I recently found out that the fogginess, pain, and fatigue that I have experienced in waves over the last couple of years are part of a bigger picture.

After tons of lab work, a string of doctors, and that super fun MRI, my doctors have ruled out some big, scary things. That’s good news, of course.

A couple of weeks ago I sat in my doctor’s office as he connected the dots and diagnosed me with Fibromyalgia. I immediately felt a few things.

One. Relief that this thing has a name, and that the thing that sometimes feels like it’s killing me won’t actually kill me.

Two. Frustration that it’s a diagnosis of exclusion and has therefore been a normal and misunderstood part of my life for so very long.

Three. Worry over how I should justify my history, this diagnosis, and my ongoing symptoms to people who think Fibromyalgia isn’t a real thing. (And those tempted to make well-meaning but unhelpful suggestions.)

Until now, I’ve kept this new information between me and only my most trusted people.

I’m a grown woman. I know how I feel. I know I’m not making it up. I know that I’m not the only one to feel this way. And still, I want to justify my symptoms to you. I want to convince you that this is a real thing and that I’m not just lazy or crazy.

I want to, but I won’t. Instead, I’m going to tell you what my experience has been so that maybe even one person won’t have to believe that they are just lazy or crazy.

For nearly 15 years, I have struggled with chronic headaches, anxiety, depression, body aches, sensitivity to touch, bladder issues, restless legs, dizziness, tingling, and fatigue. Symptoms first began when Alex & Emma’s health was poor and Drew was preparing for another deployment. (If you’re new here, you can catch up by reading the post pinned to the top of my FB page.) The severity and combination of symptoms fluctuate. I’ll have days or weeks when I flat out don’t feel good and everything is a struggle. Then I’ll have weeks or months when I feel pretty much okay. (That being said, my version of “okay” still includes some baseline symptoms that aren’t normal for most people.)

Emotional stress and physical overexertion sometimes make my symptoms worse. I need lots of rest. Exercise is invaluable. Caffeine and sugar make everything worse.

So what is Fibromyalgia, really?

Well, it isn’t a disease. There is no one thing that a specialist can point to and say, “Yep, there it is.” Instead, it is a syndrome (a collection of symptoms) that boils down to a pain processing problem. Why? They don’t know. It’s possibly genetic and is often (but not always) triggered by a traumatic event. It can only be diagnosed when symptoms meet certain criteria, have been ongoing for an extended period of time, and all other causes have been eliminated.

Moving forward, I hope to control my symptoms by prioritizing these three things.

One. Getting better sleep. This one is tricky, and I don’t have answers yet, but I’ll soon see another specialist for this.

Two. Taking better care of my mental health. I’ve taken medication for anxiety and depression before, but I haven’t felt like it was needed in years. I need it right now and am hopeful that it will soon provide some relief. I’m also looking for a therapist so I can have the best coping strategies in place. I’ve got a lot of things, you guys, but shame about taking care of my mental health isn’t one of them.

Three. Moving my body. I’ve known for years that exercise helps me sleep better and is good for my mental health. I’m typically a 1-3 times a week moderate exerciser, but I’m now focusing on increasing that frequency and building my strength and endurance. It can no longer be a nice little thing I do when I have time. It’s a necessity.

I’ve made a commitment to honesty in this space and while that doesn’t mean that everyone is entitled to the private details of my life, it does mean that I’m willing to share a lot in the name of knocking down shame and fear. It’s the only way to make room for love and grace.

Thank you all for making this a safe space.

Hugs, Mandy

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