Fibromyalgia or Lyme Disease?

Here’s my truth…after going through what I went through, any time that I hear someone say they have fibromyalgia, I cringe a little inside. I feel the same way about numerous other diagnoses as well, including chronic fatigue syndrome and multiple sclerosis, but my story involves fibromyalgia. I firmly believe this was my first misdiagnosis.

The prevalence of Lyme disease being misdiagnosed as fibromyalgia is what I would call staggering. One report found that up to 43% of Lyme patients were originally diagnosed with fibromyalgia. (The two other most common diagnoses were a psychiatric disorder (52%) and chronic fatigue syndrome (42%)). The real tragedy of these misdiagnoses is that while we walk around thinking we have an answer, the Lyme bacteria is spreading and corkscrewing into organs, muscles and bones throughout your body. The longer a Lyme patient goes undiagnosed, the further the bacteria travels, setting up shop in multiple body systems. That’s what happened to me.

My experience with fibromyalgia

When I was nineteen years old I was diagnosed with fibromyalgia. At the time, I was simply relieved to have a diagnosis at all. To have a name for the pain and exhaustion I’d been experiencing felt liberating. Unfortunately, this diagnosis was a huge disservice and really threw my life into one long tailspin. While I will never truly know if it was fibromyalgia or Lyme disease, my bet is on the latter.

The most common symptoms of fibromyalgia are widespread pain and fatigue. Although I had been experiencing fatigue since I was a young child, the ‘fibromyalgia’ pain began in my late teens. For me, the majority of my pain and discomfort was in my back and up into my neck. When I was having what everyone refers to as a fibromyalgia flare-up, the pain would radiate out into my extremities. But, it always radiated from my back and neck.

The strangest part about this fibromyalgia pain and fatigue was how it would come and go. For a day or maybe two, I would feel nearly crippled by the pain and then it would simply go away. I could have months or even years with no issues at all, then inexplicably, it would come raging back and grip me in its talons. Of course, now I know that this is fairly common for Lyme symptoms. I had many other symptoms, including dizziness, that would similarly come and go over the years that I went undiagnosed.

One other frustrating thing about my fibromyalgia misdiagnosis was that there was no cure or course of treatment for it. At least at the time of my diagnosis, that was true. (I do believe there are some medicines they can prescribe now, but nothing was offered to me in the late 90’s.) Basically, I was told how to manage my symptoms: no sugar, plenty of rest, avoid stress, etc., etc. I simply lived with, and put up with, this fatigue and widespread pain for nearly twenty years. That was my normal.

So what is fibromyalgia pain like? It’s difficult to describe but here goes…

‘Fibromyalgia’ pain

It has been a while now since I experienced this pain so I’m reaching deep into my memory bank. The pain would began as an achy, arthritic-like pain. But, unlike arthritis, the pain didn’t affect my joints. Not really. Another description would be akin to the aching you feel when you have a bad fever. Over the course of an hour or two, it would transition into an evil menace gripping me in its claws. Imagine a full body cramp that was charged with electricity. Zapping, stinging, squeezing, burning. My muscles would feel like electrified ropes being wrung and wrung until they were so taut and buzzing with energy I thought they would snap. 

That pain would then seize up, leaving me feeling like I couldn’t move. Pain so intrusive my brain felt empty. That was the only thing I could register. I remember on more than one occasion needing assistance to undress. Particularly raising my arms over my head. The motion alone would intensify the pain to a snapping point. Similarly, I would need help lying down in bed. Every muscle became so stiff that I couldn’t use those muscles for even the most mundane of movements. My only recourse was to get into a lying down position as quickly and painlessly as possible, then wait for it to pass. Once I was in bed, the fatigue would drag me under until the ‘flare-up’ passed. That’s what fibromyalgia pain feels like.

Diagnosis

I believe it was my physical therapist who diagnosed me with fibromyalgia. (I had been going to physical therapy for my back pain for months with very little improvement. In fact, some of my symptoms were worsening.) So, my recollection of the diagnostics for fibromyalgia involved a short questionnaire about the extent of my pain, including how many areas of my body I experienced pain *(WPI) and how severe that pain was *(SSS).  Then, I was given the 11 point fibromyalgia diagnostic test. This consisted of pushing on specific, known trigger points to test for pain in those areas. Comprehensively, in order to test positive for fibromyalgia, a patient had to experience pain in 7 of the 11 points. I had pain in all 11 and was thus diagnosed with fibromyalgia.

It is theorized, or so I was told nearly thirty years ago, that fibromyalgia is brought on by a traumatic experience. The traumatic experience my doctor latched onto as the cause was a car accident. In retrospect, I know that I was experiencing these symptoms before said car accident. However, I was so desperate for an answer to this pain that I accepted fibromyalgia with open arms. In my defense, I was also quite young and didn’t even consider questioning my doctor.

So, what’s the takeaway here?

My hope is that maybe, if you’ve been diagnosed with fibromyalgia, this post will encourage you to keep looking. There is at least a possibility that you have Lyme disease, and if so, there’s a course of treatment to help you get better. It is possible to live without this pain and fatigue. I wish I had known much earlier that I had Lyme disease, not fibromyalgia.

I am not telling you that you have Lyme disease. All I can do is share with you my experience as a source of hope, recognition or possibly a light into the darkness. My battle with Lyme disease, and frankly my life leading up to that diagnosis, would have been much easier and not taken quite so long (or cost as much money) had I been diagnosed twenty years earlier.

I want to reiterate that I am not a doctor, nor do I spend a lot of time researching. I am a writer and I’m passionate about helping others to feel less alone in their battle against Lyme disease. I’m not here to diagnose you, I’m here to share my experience. Maybe yours is similar and this post helps you to start searching in the right direction. 

*WPI –  Widespread Pain Index

*SSS – Symptom Severity Scale