Raising awareness of Fibromyalgia
This week is Fibromyalgia Awareness Week 2021 where fibro related communities, charities and organisations come together to raise awareness of this debilitating condition. Here at FibroFlutters we advocate and support our Mother host Fibromyalgia Action UK. This charity works relentlessly to raise awareness and support people with fibromyalgia.
Why is Fibromyalgia Awareness Week 2021 important?
- Despite this condition being quite prevalent there is still no known cause for it.
- Research is being carried out but it requires funding and people to take part in it.
- It is still viewed as a psychosomatic condition by some in the medical world, which makes it difficult for patients to get taken seriously.
- An opportunity to share educational material about the condition to increase understanding of fibromyalgia as a chronic condition.
- An opportune time for supporting charities and organisations to raise funds to support the work they do for their communities.
FMAUK Twibbon Campaign for Fibromyalgia Awareness Week 2021
Why not upload a Twibbon showing your support? It can help raise awareness to your friends and followers on social media. #BecomeFibroAware. Click on the image above to go to the site to get the twibbon.
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Rare Disease Male Support Group – mental health community support. – FibroFlutters Patient Advocacy Organisation | Chronic Illness & Rare Disease Network
Finding a support group in the UK
FMAUK provide support across the UK via the means of support groups and you can find out more about those by following this link: Fibromyalgia Support Groups
Fibromyalgia and FibroFlutters
There are many members / followers of FibroFlutters with fibromyalgia and it was the initial health condition behind us setting up. Although we have evolved over the years to become an organisation for chronic and rare conditions fibromyalgia remains one of our main areas.
We offer mainly online support, locally and across the globe, via our vast network. Locally, we have a sister group that offers group F2F meetings that reopen tomorrow 6th Sept. (Details below) FibroFlutters will begin to hold regular zoom meetings with the first being held in the coming weeks. (TBC) This is to cater for those of us who can’t make the in-person meets due to work, life and health issues.
Please Note: That we are not health professionals so cannot give proper medical advice. We can advise you about what to say to your doctors and direct you to where to get legitimate information. If you experience new symptoms, or a change, then please contact your healthcare professionals in charge of your treatments and care.
Why is talking and meeting important?
Providing an avenue for people to talk about their lives with fibromyalgia is important because it affects our lives in so many ways. Many sufferers fight against the people in their lives not believing that they even have a health condition, let alone one that is quite debilitating. It is the type of chronic illness that leaves people with variable symptoms and feeling different from one day to the next. The main symptom being chronic pain that is difficult to manage and interferes with how people conduct their daily activities.
It is vital to state that everyone is different with this condition and frequently it is a secondary condition. This means their fibromyalgia comes second to some other chronic, or rare condition, that is their primary chronic illness. It also means that the types of treatments available are not necessarily suitable for each person with fibromyalgia.
Fibromyalgia management is unique to each person diagnosed with it even if they share symptoms, and take the same medications. The saying “What works for me may not necessarily work for you” is one that needs to be said. This is due to the fact people could be taking other medications for other illnesses, and / or have allergies and sensitivities to treatments. Aside from this you should always follow what your health professionals advise you!
Newly diagnosed patients seek as much real-life feedback about what people experience as much as they need the proper medical information. Notes like the one below are crucial for them learning about what to expect. It is normal to think “Oh! we have the same condition so our treatment will be the same!“
Unfortunately, there is no one-size fits all solution to the management of fibromyalgia.
“What works for me may not necessarily work for you”general saying among fibromyalgia patients
Newly diagnosed patients seek as much real-life feedback about what people experience as much as they need the proper medical information. #fibromyalgia #BecomeFibroAware #chronicillness #chronicpainTweet
#BecomeFibroAware during Fibromyalgia Awareness Week 2021
Chronic Pain management can be a really difficult thing to master, please don’t give up as it can take time, perseverance and a lot of positive attitude until you find your balance with it.
To mark national Back Care Awareness Week (October 5-9), Nichola, a Technical Member of The Chartered Institute of Ergonomics and Human Factors, has compiled her ‘Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers’.
FibroFlutters are proud to support Fibromyalgia Action UK and Fibromyalgia Awareness Week 2021
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
The UK’s First Network of Connected Community Maps by It’s A Doddle
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