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The 5 Stages of a Fibromyalgia Diagnosis

I remember the exact day I was diagnosed with fibromyalgia. I showed up to my appointment looking thoroughly exhausted, no makeup, with a beanie to cover my unbrushed hair. I was run down and had difficulty focusing.

I was with my husband and this was my second rheumatologist referral. I was fortunate to be seeing a doctor I trusted. I had to make sure she understood I wasn’t enjoying the state I was in, and that I wasn’t a hypochondriac. I wanted my voice heard so I had to be my own advocate. Through teary eyes and a weak, sobbing voice, I told her I needed her to listen.

She ordered blood tests, an exercise physiologist and asked me both normal and unusual questions. She listened to me and asked me to come back — but this time with all the x-rays I had. Yep, fibro fog prevented me from bringing them as initially requested.

Sitting in her office, I was in pain with tears running down my wincing face as she applied the standard test of trigger points, each touch more painful then the last.

And then finally, there was the diagnosis. So now, I present to you what I consider the five stages of fibromyalgia.

Stage 1: The Unknown

You have a variety of symptoms of widespread, ever-changing pain, often ignored as you struggle through your days, slipping behind your social engagements and housework. Perhaps you take pain and sleep medications. You’re slowing down and not enjoying life like you used to

Stage 2: The Aware

You’re now starting to pay attention to what your body is telling you. You’re in a lot of pain. You can no longer ignore the lack of sleep, the electric shocks and sparkler pains down your legs and on the surface of your skin. You’re now ordering your doctor to get you tests — urine, blood, x-rays. You want answers and relief. You now might be adding vitamins like vitamin D, B injections, etc. You’re now starting to let go of some of your activities. Maybe you just got your diagnosis, and you’re Googling it a lot…

Stage 3: The Flare

There is not much improvement. If anything, you’re getting worse. You may work less or stop altogether. You find yourself disappearing from your social scene. You’re still trying to put on a front, keeping up appearances. You jump on the merry-go-round again. You’re now taking the symptoms seriously. Bed and the TV remote are your best friend. You’re now well-versed with fibro terms. You’re working out where you fit in with life, wondering about the purpose of it all. And you now have your very own med box filled with vitamin D, krill, magnesium, B, echinacea, lysine… You’re demanding your GP get off his rear end and go to bat for you.

Stage 4: The Roundabout 

You’re ready to hop off and find another ride. You’re at your wits end, and you’re in constant pain. If it’s not one thing it’s another. You’re still dealing with people who don’t understand, and this is not limited to just your partner, loved ones and friends. This also means medical professionals. You check and recheck your treatment and meds. You start monitoring diet and reactions to meds. You’re writing everything down. You’re now years into your fibromyalgia, and still navigating coming to terms with it. You’re not quite there.

Stage 5: Making Peace

You have made your peace with fibromyalgia. You have started to etch out a new life. You get your pain managed. You no longer pretend. You’re making new friends and taking on new projects. You might still occasionally look back, and you’re somewhat an expert on the subject all things fibromyalgia. You can live with this.

Getty image via Evgeny Gromov