Menstrual Woes With Fibromyalgia

After reading the linked article, I am more sure than ever that I have had fibromyalgia all my life. When I was 15 and started menses, my pain levels were so bad that I fainted twice in school. Later, I would miss work on that first day of my period because the pain was so bad. I have been checked by doctors and there is nothing physically wrong with my reproductive system. The pain is just off the charts for me.
Looking back, I am seeing more and more of these clues over the years that show there was something wrong with me from the beginning. It just took a highly stressful event when I was 35 to bring the fibromyalgia out full force.

Shawna, I’ve had similar symptoms since high school, but never really thought about a connection with FM.

Adrienne, I also had an ablation, and have had the return (sporadically) of symptoms – especially killer cramps and abdominal pain. Many of the anecdotal reports online about ablation describe returning cramps as “like labor pains”. I doubt the stories I read online were told by women with Fibro, though of course some of them could’ve had it.
It’s interesting to postulate about the influence of hormones – like you, I suspect it is substantially greater than most think.

It makes me wonder, too, what the experience has been like for women with FM who’ve gone the HRT route. Anyone?

I’m 48 and ever since I was diagnosed with FM, about 8 years, my premenstrual symptoms have been AWFUL! About a week before, I get the most intense cramps. I, too, had an ablation, so there shouldn’t be much there to cramp. But what is there gives it all its got! Then about 2 days before I start, I get the full body smackdown of pain in what seems like every part of my body, fatigue, headache, fog – the whole nine. Once I start, though, it’s like the pressure is relieved and it’s like I never had a flare up. I’ve heard it get worse with menopause. Not looking forward to it.

Before my actual diagnosis of fibro I had severe female problems! My period never stopped for 2 yrs and the cramps were out of this world painful. My ob/gyn finally diagnosed it as disfunctional uterine bleeding. I had the endometrial ablation and everything was way worse afterwords. I had a hysterectomy 5 months later but kept my ovaries. I also found a dr that would test my hormone levels and she prescribed bioidentical hormone replacement therapy of progesterone. Way better on tour body than the synthetic stuff. My diagnosis of fibro came about a yr and a half later. The BHRT helps with my anxiety and hot flashes, but when I’m in a flare its not quite enough.

I don’t have Fibromyalgia but I do have chronic fatigue syndrome. I get what I refer to as cramps of doom. Sometimes it’s not too terrible and other times, if I don’t take the aspirin or ibuprofen soon enough, I end up curled up in a ball on the bathroom floor drifting in and out of consciousness and wondering if I’m going to puke too. I also have a tendency to get paranoid that everyone hates me for the first day or two as well. My period has always been regular to within a day or two since the very first one at age 15 though. Anyway, it may have nothing to do with my CFS, or it could be related.

I have always had Fibromyalgia and my periods started when i was 11yrs old and they have always been horrendous. I get heavy bleed outs that pads can’t deal with, which was very embarrassing at school when skirt and legs would be covered in blood. My fibromyalgia always flares up when I get my period even when I’m having good spells, legs go very heavy. I get cramps starting a week before my period. My doctor has put me back on the pill to try and control bleeding, tried a coil but had such a heavy bleed out with large clots that it came out despite it having been in for 2yrs.

diagnosed with fibro 6 months ago, i have ovarian cyst to the point im in the er having emergency test ct to see if may my apendix had ruptured but it was the cyst. i hardly have my cycle, but when i do the pain doubles me over.I am in the bed and the menstrual flow is heavy, also i pass large clots.

My level of cramping and heavy periods got to be so unbearable, they were truly affecting my quality of life.
When it was discovered I had a large fibroid also that was causing my uterus to be double it’s normal size, I opted to have a hysterectomy just 4 weeks ago now.

I’m so relieved to have that part of my pain and fatigue puzzle out of the picture, but I did keep my ovaries and noticed I had sleepiness this week that should have been my period week. It was still better than previous, not a true “black cloud” fatigue.

I have FM, was diagnosed about 5 years ago.

Honey, I hover on the edges of sensory overload every time I go to Wal-Mart! In fact, it is my absolute least favorite place to shop, and I wish I could avoid it entirely; unfortunately, it’s the cheapest place for a lot of my meds. The assault begins inside the doors, a space always bizarrely as hot as the surface of the Sun; from there on, it’s noise, glare, cleaning chemicals (ever notice how Wal-Marts always smell funky?), and just way too much stuff everywhere. Ugh. At least now we don’t have to pretend we’re glad to be there, as they’ve cut the greeters! But I can relate to the menstrual woes, too. It puts you in a chicken-and-egg place: is this just perimenopause, just fibro, or a little of both? Good times!

i’m a fibro sister, and reading these comments has been eye-opening. i have always secretly wondered if i’ve been misdiagnosed, because my symptoms have always, without fail, greatly increased right before my period. no doctor has every taken me seriously, even the women. but now i see i’m not alone, there are lots of us. now my question is, what can we do about it?

