By Donna Gregory Burch
I’d like to preface this column by saying I believe fibromyalgia is a very real condition. It exists, and it’s life altering.
With that being said, I think those of us with fibromyalgia should question our diagnosis. I’ve been reading Dr. David Brady’s new book, “The Fibro Fix.” In it, he references a study in the journal Rheumatology indicating only 34 percent of patients initially diagnosed with or suspected of having fibromyalgia actually have fibromyalgia. That means a staggering 66 percent of us may have been misdiagnosed!
Let that sink in for a moment: Two-thirds of us may be living with undiagnosed medical conditions that could potentially be treated!
My own journey is a perfect example of why we shouldn’t blindly accept our diagnoses. I have been misdiagnosed every step of the way.
My first fibromyalgia symptom was extreme fatigue. I was diagnosed with vitamin D deficiency and given a prescription to boost my levels. Around the same time, I was having extreme pain in my right hand, which was diagnosed as carpal tunnel syndrome based on symptoms.
Months passed, and I was still exhausted. Looking for answers, I read a list of hypothyroidism symptoms online, and it mirrored what I was feeling. Thyroid testing showed my levels were in the high-normal range, but my primary-care doctor diagnosed me with hypothyroidism based on symptoms and gave me a Synthroid prescription.
More months passed, and my thyroid numbers went down, but I didn’t feel any better. The pain in my hand had migrated up my arm and gotten worse, so I headed to another orthopedist for a second opinion. This one actually ordered testing, which found I didn’t have carpal tunnel at all!
The orthopedist didn’t know what was causing my pain, so I was referred to a rheumatologist. All of my blood work came back normal, and I was diagnosed with fibromyalgia.
During this same timeframe, I was also diagnosed with overactive bladder – again, by a doctor who diagnosed me based on symptoms and not an actual diagnostic test.
When I finally had a test, it showed I didn’t have overactive bladder. My test result should have been a clue to my urologist that something else was wrong, but he kept treating symptoms without looking for an underlying cause.
Last year, I began to feel burning in my feet. I went to a podiatrist who spent 30 seconds looking at my feet and proclaimed I had plantar fasciitis. Over the next six months, I had three sets of steroid shots in both feet, three laser treatments and several weeks of physical therapy. In the end, I sought a second and third opinion from two more podiatrists. These podiatrists ordered x-rays, an MRI and nerve conduction testing. The verdict? I didn’t have plantar fasciitis! I was diagnosed with neuropathy and referred to a neurologist.
The podiatrists wanted the neurologist to do a thorough blood workup to see if he could identify the underlying cause for my neuropathy. The neurologist glanced at my previous lab results, saw that I didn’t have diabetes and hadn’t had chemotherapy, and diagnosed me with idiopathic neuropathy – meaning the cause is unknown. It was just another fibromyalgia symptom, he said.
When I asked for the testing recommended by my podiatrists, the neurologist said it was too expensive and refused to order the tests. Utterly frustrated, I walked out of his office in tears.
Last May, I was diagnosed with chronic Lyme disease and other tick-borne coinfections. Turns out, all of these little clues that my doctors had dismissed for years now fit together in a perfect puzzle. Pain, fatigue and brain fog are primary symptoms of Lyme (as well as a host of other conditions). Lyme can also cause symptoms that mimic overactive bladder.
And my burning feet? Oh, that’s one of the main symptoms of bartonella, a common tick-borne infection. My three podiatrists should’ve asked more questions when I told them the burning was confined to the soles of my feet. Neuropathy typically causes numbness, tingling and pain in the entire foot.
I have spent the past six years shuffling from doctor to doctor. How did they get it so wrong? I don’t have hypothyroidism, plantar fasciitis, overactive bladder or neuropathy!
Do I even have fibromyalgia, or is that a mistake as well? Lyme is commonly misdiagnosed as fibromyalgia, but it is just one suspect that should be ruled out. Dr. Brady lists more in his book: myofascial pain syndrome, disc degeneration, tendonitis, disc bulges, osteoarthritis, mitochondrial dysfunction, nutritional deficiencies, thyroid conditions, chemical/food sensitivities, medication side effects, rheumatoid arthritis, lupus, multiple sclerosis, cancer, diabetes and the list goes on.
We’re told fibromyalgia is a diagnosis of exclusion, meaning our doctors are supposed to rule out all other causes before coming to the conclusion of fibromyalgia.
But did that happen in your case? Were all of these alternative causes (and many others not listed above) ruled out via proper testing and clinical deduction?
What if you fall into the 66 percent who are misdiagnosed with fibromyalgia? What if your symptoms are treatable, and you could get your life back?
This is why we should never stop looking for the underlying causes of our symptoms. We have to be our greatest advocate, ensuring that our doctors tick off all of the alternatives before labeling us with fibromyalgia. Our health literally depends on it.
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.