Unless you have a really good physician, and few fibromyalgia patients do, you’ll either hear that every symptom you have is part of your fibromyalgia and there won’t be any attempts to look beyond the diagnosis (and billing code) in your chart, or you’ll hear that it’s all in your head. Often, this leaves many patients with rare diseases and the co-morbidies that come with fibromyalgia either turning to google or chalking it all up to their fibro without relief.

This creates a potentially unhealthy cycle. On one hand as a patient you don’t want to be claiming diagnosis just to collect them like trinkets to put on your shelf. However, on the other, if it is something beyond fibromyalgia, such as the chest pain that comes with costochondritis, you want it checked out to be sure it isn’t anything more serious. And if it’s a condition that is frustrating, like hives or skin rashes, if you know what causes it, you can work to avoid it.

Doctors also tend to look down on patients who do their own research. Going into the doctor and saying “what about this?” is met with scorn or the belief that you’re “pill seeking”. So what’s a fibromyalgia patient to do?

I research and experiment. For example I’m currently taking Quercetin and Bromelain supplements as they are reported to help reduce inflammation and MAST cell responses. I’m also taking garlic supplements as it boosts immunity, works as an anti-inflammatory, and improves cardiovascular health. It’s probably too soon to see if there are any responses, and I’m not sure I’ll be able to afford to continue, though I get them from Amazon at a reasonable price (Under $10/bottle). I also switched to a pre-natal vitamin to help my anemia and provide more nutrition. These small things I can do without seeing my doctor or getting a prescription, though understandably, I should inform my doctor of this if anything in my health changes.

Most importantly, I’m open. As my fibromyalgia ramps up, I listen to my body. I listen to research, much of which our doctors aren’t aware of, and I listen to others with rare diseases like mast cell disorders and chronic lyme as my symptoms overlap with them and my history suggests those as well.

We have to look out for our own health, while keeping in mind that there are times when our doctors are right. This could be my fibromyalgia increasing, and as such I’m treating it that way. They increased my generic Cymbalta and hopefully with the additional supplements, the flare will ease. But it’s all a learning curve, and we’re always figuring out new things.

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