You’ve been given a fibromyalgia diagnosis. Now what?
I know you’ve felt like crap for months – maybe even years. You’ve probably shuffled from doctor-to-doctor, trying to figure out why you’re in pain all the time and can barely pull yourself out of bed. You may even be relieved that you finally have a diagnosis. I know I was when I was diagnosed in 2014.
But looking back at my own fibromyalgia journey, one quote comes to mind again and again: I wish I knew then what I know now. So, today I’m sharing what I wish someone had told me when I was first diagnosed. I hope it lessens someone else’s struggle.
Tip #1 Don’t blindly accept your diagnosis
My first advice to anyone newly diagnosed with fibromyalgia is to question your diagnosis. Fibro is a diagnosis of exclusion, meaning all other possible medical conditions have to be ruled out by your physician. Are you sure he or she did that?
Too often physicians label someone with fibromyalgia because it’s the path of least resistance. They don’t know what’s wrong with you, and nothing obvious is showing up on your lab work, so it must be fibromyalgia, right?
But I would encourage you not to blindly accept your diagnosis. Here’s why: A Canadian study found that up to two-thirds of fibromyalgia patients have been misdiagnosed.
The implications of that are huge. That means millions of fibromyalgia sufferers are living with undiagnosed conditions, some of which are probably treatable!
Tip #2 Find a great doctor
I know some people live in localities where medical options are limited, but if you don’t fall into that category, please do not keep going to a doctor who disrespects you or isn’t capable or willing to help you.
I have heard so many physician horror stories over the years from my fellow fibro warriors – doctors who told them fibromyalgia doesn’t exist, who said it was all in their head, who overprescribed medications to the point of putting them in a drugged stupor, who told them they were just getting old or needed to lose weight.
If your physician has said or done any of the above things, then please find a new doctor (if you’re able)! Do not allow yourself to be abused! Do not allow your physician to invalidate your illness!
You are not making it up, and it is not all in your head. Never doubt that! Seek out a physician who believes in fibromyalgia, is highly knowledgeable about the complexities of this condition and is familiar with the latest research.
I will warn you: It’s hard to find a good fibro doctor. Expect to go from doctor-to-doctor for a while before you find the right one, but trust me, having the right doctor is worth the effort!
Tip #3 The “right doctor” probably isn’t your primary-care physician or rheumatologist
Medscape’s 2016 Physician Compensation Report found that doctors average around 15 minutes per patient visit. That’s barely long enough for the patient to rattle off their complaints and for the doctor to write a prescription to try to fix said complaints. That works if you’ve got something simple like the flu, but if you’re living with a complicated chronic illness like fibromyalgia, it’s just not going to cut it.
So, what’s the solution? Seek out medical providers who practice healthcare differently. I spent years going to various primary-care doctors and specialists. None of these doctors held the answers to helping me feel better from fibro. You know why? Because they all just looked at a piece of my health issues.
The only success I’ve ever had at reducing my symptoms has been when I worked with doctors who practice functional medicine. Functional medicine doctors take a more systematic, whole-body approach to healthcare. They understand that symptoms do not happen in a vacuum. Our chronic pain, digestive troubles, migraines, exhaustion and the myriad of other fibro symptoms we experience are all linked and should be treated as such.
In functional medicine, the goal is to restore overall health, not just treat symptoms with the latest pharmaceuticals. Functional medicine practitioners tend to utilize many more tools, such as lifestyle modifications, natural supplements and alternative therapies, than traditional doctors. If I was diagnosed today, I would go directly to the Institute of Functional Medicine website and try to find a local functional medicine doctor versed in fibromyalgia.
I know other fibro sufferers who have had good results with naturopaths, osteopathic doctors and even chiropractors. These kinds of medical providers tend to be more open-minded. That’s important because there is no magic pill for fibromyalgia (see tip #4), and you need a physician who isn’t afraid to experiment with emerging treatments (see tip #8).
I’m not implying all traditional physicians are inept and slaves to the pharmaceutical industry, but I am saying you have a better chance of improving your outcome if you work with a doctor who takes a comprehensive, holistic approach to treatment.
Tip #4 There is no magic pill
In the year after my diagnosis, I tried several of the usual fibro drugs, but none of them helped. They either didn’t work or turned me into a zombie.
