That’s the question I find a lot of people ask themselves pre or post-diagnosis. I know I did for many years and still do now post-official diagnosis. I’m sure many of you can relate to the emotional rollercoaster of hope, fear, and uncertainty. So, with confirmation that I do have it, why am I still questioning if I have fibromyalgia?

The simple answer is that my symptoms of late have been changing and evolving thanks partly to the onset of perimenopause, but also some health tests throwing up questionable results, meaning that potentially my fibromyalgia can be something else.

But what? That’s the question, isn’t it? The conclusion of a fibromyalgia diagnosis is determined in the absence of a diagnosis of everything else. But what if everything else hasn’t actually been ruled out?

But, Do I Have Fibromyalgia Really?

Studies have found that around 15% of people diagnosed with fibromyalgia have been misdiagnosed. While getting a name for what you’re going through can be a massive relief, the possibility of a misdiagnosis raises a crucial question: What if you need treatment for something else and you’re not getting it simply because the right tests weren’t done or the bigger picture wasn’t studied?

I have had multiple tests for various symptoms and ailments recently. Currently, I am under the care of a haematologist (consistently high platelets prolonged over 10 years at least and high ferritin levels but not high iron levels; haemophilia has been ruled out) and have just had a bone marrow sample taken to rule out conditions such as myeloproliferative disorders.

And it got me thinking: Could I be going through all of these tests only for it to be confirmed that it is fibromyalgia, or will eventually, some six years down the line, new tests throw some more light and reveal that actually this isn’t the cause and there is a different condition at play?

At this point, we will never know. With so many overlapping symptoms between fibro and other conditions, it’s hard to see the wood for the trees at times, as you can subjectively self-diagnose with many things without medical proof or confirmation.

So reluctantly, I will await the test results and ongoing future investigations to get to the bottom of new worsening symptoms. Lightheadedness, breathlessness, and brain fog are not just symptoms; they are daily challenges that I am determined to face with resilience and patience.

Peri-Menopause and Fibromyalgia

I am aware that these can all be attributed to peri-menopause, for which I am using patches to control symptoms. And I am also aware that most people with fibromyalgia can experience fluctuations in symptoms from time to time outside of flare-ups and often coexist with other conditions.

So, what do I think it is? I genuinely do not know. I might be right in thinking that it could actually be something else, or I could be wrong. My body could be playing tricks on me, as could my mind. I might simply be succumbing to perimenopausal symptoms, which make me feel worse every day.

So, for now, I will keep doing what I am doing. I will aim to get back to a good gym routine and improve my diet again. I will try to lose more weight, as all of the above help my symptoms—not eradicate them, but help me feel better. I am hopeful that with the support of medical professionals, I will be able to ascertain the root cause of my health issues and find a way to manage them effectively. 

But that’s it for now. I could probably go into more detail as to why I keep asking if I have fibromyalgia. Still, those struggling with this insidious condition will know all too well the thoughts and feelings associated with this awful condition. I will get an update as soon as I have more answers.