'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?

As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis just so I can have a name for what I am experiencing. I don't care what it is; I just want to know.

But then I had a diagnosis experience that started in 2022 that I've never had before. Even over a year later, I still don't know what to think about it.

A new diagnosis... or 2?

Following my gall bladder removal in 2021, I began experiencing new chronic pain that was debilitating. It took 6.5 months and consults with 7 specialists to obtain a diagnosis of abdominal migraine.

However, during that same time, my primary care doctor (PCP) also diagnosed me with fibromyalgia syndrome (FMS) – except I didn't realize it. She suggested I may have FMS, but that was all I understood the conversation to be – an idea thrown out there – not a proper diagnosis.

A few months later, I noticed FMS had been added to my problem list. I found that odd but ignored it. I didn't have the energy to devote much thought to it, and I certainly did not have enough to explore it on my own.

I was focused on managing my chronic pain

By this time, I had received the diagnosis of abdominal migraine, and I was receiving proper treatment to start managing my chronic pain to a more tolerable level. My body and brain were exhausted. I had a diagnosis and treatment plan in effect. I honestly didn't even know if I would feel like devoting any energy to a diagnosis of FMS, and I still don't know even now.

Talking to my doctor about my diagnosis

At an appointment this year with my PCP, she specifically asked me about my FMS. I asked her if she really thinks I have it. She knows I'm one to delve into deep research about my health and any bothersome symptoms.

We briefly talked about why she diagnosed me with FMS and how I felt about it. I shared with her about my lack of energy to fully explore or even process the new diagnosis.

It's not that I don't trust my PCP either; I've kept her for years because I do trust her. It just doesn't make sense to me, and I hesitate even saying that I have FMS. I feel like an imposter because I don't identify with it.

Overlapping symptoms between conditions

During my extensive efforts to diagnose my pain following my gallbladder removal, I underwent a rheumatology evaluation (without any answers). And after my appointment with my PCP, I even went so far as to ask my neurologist about it.

Granted, he doesn't have a large knowledge base about FMS, but he did tell me that patients who have migraine often have FMS and vice versa and that if a doctor thinks I have FMS, then I likely do. There are a lot of overlapping symptoms between abdominal migraine and fibromyalgia, so it's not easy to separate them out – which is what I truly want to do but can't.

What really matters to me

So, that's where I left it all. I'm not any clearer or accepting of this new diagnosis. I don't really feel that it's true for me and yet at the same time, it fits too well to be able to discount it.

As I continue to grapple with it, each time I try to argue against it, I remind myself of the words from my neurologist. And then I tell myself, what does it really matter? Either way, my symptoms are being well managed now, and isn't that the most important thing?