I attended my first national fibromyalgia seminar at age 47 after experiencing its symptoms since childhood. There, I learned my unusual menstrual symptoms were not unique, even though they never were described in any of the literature I’d read. Fellow patients reported having symptoms similar to mine and completely unlike those of their healthy friends or relatives.
As luck would have it, my body matured early, and I was introduced to “my friend” at the age of 10. Yes, back in the day, girls referred to their period as their friend, as in, “Has your friend arrived yet?” Mine was less like a friend and more like a “Midol Misery.” But, unlike every other girl I knew, cramps were not the extent my problem.
Every month, several hours before my cycle began, I became one big mass of muscle tension. I was manic; I wanted to scream for no reason at all. It felt like I had two internal rubber bands, one connected from my abdomen to my toes, the other from my abdomen to my fingers, and they were being pulled simultaneously. My toes curled and my fists clenched. I would sweat profusely and moan involuntarily. No amount of Midol or anything else relieved this agony. Only sleep (even if only for a few minutes) would ease the tension, and the telltale sign would appear in my underwear upon awakening.
Each month, I went through the same awful process. Suffering too badly to be embarrassed, I would get excused from class to go see the nurse. I would tell her I had cramps (it was easier than trying to explain what I was really feeling), get excused from school, drag myself home hunched over in pain, and go to bed. I’d lie there crying until I fell asleep. Once the flow began I’d be fine until the next cycle, anywhere from 18 to 45 days after the beginning of the previous one. During that entire interval, I fervently prayed that the next occurrence would be at night or on a weekend. That way I’d be closer to my bed.
As I did with so much of my young fibro life, I considered this normal. When I finally realized how different my monthly experience was from that of my friends, I reluctantly allowed my mother to take me to a doctor. My worst fear was the dreaded “internal exam.” But I was desperate. I would have done absolutely anything not to suffer that way again.
This was my first experience with trying to describe unusual symptoms to a member of the medical community. It was actually good practice for when my next bizarre ailment occurred. Unfortunately, no amount of explaining could make the kindly old doc understand my problem. I’m not sure there was anything he could have done for me even if he had understood. As disappointing as that was, I was more relieved that no internal exam had been necessary.
The doctor told my mother (as if I wasn’t even in the room) that in time I’d learn to live with “having cramps” and being a woman. He was wrong. What I had was never “cramps,” and I never did learn to live with whatever it was that I had. I experienced my unique “Midol Misery” every single month until I began taking birth control pills. Had they been invented in 1957 and been prescribed for difficult menstruation as they are today, they could have saved me a world of hurt.
The conversations I had with fellow patients at that FM seminar were the first source of comfort I ever had on this topic. Like me, the women I spoke to were searching for understanding and the assurance they weren’t insane. But mostly, we all longed to meet even one other person who could say honestly, “I’ve had the exact same thing!” When several of them described manic, pulling pain accompanied by sweaty, clenching of hands and feet relieved only by sleep, I nearly laughed in relief.
Of course, we could speculate only on what caused our experiences to be so awful compared to that of our peers. To date, no clinical studies have been done to explain it. It’s still anyone’s guess.
One thing we do know: In menstruation, as in so many things, sensitive FM bodies respond differently than other bodies. I’m grateful for this newsletter. It gives us a forum for sharing those differences and for helping us feel less alone.
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.