By Donna Gregory Burch
Since I’ve been reporting on fibromyalgia, I’ve had the opportunity to interview some awesome researchers. Even though it feels like a cure for fibromyalgia is far away, there are some incredibly committed, talented researchers out there who are working so hard to help us. I think some of them want the answers just as much as we do, and their perseverance and dedication is paying off.
Nearly every month there’s another study hinting at the mechanisms causing fibromyalgia symptoms, or there’s more progress being made in developing new treatments. Reading about these breakthroughs is always exciting because it means fibromyalgia is gaining legitimacy, and we are slowly – albeit very, very slowly – moving toward a potential cure.
But for every one of those exciting headlines, there are others that just make me shake my head in frustration. Here are a few recent examples:
- “Fibromyalgia symptoms can include breast pain”
- “Female fibromyalgia patients experience sexual dysfunction and mood, anxiety disorders, according to study”
- “Fibromyalgia sufferers have difficulty maintaining continuous sleep, study says”
- “Fibromyalgia disability status linked to severe symptoms, higher medication use and physically demanding jobs”
- “[Fibromyalgia is] worse than chronic pain alone, but exercise helps”
Let me preface the point I’m getting ready to make by saying this: On the surface, any reputable research into fibromyalgia is probably a good thing. Every study is another tick that we can make on our tally to prove fibromyalgia is real and needs to be taken seriously. It brings greater awareness to our cause.
BUT … could we please stop researching the obvious? Looking at the bulleted list above, how did any of those studies (and many others I’ve read over the years) get us any closer to a cure? How much time and money was spent on these studies to tell us things we already know?
Ask any woman with fibromyalgia – there are millions of us! – if her boobs hurt, and she will tell you, “Yes, and everything else, too!”
Ask anyone with fibromyalgia if they want to have sex, and most will likely say something like, “My legs hurt so bad, I want to cut them off, and I’m too exhausted to even take a shower. Sex is the last thing on my mind!”
Of course some of us with fibromyalgia have mood and anxiety disorders! When you feel like crud all the time, it doesn’t exactly inspire joy and happiness.
Ask anyone with fibromyalgia, “How’s your sleep?” and they will probably say, “Sleep? What’s that?” (To be fair, this is probably the most useful of the studies mentioned above, but other studies have confirmed sleep difficulties in fibro patients, so why did we need yet another one?)
Many fibromyalgia patients on disability would love to go back to work. Do you think they quit their jobs because they thought it would be fun to live on zero income for two years while the federal government took its time to decide if they qualified for disability or not? No, they stopped working because their symptoms were too severe to continue!
Ask anyone with fibromyalgia about their symptoms, and they’ll rattle off a five-minute (at least) list – pain being ONE of them. Yes, chronic pain is bad, but of course chronic pain plus 20 other debilitating symptoms is worse than chronic pain alone!
Why do some researchers continue to ask questions with obvious answers? And if an answer isn’t obvious to a given researcher, just ask a fibromyalgia sufferer. We’re more than happy to clue you in on our day-to-day habits and challenges!
So here is my message to every fibromyalgia researcher out there: Please don’t waste time and money confirming what millions of fibro sufferers already know from personal experience! Use your resources wisely because we are counting on you to help us!
I daresay most fibromyalgia patients just want researchers to focus their efforts on two questions:
- What causes fibromyalgia?
- And more importantly, how do I get rid of it?
If your research study doesn’t answer one of those two questions, please do us a favor and find one that does.
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.