IT HAPPENED TO ME: A Fibromyalgia Misdiagnosis Made Me Sick For A Decade
I’d been engaged for about a month when the stabbing chest pains started. The first one woke me up in the middle of the night. I remember sitting up in bed next to my fiancé, clutching my chest, trying to figure out if I was having a heart attack. I’d just gotten the hang of sleeping in the same bed with another human; I wasn’t about to wake him unless I was dying.
So, I crept out of bed and Web-MDed my ass off until I’d convinced myself that what I was experiencing was a cancer diabetes broken rib heart attack. I fell asleep composing a final farewell letter to my loved ones in my head and musing on what song they should play at my funeral. (I settled on either “There Is A Light That Never Goes Out” by The Smiths or “Into My Arms” by Nick Cave around 4 a.m.) I didn’t wake Tim. I figured he needed his rest. I mean, his fiancé was dying.
Over the next 10 years, I frequently thought about that night and how it might’ve been better if I had been dying. I’m sure you’ve already figured out that I didn’t have a ‘cancer diabetes broken rib heart attack.’ Nope. After going to at least 10 zillion doctors –- who all looked at me like I was insane -- I was diagnosed with fibromyalgia, a strange controversial illness I couldn’t even pronounce. I got the diagnosis at the ripe old age of 28, two weeks before my wedding. I cried in the doctor’s office as she told me there was no cure, that I’d just have to learn to manage my pain and fatigue on my own.
My symptoms just got worse and worse. In addition to the chest pains, I had an ever rotating party pack of issues like nausea, vertigo, IBS, brain fog, throbbing pain in my joints, weakness, bladder pain, hypoglycemia and, of course, the never ending exhaustion, which was so bad that some days I would move from the bed to the couch and not move again. I became intimately familiar with the daytime TV lineup, which isn’t as glamorous as it sounds.
Because I never knew how I’d feel from day to day, planning things was really stressful. I’d RSVP to parties and weddings, never knowing if I’d have to cancel or not. Fibromyalgia was impossible to explain to friends. I went from being a happy social gal to a recluse. My doctors, my therapist and all the books told me I just had to learn to live with the illness so I made my world really small to accommodate it. Because my body didn’t work right, I started seeing myself as weak and incapable. I became depressed and suicidal as I pictured decades of pain and Netflix stretched out before me.
That’s not to say that I didn’t fight back. I did. I took muscle relaxers, anti-depressants and pain meds. Anything they threw at me, I caught in my mouth like a desperate sick seal. None of the prescription drugs helped but they did make me gain 15 pounds and adopt the drooling dead-eyed personality of a "Walking Dead" zombie. So, I took myself off the pills and made research my full time job.
I tried everything. I went on an experimental treatment that made me sicker before I got better –- “like chemo,” they said -- but I never made it to the getting-better part so I quit that too. I did acupuncture, medical trials, massage therapy, infrared sauna and psychotherapy. I experimented with different diets. I tried a program where I took 20 vitamins a day. I took D-Ribose. I even did daily shots of pricey wild blueberry juice from the Himalayas because my sister-in-law heard it was good for inflammation. A lot of this felt a step above throwing salt over my shoulder, but I did it anyway just in case.
By the end of the decade, I’d narrowed down the things that helped to bubble baths (the bubbles are super important), massage, yoga, an organic vegetarian chemical-free diet with the occasional M&M binge and alcohol. Lots and lots of alcohol. I was getting by and I’d accepted my fate to a point. But, I wasn’t thriving and I was still searching for ways to make my life easier. It seemed to me that fibromyalgia wasn’t an actual illness but a fancy word for a collection of random symptoms. I wanted to know what was causing them.
In 2012 I visited a holistic doctor. Dr. Shiva Lalezar did something no other doctor had ever done. She asked questions. And then she tested everything. Instead of slapping me with a prescription, she checked my urine, my blood and my saliva (seriously). She even took a stool sample. The craziest test she did (yes, even crazier than making me poop in a cup) was the heavy metals test. You get an IV and then you pee in a big jar thingy -- which I lovingly referred to as my porta-party-potty -- for six hours. Then they test your urine for heavy metals.
The tests revealed that I had high levels of mercury in my system, which can cause inflammation, weakness, fatigue, brain fog and all sorts of other icky stuff that sounded eerily like fibromyalgia symptoms.
Before you make a Jeremy Piven joke or tell me to lay off the sushi, let me just say that growing up I had a ton of fillings: gross metal amalgam fillings from the ’80s that apparently slowly leeched mercury into my system for years. Ten years ago (right before the chest pains started), I had them all replaced. That’s when the health problems started. That’s when I was diagnosed with fibromyalgia. It is probable that the dentist didn’t use proper precautions when removing the fillings and a lot of mercury was absorbed into my system. I will never know for sure how it got there but I didn’t care. I just wanted it out.
Over the next few months, I got chelation IVs once a week. Chelation administers chemical agents into your body that bond to the metals and pull them out of you. The FDA doesn’t approve this technique for treating heavy metal poisoning, but it’s a common therapy among holistic doctors. And, look, I already felt terrible. If there was even the smallest chance I could feel better, I was in.
Chelation wasn’t fun. I’m terrified of needles. I’d rather get shock therapy while watching Subway commercials on loop than so much as look at an IV. But, I sucked it up and did it. Each time I’d feel crappy for a few days afterwards while the mercury left my system. I had headaches, body aches and more fatigue than usual. I was strangely hungry and excessively emotional. (I told my husband and my dog that I loved them at least seven million times during this process. Now I’ll never have to tell them again!)
But, after a few IVs, I started feeling noticeably better. I began to have more energy and I started actually sleeping at night without drugs or martinis. By the time I finished my 15th and last IV, all but one of my fibromyalgia symptoms were gone. No more aches and pains, no more weakness, brain fog or vertigo, no nausea. For the first time in recent memory, I had energy. I could make it through an entire day like a regular person. Little things happened too, like my hair became fuller and my nails, which had always been weak and flakey, were now strong. My skin even looked better, “more glowy” as one friend said, and I lost eight pounds. It’s almost as if my body was a fan of not having poison in it.
It would be easy to mourn for the decade I lost or to blame the original doctors for misdiagnosing me. It would be easy to fantasize about finding that dentist, holding him down and giving him a root canal. But, I lost a decade of my life to fear, depression and anger. I’m not wasting any more time with blame. I just feel lucky and grateful that I finally found a doctor who figured it out.
I believe every doctor I saw was trying to help me; they just didn’t have the right information. And, ultimately, they’re not responsible for my health. I am. That’s what I learned from all of this. You have to do your own research and be your own champion. Doctors are smart but they don’t know everything. They’re experts in their chosen field but you’re the only expert in you.
I still have one symptom left but will I give up and just “live with it?” Nope. Uh-uh. Not gonna happen. I will not roll over and commit myself to a small life. I will fight for the big one.