white noise

Last night, Jon and I attended a lecture on Fibromyalgia given by Don Bivins, MD. I was quietly impressed, but recognize that I’m also afraid to hope. I’ve been through at least 15 doctors in the past decade, and all with pretty much the same result: I still hurt … all over, every day. Most of those former doctors simply wanted to pump me full of antidepressants and call it good. I’ve been diagnosed, undiagnosed, misdiagnosed and rediagnosed. From diabetes to obesity (I’m currently 30 lbs. overweight; 50 if I want to be a twig), to Lyme disease and depression, I’ve had so many labels in the past that it’s hard to keep count.

I’ve listened to comments ranging from “it’s all in your head,” to “it’s a fad diagnosis,” to “if you’d just lose weight you’d get more attention.” Oddly enough, I was nearing peak condition when my problems began. I had plenty of attention (not that I wanted much of it) and for the first time in my life, I was beginning to feel good about myself.

I spent the latter half of my youth living with horrible knee pain, often getting the same sort of feedback from doctors I get now. I was 12 when a doctor explained to my stepmother, Barbie, that I was merely a hypochondriac looking for attention. He sealed my fate and thanks to him, I suffered miserably for 13 years. From that moment on, the most help I could get was the occasional “put ice on it,” from my parents. Finally, at age 23, barely able to walk and unable to work, I found my way into the care of an orthopedic surgeon. He looked over my xrays, crossed his eyes at me, and asked how it was I managed to still walk at all. That was AFTER an xray tech reported nothing wrong with my knee.

In December of 1994, the same surgeon (Dr. Wells?) performed arthroscopy on my left knee, went in and cleaned up the shredded cartilage attached to the under side of my thigh bone (the medial condyle). He also repaired or removed a plica (a fold of soft joint tissue in the knee). Afterwards, he said recovery was up to me. He also explained that the damage done to the cartilage was irreparable and if I wanted to keep my knee, I’d have to limit my activities and avoid anything that causes the knee joint to grind … especially horseback riding. My time on horseback had already been greatly reduced. Although I have to baby it sometimes, my knee functions grandly about 95% of the time.

Go figure.

I suppose it makes me sound like an evil, vindictive bitch, but there are times when Barbie complains about how much she hurts that it slips to the tip of my tongue and I just want to tell her, “go put ice on it.” Of course she doesn’t deserve such a bitter response; I know her pain is real. She’s battled adenoid cystic carcinoma since 1980. After 13 surgeries on her lungs, there’s no doubt in my mind that she’s extremely uncomfortable. Her oncologist dismisses her pain quite easily. If he’s so eager to convince himself that she’s not suffering, it makes me wonder what chance those of us with Fibromyalgia have in the battle against our own pain.

I’ve hurt so long, I can’t remember what it’s like to be without pain. Since December of 1995, when the Fibromyalgia developed, I’ve found that nothing outside of morphine stops my pain, and relief is only as long as the drug is present in the system. I get minimal relief from anything else I’ve tried, and with all the treatments available, someone may as well reinvent snake oil remedies.

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