Why is my fatigue down while I have my menstrual period?

[SnappingTurtle]

I am coming up on 6 years with ME/CFS after a triple whammy of EBV, Type A and B flu infections.

I have noticed that 2-3 days before and during my period, my Garmin body battery measures 40-60% and my stamina is pretty good. At other times, it is 5-20% and my fatigue is moderate to severe. This has no bearing on my myalgia and restless sleep, which may even increase during this period.

No doctor, even my ME specialist thinks my observations are relevant; or, they recommend I take it up with a gynecologist. However, as we all know, most doctors aren't savvy or interested in ME. So, my attempts at initiating an investigation are futile.

Hubby suggested I ask here to see if other women have a similar experience, and if they managed to replicate the effect with some kind of treatment.

Here is what my typical day looks like:

1 Day before my period:

During Period:

 

[Judee]

I'm not sure but I think I read that estrogen drops for a few days before our period. It may have said something about one of the other hormones (maybe progesterone) increasing but I'm not sure about that last part.

You could maybe take an estrogen test around that time and maybe one other time of the month to see if you tend to run high. Perhaps that drop makes you feel better because you're not getting the excess you would at other times of the month. ???

I never got what you're talking about when I was still having my cycle. I actually would worsen those few days before (maybe because of POTS) and I've always suspected because of that happening that I'm in the low estrogen "camp."

Anyway, hope you can figure it out. I do think Hip mentioned taking some estradiol as a trial at one point. You could see if you can find that and the reason he was trialing that for his ME. Maybe it also can have a rebound effect. Also there is something called DIM, I believe, that some take because they've tested as having "estrogen dominance."

I could be remembering all this wrong just so you know but maybe a direction to research for you. ???

 

[SnappingTurtle]

I'm not sure but I think I read that estrogen drops for a few days before our period. It may have said something about one of the other hormones (maybe progesterone) increasing but I'm not sure about that last part.

You could maybe take an estrogen test around that time and maybe one other time of the month to see if you tend to run high. Perhaps that drop makes you feel better because you're not getting the excess you would at other times of the month. ???

I never got what you're talking about when I was still having my cycle. I actually would worsen those few days before (maybe because of POTS) and I've always suspected because of that happening that I'm in the low estrogen "camp."

Anyway, hope you can figure it out. I do think Hip mentioned taking some estradiol as a trial at one point. You could see if you can find that and the reason he was trialing that for his ME. Maybe it also can have a rebound effect. Also there is something called DIM, I believe, that some take because they've tested as having "estrogen dominance."

I could be remembering all this wrong just so you know but maybe a direction to research for you. ???

Yes, these are great directions for further research. Thank you!!!

 

[SnappingTurtle]

You could maybe take an estrogen test around that time and maybe one other time of the month to see if you tend to run high. Perhaps that drop makes you feel better because you're not getting the excess you would at other times of the month. ???

I am guessing it is possible to self-order tests like this without doctor's orders? I am willing to pay without insurance.

 

[Judee]

I am guessing it is possible to self-order tests like this without doctor's orders? I am willing to pay without insurance.

I think so. I see several on Ultalabtests.com and maybe walkinlabs.com. (I'm not sure what one you would choose though.)

Ultalabtests used to add a draw fee of $8 but usually ended up cheaper than the other lab because I would enter my email and get a discount code I could use right away. Enter an email address you want associated with you but not one you use all the time because you'll be inundated with specials emails from them after that.

Also I think there are saliva tests you can buy on Amazon as well.

Again research everything I'm saying before buying because I haven't researched it that much lately and I could be remembering something wrong.

 

[sunshine44]

I am coming up on 6 years with ME/CFS after a triple whammy of EBV, Type A and B flu infections.

I have noticed that 2-3 days before and during my period, my Garmin body battery measures 40-60% and my stamina is pretty good. At other times, it is 5-20% and my fatigue is moderate to severe. This has no bearing on my myalgia and restless sleep, which may even increase during this period.

No doctor, even my ME specialist thinks my observations are relevant; or, they recommend I take it up with a gynecologist. However, as we all know, most doctors aren't savvy or interested in ME. So, my attempts at initiating an investigation are futile.

Hubby suggested I ask here to see if other women have a similar experience, and if they managed to replicate the effect with some kind of treatment.

Here is what my typical day looks like:View attachment 53504

1 Day before my period:
View attachment 53505

During Period:
View attachment 53506

Yes. I have found this as well. When I was very severe, and my cycle mostly stopped for a few years, no. But when I began absorbing nutrients again better and it returned, I’ve absolutely noticed this. It feels like it’s multiple things. I’m very curious if I’m low on blood and my body’s blood volume going up, satiates the heart brain and organs? But I think it could be multiple things. It’s just something that seems likely for my case.

I’m getting ready to do the Dutch hormone test which is one of the better and more extensive ones currently but there are other labs as Judee said above that you can get tests from. I’m currently using walk in labs for bloodwork (I’ve hired a mobile phlebotomist since I’m bedridden).

 

[L'engle]

Might be worth trying zinc as a simple way to balance estrogen dominance. Definitely good to get tests and find out as much as you can!

 

[Seadragon]

Progesterone drops just before period and until middle of next cycle. Progesterone can cause fatigue. Maybe it's due to low Progesterone that you feel better? How do you feel the first ten days or so of your next cycle?

I am Progesterone intolerant so always felt worse when Progesterone was high (2nd half of cycle) and better when period started and for ten to 14 days after.

At my best first two days of period but not really sure why - sometimes felt almost healthy at that time (I'm menopausal now so no periods).