When I actually looked at the research trial results of the three drugs approved by the U.S. Food and Drug Administration for fibromyalgia – Cymbalta, Lyrica and Savella – it was quickly obvious why they didn’t work for me. The truth is they don’t work very well for most fibro sufferers. For example, only about one-third of patients taking Cymbalta report at least a 50 percent reduction in pain, and that’s the most effective drug of the three!
These drugs do help some fibromyalgia patients, and I don’t discourage anyone from trying them, but for most of us there is no magic pill.
Tip #5 It’s going to take more than drugs to feel better
While researching, I occasionally run across so-called success stories featuring people who have either recovered completely from fibromyalgia or are successfully minimizing their symptoms. While reading their stories, I’ve discovered a pattern: Every single one of them used multiple modalities to feel better.
Dietary changes are almost always mentioned. They gave up sugar and processed foods and eat a whole foods-based diet. Many of them went dairy, soy and gluten-free.
They majorly overhauled their lifestyle. They meditate or do yoga or tai chi to calm their overactive nervous system. They do gentle walking or aquatic exercise to stay active. They regularly spend time outdoors. They learn to pace themselves. They’ve become experts at stress management.
Sometimes they used prescription drugs, but those were only a small piece of their overall treatment plan. In short, they took a more natural, lifestyle-based approach to treatment.
Tip #6 Do your own research
We all know doctors are extremely busy, and most of them don’t have time to stay up-to-date on the latest research and treatments for all of the conditions they encounter in any given day. So, please don’t rely exclusively on them for your healing!
Here’s the harsh reality: The minute you walk out of that examination room, they’re onto the next patient. They probably won’t think about you again until they see your face at the next appointment.
So, it falls to you to become your best health advocate. Get on the Internet and do your own research! Seek out information about new treatments or therapies, and take those to your next doctor’s appointment for discussion. Be proactive in the management of your symptoms by making those important lifestyle changes mentioned in tip #5.
Become an expert in your chronic health condition! I learned early on that I was never going to feel better if I exclusively relied on my doctors for answers. They just don’t have the time or attention span for that.
Tip #7 Connect with others with fibromyalgia
Fibro can be a lonely, miserable condition. Friends and loved ones may commiserate with your pain, but the truth is no one ever truly gets fibromyalgia until they get it themselves.
But there’s one group of people who will always understand your suffering: your fellow fibro warriors! Make an effort to connect with others who have fibromyalgia through local and/or online support groups.
You will learn so much from your fellow warriors! Many of them have been in the trenches with fibromyalgia for decades, and they know better than anyone what works to knock down the pain or how to shorten a flare of symptoms. They also understand all of the emotional stuff that comes with living with an unpredictable, life-sucking chronic illness.
Bonus tip: Local support groups are a great source for finding the best fibro doctor in your community.
Tip #8 Explore emerging treatments
Early on in my diagnosis, I was much more rigid about only using research-proven treatments. However, it didn’t take me long to realize that fibromyalgia research is in its infancy, and there is no one-size-fits-all treatment approach. One of fibro’s great mysteries is that what works for one of us doesn’t necessarily work for the rest of us.
Because of that, I’ve become much more open-minded about treatment. In some ways, I’ve become my own guinea pig. I’m not afraid to try new treatments – after careful research and talking with my doctor, of course! Some of the most effective tools in my current fibro-fighting arsenal would be considered fringe treatments, but they work for me, and that’s what matters.
I learn a ton from my fellow fibro warriors (see tip #7). They are an invaluable resource, and they’re often years ahead of researchers when it comes to natural or alternative treatments.
Tip #9 It’s up to you
A few days ago, someone in an online fibro support group said pain was her friend. Maybe I’m not spiritually evolved enough yet because I have no desire to get friendly with my pain.
But I do see chronic pain as a great teacher. In the wake of your diagnosis, you will learn so much about yourself, your loved ones and the medical community. Your strength will be tested – sometimes daily – and it will be up to you whether you handle that struggle with grace or despair.
Fibromyalgia will change you as a person. The choice is yours whether it’s for the better or worse, but you always have choice. Remember that.
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. 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.