I believe I’ve had fibro since I was a child. I always had stomach issues and severe pain in my legs. When I started my period I was 17 which was possibly due to being petite and/or an athlete. Anyway, I would have to miss school and/or work for the first couple of days as the pain was so bad I would pass out. Nothing eased the pain and doctors said I was overly sensitive to the cramps (surprise, surprise). The good part was that after I had my 3 children the pain was almost totally gone or eased with tylenol.

I’m almost 50 now and was diagnosed with FMS and other illnesses 5 years ago. The reason it took so long was that was when I had my first severe flare. I was bedridden most of the time for 3 years. Right now though I’m in what I call a remission, my pain meds relieve 90% of the pain. However, they do mask symptons of illnesses like UTIs. I’m just starting to enter peri-menopause. I’m hoping that things go smoothly through this new transition.

My fibro symptoms definitely flare the week before my period. In addition to the premenstrual headaches/migraines, my body feels pounded on – like I have the flu. Fibro symptoms ease up a bit after I start but the headache continues.

It was interesting to me to read this article and the comments, because I long suspected my symptom flare each month was related to my period. I’m 45 and was just diagnosed with fibromyalgia in May (after years of not feeling well – probably like most of the women reading).

I have another medical condition that will require a hysterectomy in the future. I’ve begun wondering if I should just do it!

I always get a big increase in my fibro symptoms with my period. My periods aren’t too bad, though usually loads of clots, but the fibro pain escalates from a week or more beforehand and just builds and builds, also covers more and more of my body until everything is hurting or aching, then after the first couple of heavy days of my period the pain drops back to bearable level again.

Something I have noticed since fibro is that my period starts with spotting for a few days, then heavy for 2-3 days, then it just stops for 2 days completely, then starts again not very heavy and fades away over 3-4 days. It seems very weird to me and never happened before fibro, but I have read that it is a symptom of adrenal fatigue.

Have you had a checkup lately to rule out another possibility for the bleeding? When I was about 40 I had extremely heavy periods that were irregular. One would be two weeks after and then go as long as 6 weeks before the next one. This went on for several years.

The doctor did a D&C and that solved the problem I’m not sure why, but it worked. I had my last one at age 49.

May I suggest that you look into the subject of estrogen dominance. Your symptoms suggest to me a rising of estrogen level compared to progesterone. SHBG is meant to bind up excess estrogen but premenstrually estrogen needs to fall to bring about menstruation so any excess estrogen will cause the level of DHT to rise, as this is the form of testerone which cannot be converted to estrogen. DHT causes pimples and a gradual thinning of the hair. (Same as happens in men, only different hair loss pattern). Excess estrogen causes a heavier period and suppresses thyroid function which activates trigger points and hence the pain and other symptoms. Lack of progesterone can be caused by stress, failure to ovulate, lack of nutrients or toxicity, so maybe all the medications for fibromyalgia could actually be making the situation worse by making the body more toxic.

I’m 35, have FM, and take continuous birth control pills to stop excessive bleeding (past anemia) and because it tends to flare up my fibro. So, my periods come every 3 months. However, 2 days ago I got my first one since May. I have never (ever, even torn ankle ligaments and had ovarian surgery) experienced the pain as I have the last 2 days, especially yesterday. It felt like I was passing kidney stones or something, my back hurt so bad on my left side at my kidney, as well as horrible bladder spasms making me feel the urge to pee every 5 minutes. I was double-over, sweating, and very close to going to the ER. Today, I am doing a little better but I slept all day and am taking pain meds before it gets too bad. Has anyone had a similar experience? I think I will still go the the OB/GYN because of how severe the pain was but wondering if anyone’s came back as bad as mine. I haven’t been bleeding heavily so I’m thinking it might be from my uterus having problems shedding the blood.

Many years ago thru constantly speaking to and about FMS with other sufferers I came across and very interesting coincidence- Every single Female I Spoke to has had some type of Gynecological issue BEFORE being diagnosed with Fibromyalgia! – From Cysts to tumors – to Displaysia – to cancer & Hysterectomies, you name it some one has had it.. I could not help put wonder if there was a connection, In my earlier years and for most of my life I had never had a thing wrong NOT even a yeast infection – my periods were light 3 days and I never had PMS until after I gave birth to my Son (in my 20′s) even thought I did not know I had FMS and most doctors had still never heard of it – I began having abnormal paps. pre-cancerous cells they told me and I have had ever procedure for them over the next few years, I too was thrown into pre menopause when I was 34 but I discovered it was due to a severe medication i was given that made all my teeth fall out and damaged my liver & kidneys (they are okay today) Now at 47 my periods have been heavier than ever and I am hoping this is the beginning of the end. So what I want to know is how many of you who suffer from Fibromyalgia had had some type of gynecological problems? Does it have a connection??? and if so how does that change with the men who have FMS too? Hmmmmmmm?