 

[Azayliah]

About a 3-5 days before my period, I typically experience increased appetite, acne, digestive disturbances, cognitive clarity, and energy. By the day after bleeding begins, the pendulum has usually swung the other way: low appetite, no energy, and skin that looks better than it did before the breakout. Also, mild flu-like aches, probably a migraine, sometimes palpitations, and PEM if I overdid things on the high-energy days.

My assumption was that it relates to the effects of a cycle that cause 1. increased metabolism (the reason for the acne and rapid healing) and 2. suppressed immune responses. Those things come into play when a woman is pregnant, as extra energy is needed to build a baby, and (I think) suppressed immune responses prevent the body from treating the fetus as a parasite. That could also explain why some women with ME/CFS get so much better while they're pregnant.

The thing is, I don't have a clue what it is exactly that causes the metabolic and immunity effects. There are hormones for growth/development/healing, reproduction, mood, sexual function, and circadian rhythms, metabolism, and autonomic processes. When my period hits all of that can be affected, and I don't really think it's as simple as the levels of estrogen, progesterone, testosterone, etc.

That said, there was noticeable decline in my health after I stopped taking birth control. Metabolism appears to have slowed down, leading to slower wound healing and less energy overall. It could be due to other things instead, such as effects of aging, PCOS (hormone imbalance of high testosterone and low estrogen), aftereffects of COVID or vaccines, side-effect of having ME/CFS, etc.

I've also noticed decreased energy and increased illness in my carer/roommate after she had a hysterectomy. That involves loss of estrogen and progesterone, which parallels the effect of stopping birth control for me... but runs counter to the way periods work (menstruation induced by a drop in those hormones).

 

[Judee]

Okay, this might not be accurate but perplexity.ai says,
"Progesterone drops just before the period starts, causing a decrease in estrogen levels
1
3
. This drop in progesterone and estrogen triggers menstruation to begin again, marking the start of a new menstrual cycle
3
. During the luteal phase, progesterone peaks and then drops if pregnancy does not occur, leading to common premenstrual symptoms like mood changes, headaches, acne, bloating, and breast tenderness
3
. Additionally, at the end of the cycle right before menstruation, both estrogen and progesterone levels drop
4
."

The numbers are the reference. Sorry about the formatting. And it's the first part of my day so I'm not able to read the references right now to see if they are even talking about that. Sometimes that AI reads them wrong (like often with things drugs.com is saying) so I like to actually read where it's getting the info to make sure that's what those websites are saying.

 

[SnappingTurtle]

Maybe it's due to low Progesterone that you feel better? How do you feel the first ten days or so of your next cycle?

Usually, I am back to feeling fatigued 2 days after my bleeding stops

My assumption was that it relates to the effects of a cycle that cause 1. increased metabolism (the reason for the acne and rapid healing) and 2. suppressed immune responses.

Interesting assumption about suppressed immune response. I know someone who says she had chronic fatigue syndrome (before I met her), and that she recovered on her next pregnancy.

 

[SnappingTurtle]

PCOS (hormone imbalance of high testosterone and low estrogen),

I totally forgot that I was diagnosed with PCOS decades ago. I have not been on birth control (Mirena iud, not pills) for 4 years. Hmmmm....

I've also noticed decreased energy and increased illness in my carer/roommate after she had a hysterectomy. That involves loss of estrogen and progesterone, which parallels the effect of stopping birth control for me... but runs counter to the way periods work (menstruation induced by a drop in those hormones).

Things are in such a delicate balance right now with my medications. I hate to think what more complex issues will happen when I reach menopause (I am 48).

I am reminded that it was suggested I trial some DHEA last year. I only took the smallest 5 (insert-unir here, I forgot what unit) dose. I recall not boticing anything, but maybe I need to change when I take it din my cycle

 

[Azayliah]

Interesting assumption about suppressed immune response. I know someone who says she had chronic fatigue syndrome (before I met her), and that she recovered on her next pregnancy.

I agree, it's strange. It would make more sense if being pregnant/more vulnerable to illness and infection worsened ME/CFS, but I've noticed more than a few instances where someone reported feeling better. Other than my period, this also tracks with my experience with antihistamines... those also suppress the immune system, but for some reason I function better if I take one every day.

 

[Azayliah]

Things are in such a delicate balance right now with my medications. I hate to think what more complex issues will happen when I reach menopause (I am 48).

I am reminded that it was suggested I trial some DHEA last year. I only took the smallest 5 (insert unit here, I forgot what unit) dose. I recall not noticing anything, but maybe I need to change when I take it in my cycle

I'd consider DHEA for myself, but I'm concerned about the potential side effects (per Web MD). After I developed visual aura with my migraines, the birth control I took was contraindicated. I stopped taking that but continued the testosterone blocker (spironolactone). About a year later I noticed increased acne, skin thickening, soft muscles and sagging, wounds bleeding too long and not healing, hair wouldn't grow and seems to have gotten even thinner, some pretty severe daily cravings for beef, and bowel difficulties.

I wondered if the spiro was to blame and stopped taking it. Within two weeks, my teeth could be brushed without my gums bleeding. Adding creatine, iron, and a b-vitamin drink, has killed the strong beef cravings and makes me generally feel better. My hair is growing again, acne and skin is improving, and wound healing is more normal, and bowels are improving. Spiro is a steroid, and DHEA is a pre-steroid enhancer, so I'm not sure this would be a safe supplement for me.

The period migraines are killing me though, which is making me consider asking for birth control again. They can be taken until around age 55 (over a decade away for me). I'm not sure what it'll do to my tissues (muscles, ligaments, etc.), as which are a lot saggier than I expected at this point in my life. Maybe the stiffening effect of estrogen would be good for me... 🤷‍♀️ Hormones are complicated.