Staring down the barrel of a possible fibromyalgia diagnosis.

I am 35, female, live in England, and use the NHS.
Fibromyalgia has been on my mind as a possible diagnosis for quite some time, mainly because my mother was diagnosed around twenty years ago, and some of my symptoms are very similar to hers.

I never sought a diagnosis before. I think one reason is that I saw how my mother was repeatedly dismissed. Every time she went to the GP about her increasing pain, she was told, “It's fibromyalgia.” Except it wasn't always. She later discovered she has early-onset osteoporosis and has fractured her spine multiple times, unknowingly, because it was assumed to be “just fibromyalgia.”

Over the past few years, I’ve been experiencing increasing pain in my back and joints, and recently it has reached the point where I am struggling to cope. I messaged my GP and was referred to a “first contact physiotherapist,” who, after learning that my mother was diagnosed with fibromyalgia, seemed to focus on that as a potential diagnosis for me as well. He attributed all of my symptoms to fibromyalgia.

However, I have since had imaging on my lower back and tailbone, which showed multiple bulging discs, one extruded disc, compressed nerves, inflammation, and signs of hypermobility. I can’t help but wonder, if some of my symptoms have a physical cause, how many others do too? My joint pain, for example, it is very mechanical: pain when extended, pain when twisting etc. I worry that some symptoms may be overlooked or not investigated because of the assumption that I have a pain sensitisation disorder, which, so far, is only suggested by the absence of systemic inflammation in my blood tests and the presence of multi-area pain.

At the same time, I am equally scared that I do have fibromyalgia. I have other symptoms, lumps and tender points all over my ribs, abdomen, shoulders, etc. If I am honest with myself, I don’t want to be diagnosed with fibromyalgia. I have seen what my mother has gone through: a life of chronic pain, being dismissed, having medical issues missed, constantly being undermined and invalidated. The idea terrifies me.

I want to be able to sit without my tailbone and hips hurting. I want to get comfortable in bed. I want to move well. I want to be able to properly relax. I don’t want to give up going to the gym altogether. I don’t want cooking for my partner to become a struggle. I don’t want everyday tasks to get harder and harder. I really don’t. I know how badly some people suffer and nobody wants that.

Even if I do have fibromyalgia, I feel like I should be given an assessment for it, by a specialist, not just have a GP say "most likely fibromyalgia, nothing we can do".

When I'm in pain and struggling, I get tearful and I get angry, I end up feeling like the medical field should understand it better, they should know more, do more research and be able to help people. Or at the very least say "look, we just don't know much about it, I'm sorry."

My poor mother doesn’t deserve the life she’s had, and I don’t deserve that either. Nobody does. I do everything I can: I drink water, go to the gym, try not to sit too long, don’t smoke, rarely drink (only at Christmas and New Year, maybe Valentines), I'm trying to eat better, I do my physio exercises. And yet, my pain is only getting worse. I know life isn’t fair, especially when it comes to health, but… I don’t know, it all feels very sucky right now.

Full disclosure: I’m due on my period next week, so I might be feeling more emotional about it than usual. I just needed to get this out.

We shouldn’t judge people for trying to find alternative explanations to fibromyalgia. They might be right, and they might not be, but it’s better to rule everything else out.