A Letter to the Newly Diagnosed Fibromyalgia Warrior

Finally, you’ve got it: an official diagnosis. After years (or even decades) of dealing with unexplained symptoms like widespread pain and inflamed joints, your doctor sat you down and said the magic words: “You have fibromyalgia.”

Your first reaction might be relief. Even if you don’t know a thing about fibromyalgia, you finally have an answer. You’re not crazy! Quite often, though, other emotions soon start flooding your head: Fear. Joy. Depression. Uncertainty.

What I Want Everyone Recently Given a Fibromyalgia Diagnosis to Know

Trust me - as someone diagnosed with fibromyalgia at age 11, I know how much of an emotional roller coaster a chronic illness diagnosis can be. So, while I had some extra time on my hands this winter break, I decided to dedicate some it to reflection. In particular, I asked myself: "What do I want the newest members of the fibromyalgia community to know?" Here's the answer I came up with...

What to Know After a Fibromyalgia Diagnosis:

First off, your pain was - and is - real. I start with this because it’s often exactly what other people (from doctors to family members to significant others) refuse to believe.

In fact, maybe you spent years trying to get your doctor to find something - something that made leaving your bed each morning a nearly impossible challenge and turned your joints into timebombs waiting to implode - wrong with you. You might have even started to question yourself. Maybe everyone woke up with aches that got steadily worse as the day went along? Maybe you were the crazy one after all.

What I Want Everyone Recently Given a Fibromyalgia Diagnosis to Know

On the other hand, maybe your fibromyalgia diagnosis came as a complete surprise. You could’ve had an entirely healthy and pain-free life until your body started hurting one day...and never stopped.

Either way, receiving a fibromyalgia diagnosis may initially feel like an affirmation. You were telling the truth to all of those doctors, loved ones and friends. You really were in pain. You were right!

Unlike other medical diagnoses, though, being told you have fibromyalgia is a little different. Why?

There’s no magic pill or 10-step formula you can follow to feel 100% pain free.

Yes, you can receive medication to help your symptoms. This is a definite blessing and I don’t want to minimize it. One of my biggest fibromyalgia symptoms is insomnia, and when I do forget to take the sleeping pills I’ve been using for the last ten years, I realize just how - to put it plainly - screwed I’d be without them. And when my fibromyalgia flare ups were at their worst, my official fibromyalgia diagnosis let me receive referrals to physical therapy. So, once you do receive an official fibromyalgia diagnosis, I definitely recommend talking to your doctor about joint health supplements (like GOPO) or medications like gabapentin that are often used in fibromyalgia treatment.

Yet, a fibromyalgia diagnosis sometimes feels useless. Before the doctor wrote those words in your medical chart, you hurt...and being diagnosed won't automatically make your pain go away. So if you feel frustrated or hopeless after your diagnosis, know that you aren’t alone.

What I Want Everyone Recently Given a Fibromyalgia Diagnosis to Know

However, you should also know this: you might have even more power over your chronic illness than your doctor does. 

Some doctors might offer a referral to a nutritionist or talk about the benefits of a gluten free diet for , which has recently become more commonly linked to decreased chronic pain. But you are the only one who can 100% decide to experiment with changes in your diet. You’re the one who can keep a food journal tracking your meals and symptoms. You’re the one who can explore if a gluten free diet or a low fodnap diet improves your daily pain (like it did/does for my mom and me).

You’re also the only one who can find out what exercise plan works for you. I’m lucky that, despite my fibromyalgia, I can enjoy a lot of different forms of physical activity. Believe me, I know and am thankful for this. However, I do believe (notice: I say “believe” because I’m not a medical professional; I’m just a fibromyalgia veteran with several close friends with fibromyalgia) that everyone can find some form of movement that works for their body.

What I Want Everyone Recently Given a Fibromyalgia Diagnosis to Know

Depending on where your pain level is right now, just getting out of bed and going to work every day could be your daily physical accomplishment. Maybe you can try adding short walks that stretch into longer ones or gentle stretching routines that start morphing into beginners yoga sessions. You can even talk to your doctor about working with a physical therapist to learn what strengthening exercises or stretches could help you.

My main point? Even though a fibromyalgia diagnosis isn’t a panacea - and you may even hate your diagnosis for not being the real “answer” you’ve been looking for - it can be a jumping off point for your own medical empowerment. You can use the resources that your fibromyalgia diagnosis gives you - ranging from medications to referrals to other experts - as fuel for the lifestyle changes that could make living with fibromyalgia easier.

The last thing I want any newly diagnosed fibromyalgia warrior to know?

Whatever you feel, you’re allowed to feel it. 

You’re allowed to have good days where you think, “This is awesome - is this what ‘normal’ people feel like?!?" and have a blast doing whatever you want. You’re allowed to have pity parties when your slow but steady progress starts to reverse, or when you just really hate how hard living with fibromyalgia can be. And you’re allowed to not know how to feel when your doctor tells you that you have fibromyalgia in the first place.

What I Want Everyone Recently Given a Fibromyalgia Diagnosis to Know

You know why? Well, besides the fact that you’re one heck of a badass no matter if you’re having a “good” or “bad” pain level day, someone else is probably feeling exactly like you. On days when I’m hurting more than usual or hating how much harder fibromyalgia makes grad school, I remember that I’m not alone. There’s a huge fibromyalgia and chronic pain community on and offline, and that means that there’s always at least one person who can completely relate.

And when you’re used to speaking a language of chronic pain that very few family members and friends can really understand, knowing that you’re not alone or crazy or overly emotion is often the exact comfort you need.

I’d be lying if I told every person recently diagnosed with fibromyalgia that life automatically gets easier. Even eleven years after I was diagnosed, I still have my share of fibromyalgia flare ups. However, discovering what you can do to improve your life with fibromyalgia does get easier. New research is published. You hear about different tricks and tips - ranging from dietary changes to supplements to stretches - that others with chronic pain have found helpful. You learn to feel grateful for the good days and have a solid support system for the bad days.

What I Want Everyone Recently Given a Fibromyalgia Diagnosis to Know

And, most importantly, you discover that, as many challenges and negatives that come with fibromyalgia, there are a few hidden blessings as well. 

Some of them? Discovering that you are so much stronger than you ever imagined - and that, no matter how much you can’t control your fibromyalgia, your perspective on living with chronic illness is up to you.

Much love to my fellow fibromyalgia warriors and spoonies, as always - especially during the rush of holiday season!

No questions today. Just tell me your thoughts!


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