This morning on my usual bus ride to work, I threw a question out to a couple fibromyalgia support groups on Facebook:  Have you ever been told what caused your fibromyalgia? If so, what? For me, I was told mild arthritis in my back caused it.

Within just a few moments, I started getting responses.  Thank you all who responded.  I thought you may be interested in a bottom line of the responses that I received:

1. Emotional trauma – thirteen
2. Surgery – seven
3. Injury – six
4. Viral – three (Epstein-Barr Virus)
5. Genetics – three
6. Lyme disease – two (bacterial)
7. Cancer – two
8. Sjögren’s – one
9. Grand mal seizures – one
10. Post-drug abuse – one
11. Temporomandibular joint disorder – one

Some of these were in combination, such as genetics and trauma.  Some had an overwhelming combination of factors.  A couple had no responses, having been told that some people just have it and no one knows why.  That’s actually the truth.  No one really does know why fibro develops in some people and not others.  But they’re looking.

I’ve been looking at research studies (see library) and can see a really positive shift in the way researchers and physicians regard fibromyalgia.  In the 70s, the focus was on psychology – what’s wrong with these people thinking there’s something wrong with them?  It’s rare that this kind of ugly attitude comes out anymore in medical literature.  The focus is now on the physiological causes for fibromyalgia.  It is no longer generally considered a throwaway diagnosis.  This is what gives me hope.  I don’t think there’s going to be a breakthrough with a magic cure, and I’m always very suspicious of claims that I can’t find corroborating research on.  However, knowing that there is an effort gives me hope, if not for me but for future generations.

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More responses to yesterday’s question about what doctors have told us about possible causes for fibromyalgia have been coming in today: trauma and stress, lyme disease, multiple health issues, surgeries, cancer treatments, accidents, genetics, and more.  Quite a few mention a combination of factors.  These responses illustrate the biggest problem facing physicians and researchers who are studying fibromyalgia, namely diversity of experience.  After all, we are looking at physical, psychological, genetic, viral, bacterial, and other triggers. Triggers are not a cause for a condition like fibromyalgia ( like one of you very aptly pointed out).  No one knows what the actual cause is.

However, reading about your experiences and knowing my own experiences makes me wonder if there’s not one thing we all have in common: persistent pain.  I know that sounds obvious.  What I mean is, before any of us had fibromyalgia, we were all undergoing some sort of injury (physical or emotional) or had some sort of condition that caused lingering pain (some people mentioned arthritis or lupus, etc) or underwent some sort of surgery (hysterectomy seems pretty common when surgery can be pointed at as a trigger).  There have been quite a few recent studies where researchers have done imaging of the brains of fibro patient and healthy controls.  There are differences (see library or library by subject) in the structures of the brains of these two groups, and it has been theorized that persistent pain can actually reformat the brain, particularly in pain processing regions, reformatting which causes the imbalances of chemicals which ultimately makes the pain processing regions overreact (a very simplistic explanation).

Similarly, there is research that has shown that when children (who are still developing) are subjected to either physical or emotional trauma (newborns who undergo surgeries, children of neglect/abuse), their pain processing systems develop differently, and there is a strong possibility of them acquiring a chronic pain syndrome – with the proper trigger.

It’s a theory that can’t stand on its own.  After all, why don’t all people under similar circumstances develop fibromyalgia?  Genetics must play a role.  Unfortunately, I haven’t seen anything saying they can fix deformed pain processing systems in our brains. However, IF there is something to this theory and fibro and other chronic pain syndromes can be predicted, then it seems like they can be prevented.  It may be too late for me to ever feel any better, but I would love to know that another generation would be able to prevent ever developing fibro.