If you have just been diagnosed with fibromyalgia my guess is you’re frustrated, exhausted and a little confused. It’s likely you’ve spent months – if not years – being tested for a myriad of conditions to finally get a diagnosis for a condition no one seems to know anything about.
You’ve likely been told there’s no cure, so you’ll get instructions to improve your “coping strategies” and “pain management”.
You’ve probably been told there’s no treatment plan, so you’ll hear phrases like “get to know your body” and “work out what works for you”.
Once you get home, you’ll realise you have the name of a condition – but not one you can pronounce or spell – and you’ll learn that people struggle to understand and empathise because “you don’t look sick” and “it’s all in your head”.
Not only is all of this hard to deal with, but the amount of information online can be overwhelming. There are a variety of theories about what causes fibromyalgia, there are hundreds of companies trying to sell you a cure, and there are a multiple views on what you should be eating/doing/reading/taking in order to improve your symptoms. It’s a minefield.
This is where the toolkit comes in. By building a bank of tips and tricks that help you understand and manage your pain, you can easily explain your condition to friends and can go back to the toolkit every time you need to be reminded of your go-to coping strategies. You can share the link with people who want to know more about what you’re going through, or you can use it as a personal resource to keep you on the straight and narrow. (Having a chronic pain condition is a lot like having an addiction – you need to stay focused to stop yourself doing the things you know you’ll pay for later.)
Your toolkit might not be identical to mine, but hopefully this gives you an idea of how to build something that works for you.
First things first: the practical tips and the facts you need to know.
Donna at February Stars shares the things she wishes someone had told her when she was first diagnosed with fibromyalgia: Eight things I wish I had known when I was first diagnosed.
Donna at Fed up with Fatigue got 12 bloggers to come together and share the one thing they can’t cope without to manage their chronic pain. It includes everything from medication to diet to natural remedies, and everything in between: 12 bloggers share their tips for reducing fibromyalgia symptoms.
The Mighty shared the things people with a chronic illness do to help manage pain and everything that comes with it: 27 habits of people with chronic illness.
Next: coping strategies to grow your strength, pace yourself and manage your pain.
I wrote an article explaining Spoon Theory, which is a useful way to explain your health to friends and family and a good way of learning to pace yourself: Explaining spoon theory.
Sheryl at A Chronic Voice wrote a post on managing her approach and finding the positives in her chronic illness: Adapting, practicing, realising, celebrating and inviting.
I wote an article on New Life Outlook which discusses the idea that fibromyalgia is degenerative, and the things you can do to manage the range of feelings that come with it: Is fibromyalgia progressive?
Finally, the emotion of dealing with a chronic illness and the things that will make you feel less alone.
Kate from Make it, Bake it, Fake it shares how it feels when someone says, “but you don’t look sick” in her poem: You look too well to be sick.
Lisa from Damsel in a Dress usually writes sarcastic, hilarious posts about managing chronic illness, but this heartfelt post about the struggles of living with an invisible illness explains exactly how we feel on our darker days: My feels of not being able to work – and other uncool things.
A good support network is essential for managing a new chronic illness, and the online spoonie community is particularly strong. I wrote this article sharing some of my favourite online forums and social media accounts: The chronic illness community you’ve been looking for.
I’ll be adding to this toolkit over time so be sure to check back for updates or, better yet, create your own!