Fibromyalgia is a Little Bitch

When I was finally diagnosed with fibromyalgia, it felt like I’d come to the end of a long, winding, exhausting road. It had taken me years to get my diagnosis, during which I’d seen multiple primary care physicians, gotten multiple referrals, had multiple lab tests, and cried multiple tears. I’d been misdiagnosed with a variety of illnesses along the way – everything from depression to Lyme disease. I’d been advised to go gluten-free, carb-free, meat-free, sugar-free, and to try raw foods. To drink more water. To walk more. One doctor told me my issue was stress, and to take up tai chi, align my chakras, and “chill.”

When I say my diagnosis came at the end of a long road, I don’t want you to get the wrong idea. Because actually, my diagnosis was not so much the end of a road but a pit stop. The end of something implies closure, a solution to a problem. As in illness identified, illness confirmed, prescription given, patient cured.

I wish.

There is no cure for fibromyalgia. What doctors do is try to mitigate symptoms, but for many people with fibro, the old stand-bys are hit-and-miss. Doctors don’t yet know what causes it. But what they do know is that it favors women over men by a 9-1 margin. And I have my own opinions why.

It was not that long ago that fibromyalgia sufferers were told to buck up and get over themselves because their problems were all in their head. Fibromyalgia is characterized by widespread pain, fatigue, sleep problems, memory problems, and mood issues – the kinds of symptoms that a hundred years ago would have been diagnosed as “female hysteria.” Even today, studies have shown that there are still some physicians who lack current knowledge of the fibromyalgia diagnostic criteria or who simply don’t believe in it. This leads to diagnosis delays and misdiagnoses, and to patients – again mostly women – giving up on the medical establishment and suffering in silence.

But what brings on fibromyalgia? In some cases, such as my own, it’s brought on by stress and/or trauma – either short-term, like an accident or illness – or long-term, like an abusive marriage and divorce. However, it can also seem to come out of nowhere, with symptoms beginning spontaneously. It can coexist with other conditions like lupus or rheumatoid arthritis. Doctors are looking at the possibility of fibro stemming from how a person’s central nervous system processes pain. And scientists are researching whether there’s a genetic reason that predisposes people with fibromyalgia to react strongly to nerve stimuli that most people would not even notice.

Neurologists have ideas on why 90 percent of fibro sufferers are women, as well. Because the majority of women are diagnosed during their reproductive years, it is believed estrogen may play a role. Some women say their pain is worse just before and during their periods, which is when estrogen fluctuates - plummeting right before menstruation and rising again when it’s over.

And it could be the case that just as many men suffer from fibromyalgia as women, but their illnesses are simply underreported. Men can be less likely to mention discomfort and less likely to report their symptoms to their doctor. It is also suggested that the male body is quicker at releasing endorphins – the substance that helps the brain produce its own natural pain killers. Furthermore, some scientists theorize that the increased testosterone in the male body protects men from experiencing fibromyalgia pain the way women do.

But here’s my thought. Now I’m no doctor, so this is just my opinion. But the things doctors say may cause (or at least trigger) fibromyalgia – stress, trauma, chronic PTSD – these are things women know intimately. Women are twice as likely to suffer from severe stress and anxiety as men, according to a 2016 study published in The Journal of Brain & Behavior. And we’re more likely to experience physical and emotional symptoms from it.

Think about it. Most women wear many hats – wage-earner, caregiver, homemaker. According to the United Nations, women do nearly three times as much unpaid domestic work as men. Plus, there’s an expectation for women to “have it all.” Add to that the emotional labor that many women take on. And the guilt. And the fear. It’s exhausting.

So what do we do?

First, and I cannot repeat this enough, we have to be forceful advocates for our own health. If you feel your doctor isn’t taking your symptoms seriously, or you feel they’re not really listening, speak up. Forget polite - be loud if you have to. Find another doctor if you have to (if you can). And don’t give up. Be prepared to ask for more testing, for second opinions. And if your physician isn’t up to date on current diagnostic criteria for diseases such as fibromyalgia or chronic fatigue syndrome, perhaps it’s time to ask them why the hell they aren’t.

Secondly, I believe women have to be forceful advocates and allies of each other. It’s time to stop putting so much pressure on ourselves and each other. Nobody can have it all … or do it all. And nobody should have to. Respect – and recognition – of the unpaid work women do is long overdue. In my opinion, a stay-at-home mother who spends 20 years raising her children deserves health insurance, retirement benefits and social security as much as any professional. And working women need access to affordable childcare and realistic maternity leave. It goes without saying that men deserve the same.

Finally, we MUST take care of ourselves. As irritating as it was at the time, the doctor who suggested I take up yoga, tai chi and chilling the heck out was not totally wrong. While in my case prescription medication was definitely in order (along with, you know, the correct diagnosis), there is a spiritual side to our health that we cannot ignore. For me that means meditating, hot baths with Epsom salts, the occasional massage, and avoiding the vices of my youth (alcohol, fast food, sugar). For you that might mean something altogether different. But whatever it is, I implore you to give yourself the time and the permission to make it a priority.

Like many others, I know the road leading to my diagnosis of fibromyalgia was a long, difficult one. Now, I’m on a path toward healing. It isn’t always straightforward. But if I’ve learned anything, it’s this: fibromyalgia is a little bitch, but it’s not who I am. It’s just a thing about me that makes my journey difficult at times (kind of like driving a car with two flat tires and a broken windshield). Nevertheless, I will persist.

Nothing’s going to stop me.