You Got the Fibromyalgia Diagnosis – Now What?
You Got the Fibromyalgia Diagnosis – Now What?
Fibromyalgia diagnosis – tick! Now what?
So you finally received the diagnosis of fibromyalgia. Welcome aboard! We want to help you navigate those critical moments that come afterwards and manage the expectations.
First things first: it can be incredibly overwhelming, but know that you aren’t alone. So let's start with some of the most important things you can do for yourself at this moment.
Acknowledge your emotions
Getting a diagnosis of fibromyalgia can stir up a range of emotions. Whether it's validation, relief, confusion, or sadness, it's essential to recognise and allow yourself to feel it.
This is the time to consider the people you have in your life to support you – I’m not just referring to your GP, but the whole team. Whether it’s a psychologist, physiotherapist, rheumatologist, or all of the above, but then also consider the people that are personally supportive to you. It can help to talk about your emotions with someone you trust.
Consider a holistic approach
Yes this does give off a wishy-washy vibe, but hear me out. We know that there isn’t a cure for fibromyalgia currently, we know that just medical treatment alone isn’t enough, and we know that things like stress and sickness make our pain feel worse. By "holistic approach", we simply mean that it’s important to consider you as a whole person, not just your condition, and recognise that your environment is absolutely going to influence how you feel.
Start with a bird’s eye view of your life right now. What does your day to day look like, what are the goods, the bads, the short-term and long-term stressors? Can you categorise these things in terms of “is this helping or hindering my health?” and if it is hindering, “is this something I can minimise?”
Next consider how you might actually minimise these things (yes, easier said than done!) because if we don’t spend the time to acknowledge the types of stressors in our lives, we can’t take action to reduce them. When the body accumulates stress we can reach allostatic overload which can promote further pain.
While this is a rather simplistic look at a holistic lens on your health, it sometimes is that simple. Focus on the basics and do them intentionally. We wouldn’t dare utter the words “this will change your life!”, but it could.. maybe just a little.
Understanding fibromyalgia is a crucial step in effectively managing the condition.
It’s no surprise that most people being diagnosed with fibromyalgia are already pretty well educated on the condition (largely due to the relentless need to advocate for yourself). By being informed, you are better equipped to notice the early signs of flare-ups or the need to pace yourself, and you are better equipped to make informed decisions regarding your health.
Understanding your condition can also help you bring the right mindset to living well with fibromyalgia.
Here are a few great education materials that might be helpful for you and also your family:
- Pain Australia
- Pain Health
- Pain Guide by Dan Clauw, a rheumatologist and world expert on fibromyalgia
- Explain Pain by Professor Lorimer Moseley and Dr Dave Butler
If you’re not ready to commit to a whole book, we highly recommend Lorimer’s nothing-else-like-it TedTalk.
Knowledge is power
Build a support network: Find your community
Imagine a world where you don’t have to explain the pain you’re in, or better yet, you don’t have to prove the pain you are living with. Enter… a support network!
Connecting with others who also live with fibro can provide invaluable support, not just in the sense of practicalities, but emotionally too. Seeking out local support groups or even online communities allows you to share your experiences, learn some new coping strategies, navigate flare-ups and ask the weird questions. Welcome to the club!
Find local fibromyalgia support networks and communities. These groups are filled with empathetic individuals who truly understand what you’re going through.
Listen to your body
Truly listening to your body’s signals is crucial in managing fibromyalgia. Respect your limitations and pace yourself accordingly. Pushing yourself beyond your limits might feel good for a nanosecond, but it’s not worth the time to get back to your baseline.
‘Pacing’ isn’t about doing less, it’s about strategically managing your daily activities around your body’s capabilities today. So it’s time to set boundaries that protect whatever is important to you. Remember, self-care is essential for your wellbeing. Listen to your body, and when it says to slow down, ease up, or pace yourself, do it!
Manage stress effectively
We all know that unmanaged stress tends to make everything a bit worse. And this goes for your fibro too. So how do you get on top of it?
Stress has a purpose and – when it’s managed – it informs our decisions, such as saying "no" to excessive commitments, setting boundaries, and prioritising some good old self-care. We should respect what our bodies are telling us and recognise the little signs before we overextend ourselves and are left paying for it with burnout and physical exhaustion.
Managing stress is an ongoing process, and it may take time to find what works best for you. Try out some different stress-management techniques and see what works for you.
Journaling? Gardening? Singing? Blogging? Explore the different types of relaxation techniques that you can do almost anywhere, anytime, such as mindful breathing exercises to alleviate stress. There are so many different approaches to this, and it’s worth trying a few different ones to see what works best for you.
You might also like to incorporate gentle exercises, such as yoga or swimming, into your routine to improve your flexibility and reduce pain. This can also tie in with mindful breathing exercises. What a Zen human being you’re becoming!
Now that you’ve basically meditated yourself into a sleepy state, it’s also important to prioritise quality sleep to ensure you're getting sufficient rest. There is so much evidence that advocates for prioritising sleep in chronic conditions like fibro1,2.
Finally, remember you are not alone. If you need more support, please reach out to us or join our online support group – it's a great place to find comfort and understanding.
This article is a part of a 3-article series. For more information check out: