Fibromyalgia Awareness Day 2012

To borrow from a languishing internet meme: my fibromyalgia, let me show you it.

Seriously, though, today is National Fibromyalgia Awareness Day here in the United States. But just saying it doesn’t help you be aware of it in any significant way, so let me tell you my story, so that you’ll have at least one person’s experiences in your head.

First, a note: fibro has this lingering stigma of being a made-up condition. That’s not what all doctors think – and in particular, the rheumatology community acknowledges it as A Thing That Exists. It’s just been hard to understand, particularly since it depends on the subjective assessment of pain.

Okay, moving on.

For me, the early signs probably emerged during my bout with Valley Fever, back in 2005. I’d had my share of winter viral infections as a kid, and assumed it was just influenza – fever, chills, body aches – until, a few weeks into it, pretty much every inch of my skin itched. Happily, the student health nurse I saw recognized it immediately as an abnormal presentation of Valley Fever: after the initial fight, that looks like the flu, my body mounted an allergic response to the fungus. This was about halfway through my PhD, and so I just rested as best I could, got back to work and life as quickly as possible, and moved on.

That’s probably when I started to feel tired all of the time, though. The feeling that I just wasn’t rested became bad enough a year or two later that I had the doctors check my blood sugar (I have a high risk of diabetes on both sides of my family) and other general health markers. My friends wrote it off to stress; they assured me that when I had finished my PhD, I’d feel better. The stress probably also caused me to feel sick – fever, congestion, aches, etc. – about once a month for the last two years of my doctoral work. (A psychologist I was seeing at the time, though, wondered if I might have chronic fatigue syndrome.)

Fast forward to the summer of 2011: I had a sudden onset fever and just felt horrific. By phone, my doctor told me to take a certain amount of Advil, assured me that it was just a virus and I’d feel better in a couple of days. I didn’t. They did bloodwork. Turns out I had parvovirus – and my body’s response was so intense that I got a false positive for mono! That’s when I started to really feel tired all of the time, and when I realized that I’d been getting more frequent migraines that spring, and my eyes seemed to be bothered by light more than they used to. The parvo was almost certainly the straw that broke the camel’s back, so to speak.

I kind of wrote all of that off to stress from work not going well and family stuff (Lily was in the hospital – twice – and Dad broke his ankle that summer). Until I got viral bronchitis in the fall, which turned into bacterial bronchitis, which turned into a sinus infection, and I was wiped out and burned out and scared. I asked my doctor to start doing some blood tests to assess my immune system – Lily’s psoriasis and Mom’s multiple sclerosis are both risk factors for me – and something weird showed up that my doctor didn’t feel comfortable interpreting, and she sent me off to a specialist. (This happened between September and December.)

The pain in my hands started when I called that allergy immunologist to follow up on the bloodwork. She did more bloodwork, had me to scratch tests and injection tests (and boy, between my increasing body pain and fear of needles, was that an ordeal), and found nothing wrong with my immune system. She didn’t like that I hadn’t seen anyone for migraines, and sent me to a neurologist. He reassured me that I didn’t have any signs of MS but ordered an MRI just to be sure, and when I told him that my joint pain had gotten worse, he sent me to a rheumatologist. I should mention at this point that I had deteriorated so far that I was an emotional wreck and incapable of focus or logic at the levels I needed to sustain work, so I took an unpaid month off (February) to deal with my health. Much of this happened during that time, although it started in December.

The day I saw the rheumatologist, she was busy. She’s the chair of the department for the teaching hospital I was at, and the resident completing her training under the chair’s supervision saw me first. She was wonderful! She listened, asked questions, read my file. Then she started a physical exam. I was shocked and horrified at the intensity of pain I felt when she started pressing on various points of my body. She told me she thought it was fibromyalgia, and then took her notes to the doctor while I waited. The doctor came in a few minutes later, warm and cheerful, leading a group of three medical students when I gave permission. She was calm and certain about my having fibro. She ordered more bloodwork, as a last check, and a sleep study (fibro seems to disrupt the normal sleep cycle), and wrote prescriptions for physical therapy and water exercise in a heated pool. She also wrote a prescription for a painkiller (Celebrex, a common arthritis drug) and had me set up a followup visit, giving me a hug and saying that I would be okay as she led her students from the room.

I was bewildered and overwhelmed, but I went home and followed her suggestion of getting information from the Arthritis Foundation on fibromyalgia. I sent the website link to a friend while we chatted online about my appointment, and her response was, “OMG, Elysia – this is your life!” A few days later, the painkillers kicked in, and then I found a place to get physical therapy, and wow, did I start to feel better. I managed to get back to work, and to juggle my day job with looking for a position when this one ends. (I have just accepted a job, yay! And it’s one that focuses on data analysis, so it will be much easier, physically, to manage.)

This month – May – marks only three months since my diagnosis in February. My life now is better, but still odd, and I know I have a lot of work to do to process this diagnosis and what it means to say that I have fibromyalgia. But I do. Almost every day, I have some pain: my hands, my feet, my head. My eyes are so sensitive to light that I have to wear sunglasses most of the time, especially inside under fluorescent lights. I can’t sit or stand for extended periods of time without pain, or even carry grocery bags for very long. But I’m learning about my triggers, and working with – thankfully – doctors who really care, and the pain is manageable and bearable. Sometimes I have vertigo, and I now get one to two migraines a month instead of my one every one to three years.

As a biologist, of course, there’s more to my story than that: I have a burning desire to understand fibro. I have access to medical journals that are harder for the general public to access because I work for an academic institution, and I have been trained in how to read them. (My history of growing up with Lily and learning from that life how to ask questions and take notes during a doctor visit also help.) Fibro is…not very well understood. My rheumatologist described it as a disorder rather than a disease, because the symptoms may wax and wane, but no permanent damage is done. To the best of my abilities right now, the rest of what I have learned is this: in fibro, the body has an inappropriate response to pain. Early evidence suggests that there are chemicals that help transmit pain messages that are elevated in people with fibro relative to the rest of the population. This manifests in pain where none is warranted, and weird feelings as the body insists that it needs to heal itself. Sleep is when some of that healing happens, but that seems to have gone wrong, so fibro patients frequently have poor or disrupted sleep. I’m still fussing over the details, slowly, since I know it’s not healthy to fixate on this (and I’m a PhD, not an MD), but I feel like it’s important to be informed. Hopefully my early understanding is correct, but it might not be; it’s challenging to pick apart medical and scientific reports, especially if you’re emotionally invested in a topic!

So that’s my story – that’s how I arrived at my own current awareness of fibromyalgia. Hopefully it helps you, my dear readers, to be more aware of it, too, or if you are already aware of it, to find some commiseration.

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