Facing Fibromyalgia

Fibromyalgia – misdiagnosed, misunderstood, often dismissed, fibromyalgia.  Coming out of a long bout of mono, I wasn’t getting better.  Actually, I was getting worse.  However, the infectious disease specialist proved through my blood markers that the disease was no longer active, so by all the ways doctors were measuring, I was better.  The thing is, I wasn’t.

I had widespread pain.  There were days when I woke up and my whole body felt like a bruise.  It was painful to set my feet against the floor, painful to put weight on them, when the muscles in my calves activated, it felt like I’d run stairs in heels, and every other muscle group had a similar complaint.  My skin was tender to the slightest touch.  The crippling weight of the fatigue felt as though I’d been submerged in water for 30 years and was now trying to walk on land for the first time and gravity had some sort of new, targeted pull it was using specifically on me.  I couldn’t stand up for the length of time it took to brush my teeth.  I can remember sitting on the toilet and using the toilet paper roll like a pillow while I went about my business. 

During this time, I applied for long term disability (LTD) from my work.  I couldn’t get out the door in the morning, much less manage my duties for 8-10 hours of thinking, walking, communicating, driving, and using the computer.  My doctor told me she thought I had fibromyalgia.  However, the LTD paperwork required that any fibromyalgia diagnosis come from a rheumatologist.  Here was the catch, without an autoimmune condition (or positive ANA blood work) no rheumatologist would see me or let me set up an appointment.  I widened the search.

I found a rheumatologist 2 hours away who would let me have an intake appointment.  My hope was to take my file and get a diagnosis from her.  My partner drove us up that morning.  I went with guarded hopes, brining not only my LTD questionnaire but also my questions for the doctor about my experience, what to expect, treatment options, etc.  While she never completed an exam or asked me a single question, the doctor proceeded to berate me.  She told me I was “lazy,” and needed to “get back to work.”  She most definitely was not giving me a diagnosis or helping me complete my LTD paperwork. I left the appointment feeling diminished, belittled, and uncertain where to go next.

She wasn’t the last of the awful doctor’s experiences I had, but she was one of the worst.  Thankfully, I have a good deal of privilege (whiteness, education, access, a supportive spouse, etc.) and I persisted.  Eventually, my search led me to a doctor that anyone who has fibro should know about.  Her name is Ginevra Lipton and she, herself, has fibromyalgia.  She developed it while in medical school.  She knows firsthand, the ways people with this disease are marginalized, overlooked, and dismissed.  In an effort to find answers for herself, she has become a powerful resource for others with fibromyalgia and encourages multifaceted, holistic treatment.

I’m incredibly lucky because Dr. Liptan practices just a couple of hours away from me so (thanks, again, to my able-bodied-partner’s willingness to take me) I was able to have several appointments with her.  She spent time listening to me and asking questions about my social history, not just my symptoms.  She asked about whether I practiced mindfulness, the health of my diet, and the quality of my relationships.  She did the standard touch-tests, but she also talked to me about sleep hygiene and daily activities.  From that first rheumatologist to Dr Liptan was the difference between feeling all alone in chronic pain and illness and feeling like I had someone in my corner – leaving with resources and a way to get some traction on this illness that had left me hopeless and unsure of where to start.

That was ten years ago.  I still have fibromyalgia.  There are still times when I feel like I did in that second paragraph.  But I don’t feel that way all-day, every day.  Writing that last sentence feels like a miracle.  There were times that I didn’t know that relief of some symptoms, even some of the time, was possible.  It is.  Positive change is slow, while negative change (flares) come on quickly.  Disease management takes attention to self-care and daily habits: everything from what I eat and whether I stretch or exercise, to the quality of my thoughts and how I spend my energy.  Looking back now I can see that I’ve come this far because I have a fundamental belief that 1) I’m worth it, 2) better practitioners are out there, and 3) no one will advocate better for me than me. 

When our bodies are worn out, exhausted, and in pain all the time, it is so hard to do our best thinking. When others (especially doctors) doubt us, it can be particularly demoralizing and difficult to stay steady and keep our spirits and determination up in the face of that afront.  However, there’s nothing more important than getting the care you need.  In the words of Robert Frost, “the only way out is through.”  So, take breaks, call a friend, get support, punch a pillow in frustration, get some therapy, do whatever you need to patch yourself up and get back on the path.  You’re worth it.  While I fully believe that I am not my diagnosis, there is power in knowing our diagnosis so we can start getting the care and treatment we need.