Unique Menstrual Symptoms in Fibromyalgia

Unique Menstrual Symptoms in Fibromyalgia

Christine Tender Points
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.

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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.

12 comments

  1. Donna says:

    Thank you for sharing. I used to be so sick at the beginning of my menstrual cycle. I remember many times when my mother or college friends would drive me to the doctor, who would give me a shot of pain medication, that knocked me out for the day and night. Finally, I was put on the pill by a knowledgeable doctor. This changed my life, as I never experienced that agony again. I do believe that I had fibro since then, but was nay diagnosed 4 years ago.

    • Christine Lynch says:

      Hi, Wilma

      My flow was not unusually heavy and usually lasted about 4 days. I started regularly at age 9 and completely finished at 62.

  2. HJ says:

    I have what’s called “PMDD” – Premenstrual Dysphoric Disorder. It took me a long time to “prove” that this wasn’t a normal case of period discomfort.

    I charted my symptoms on PatientsLikeMe.com. Those little orange and red indicator lines told a story that I tried to convey to doctors. A week before my period, my fatigue and pain would ramp up. The week of my period, I was paranoid, tearful, highly emotional and absolutely NOT myself! I also gained around 7lbs, and my back would hurt terribly. The “cramps” would sometimes make me nauseated & I’d sweat like crazy.

    Then, I’d start getting sinus symptoms. It was like my allergies ramped up. I would come down with a cold, which often turned into bronchitis and with my asthma, I ended up on prednisone. It was like my immune system crashed out when I got my “friend.”

    I’m now on continuous birth control (via “the pill”) and life is good. I also take Prozac. I was reluctant, but it was suggested for reducing migraine headaches along with managing the PMDD, so I relented. A headache specialist drew me a diagram showing me how “low serotonin” impacts the gut, migraines, and other issues. I wish I remembered what was on the diagram.

    I get cramps, get a little teary, and get spotting for a few days.

    I took Topamax once and it was amazing for my pain control, but it was messing up my vision (palinopsia – “after-images of movement”) and my eye doctor wasn’t even familiar with the side effect profile of the drug (I found my answer online). Topamax was intolerable in the end because it interfered with my birth control pill and I got my period for 3 or 4 weeks straight. I was under pressure from work and I just “cracked.” I was balling my eyes out in the office and was having suicidal thoughts. So, that was the end of that. I miss the pain relief, but could never, ever go through that again. I was on it for migraines.

    I sometimes wish I were born a man.

  3. Laurel Stride says:

    thank you for writing this article. It explains what I had gone through as a teenager. I use to end up doubled over in my desk from pain when my so called ‘friend’ occurred every month. I was told it was just part of becoming a woman. I had extremely heavy flows and was very embarrassed when I would overflow in class especially phys ed. I used Midol regularly and was in shock when it was taken off the market. It took a long time to find something else that worked so I could live a human life as a teenager.

  4. Margarida Pais says:

    I totally relate with your story, except for the part that I take the pill since my teenage years (my periods were really heavy) when my Gino at the time told me to take it to ease the pain and discomfort. What a relief, it did not take all symptoms totally away but it eased a lot and made period undoubtedly more bearable.

    When I reached 35 yrs, I decided to stop because I smoked and was afraid of having health issues but it got worst and worst. I even went for a endometriosis appointment because the pain was totally unbearable. Luckily, everything was fine it was just fibro mixed with the usual pain that I had already forgotten how hard periods could be. I was advised to take on the pill again, and I did it helped but still hurts a lot and some months I have to stay in bed as long as 3 days.

    This July, I started taking CBD oil to help me with Fibro, it really worked well with me. I am now 80% more active, less pain, less fibrofog and many other good contributes for my well being, I am now starting to regain control over fibro.

    However, one of the effects I wasn’t expecting was that together with the diclofenac sodium (that I take to ease the pain and sour), the oil took almost all of the pain, period cramps and all the nasty period symptoms.

    For me it did help, it was a huge change in my life quality (wellbeing) with Fibro and with period hell. I wanted to share my experience within this community, like everything it might not work with everyone but for some it could be life changing.

  5. Terri says:

    I had similar issues but along with it I had unusually heavy menses sometime flooding, sometime large clots….always at least 7 days long. Most times the pain was so severe my lower back doubled me over. The only time I had relief was when on birth control pill. I was in heaven….gained weight but the relief was worth it! After having the kids, I went off them due to issues and went right back to my old familiar “friend”. It wasn’t for another 20 years until I was diagnosed. Now I’m past menopause and none too soon!!!

  6. So glad I’m not the only one that found it a misery. Unfortunately it has gotten so bad after two children that I also feel ovulation and get PMS and pain during the period. It’s a long month!
    Of course I was often dismissed

  7. Bronwyn says:

    Hi all; I, too, wonder re the “coincidence of oour Menstrual Cycle to Fibro”; as I suffered each month fom the age of 12 to about 30. Then the only reason I started treatment, was that one day, on day 1, I was at work, and 2 of the doctors working with me, asked me “what is wrong?”. From here I went to Gynae, and over a period of many years, had several Laparoscopies and D&Cs ending with a Hysterectomy in 2005. My concern now is that one of my frand-daughters (who isa already suffering from severe Depression), is also going through the same symptoms. Yes, we both, what I would call, Flood on our 1st two days.
    Do any of you think that it was Fibro causing the severe cramping, or more an Hereidtary Issue as my Gynae says? (my mother too suffered severe cramps, but Just Put up with it as we were supposed to do). Thankyou for any replies.

    • Darlene says:

      Bronwyn, Yes, definitely your severe cramping is an aspect of fibromyalgia. I’ve read in several books about fibromyalgia that severe cramping is one of several accompanying syndromes of fibromyalgia! I am now 73 years old and severe menstrual pain began when I was 15 years old. It continued and worsened through the years until I would be bed ridden and doubled over with pain in my back and pain in my front for 4 miserable days. As a senior in high school my period started one time during English class. The school nurse had to wheel me to my mom’s car in a wheelchair because I couldn’t walk because the pain was so intense. During those years no one had ever heard of fibromyalgia. I was 50 years old when I was diagnosed. As I look back over the years I believe I had childhood fibromyalgia because even at 7, 8, and 9 I had a certain recurring pain in my feet, legs and arms. My mom would give me quinine tablets that relieved the pain. Quinine is no longer available over the counter and is I think prescribed only for malaria (with good reason).

      On thing made me feel exceptionally well last week. A week and a half ago I began rebounding and following videos on youtube to improve my health and my stamina. One day after rebounding it felt like all the cells in my body were energized and I felt wonderful for a few hours. I haven’t been able to duplicate that feeling as I can’t exactly remember which video(s) I watched and followed when reboundng that day. I suspect that improved blood flow brought oxygen to the my cell’s mitochondria and increased my energy.

  8. Susan B. Walker says:

    This posting finally confirmed to me I have had fibro since I was 13 (am now 75) even though I was only diagnosed two years ago. That’s when the panic attacks/agoraphobia began, that’s when my period started. I never had a regular period, would go from 3-8 months between them, then bled so heavily, I had to use dishtowels on top of the Kotex and still couldn’t contain the ensuing “mess”. Three days before my period would start, I would get strep throat and a migraine. The pain was excruciating. Doctors who diagnosed the strep throat thought I should leave my body to science. In 1962, the year that I married, I was given birth control pills 6 weeks before the wedding. I threw up every day while on the “pill” and was forced to discontinue them in order to walk down the isle. I suffered several miscarriages but eventually gave birth to two boys. One with ADHD and one who was recently diagnosed with fibro. Isn’t that a fine kettle of fish!

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