Living with fibromyalgia and an assistance dog.

Hi, my name is Jenny, and this is me with my beautiful blonde bombshell Bliss, a retired assistance dog. She retired two years ago after putting in 10 years of hard but fun work looking after me.

An assistance dog is a bundle of fur that can carry out practical tasks such as retrieving items, opening, and closing doors, assisting in dressing, and undressing and even do the washing! But this is just the beginning of what Bliss did for me. 

Before I was matched with Bliss I was stuck in bed practically 7 days a week with little motivation to do anything as the pain engulfed me. This was a very dark time for me and sometimes I didn’t think I would come through it. However, when I learned about these wonderful dogs for people with physical disabilities, I thought I would apply. I didn't realise then how dramatically my life would change. Once I had been matched with Bliss, we were put into training together so we could learn tasks that I needed her to do. 

Although this was tiring for me, it was well worth it! Bliss continued to work for me for 10 years but then had to retire as she was 12 years old. Luckily, I was able to keep her as a pet as my partner adopted her, and she now is happily resting in her bed as I write this article all about how she has made such a difference to my life. 

Retiring was the right thing for Bliss however it meant I was suddenly left without my assistance dog which left me feeling lost and vulnerable as well as impacting on my independence as I waited for my successor dog. 

Due to different circumstances my wait was longer than anticipated so my confidence was depleting as time went by but eventually, I received a phone call telling me that they had found new dog for me and his name is Cecil. As soon as I met Cecil, I knew he was the one, he has a different personality to Bliss but he suits me and is what I need at this stage in my life.

Cecil is the most beautiful boy, a goofball who loves a snuggle and is very clever. Together Cecil and I are building our new journey and I am getting a more confident and my anxiety is slowly easing when we go out on our own, but the main thing is both dogs have given me the motivation to live my life whilst living with fibromyalgia.

For further details of assistance dogs please visit the canine partner website you won’t be sorry!

July 10th and 24th

Online Support Group

Join Hazel & Zoe for an hour of fibromyalgia chat and sharing experiences. Thursday 10th and 24th July 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

Jane set up the Brighton based Fibro Flys 6 years ago. They have a private Facebook group open to anyone living with fibromyalgia and/or ME/CFS. https://www.facebook.com/share...    The online group is a safe, friendly and fun group that has daily interactive posts to try and keep everyone's spirits up and they welcome members to post anything relevant to their daily symptoms and struggles. New members are welcomed with open hearts and arms and from September 2025, they are hoping to restart their online Meet Ups.

Fibro Flys also have a public page Fibro Flys Support Group For Fibromyalgia & ME/CFS 

https://www.facebook.com/share...

In person Meet Ups are held on Mondays in Kemptown, Brighton and the space they use is secure to enable them to speak openly. Looking forward there will be one Meet Up in July and August and from September through to the end of the year they will be meeting up on the 1st and 3rd Mondays of each month. The Meet Ups are drop in unless we have a guest speaker, 11.30am-2pm we charge a £3 fee for each meet up which includes refreshments.

If you'd like more details about the Meet Ups either join the  private Facebook group remembering to answer the questions on requesting to join, or send an email to fibroflys@outlook.com

Reusable Coffee Cup - Americano Style

Have you seen our reusable coffee cups? They hold 300ml of your favourite drink keeping hot drinks hot and cold drinks cold. The striking design of yellow press on lid and FMA UK Logo branded grip will attract attention providing more awareness of Fibromyalgia whilst being stylish. At 12.4 cm high, 8.6cm in diameter, holding over half a pint and completely BPA free it is a must buy for everyone at only £10.49 with FREE POSTAGE.

Participating in Fibromyalgia Research – my experience

By Caroline Faulder

I was diagnosed with Fibromyalgia three years ago when I was in my late 20s. Like so many in our community, I have found the process of trialling different medications and treatments to find the combination that helps my Fibro to be incredibly frustrating. I wish there was more research on how Fibro affects our body’s internal processes, and more testing of potential treatments to better understand how and why they are effective.

So, when I saw an opportunity posted in the FMA UK Facebook group to participate in a two-day research study at Manchester Metropolitan University, I immediately volunteered.

The study I volunteered for was investigating why people with Fibro and ME/CFS feel exhausted after doing exercise (i.e. Post-Exertional Malaise or PEM). It involved two 2.5-hour sessions of testing at a university lab:

•  The first day involved having my brain activity and leg muscles scanned in an MRI machine, testing my muscle strength and then cycling on an exercise bike until I felt tired.
• The second day involved re-scanning my brain activity and leg muscles in the MRI machine to look for changes.

