for the ladies; symptoms vary with cycle?

[leaves]

I find that i am worse the week before MP and the days around ovulation. Probably I dont do well with relative low progesterone. Others have something similar? Or something that helps?

 

[leela]

You bet! Since ME I have an "extra" PMS at ovulation, in addition to the week-before one. Also, the first two days of the cycle I am usually totally debilitated now. Migraines also seem to coincide with the cycle and with ovulation.

 

[ahimsa]

You bet! Since ME I have an "extra" PMS at ovulation, in addition to the week-before one. Also, the first two days of the cycle I am usually totally debilitated now. Migraines also seem to coincide with the cycle and with ovulation.

I confess that I have no idea exactly when I ovulate--no mittelschmerz and I've never checked my daily body temp or anything like that. Maybe there's some obvious way to know when you ovulate and I've never heard of it? (hey, it's possible) Also, I have never had pre-menstrual symptoms. Any symptoms I had were generally during my menstrual cycle, not before.

However, I do have more symptoms (e.g., orthostatic intolerance seems worse) and less energy during my period, especially those first few days. For example, I almost always get a migraine during that time.

I used to have a lot of pain due to endometriosis even before ME/CFS. This pain steadily got worse after my ME/CFS onset. It got to the point where it was causing moderate pain during the whole month and then escalating to unbearable pain during my period. I kept going to stronger drugs and finally got surgery to remove the endometrial tissue outside the uterus (at least, as much as the doctor could find, most of it was around my right ovary and fallopian tube). I explain the details because whenever I just say "surgery" people think it means hysterectomy instead of targeted removal of the endometriosis tissue (see http://www.endometriosissurgeon.com/WhatToAsk/default.aspx ).

Anyway, I was lucky that my surgery relieved almost all my endometriosis pain and for that I am extremely grateful (some women go through multiple surgeries without pain relief--I was lucky that my abnormal endo tissue was mostly in one spot). Unfortunately, it did not help at all with any other ME/CFS symptoms. I still have more trouble during my period than during the rest of the month. I was hoping that it might reduce the symptoms caused by orthostatic intolerance, or that having less pain would give me more energy, but no such luck.

 

[leaves]

your ovulation occurs approx 14 days after the start of your MP. I notice because of mittelschmerz, headaches, insomnia, ocd tendencies, exhaustion and hot flashes
My theory is that it is related to estradiol https://secure.wikimedia.org/wikipedia/en/wiki/Estradiol
estradiol drops before ovulation AND before your MP

 

[leela]

I've noticed I ovulate as early as eight to ten days after the start of the MP. I know I'm ovulating because of mittelschmertz, for which I coined a term long ago: Uterus Man. Think tiny caped anti-hero standing atop your uterus, spearing it randomly with a hatpin.

Also, from the TMI Dept, at ovulation there is most always a clear, stretchy albumin-like stuff that is very much like raw egg white.

 

[leaves]

LOL!!!!!!!

 

[ahimsa]

your ovulation occurs approx 14 days after the start of your MP.

I've noticed I ovulate as early as eight to ten days after the start of the MP.

Yeah, I was pretty sure that there was a wide variation among women in day of ovulation and length of menstrual cycle. When I was young, my menstrual cycle used to be much longer than the average, anywhere from 30-35 days, not the average 28 days that's always quoted. And I frequently skipped a month, not just as a teenager but even in my early twenties. I wasn't extra thin, either, which is the reason often given for skipping periods. It wasn't until I started birth control pills that my cycle finally got regular (as a nice bonus the pills also reduced my endometriosis symptoms for a while).

Now, at age 50, my cycle is very short, anywhere from 22 to 25 days. I have a vague memory that the menstrual cycle often gets shorter when women get older (until they start to enter perimenopause). I'm a lot more regular now than I ever was when I was younger. I keep thinking that menopause is supposed to start any time now. But no symptoms, and I've not skipped any periods yet, so maybe I'll be one of those who starts late.

Oh, and as for TMI, we're already taking about menstrual cycles, which most folks consider a taboo subject, so I wouldn't worry about it, LOL! No such thing as Too Much Information on this thread!

Actually, I have read about various differences in discharge. However, since I never wanted to get pregnant, and never practiced natural birth control (way too scary! ), I never had a reason to pay attention to the changes that happen monthly.

 

[leela]

I never had a reason to pay attention to the changes that happen monthly.

