Thankful It’s Only the Epstein-Barr Virus
Lately I’ve been stunned when people have said to me, “I’m so glad you figured out that you only have Epstein-Barr instead of fibromyalgia, because people with fibromyalgia are really in a lot of pain.” I’m conflicted about how to respond to this, because I was diagnosed with fibromyalgia by a number of medical practitioners for several years when I was in tremendous, constant pain, starting in 2012. Although I probably wouldn’t be diagnosed with fibromyalgia anymore, it’s still in my medical chart. I’m considered to be in recovery.
Frequently Asked Question: How Did I Recover from Fibromyalgia?
That leads to another frequent conversation that I have with the members of the DFW Fibromyalgia Support Group. “How did you recover?” they ask. First, let’s talk about what I had to recover from.
Precursors: Stressful Job and Cold All the Time
When I tripped over my open file drawer at work in April 2012, I became aware that I was dizzy all the time. It was an uncomfortable job, physically and emotionally. There was an air conditioner vent above my desk, streaming a constant blast of inescapable cold air. To combat it, I wore two and even three shirts at a time, thick socks, and a fleece jacket that I zipped all the way to my chin. I wanted to wear gloves but they interfered with my computer work. I was so cold, my shoulders and neck tightened so much that my massage therapist told me my shoulder muscles had become “woody.” She said there was nothing more she could do for me and suggested that I find a physical therapist. Meanwhile, my senior managers began disappointing everyone around them. My job morphed from leading a software development team to providing cover for my bosses and protecting my engineers from the fallout. With all the stress and disillusionment, it would have been a no-brainer to leave and get another job, but I was too energetically depleted to sell myself in an interview. My physical health was rapidly deteriorating, so I stuck it out.
Too Many Doctors to Count
When the company failed so miserably that they had to lay me off along with dozens of my colleagues, I used the time to start my journey back to physical health. I sought help from an orofacial pain specialist, a manual therapist, an otologist, and a team of physical therapists. There was also a slush pile of doctor names that didn’t make it onto my A-Team. For example, the orofacial doctor asked an orthopedist to evaluate an MRI of my cervical spine. My cold, numb hands became cause for concern, so the orthopedist did a nerve conduction study. He said, “Your carpal tunnel is healing nicely but there’s nothing in your MRI that would cause you any pain.” I felt vindicated when the orofacial doctor became enraged by this statement. Carpal tunnel syndrome was never on my list of problems, and he was able to point out numerous issues with the facet joints in my cervical spine.
Someone Said, “Fibromyalgia”
Next, the orofacial doctor sent me to a manual therapist. She got nervous when she discovered that my cervical joints alternated between hypomobile and hypermobile, meaning one joint was very stiff while the next joint was very loose. She wanted to switch to a different treatment plan, but first she needed to evaluate my pain tolerance level, so she did the 18 point fibromyalgia test. That test has been phased out since then, but at the time it was a standard diagnostic tool. Each point she tested was so painful, it sent me through the roof. “I can’t treat you,” she said. “I don’t know what to do with you.” Her test left bruises all over my body and created something I later referred to as an “all-over body throb.” She diagnosed me with fibromyalgia and referred me back to the orofacial specialist.
My Vertigo May Have Multiple Causes
Frustrated that no one could treat my pain, I decided to seek help with the vertigo instead. An otologist specializing in dizziness and balance issues gave me a full battery of tests over several days. His team found that my hearing was sharp but tinnitus was causing some symptoms of hearing loss. I wasn’t surprised by this. I acquired tinnitus while working in my favorite job of all time, gigging with an R&B band in the early 90’s. Let’s just say that hearing protection was the furthest from our minds. What was interesting though, was the discovery that I have a slight nystagmus, which the American Optometric Association defines as “a vision condition in which the eyes make repetitive, uncontrolled movements, often resulting in reduced depth perception and issues with balance and coordination.”
I had to wait 5 more years before I met an optometrist who noticed that my eyes converge when trying to focus on objects in motion, which might have created a false positive on the nystagmus test. For the time being, the otologist suggested that I get more sleep and less stress, as the nystagmus wasn’t treatable. In fact, it could have been caused by stress. He recommended that I start taking a magnesium supplement, which changed my life by reducing my overall pain level from excruciating to manageable.
I Changed My Approach
Although the orofacial pain specialist wanted to help me, we were getting nowhere, so I sought help from an osteopathic doctor. She’s the same one who put me through the Cymbalta debacle I wrote about, but that was the standard of care for fibromyalgia at the time. She referred me to a physical therapist who wrote in my chart that my trapezius muscles were “woody,” which was one of the diagnostic criteria for thoracic outlet syndrome, along with coldness, numbness, and tingling in the hands, as well as generalized neck and shoulder pain. In the worst cases, it can also cause dizziness. When we started the treatment program involving exercises, electrical stimulation, and dry needling, I thought I was on my way to victory over pain, and that I’d be back in my ashtanga yoga class in no time. But as the orofacial pain specialist said, “Discovering the root source of pain is like peeling an onion. As soon as you remove one layer of pain, the next layer emerges.” His statement foreshadowed my experience for the next several years.
First Several Layers of the Pain Onion
By the end of 2012, I was diagnosed with the following:
- Degeneration of the cervical facet joints
- Temporomandibular Joint Disorder (TMJ)
- Nocturnal bruxism & daytime teeth clenching
- Thoracic Outlet Syndrome
Fortunately, the dry needling treatment reduced my thoracic outlet syndrome to tightness of the shoulders, neck pain, frequent headaches, and occasional cold hands and tingling of the fingers. My dizziness persisted. By comparison, this was a tremendous relief. It is now 2018 and I’m still hoping for the day when I can rejoin Carlos Pasos’ ashtanga classes. He is the best power yoga teacher I’ve encountered, and generally one of the best yoga teachers I’ve ever studied under. Having to quit his weekly guidance is just one of the many losses I’ve endured since 2012.
Many Medical Conversations Later
When you retrace my steps from the beginning, you can see that there was a lot of diagnostic guesswork. Doctors are really just applying medical science to the treatment of their patients, and no two are alike. That’s why it’s called medical art. After going to so many doctors and having so many conversations about my specific situation, I was able to gather enough information to start doing my own online research. This empowered me with the knowledge I needed to make major life changes and to seek increasingly targeted, successful medical care.
Thankful, But It’s Not Over Yet
To my friends who’re glad I “only” have Epstein-Barr: me too! It’s been a long road getting here, and Epstein-Barr is no picnic either. I’m thankful for friends who don’t want to see me in pain, as much as I’m grateful to have come this far.