I never completely accepted my fibromyalgia diagnosis. It didn’t make sense to me that one day my body just decided to go haywire for no reason. I’ve always believed there must be an underlying cause for my fibromyalgia symptoms. Pain is a signal that something is wrong in the body. So is fatigue and the compendium of other symptoms associated with fibromyalgia.
Once my doctors labeled me with fibromyalgia, they stopped looking for the causes of my symptoms. They blamed everything on “just fibro.”
But ever since my diagnosis, I’ve had this nagging question in my mind: What if it isn’t “just fibro”?
Well, sometimes answers come in unexpected ways. I won’t get into the details here – I’ve sharedthe entire story on my blog – but last month, I was diagnosed with chronic Lyme disease.
Lyme is a bacterial infection that’s transmitted through the bite of certain ticks. There’s some evidence it can also be passed via mosquitoes, fleas, biting flies and lice (and some think it can be sexually transmitted as well).
Early Lyme symptoms mimic the flu – fever, chills, fatigue, headache and body aches. About 50 percent of people also get a bullseye rash around the site of the tick bite.
But early Lyme can be asymptomatic. Less than half of people remember having a rash or tick bite.
Because symptoms vary, Lyme can go undetected for years. Over time, “untreated Lyme can result in neurological disorders, crippling arthritis, blindness, deafness, psychiatric or psychological disorders, or death,” reads “Lyme Disease and Associated Diseases: The Basics,” a pamphlet published by the Lyme Disease Association of Southeastern Pennsylvania.
The most common symptoms of chronic Lyme infection are extreme fatigue, joint and muscle pain, numbness or tingling (particularly in the extremities), psychological disturbances, stomach problems, vision/hearing problems … Do any of these sound familiar? If you have fibromyalgia, I bet they do!
Reading a list of Lyme symptoms, it’s easy to see how Lyme and fibromyalgia could be confused for one another. There’s a lot of overlap in symptoms! In fact, Lyme is nicknamed the “great imitator” because it’s frequently misdiagnosed as fibromyalgia, chronic fatigue syndrome, multiple sclerosis and other conditions.
My doctor explained that I still have fibromyalgia, but my symptoms may be caused by untreated Lyme disease. He says sometimes fibro symptoms will disappear after a patient is treated for Lyme and other tick-borne infections. (I’m hoping I fall into that category!)
Driving home from my diagnosis last month, I had a realization: If I’ve been living with undiagnosed Lyme disease masquerading as “just fibro” for all these years, how many of my fellow fibromyalgia warriors are unknowingly doing the same? I knew I had to use my story to help educate others, so they can get the proper testing and the right treatment if necessary.
“Diseases such as fibromyalgia and chronic fatigue and multiple sclerosis and ALS and Parkinson’s …all of those are just named sets of symptoms, and we have to not accept diagnoses like that without looking for an underlying cause,” says Marilyn Williams from the Lyme Disease Association of Delmarva. “There are multiple things that can be causing that set of symptoms, but what I teach people is don’t accept those diagnoses anymore. Don’t accept that diagnosis of fibromyalgia without digging deeper.”
Williams has learned that lesson firsthand. She lived with fibromyalgia symptoms for 16 years before she was diagnosed with Lyme and other tick-borne diseases (TBD) in 2007. She describes her symptoms as the typical ones we all associate with fibro: fatigue, muscle and joint pain, headaches and allodynia, but she also had some less common ones, like numbness in the hands and feet, irregular heartbeat and muscle twitches.
Williams now educates others on the prevalence of TBD.
So, what actions should you take if you think you might have been exposed to TBD? The following steps should help to get you started.