', the second DCI Parrish crime thriller was published last November.

Hello and Welcome to our new group. Firstly we would like to thank Craig Nimmo, the Ash Scout leader for giving us this wonderful opportunity to have the use of the Scout Hall every month.
I started this group with the support from Kent Community Health NHS Foundation Trust after I attended one of their Pain Management Programmes in 2024 and decided I would like to be a support in my local community for people with Chronic Pain, like myself.

I have Fibromyalgia, Osteoarthritis and other health and mobility issues. This group is for those who suffer from Chronic/Long term pain. The aim is that we will be a support for each other. If we do not know the answers to your questions, we will do our best to find out for you.

We started on 8th January 2025 and there were 13 people including the Speaker, Jan Reid from One You Kent NHS. She spoke about the services that One You Kent offers and she is also the Acute Smoke Free Advisor for Canterbury and Thanet.

The meetings will be held between 11 and 12noon on the second Wednesday of every month and the programme for the rest of the year includes advice on how to contact the Council and the Companies that can help you best with adaptations in your home (August 13th); How the Multiple Sclerosis charity can help with chronic pain (September 10th); Staying safe in your home with our local policeman (October 8th): breathing through your chronic pain with a yoga therapist (November 12th) and Spotting Signs of a Stroke (December 10th)

We are friendly and informal so please come along and join us if you think this would be of interest to you. We will also have a monthly raffle and unlimited refreshments and biscuits £1 per month. We are looking for speakers who would benefit our group in 2026 so please let us know if you have any suggestions. We are looking forward to seeing you!