The Words That Changed Nothing And Everything

“Everything looks consistent with fibromyalgia.”


The words from the rheumatologist that I had waited months to see changed nothing about my experience. I didn’t suddenly start experiencing symptoms because I had received a diagnosis.

Those words changed nothing but my awareness….but that awareness changed everything.

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I didn’t know what fibromyalgia was before my primary doctor mentioned it nearly a year ago. In case you are where I was, here’s a quick synopsis:

  • Fibromyalgia is “disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues” (Mayo Clinic).

  • It is, as my rheumatologist put it, a diagnosis of elimination. If you can’t find any other reason for the symptoms mentioned above (if they are chronic, lasting 3 months or more), it gets called fibromyalgia.

  • Fibromyalgia is not fully understood. It was only recognized by the World Health Organization in 1992, and the causes are still not known. Current research points to how the brain and spinal cord register pain - with Fibromyalgia, the sensor cells carry more pain signals than normal.

  • Fibromyalgia is often triggered by a traumatic event (loss of loved one, giving birth, abuse, etc), but/and can be genetic and linked to depression/anxiety or gender (more prevalent in women).

  • Fibromyalgia can be treated but not cured. Medicinal treatments address the symptoms (so medications that reduce the fatigue or anxiety, for example). Non-medicinal treatments include movement, stress-relieving practices, and sometimes diet changes.

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This diagnosis has been eye-opening and quite difficult for me.

I honestly have struggled to claim it, to say, “I have fibromyalgia”.

For years, I’ve experienced:

  • the most embarassing of all - almost daily naps. (And when I say “naps”, that means 60-90 minutes of sleeping.) I have literally arranged my schedules so that I have 2 hours in the middle of every day where I can nap. Sometimes I’m able to go without one, but on any day where I don’t have that 2 hour window, I wake with massive anxiety. (Why embarrassing? I have linked it with laziness. More on that unfortunate association later.)

  • regular flares of all-over physical discomfort. I wouldn’t call it pain, rather a tenderness like after you’ve gone skiing for several hours or walked around Disney for two days or have the flu. The body just feels achey. Some days, I’m absolutely fine. Other days, not so much.

  • anger, depression, and/or anxiety, in no particular order, and often with no discernible cause. (I’m very good at finding one or making one up, though.)

  • what is known as “fibro fog” - forgetfulness, being easily distracted, etc. This is a big one for me, and something I’ve often wondered about.

[Note: Those with Fibromyalgia experience symptoms differently. I provide my experience only as an example.]

But, all of these years, I have attributed each of these things to something else….and letting go of the fact that I might not be at fault for what I’m experiencing is extremely difficult. I’m tired because I’m not eating right or sleeping enough at night (even though I regularly get 6-8 hours). I’m physically uncomfortable because of walking on hills every day or not stretching enough. I’m moody because hormones/not practicing meditation/kids/(insert any external reason here). I’m forgetful because of age or pandemic brain or….

I’ll be getting into my struggles with the diagnosis in future posts. For now, suffice to say that it is hard for me to accept that my aches, fatigue, forgetfulness/distractibility, and mood are not something I can control.

Of course, I’d tell anyone else to not put so much pressure on themselves, to allow the diagnosis to be part of who they are, not something they resist. But we are always harder on ourselves, no?

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I don’t want to be “that person who has Fibromyalgia”. But I also feel it is deeply important to share this part of my story and to allow it to be woven throughout my other tales.

I share this, in part, to shed light on the fact that we ALL have more fascinating and challenging lives that are invisible to others.

Awareness of this changes nothing … and it changes everything.

(Everything is still just as fascinating and chaotic and challenging as it was before your awareness. But with each little “oh!”, you open your own understanding of what life is and can be. And THAT changes everything.)

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I’ve written and re-written this post countless times.

There are so many feelings I’m having around all of this. There are so many stories to share - both of the direct experience of fibromyalgia and the diagnosis and of the insights that arise that have little to do with fibromyalgia but everything to do with well-being.

I’ll be sharing more about my experiences, what I’m doing differently (or the same) now that I know, as well as more explorations into Fibromyalgia and the experiences of others. But this certainly won’t become “all Fibro, all the time”.

This is a thread that will be woven through what I’ll share from here - a glimmering bit of experience and awareness that creates a new richness to all I have to offer…and hopefully, to all that you receive.

Lisa Wilson10 Comments