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? A place where you can read up to date research and learn about how to cope living with your diagnosis.
The aim of this post is to fulfill one of our missions of providing you with the information of where you can find such resources. These resources were originally shared on our May 12th 2020 Awareness Day campaign post and I realised that it would be a good idea to put them onto a post of their own.
There are many countries across the Globe so I know that they are all NOT listed here. If you live in a country that is not listed and have knowledge of a good website, charity, or organisation where you can get reputable information about Fibromyalgia, please let me know and I will add to the list. carole@fibroflutters.com
Places for sourcing fibromyalgia information and resources:
Got any to add from your country of residence please email me fibroflutters@gmail.com
Europe:
The European Network of Fibromyalgia Associations (ENFA)
Nordic Trial Alliance for Scandinavian links
Some resources can be found via this link:
Pakistan:
Please remember these few things!
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.
Pain management involves much more than justy popping pills, having injections and pacing your activities. Taking a holistic approach early on can help you learn to manage all your co-morbidities too alongside you chronic pain.
You might have to make a series of lifestyle changes and it is important to consider doing a little at a time, and changing everything all at once. One step at a time can be a better approach even when you think making the changes all at once will take less time – it could make your symptoms spiral and even cause more problems for you.
Finding a clinician, doctor or therapist that you can go to for advice and support is good advice that you will hear a lot from varying people and resources. Do not worry if it takes a little while to find someone that you trust. You may see many health care professionals before you find someone that suits you.
The applies to medicines. There are a lot of medicines used to treat chronic pain and they are different across the Globe. One treatment might work for your best friend, but not necessarily work as well for you and you might need to try several medication and therapy combinations before finding one that you are happy with.
During your journey after diagnosis you will come across varying groups and organisations related to your chronic pain condition. It is a good way to get to know your diagnosis and symptoms by joining community groups because you meet many others who are living like you and know what life with chronic pain is like. There are groups online, or you may find a local group that meets up every now and again either way find what you are comfortable with and go with that!
Finally, please remember that getting rid of all our chronic pain is a huge undertaking that is not very likely to happen. It can cause us a great deal of mental stress, depression and health related anxiety and if you find yourself feeling this way please find mental health support to help you through the tough times.
Anything to add, any questions please email me carole@fibroflutters.com
Please support Fibromyalgia Action UK
Many thanks for supporting the work that the charity Fibromyalgia Action UK does towards raising awareness through educating people about what fibromyalgia is. Also, through the many support groups that the charity has throughout the UK that all support patients with fibromyalgia.
Fibromyalgia Action UK (FMA UK) is a registered charity in England and Wales (1042582). A company limited by guarantee (SC492045).
Registered address: 12 Seedhill Road, 3007 Mile End Mill, Paisley, Renfrewshire, PA1 1JS
FibroFlutters continuously supporting fmauk.org
#BecomeFibroAware #fibromyalgia #chronicillness #ChronicPain #fightfibro
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
Follow us
SYNAPSE Powered by The Synergist.
The global Patient Engagement map and network
Find everything about patient engagement and make your content available to the community.
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
The #chronicillnessVOICE Daily
#patient #health #medical #pharma #research related newsletter for everyone #notjustpatients’
