When Online Articles Claim the 'Fibromyalgia Mystery Is Finally Solved'
Once again there are articles being posted all over social media titled “Fibromyalgia Mystery Finally Solved!” I’m reading one that was sent to me, dated a few days ago, but the strange thing is I know what the article is going to say before I read the words… That’s right, I’ve read this before. This isn’t something new. The article was only posted four months ago, but I read it this time last year, about six months before that and a couple of years before that. This is an article that has been repeatedly published with the same title.
Like many people who have been diagnosed with fibromyalgia, I wasn’t content to live the bleak life that my doctors had predicted for me. Although it was disheartening to have every doctor around me immediately give up on trying to help me as they informed me that my life was over, I wasn’t about to give up on myself.
Having a name for the pain that was hurting my body and nothing else to go on, my first instinct was to research. We live in a wonderful age where a wealth of information is at our fingertips, just a few clicks away. So I researched what fibromyalgia was, suspected causes and possible cures.
As you can probably guess if you’ve been reading my blogs or know anything about fibromyalgia, the first things I found out were that fibromyalgia causes chronic pain and fatigue (well, that wasn’t really news) and that there was no cure (as I’d been told by the doctors).
The next thing I discovered was that although they weren’t sure what causes fibromyalgia, they had three suspected triggers: emotional stress/trauma, physical trauma or genetics/virus. The reason I have paired genetics and virus here is that this particular theory involved a gene that was triggered by an unidentified strain of virus. As you can probably imagine, that doesn’t eliminate much and about all I could see from that was that I seem to tick all three boxes.
I decided not to get too hung up on the “triggers” since I already have fibromyalgia – I was looking for a way to live with it. I looked at what they thought it actually was; obviously there is a huge list of symptoms, but was this neurological, in the muscles or bones? I found a selection of theories:
– Neurons misfiring
– Increased blood flow in the brain
– Liver problems
– Hormone imbalance
– Swollen veins
– Black mould poisoning
– Wheat/gluten intolerance – I think you get the picture…
Every single one of these articles had a title like “Fibromyalgia Mystery Finally Solved” or “Fibromyalgia Is No Mystery.” They all spouted theories, sometimes quite in depth, but what was interesting were the statistics. In one I had read, they had scanned 30 people to verify their theory; 10 of them had fibromyalgia, nine of whom tested positive and so did a few of the non-fibro patients. Those seem like pretty weak statistics to be going on, but the article claimed the mystery was solved. Almost a decade later, I’ve heard nothing more of that theory and we’re still no closer to a cure.
Imagine the impact of that article getting my hopes up and then letting me down, times it by 100 articles that did the same, and suddenly we see the reasons why I am now a bit of a skeptic. I don’t get my hopes up when I see these articles because it hurts so much more when nothing comes of them.
Of course I hope that one day I will read an article that says the mystery is solved, will detail a cure and the next day I can get referred for it. I am hoping there will come a day when I don’t wake up in pain, I’ll have slept well and I won’t have to be afraid to find out if I can move or not. I dream of the day I can live in a house without worrying about steps, where I don’t need to fuss about disabled access and where I can go out with my friends, not needing a walking stick or a wheelchair and not having to cut the night early because a sudden onset of increased pain made me collapse.
I want a cure!
I was faced with two options of how to live my life. The option I rejected was one that got my hopes up every time I read an article, then when nothing came of it I was heartbroken. It was a rollercoaster that fed my depression and I didn’t know what to live for. Instead I decided to keep hoping for a cure, but face life as if I won’t get better. I’m not holding off on life, waiting for a cure being found; I plan around my mobility issues and mood swings, I take time for myself when I need it, plan ahead, do my best to juggle doing with resting.
To all those who have been sharing articles about the Fibromyalgia Mystery Finally Solved: thank you for your care and support, for sharing what you think may bring us hope. I especially appreciate articles that detail a possible cure rather than just theories – they are the ones that sometimes do give me hope. I won’t ask you to stop sharing these articles because while so many of them come to nothing, your support means everything. Maybe one day the article you send me will be the one that really has found a cure.
This post originally appeared on N.J. Gatehouse.
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Thinkstock photo via Poike.