By Donna Gregory Burch
Earlier this week, there was a woman who unsubscribed from my Facebook group because she said members were posting too much information "with zero science to back anything up." It's a complaint I've heard before, and I do understand her concern. In a perfect world, we would have a smorgasbord of research-approved treatments for fibromyalgia, some of them would actually work and we'd all get better.
But that's not reality.
The reality is we have three drugs approved by the U.S. Food and Drug Administration for fibromyalgia – Lyrica, Cymbalta and Savella. None of them work very well, and all of them sometimes cause nasty side effects in certain patients. The best performer of the three, Cymbalta, only reduces pain by 50 percent in about 35 percent of patients, based on clinical trial data. It's rare that a patient gets 100 percent relief.
Then, there is the lifestyle-based research, most of which has focused on exercise. Studies indicate exercise actually outperforms all of the FDA-approved drugs mentioned above, but the problem is few of us – myself included – are able to exercise because it usually causes more pain and fatigue.
So, as far as research-proven treatments go, we're left largely with drugs that usually don't work and physical activity that we're not capable of performing.
Yes, it would be nice if we had lots of scientifically-proven treatments, but the truth is fibromyalgia research is really in its infancy. We don't even understand what causes fibromyalgia much less how to properly treat it.
And frankly, given the current state of our medical and research communities, we'll likely never have lots of treatments validated by science. The reason for this is mainly financial. Big pharma conducts most of the large clinical trials. They're the only ones wealthy enough to do so, and they're only doing it because they know there's going to be a massive payoff when they bring the next blockbuster drug to market. (In 2014, for example, Lyrica made $5 billion in revenues for pharmaceutical giant Pfizer.)
There may be lots of treatments such as certain lifestyle changes or supplements that would be beneficial to fibromyalgia, but we may never know about them because they're not financially lucrative.
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So, what does that mean for us as fibromyalgia patients? It means sometimes we end up becoming our own guinea pigs.
When I was first diagnosed with fibromyalgia, I spent a lot of time online reading the research and looking for solutions. It took about a year before I realized the conventional medical system was not going to be able to help me and that I would have to find answers on my own.
And that's what I've done by running my own one-person research trials on various treatments. If I wait for the research to confirm whether a certain treatment works or not, I will never get better. So, it falls to me to seek out solutions, and sometimes – most of the time, in fact – that means trying treatments that aren't supported by large, big pharma-funded clinical research trials.
(Obviously, I avoid highly experimental treatments or those that might be dangerous. I use common sense and consult with my doctors when appropriate. In no way am I encouraging risk-taking or not working with a physician.)
Low-dose naltrexone (LDN) is one of my discoveries. It's only been tested for fibromyalgia in two small Stanford University trials, but statistically it outperforms all of the FDA-approved drugs mentioned above. Most doctors have never heard of it, but it's slowly developing a cult following within the fibro community. I've been taking LDN off and on for more than two years now, and it's the only prescription drug that's ever lessened my pain. If I had waited for my doctors to discover LDN, I'd probably be bedbound by now from chronic pain, but I'm not because I took an active role in my healthcare.
Another go-to treatment of mine is the Quell pain relief device. It's backed by a trial of chronic pain sufferers, but there hasn't been a trial specific to fibromyalgia. This is another situation where had I waited for the data, I probably never would have tried the Quell. But without a doubt, my Quell device is the best thing I've ever used for chronic pain. I wear it every single day, and it consistently knocks my pain level down by a couple of points.
I'm also a fan of CBD oil. Again, there have been no fibromyalgia-related studies, but I've found it useful for relieving pain, and so have many others in the fibro community.
I give these examples to illustrate my overall point: If you're relying exclusively on treatments backed by science, then you are probably missing out on some tools that could be helpful in managing your fibromyalgia symptoms. Maybe it's time to be a little more open-minded and consider that science doesn't currently have all the answers and probably never will.
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. 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.