Erm, this one you can't miss. It;s a little like a rubber band in its resiliency...
TMI TMI!!!:mask:

 

[insearchof]

MP Changes occur in ME

MP changes after contracting ME are not uncommon.

This paper http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1753720/pdf/calwestmed00378-0019.pdf was a study on this very issue in women who were amongst those who came down with the first outbreak of ME in 1934 in LA, USA identified in 198 nurses and doctors at the LA County General Hospital outbreak and which was believed to have spread over a 12 month period to an estimated 1700 people.

I thought the ladies on this thread might find this article of interest and of value.

 

[leela]

This is quite interesting, thanks for posting.
While off-topic, a phrase caught my eye that coincides with something that has been bugging me lately, mostly with regards to the way friends and family view chronic anything. This quote from the paper is referring to self-reporting of symptoms:

Exaggeration of symptoms must be recognized and, where possible, proper evaluation
given them. We have made every effort to do this in compiling our data. It is a well-known observation
that any severe or prolonged illness lowers the threshold to pain, resulting in a marked diminution
in pain tolerance.

All these decades later, there is still a tendency for people not to consider that in fact, those of us living this way tend to minimize our symptoms, even to ourselves, rather than exaggerate them. They seem exaggerated to a person who does not suffer day after month after year with this crap. Also. I find that chronic low-to-mid range pain (as opposed to acute unbearable pain like migraine) has the effect of raising pain tolerance rather than lowering it.
These distortions seem to have been especially applied to women; and while things have improved somewhat with the passage of time, I fear there is still a vestigial distrust and distaste for the feminine.
Sorry, way off topic, but then again I'm premenstrual and thus totally hysterical and over-exaggerating

 

[richvank]

Hi, ladies.

Please forgive me for barging in on a "ladies only" thread, not being a lady myself, but I have something to contribute that might be helpful in explaining some of the phenomena that have been described here. I find it interesting that some of you experience a worsening of symptoms at the time of ovulation, as well as at the approach to menses. I have offered a hypothesis that I think might explain this. Both these phases of the menstrual cycle are times during which the estradiol level drops, the biggest drop occurring around ovulation, and a smaller drop occurring at the approach to menses. In order for these drops to occur, the body (mostly the liver) has to metabolize (break down) the estradiol. There are certain enzymes that are normally involved in doing this. What I have suggested is that many women who develop ME/CFS have inherited polymorphisms in certain of these enzymes, namely CYP1B1, COMT, and one or more of the GST enzymes. Polymorphisms in SOD2 can also contribute. These polymorphisms make it difficult for the body to metabolize estradiol. When it attempts to do so, superoxide radicals (a type of oxidizing free radical) are generated by a process called redox cycling. This adds to the state of oxidative stress, and that would be expected to exacerbate symptoms.

I actually proposed this hypothesis to explain the observed higher prevalence of ME/CFS in women than in men. The idea would be that this combination of polymorphisms can be inherited by both women and men, but the effects in men are not as important, because their bodies do not have to dispose of as much estradiol. The result is that the women who have these polymorphisms have an additional bias toward oxidative stress, and I've suggested that since oxidative stress contributes to the depletion of glutathione, that would cause these women to be more likely to develop ME/CFS, under the hypothesis that glutathione depletion is what leads to the onset.

I might note that adrenaline (epinephrine) is also metabolized by COMT, so that a polymorphism in this enzyme, coupled with polymorphisms in one or more of the GST enzymes can also contribute to oxidative stress by redox cycling, as adrenaline at high levels can auto-oxidize to form adrenochrome, and that can undergo redox cycling.

So, if we consider a woman who has these polymorphisms who is ovulating or having her period at the same time that she is under significant stress from whatever cause, which is causing her adrenals to put out a lot of adrenaline, well, this could be a formula for ME/CFS onset.

I actually have received several reports of Genovations Detoxigenomics Profiles from women who have ME/CFS, who do indeed have these polymorphisms, but I don't have enough data to say whether this hypothesis is valid or not. I do think it is plausible, though.

I would appreciate comments, even "Butt out of our thread, buster! You're in the ladies' room!"

Best regards,

Rich

 

[aquariusgirl]

So logically, if we used extra glutathione, antioxidants during these periods, it might take the edge off?

I fit the profile by the way.