I was a bit nervous before participating as I do struggle with PEM and was not looking forward to lying still in a loud and claustrophobic MRI machine. However, the study researchers were kind, supportive and incredibly accommodating. They understood the challenges faced by people with Fibro and made the experience as painless as possible. They scheduled regular breaks into the MRI scanning so I could get up and stretch/wiggle, they set up a TV and put on my favourite show to distract me, and they even gave me a blanket because it was cold in the MRI room.

I was tired and sore after each session, but it wasn’t severe enough to stop me doing my normal activities.

The researchers were also incredibly passionate about their research and knowledgeable about Fibro. It was interesting learning about the differences in leg muscle tissue they were testing for and how it might affect my symptoms. It was also very satisfying to know that I was doing my own little bit to contribute to the current medical understanding of Fibro. My hope is that studies like this one might one day lead to better treatment options for our condition.

Reflecting on the experience, there’s a couple of points I would share with anyone interested in participating in Fibro research:

1. The FMA UK Facebook page regularly shares details of different types of research studies. Some studies do require you to go to the researcher’s facility, but others can be done via phone or videocall. This is a great option if your mobility or energy is limited.

2. When you volunteer for any study, you should be given a document called a Participant Information Sheet. It describes in detail the research objectives, eligibility requirements, what is the ask of you and if there are any risks or advantages to participating. This document is important for you to provide informed consent to participate, but it can also be helpful for you to understand if there are activities you may find particularly uncomfortable or challenging.

3. If you are concerned you may need additional support or accommodations to participate, ask the researchers. In my experience they were incredibly accommodating and would have happily given me more breaks or resting time if I needed it.

4. Researchers are very aware they need research participants for their study to be successful. The study I volunteered for was a pilot program, and the researchers were hoping their results would help them get funding to do even more research in the future. Many studies are also run by postgraduate or PhD students, who rely on participant involvement in their research to complete their degrees.

5. If you do need to travel to the researcher’s facility and you are concerned about the cost, they may offer a stipend or payment to help cover travel costs. If this is something you need, ask the researchers.

In summary, if you are considering volunteering for a research study, go for it! There are all sorts of studies seeking participants, and it is very satisfying to contribute to the research into our condition.

Hazel becomes a Carer's Champion

Our office admin Hazel recently took part in a Carers Awareness Workshop organised by Renfrewshire Carers Centre and became part of their network of Carers Community Champions. The aim of the workshop was to learn more about how to identify unpaid family Carers in our community and to ensure they get the support they are entitled to and deserve.

But what is a Carers Champion? Simply put, it means knowing what support and resources are available for carers in your local area—and being able to signpost them to the right places for help and information.

The workshop started with a group task to identify unpaid family carers from a selection of scenarios. Three main carer groups were identified in this task

•  Adult Carers – caring for parents, children, other family members & neighbours 
• Working Adult Carers – managing their caring duties alongside working 
• Young Carers – children & young people caring for parents or siblings

The workshop consisted of a presentation and discussion around who is a carer and the different types of caring roles, along with the type of support and information that Renfrewshire Carers Centre provides. At the end of the workshop, we were presented with our Carers Community Champion certificate.

I often talk with people who are partners/family/friends of the person with fibromyalgia and who may not see themselves as being a ‘carer’ or it may be that the person with fibromyalgia also has caring responsibilities. Doing the workshop has helped me to recognise and hopefully provide better support to those in this position.

While the workshop focused on what is available locally in Renfrewshire, there are many Carers Centres and voluntary organisations throughout the UK who are offering information, advice and support to unpaid carers.

Update on University of Aberdeen research

You will have read in our recent email Researchers at the University of Aberdeen and in Taiwan have been doing some interesting research.

Des Quinn (FMA UK Chair) spoke to Dr Guy Berwick who led the team at the University of Aberdeen. He spoke of the importance of glutamate in the pain mechanism that his team discovered. They found a compound called PCCG13 that could block the action from happening, but they have not found a method to reverse the action yet.

While this is interesting research, we are still a long way from it being realised into something that could help people with fibromyalgia if it is indeed applicable. 

We are pleased to support the work of Dr Berwick and his team and hope to attend a workshop next year with the team from Taiwan and Dr Berwick. 

The coverage around this research has helped highlight the plight of people suffering with chronic pain in conditions like fibromyalgia.

Read the BBC article here or the article on the University of Aberdeen website.

Phase 3 trial for Esreboxetine

The pharma company Axsome Therapeutics are planning a phase 3 trial with a drug previously used and and approved for depression. The drug previously produced by Pfizer is called esreboxetine has a bit of a chequered past, but Axsome believe in can help patients with fibromyalgia.

They had conducted a successful phase2 trial and another that the FDA found issues with. The new phase 3 trial is using the same study design as the successful phase 2 trial, and they hope it will produce positive results. However, we will be looking at several years before we know of any results.

Read the article here