Ive had arthritis symptoms about 5 yrs, then i would have on and off restless legs, esp at night. I am now 32, was always on pill had reg periods, then seems the stress of my divorce hit and it all fell apart, my periods started every 2 weeks, became worse, so started back on pill, helped about 3 months. Then tried the depo shot, actually cont get worse. Very painful, then the fibromyalgia symptoms came. Dr diagnosed me with fibromyalgia. On neurontin 3 times day. Finally had uterine ablation. Worked about 6 weeks, periods returned. Decided with robotic di vinci partial hysterectomy, ended up total hysterectomy due to endometriosis. Seems fibro is worse since surgery dr is referring me to neuroligist. So seems all these things run together, anxiety, stress, depression, periods, and fibtomyalgia. Im hoping for relief soon.

To Maggie – I too take continuous bc pills because my periods are so painful and ridiculous. I am 38 and have been doing the 3 month on/ 1 week off for 10 years to avoid the terrible periods. On my period I get extremely tired (hard to imagine that it can get worse than the “regular” tiredness that comes along with Fibro and CFS). My periods do not come back with a vengeance from doing this. In fact, they are lighter, shorter and I have tolerable cramps. Sounds like you have something else that would cause pain that bad and it would be worth checking it out with a doctor. As a teen, my periods were so heavy that I would have to suffer the embarrassment of bleeding through my clothes at school (an emotional scar I have not yet overcome because I will never wear white on my period, only black and brown pants). The period was continuous for a year and I ended up on bc pills before I was 14. I always missed days of work as an adult and after the fibro hit full time, I decided enough was enough, I could not take any additional pain or suffering, so I went on the continuous bc pills to at least limit the torture that was my period. After reading the article on fibro and pregnancy, it reaffirms my belief that the fibro would get way worse if I got pregnant, which is why we have decided not to have children. Yet another thing that makes me feel abnormal because of fibro. But hey, as I’ve heard my dentist so casually and insensitively say, at least I get to sleep late!

I, too, suspect that I may have had fibromyalgia for most of my life. I was only recently diagnosed last winter, yet throughout my life I have had mysterious, debilitating symptoms of the syndrome.

I suffered from horrible menstrual cramps throughout elementary, high school and young adulthood. The cramps were so bad, they caused severe nausea and vomiting which went on for at least 12 to 18 hours after my period started. I would be incapacitated for at least two days for every cycle. Once I started working, after high school, I would need to be taken home sick by a compassionate co-worker when I’d get an attack of the cramps at work.

One day of retching until nothing was coming up from bile, and another day to recover from the weakness and dehydration. No doctor I went to could every “solve” the problem and very often the attitude was very flippant: “Oh, you’ll get over it when you start having children.” I even subjected myself to a therapeutic D&C with the hope that the procedure would help. It didn’t.

I am still reeling from the realization that many of my health issues over the years was caused by fibromyalgia. In some ways it was a relief to know that I wasn’t crazy. Yet, as I read as much as I could about fibromyalgia I am stunned at how much it has impacted my life.

In answer to the questiona bout do women with Fibro have a history of gyn problems teh answer in my case is yes.
I suffered heavy periods since I first got my period aged 12. I couldn’t take the pill due to horrid side effects and in my 30′s after my 3 child had really heavy bleeding. So much I needed to take a change of clothes to work etc.
I eventually had a full hysterectomy aged 40 and been on oestrogen replacement therapy since with littel effect except put on weight!

it was thought I hade enometriosis but tests after the hysterectomy didn’t find much evidence ofit.
reading everyone elses history I now wonder was it all linked to undiagnosed Fibro.

I also have a history of surgery or test for other abdomina problems that have all proven negative so wonder has that been the fibro also?

Anybody else similar?

I too thought I was done with my menstrual cycle. When I was 43 years old I had gone 11 months without a cycle. However, I decided to see a gyno, because I hadn’t been in a while and also because I suffer from PCOS and was having problems with the pain. I cannot take hormone replacement (as I was using bc pills to help), due to DVT in 2000. Anyway, my gyno decided to put me on metformin, not because I was diabetic (altho I was close to pre), but because metformin is used to treat PCOS. My blood insulin levels were over 100, so anyway, the metformin decided to bring the monthly cycles back, ugg, so for the past 4 or 5 years I’ve been having the cycles, but now that I am 48, and as the dr says at the age that the real menopause could start, I am going between 15-47 days from start to start of cycles, very annoying and wondering if I should continue the metformin or just stop it and get rid of the cycles.

