Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.
I am going to use this space to lead people to helpful pages for Fibromyalgia diagnosis rather than a general chronic pain diagnosis because I have more resources for Fibromyalgia.
For websites I have a few sites to help people out :
- The first site I came across and still go back to is Fibromyalgia Association UK which is a charity run by people with Fibromylgia and they offer a huge amount of information, and there are endless links i
- From the FMA Website they have a very informational Forum which is great to help when you are newly diagnosed as it is full of people who are in the same position as you are and you can ask questions about anything to do with Fibromyalgia and anything that could be worrying you. I used this forum a lot when I was diagnosed, even if you don't feel confident enough to ask things there are hundreds of threads and more than often somebody has already asked what you were going to and there will be lot's for answers for you already!
- Another forum I used a lot is The UK Fibromyalgia Forum which also publish The Fibromyalgia Magazine and they also have a fantastic website which has information from what is fibromyalgia to the legal side of benefits and raising awareness. This website I think is a must for newly diagnosed people with Fibromyalgia.
- The first book I picked up was The First Year, Fibromyalgia by Claudia Craig Marek . This book is fantastic (though a bit on the heavy side with a lot of information) for the newly diagnosed who wants to get to grips with their Fibromyalgia diagnosis. It goes through the stages of diagnosis daily, and monthly for the first year and covers so many different topics from understanding symptoms and dealing with your illness to staying up to new resources and starting support groups.
- Living with Fibromyalgia by Christine Craggs-Hinton This book is a lot more simpler than 'The First year' book and is set out n small chapters . This book has been a good use for me as it again splits down different part of the Fibromyalgia symptoms and ways in which to manage them. It is a great little book for getting to grips with Fibromyalgia.
- 50 things you can do today to manage Fibromyalgia by Wendy Green I had this book reccomended to me by some of my readers and it is a good little book to have. It has a handful of chapters that are split into smaller sections with different ways to tackle Fibromyalgia and really touches on different lifestyles to try to help to ease pain and other sypmtoms so I reccomend this book for anyone interested in learning about allternative therapes and lifestyle changes to help them living with Fibromyalgia.
- Fibromyalgia For Dummies by Roland Staud and Cristine Adamec I always looked at this book and finally got round to purchasing it early this year and it is a great and really informational book. The only downfall for it for me is that is was written in America so the chapters about benefits and legal issues aren't relevant for people living in the UK. But don't let that put you off this book liturally covers hundreds of topics and issues you come across when diagnosed with Fibromyalgia . It is also full of so many helpful tips and overall is an amazing book!
I hope this post was helpful for anyone who are starting to advocate for themselves or a loved one. Let me know in the comments below.
Thank you for reading,