Newly Diagnosed with Fibromyalgia?

Newly Diagnosed with Fibromyalgia?

Being handed a diagnosis of fibromyalgia can be really scary. It may seem at first like your life is over, but I can assure you that it’s not! Let’s talk about the emotional whirlwind of being newly diagnosed and steps you can take to build a new life with the condition.

Everyone has their own struggle when they’re newly diagnosed. Rather than just talk about my own experience, I wanted to get a broader sense of what people went through. So we posed a question to the Instagram community about they wished they had known when they were first diagnosed.

Generally speaking, the responses we got were not so much about physical symptoms and medications and the like. Rather, the mental, emotional, and social toll of that early, vulnerable period – continuing to the present day – stood out much more prominently for the community.

Newly Diagnosed with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

I can’t say that I was surprised, because that’s how I feel too. The pain fluctuates, the symptoms change over time, but the things I remember most are the times when I wanted to do something and I couldn’t because of the pain.

My Diagnosis Story

My fibro diagnosis story started when I was very sick with a bad case of mono. Long after the virus should’ve calmed down, I still had trouble getting better and the pain wasn’t going away. My diagnosis was relatively quick and close to that specific triggering incident.

It was very bittersweet. On the one hand, it felt good to know that there was a name for what I was experiencing. It’s not much, but it was something to hold onto, some beacon of light offering a direction forward. At the same time, learning that fibromyalgia is such mysterious condition with no cure was very daunting.

Wrapping Your Mind Around It

It’s worth going a little deeper on that last point. How do you mentally grapple with the fact that you have this condition for the rest of your life? This is something that might not be readily apparent to those without chronic illnesses. When you know you’re going to recover from an illness eventually, you can say “I’ll just push through this and life will pick back up as normal.” But when there’s no end in sight, depression, anxiety, and stress creep in and can really start to cast a shadow over your whole life if you’re not careful.

Newly Diagnosed with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

Chronicwho brought up the point that mental health can sometimes fly under the radar when it comes to treating fibromyalgia. It’s essential to treat the mental along with the physical as two parts of a complete whole if we truly want to take a holistic approach to wellness with fibromyalgia.

Newly Diagnosed with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

Social Life Consequences

Dealing with a chronic condition is difficult enough on its own, but many of us came to find out that people in our lives were not as understanding and supportive as we might’ve hoped. It can be very difficult for family and friends to understand that there’s something different about you now. With a chronic, invisible illness, they can’t visually see any difference in your appearance. So it can be confusing for people when you “suddenly” can’t do things that you used to do before. Sometimes they even get angry that you’re seemingly not the person they used to know.

Newly Diagnosed with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

Many people in the fibromyalgia community report that friends and family members began to distance themselves from them after their diagnosis. Sometimes it only takes a few instances of canceling plans due to flare-ups before they start to think that you don’t like them and you’re just making excuses.

On the flip-side, if you are very vocal about your pain and your limitations, they might see you as a “downer” and not want to be around someone who’s complaining all of the time.

However, there are people who can understand what you’re experiencing; of course, I’m talking about other people with fibro. Sara C. commented that, in the beginning, the doctors just gave her medications and blanket statements. She didn’t realize that there was community support out there – both locally and, increasingly, online.

Newly Diagnosed with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

Fostering a robust community was the main inspiration behind us wanting to start this website. Our goal is to cultivate more meaningful discussions about how fibromyalgia affects our entire lives – not just attempting to minimize physical pain.

Re-calibrating Your Life

So once you’ve been diagnosed, how do you re-calibrate your life to match your new circumstances? In life, we’re all just trying to do the best we can with the hand we’re dealt. Amelia Rae commented that despite the setbacks imposed by fibromyalgia, she’s still trying to become the best version of herself.

Newly Diagnosed with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

If you’ve just been diagnosed, you might be feeling a bit down about your overall future. Fortunately, our minds are wired to adapt to new circumstances. Over time, people with chronic conditions subconsciously adjust to a new baseline; it’s something that just happens whether you actively try for it or not.

One of the upsides (believe it or not) is that having a lack of energy forces you to really focus on the things that are most important to you. Maybe you don’t have the bandwidth anymore to handle one hundred friends…maybe you just might find out that you’re better off having a handful of really great and supportive friends than being the social all-star in a sea of acquaintances.

Newly Diagnosed? (what you wish you'd known) | Living with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

Part of being the best version of yourself is working with what you have. Some things are partially out of your control now, so why fight and cling to certain aspects of your prior life? They might not have been serving you so well to begin with. Why not learn to let go of some things?

Are you recently diagnosed? If so, what’s going through your mind right now? If it’s been a while for you, what do you wish you had known when you were first diagnosed with fibro? How have you been able to connect with others with fibromyalgia, if at all?

We’d love to hear your answers in the comments section below!

Newly Diagnosed? (what you wish you'd known) | Living with Fibromyalgia | Fibro Pulse @fibropulse ( #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

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2 years ago

Thank you for this informative video because I plan to share it with family & friends who might benefit from hearing the indications from someone besides me. I’ve been dx for about 10 years now but every day can be a new challenge. So thankful that I joined Instagram and have found groups like this. I’ve been able to release anxiety just knowing someone understands and cares.

2 years ago
Reply to  Annette

Thank you so much for your kind words. I’m so glad that you have found this video to be helpful. I was diagnosed with fibromyalgia nearly 20 years ago and it’s been a long road. No one should have to do this alone, without support and understanding. I’m so glad we can be here to help each other.

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