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Fibromyalgia: The 5 Stages of Diagnosis and What Went Wrong in My Medical Care

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It started with some tenderness in two or three knuckles. A couple of days later, my hands were definitely hurting and my elbows were sore. A couple of days after that, I felt it in my shoulders, too. Then suddenly, my whole body just ached, the way it does if I have a very bad cold, and I was so, so tired.

I remember family visited to help me with a home repair and I could barely move from the couch. That’s when we all recognized that something was definitely not right.

It was a full year later when I was finally diagnosed with fibromyalgia and chronic fatigue syndrome, and what an awful year that was.

What It’s Like to Be Undiagnosed

I didn’t have words to talk about it. It was simply “I have this mysterious thing going on” followed by me listing all these invisible symptoms. I had even less credibility than I do now. People just didn’t believe me.

I didn’t know how to treat it. How can I treat what I don’t know I have?

I didn’t have my people, my community of those who are living through a similar thing, because I didn’t know what my thing was.

Instead of worrying about the one (or, as it turns out, two) diagnoses that I had, I was constantly worrying about the multitude of diagnoses it could possibly be. Until I knew which ones I had, it was like I had them all!

I was burning time off at work going to all the appointments, and still no answers. I was frustrated. It was more loss.

I couldn’t begin the acceptance and grieving process, because I had no clear picture of what I was supposed to grieve.

The Stages of Diagnosis

In hindsight of my experience, I identified what I call the “five stages of diagnosis” that I think many people can relate to.

1. Onset of fibromyalgia symptoms.

This is when weird stuff starts to happen. I did my best to explain each symptom away and pretty much ignore what was going on while I waited for it to go away.

2. Self-diagnosis.

It didn’t go away, so I hit the Google, and of course, any time we look online for a diagnosis, we inevitably have cancer and AIDS. We really need to skip this step and let a professional do their job.*

3. Medical testing.

Yes, I went to a doctor. This part was awful. It took three different phlebotomists four tries to draw my blood and I hate needles to begin with. The tests yielded no answers. I was very frustrated and hated using my limited time off work being actually sick. I went to another doctor, whom I saw regularly, and they still gave me no answers.

4. Diagnosis.

It was when I regressed back to stage 2 and determined that I had chronic fatigue syndrome that my rheumatologist listened and diagnosed me with both chronic fatigue syndrome and fibromyalgia. (*I know I say skip stage 2, but in my case, I did have to do some of my own work. “Let a professional do their job” only works if they’re actually doing their job.) Now I had answers. I had words at last. I had a picture of my future. I could begin the grieving process and figure out the next steps.

5. Treatment selection.

Now that I had a diagnosis, I could treat it. My rheumatologist started me on medication, which I hated, and I stopped taking it and also stopped going to the rheumatologist because I didn’t like how she pressured me to try that medicine. I currently manage my fibromyalgia with vitamins and supplements, diet, exercise, sleep, and joy. Things change as I learn more about what’s available and more about myself. This stage is lifelong.

What Went Wrong in My Medical Care

I feel faulted that my diagnosis took a year, and still, I hear stories from people whose diagnoses take decades. There is a shortage of medical professionals who specialize in fibromyalgia care; there is a shortage of belief in fibromyalgia and chronic fatigue syndrome within the medical community. There is a shortage of giving-a-rats-behind within the medical community when it comes to conditions that affect predominantly women. So I got whom I got.

When she finally diagnosed me, that day I arrived with a self-diagnosis, she said to me, “Why didn’t you tell me all this before?” referring to the symptoms I reported … and had reported all along. That made me angry. Then she shoved me into her box of what she believed fibromyalgia to be — a one-size-fits-all box — and insisted I take a medication for the pain. I told her my pain wasn’t that bad. I pleaded for help with the fatigue and brain fog. I refused to take the medication at first; then she guilted me into it at my next appointment. The side effects were (wait for it…) fatigue and brain fog! For consistently not listening to me, for not bothering to know me as a person and my fibromyalgia as my unique version of it, I never went back.

How I’m Thriving Now

I created the Splat System to help me not just talk about my fibro and CFS but also to live a better life with routines and self-care and enable other people to help and support me. I’ve self-taught a lot about nutrition and try to eat and do the things that make my body feel as best as it can. I’ve learned to replace things I’ve lost with new joys. I started my own business (teaching about invisible disabilities!) so I have total control over my work life and can accommodate my disability. And sometimes I feel sorry for myself because it does suck to have these conditions, and I cry, and that’s OK.

Originally published: May 8, 2022
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