International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters

Today is International Fibromyalgia Awareness Day

On May 12th eight years ago FibroFlutters was born

Since 2014 FibroFlutters has advocated in support of International Fibromyalgia Awareness Day. Fibromyalgia is a chronic pain disorder that can be very debilitating. It affects men as well as women, and it is a very difficult health condition to manage. It still has no definitive known cause and treatments are no ‘one-size fits all’. Symptoms can vary from patient to patient and everyone’s experience though similar… is actually very different.

We have grown a lot in eight years

We have grown and developed into an organisation that recognises chronic illness, and rare diseases per se. People within our network do not just have fibromyalgia. However, fibromyalgia from our local perspective is something that we will always support as a community. This includes the local fibromyalgia support groups that can help our members. We have always had a global reach and this has continued to grow. It is important to remember that fibromyalgia as an illness doesn’t change from one country to the next. Demographics do not make your fibromyalgia different if you live in America, Australia, Africa, India, Asia, or in the UK.

Our work, nowadays, predominantly involves pointing people in the direction of where to find information and resources. Our local community support has lapsed into online services, but we are still there to provide face to face support at local level if and when requested.

International Fibromyalgia Awareness Day –

Read this post for information of where you can find fibromyalgia resources across the globe.

It doesn’t matter where you live in the World when you are given your fibromyalgia diagnosis. One of the first things you want to know is where to get information that you can rely on.

Where can you find community / support groups that you can join and meet other people who understand the condition that you are living with?

Find places where you can read up to date research and learn about how to cope living with your diagnosis.

Where can you find #Fibromyalgia and #ChronicPain #healthresources across the Globe? Find out here!

International Fibromyalgia Awareness Day poster

Our latest development

Every year to mark our birthday I do something to improve, or grow our organisation. Our latest development this year was to incorporate FibroFlutters and our rare disease advocacy ZebraStrutters as Flutters and Strutters. We are now Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and Wales. Reg. No. 14065901. This now makes us a registered non-profit.

FibroFlutters will still serve as support for fibromyalgia and chronic illness, and Zebra Strutters for rare disease with our focus on musculoskeletal related disorders, Ehlers Danlos Syndromes with Hypermobility Spectrum Disorders.

Our support still goes out to Fibromyalgia Action UK the national charity for fibromyalgia in the UK. A charity that does a lot to raise awareness about fibromyalgia and also educate about the condition. Providing educational packs for health professionals and patients.

Mental health Support is crucial and we still value it highly


Please note that I do not, and never have, claimed to be a health professional and this message is written purely based on observation, conversations with people living with chronic pain, and personal opinion. I do not give medical advice and neither does this post.

International Fibromyalgia Awareness Day Message from our Director Carole Scrafton

Many thanks for reading this post and for the continued support that you give us. It is important to keep raising awareness of this debilitating illness. Although things have improved over the years to make the condition recognised with a diagnostic code it is still seen as a mediocre condition. By this I mean that many still don’t view it as real, one with real problems that interferes with a persons quality of life.

The affect of NICE guidelines for treatment of chronic pain

Right now what is making it worse is that NICE have issued guidelines to doctors that see patients losing pain medication prescriptions in favour of alternative therapies.

This alongside CBT (Cognitive Behavioural Therapy), which I actually personally believe is a valuable form of therapy within the realms of pain management. It doesn’t mean you are making your pain up at all. The treatment helps you to alter the way you think about your pain, how you react to it and gives you the tools to change how you do things so that you can reduce the impact of your activities that cause your debilitating pain. Changing a negative view into a more positive way even through the use of language and the way that you speak about it.

However, this is not explained to people resulting in them believing their pain disorder is psychosomatic. This is something that we have lobbied hard for a long time to stop.

Find the NICE guidelines published 7th April 2021 here

https://www.nice.org.uk/guidance/ng193/resources/chronic-pain-primary-and-secondary-in-over-16s-assessment-of-all-chronic-pain-and-management-of-chronic-primary-pain-pdf-66142080468421

How are fibromyalgia patients coping?