I am a physical therapist with extensive experience with the TENS unit and relieving menstrual problems. The best placements we have found are by placing a pair of electrodes on Baer’s points which are one third of the distance from the ASIS (anterior superior iliac spine), which is the bone point on the front of your pelvis toward the naval. These are wearable at all times and also help abdominal and back pain as well as lower extremity pain and swelling. The other pair is extremely effective, but not wearable when walking. The acupuncture points Spleen 6 which also works with acupressure for menstrual cramps and back pain. These are extremely tender on all women, but are so effective they might cause a miscarriage if you’re pregnant. They are four of your fingers up from the medial ankle bone. I generally find modulation mode works better than continuous. Good luck.

I actually had “normal periods every 35 days since I started at the age of 12. Had 4 children and didn’t start suffering from FMS symptoms until 1998, at which time my kids were nearly grown or already out on their own. I did time on the pill because of anemia for about a year, and then started with menopausal symptoms in my late 40′s, hot flashes being the most annoying for me. I was still bleeding monthly at the age of 56 so did the D&C with no real changes except to have 1 polyp removed. Anyway, things got lighter slowly to just spotting which finally stopped when I was 59, I wasn’t menstrual free for a year until last year, so I was 60 years old before I finished menopause. I have noticed that we that have FMS, tend to be heavy to morbidly obese which is probably from the drugs and our inability to exercise vigorously. I know that fat stores estrogen, so I often wondered to myself if that was why I was taking so long to finish that stage in my life. The only thing about being post menopausal are the bladder infections. I went for years w/o them after enduring them constantly in my first marriage, so when they returned this year I became worried, and the doctor wasn’t much help, saying that is not uncommon for us “old ladies” (not literally) , the bladder looses elasticity, yadda yadda yadda. They aren’t bad enough that I am going to a urologist. At least not now.

I know this one all too well. I was a late bloomer of sorts because I couldn’t gain enough weight to make my menses start. When it finally did, all heck broke loose. After many tests and exploratory surgery, I just take the birth control pill every day and simply never have a period. I admit, its great. That was about 16 years ago before the FMS diagnoses but I had other symptoms even as a teen. Since I am single and have no plans for kids, being on the pill works fine. Now if I could just get some sleep!

I have been wondering about this subject since I went through menopause at age 46 ten years ago! I have had CFIDS for 16 years. I had a hx of non-stop yeast infections all through my 20′s. I was also using an IUD for birth control BEFORE the MDs decided that it probably caused uterine infections and could cause sterility.
My periods weren’t great, but menopause has been a nightmare for the last ten years. I suddenly developed Severe Depression and Major Anxiety, having never had these before, which were extremely difficult to treat. They have been one of the worst experiences of my life. I still take antidepressants. I am SURE that CFIDS must cause major hormonal disruption. Yes, I am on HRT (Prempro) which has helped the depression and the constant sweats.

I forgot to mention that I NEVER go to malls, department stores, big box stores, etc. I only shop through catalogs and on-line. The walking, waiting on line, the stimuli from too much music, talking, mirrors, zillions of choices, and the perfume counters are deadly. I would advise anyone with CFIDS/FM NOT to go to these places. Shop in the quiet and control of your own home. You can always return what doesn’t fit.

Maria,
I have found some similar symptoms that you mention — depression, yeast infections, etc. I found that those mostly resolved with the proper thyroid medication AND I had a really hard time getting diagnosed and finally found out that it was because I was unable to make the optimal amount of the TSH hormone (a pituitary hormone that docs like to test to “see” how the thyroid is functioning). Using an alternative therapy along with two thyroid medications, I am feeling a lot better.
In the past I found that the yeast problem was much better in the summer as was the thyroid situation and wondered how much of that might be due to better Vitamin D levels. After being diagnosed with celiac, my vitamin D was found to be very deficient and so I now try very hard to keep it at optimal levels — helps the depression too!

I have Fibro, Osteoarth, DJD among other things BUT I also had an Abalation June 2010 and I notice that the week before and the week during I am on MORE prescribed Pain meds during this time. I’m talking about between 8-10 on the scale. It’s funny how ALOT of us go thru this.
Oh and I just turned 40 this April 2012.
THanks for all of yalls input on here.

My periods were dark red and heavy. I cut out SULFITES from my diet and lo and behold, periods are now bright red and normal, not heavy, no more EXTREME fatigue. TRY BEING SULFITE FREE!