I would bet that most people with chronic Lyme disease have been diagnosed with Fibromyalgia at some point in their medical journey.What makes this diagnosis especially frustrating is that the diagnosis is just a catch all for a disease that causes “body pain”, but there is no known cause or treatment.
Well, that is not to say a doctor won’t prescribe pills – they will. But you usually get pain medication and anti-depressants (among others). To get a tiny band-aid to cover the multitude of symptoms that accompany chronic Lyme disease frequently puts people over the edge into total despair.
I recently came across yet another story of someone with chronic Lyme disease who was misdiagnosed with Fibromyalgia – Donna Gregory Burch.
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 shared the entire story on my blog – but last month, I was diagnosed with chronic Lyme disease.
I have many anecdotal stories, including my own, of people misdiagnosed with fibromyalgia, and hope that increased awareness of the symptom cross-over will help more people identify the underlying reason for incapacitating body pain.
It is amazing to me how many people drift away from suffering victims with the impression that somehow the symptoms are exaggerated, or worse yet completely made up. Who would choose to be sick and in such excruciating pain?
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.
My advice to people diagnosed with fibromyalgia is to keep looking. Hopefully it isn’t Lyme disease but you deserve to know. See the action steps Burch outlines on her blog here.
also see http://www.fmaware.org