There is nothing wrong with trying such therapies but it has always been my experience that doctors do not know enough about them and therefore have never endorsed them as viable treatments.

It is not safe to just go off and try new holistic medicines and therapies without seeking advice from health professionals. This is hard when health professionals have no idea what advice to give. It has become clear from patients on our network that they are being left in serious pain from medication withdrawal and are not being prescribed alternate therapies at all. My latest conversation regarding this only happened yesterday and it is something that will only increase.

However, I’m not saying that fibromyalgia patients aren’t open to trying alternative therapies. After all many of us adapted to using them alongside our pain medications anyways. I have been using them for nearly three decades. The combination works well for many of us. We have to be careful and not all therapies are suitable for everybody. What is upsetting people is the fact they can’t afford to pay for such therapies and doctors aren’t prescribing them. So they’re left in limbo with no pain medications and unable to afford the alternative therapies that NICE say must be the treatment given to people with chronic pain conditions.

Despair, anxiety and quality of life

The fibromyalgia communities are now facing despair among its members. Members that do not tolerate many holistic treatments for varying reasons that pertain to other chronic conditions that they have. Having their pain medications taken away is causing high levels of anxiety, and depression, within our communities as patients cannot cope. What often goes unheard is that their families also suffer and also cannot cope as there is nothing that they can do either to help ease the pain of their loved ones.

For many they don’t have much quality of life to begin with and the pain medications give them just enough to improve it slightly. Now they have reverted back to having a very poor quality of life, which in this day and age of where healthcare pathways are meant to be improving our quality of life it is pretty disgusting.

Stuck in a rut unable to provide solutions for those with fibromyalgia

Our work as an organisation needs to be able to reassure people and help point them towards solutions. Unfortunately, there is nothing that we can do to help a member get a doctor to revert their decision regarding removing a patients pain medications. This leaves a huge black hole for us. A negative with no hope of a solution. We could start a petition but it has been made clear that these guidelines will not change. The chance of a petition making any useful impact is slim.

This means that after years of battling to be heard, and for fibromyalgia not to be seen as ‘being in our heads’ that the outlook has reverted back a decade or so!

Carole Scrafton 12 / 05 / 2022

Please note that I do not, and never have, claimed to be a health professional and this message is written purely based on observation, conversations with people living with chronic pain, and personal opinion. I do not give medical advice and neither does this post.

If you would like to chat to Carole you can book a slot in her calendar below

Book a call to chat:  https://doodle.com/bp/carolescrafton/book-a-time


Hashtags to use

#InternationalFibroAwarenessDay

#Health #12thMay #globalhealth #chronicpain #painsupport #painresources #chronicillness #widespreadpain #arthritis #musculoskeletal #BecomeFibroAware #healthandwellness


FibroFlutters turn 8 years young today on International Fibromyalgia Awareness Day May 12th
FibroFlutters turn 8 years young today on International Fibromyalgia Awareness Day May 12th

Can you help support us as you shop online:

https://www.easyfundraising.org.uk/causes/fibroflutters/


We are now known as Flutters and Strutters a non-profit Patient Advocacy Organisation >

Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and WalesReg. No. 14065901

Rebranding and redevelopment currently in progress

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Flutters and Strutters

FibroFlutters and ZebraStrutters

We are a Patient Advocacy Organisation & online social media communications network. Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.

To help develop, nurture and help to create a multidisciplinary approach to all aspects of medical healthcare so that #chronicillness & #raredisease patients can receive the type of care and treatments that they need.

The work we do involves disease awareness, health awareness, and, helping to point people in the direction of where to get legitimate health communications and information. As well as this we attend events and use patient voice to get important messages to help create better systems and processes for patients.

Bridging the gap between stakeholders is a different type of awareness raising. It involves sharing events and campaigns by clinicians, pharmaceutical companies, patient led projects, healthcare providers… the list is quite variable. We have newsletters to ensue this which uses our slogan – #chronicillnessVOICE for everyone #notjustpatients



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Incorporated under the Companies Act 2006 as a private company, that the company is limited by guarantee, and the situation of its registered office is in England and WalesReg. No. 14065901

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