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I ask because apparently, I have it. At least I have something. It’s hard to test for fibromyalgia, an expert makes an informed decision, and then you either have it, or you don’t.
My health condition is very real, so if I have fibromyalgia, then the answer is yes it’s real. But, and I’m struggling with this as I don’t wish to offend an entire community, is it actually fibromyalgia or do I have something else?
It seems that they package up a complex collection of health needs and stick this label on it. I was tested for everything and then done more stuff, it took years to get to this diagnosis, but then you are given a list of medications and left to get on with it. And if I feel unwell or anything new arises I’m told it’s just my fibromyalgia and there’s nothing anyone can do about it.
So maybe the title of the post is a little misleading. Is fibromyalgia a specific collection of conditions? Or is it a diagnosis you get when they don’t know what you have? That wouldn’t mean it’s not ‘real’ but I worry about the accuracy of the diagnosis, and how vastly my fellow fibromyalgia sufferers symptoms and conditions differ across the range of people who have it.
I know if people who are unable to walk some days. I feel absolutely horrible often, but I can always walk, even if I feel like I don’t want to as I’m in a lot of pain. Am I going to end up needing a wheelchair too? A walking stick? Will I ever run again? Will I ever feel pain-free?
I just feel that when doctors don’t know what else we have, they seem to call it fibromyalgia as long as you tick specific boxes too. Is that meaning the condition appears far more complicated than it is as the range of symptoms is so vast? Are medical researchers going to struggle to help us to live pain-free lives because of this?
I didn’t write this to question if people with fibromyalgia are actually ill, and it isn’t written as click bait. I genuinely don’t know if what we all have is the same condition, as if we don’t then it’s not fibromyalgia, surely. If we all have the same core condition, then I guess it needs a name, and fibromyalgia is as good as any.
Some doctors struggle with it, they have difficulties diagnosing and some won’t even accept it as a condition. This isn’t helpful; people are obviously ill.
I’ve been told, in my case at least, that my brain is knackered and what I have is the outcome. It’s neurological, it’s complex, it won’t ever go away, and I’m treated with physical painkillers and neurological medication generally used for mental health disorders.
Am I destined to spend my life taking pills? Will I ever feel better? Will I eventually get to a level where the maximum permitted doses don’t help my symptoms? Will I be using a wheelchair sometime soon?
This isn’t asking for answers; I don’t believe anyone has them, I’m just thinking out loud. I’m scared, and I’m fed up with feeling like this. I regularly contemplate suicide as a genuine option to end my discomfort, but for now, at least I’m still here. I just wish I had a better understanding of what was going on with my body and that there were ways to make me feel at least a little bit better. Reading and research don’t help; it just gives me more questions than answers. Online forums are depressing and not the place for these sorts of questions.
For now, at least I’ll keep on taking the medication and hope that there is some kind of breakthrough in the near future. My one positive is that as so many of us have and are being diagnosed with fibromyalgia, then there must be at least some research into cures and causes and how to improve our lives.