 

[richvank]

So logically, if we used extra glutathione, antioxidants during these periods, it might take the edge off?

I fit the profile by the way.

Hi, aquarius.

Maybe. It would be an interesting experiment, I think!

Sorry that you inherited this combination. As they say, "them's the breaks." Knowing about it could be the first step to countering it, though, and I would be interested to hear what happens if you try this. I really should dig through all my files and see how many women with ME/CFS I can find who have sent me this combination of data. I think it has been quite a few over the past few years.

Rich

 

[Valentijn]

I might note that adrenaline (epinephrine) is also metabolized by COMT, so that a polymorphism in this enzyme, coupled with polymorphisms in one or more of the GST enzymes can also contribute to oxidative stress by redox cycling, as adrenaline at high levels can auto-oxidize to form adrenochrome, and that can undergo redox cycling.

I've noticed lately that my response to an adrenaline burst is quite horrible. Hard to explain Hrm. Like it hits me really hard and freezes me and seems to last longer than it used to. Then feeling wiped out. It's definitely not provoking a "fight or flight" response ... more of a "freeze then fall over" response

I would appreciate comments, even "Butt out of our thread, buster! You're in the ladies' room!"

You're welcome in the ladies' room any time!

 

[leaves]

Hi Rich,
That is so interesting! (and no offense taken ) Do you know of a way to activate those enzymes?

 

[Dainty]

I find that i am worse the week before MP and the days around ovulation. Probably I dont do well with relative low progesterone. Others have something similar? Or something that helps?

When I first became severe, before I stabilized I was having very obvious physical PMS symptoms* a full 2 weeks before MP. I have no idea if overal energy was decreased, because during those years everything was completely haywire, but I suspect so. I would joke with my caretaker that the week following MP was truly my time of the month because that's the only break I'd get from the whole thing. Actual MP was reliably brutal* - worse than childbirth, according to someone who had three without painkillers.

It's hard to know exactly what helped. Once I moved into a chemically safe environment then the extended PMS symptoms improved, which coincided with detox stuff no longer providing improvement during MP (my theory: detoxed and no more toxins coming in = overall improvement but detox stuff no longer resulting in immediate difference noticed). As my food sensitivities and diet stabilized that also seemed to make a difference. Nowadays actual MP is only sometimes completely debilitating, which is the way things were before my CFS became severe.

I can't say I notice much of a change with ovulation, but that could just be me not connecting the dots because I've only rarely experienced mittelschmertz as described here and wouldn't have thought that O could potentially be to blame for a bad day or two. I'll have to keep an eye out for that.

*There are many details I'm not comfortable sharing here - PM me if there's something you'd like more info on.

 

[vli]

You bet! Since ME I have an "extra" PMS at ovulation, in addition to the week-before one. Also, the first two days of the cycle I am usually totally debilitated now. Migraines also seem to coincide with the cycle and with ovulation.

This describes me exactly. Has ANYONE found anything that helps?

 

[vli]

So logically, if we used extra glutathione, antioxidants during these periods, it might take the edge off?

Hi aq,

would you try doing a glut. push or two around those times, for example? I'm considering it.

 

[justy]

Hi, i just wrote a long reply and lost it to the ether. Damn!

I wanted to say that i also have this problem. Worsening of symptoms around the lead up to period and for the duration and during ovulation. I have also always had severe PMS and agonising pain plus heavy flow. I also have endometriosis since my late teens. My lung problems (fibrotic band and bronchiectesis) are also always worse around the lead up to my period -i always presumed this could be an inflammatory sort of thing going on, any ideas about that?

Ive been taking Agnus Castus for about 9 months now -just tapering off and it has been an enormous help to me. It is the first time in my life that i havent had lots of problems PM. The pain is also less severe, it has also helped a lot with night sweats (not menopausal) now that i have reduced the dose right down with a view to stopping the night sweats have come back and my sleeping is getting weird again. I was prescribed it be a medical herbalist who has been very helpful for me.

Thanks for your input Rich - i personally dont mind if you come over to the ladies side to offer a bit of help. How can you find out about the genetic tests you talked about? i dont know much about that and find it a bit complex but i am very interested, could you point me in the right direction. I do know however that i have a blockage (dont know what) on my gene for SODase and my glutathione is low.

 

[leaves]

Rich Iwas thinking maybe milk thistle could be helpful for breaking down estrogen..