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Question for the ladies who see symptoms vary with their cycle

Discussion in 'Hormones' started by PDXhausted, Oct 28, 2013.

  1. PDXhausted

    PDXhausted Senior Member

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    My question is:

    If you saw your CFS symptoms vary with your menstrual cycle (specifically getting worse during the week before your period) before getting any CFS treatment, did this variation improve with:

    1. anti-viral treatment
    2. antibiotic treatment
    3. methylation treatment
    4. any other treatment
    5. still varies with cycle despite treatment



    Reason I am asking:

    I am in quite a mess the last few months. My CFS symptoms had been fairly predictable along with my menstrual cycle since going off long-term continuous birth control in Sept 2012.

    And then in Aug 2013, I had an ovarian cyst rupture during my period. It was brutally painful, but resolved within several hours. My CFS symptoms became worse throughout the month and I had some ovarian pain.

    In Sep 2013, during my period, I had another event that felt like an ovarian cyst rupture, though not quite as bad as the month prior. I'm assuming it was the same cyst still resolving though I haven't had it imaged. CFS symptoms were again worse, but no ovarian pain throughout the month. On the 21st day of my cycle (around when progesterone should be peaking), I had an unusual flu-like episode-- I had a day of excruciating bone pain that felt like the marrow was being scraped out of my bones, followed the next day by brutal muscle spasms in my right upper back, followed the next day by more bone pain and a flu-like malaise. During these three days, my usual CFS symptoms were slightly improved, but then came back as soon as the flu episode ended.

    In Oct 2013, I again had pain during my period, though it was much more widespread throughout my pelvis, and this time resulted in a fever that lasted about 24 hours. My ovaries and pelvis felt very swollen for several days but eventually healed up-- it felt like I had pelvic inflammatory disorder. I am just now at the 21st day of my cycle again, and I am again having a weird flu-like illness, but this time different. This time I am getting these hypoglycemic attacks, along with muscle fasciculations, tachycardia, shaking, and dry mouth, along with a flu-like malaise. They went all night last night and throughout the day today but are now improving. I expect this will go away in the next day or two like last month, but obviously I am carefully watching it.

    I feel like I have some kind of infection in my ovaries, but I don't have any STDs. And why now am I all the sudden getting these weird flu-like episodes corresponding exactly to when my progesterone should be peaking? We know that progesterone alters the immune system, so it must be somehow related, but it is frustrating. Anyway, I'm about a week away from my next period and scared that I will have another infection flare-up.

    So for those of you that have had infections dealt with and treated, have you ever seen anything like this? And what the heck is progesterone's problem? And referring back to my question above, I guess I'm looking for clues about whether progesterone affects symptoms of an infection.

    And to those that are shouting at your screens that I should go get tested for viral titers, lyme disease, cervical culture swab, etc: believe me, I want to!! I am in the process of working on this, but I have been bedbound for a year and my symptoms are so severe that I honestly feel like it would kill me to try and go to a doctor appt, even if there were a doctor near me that would be willing to do these tests. I keep hoping I'll find a supplement that will get me well enough to go to a dr appt, but it is an uphill battle. My pantry overfloweth with supplements.
    Last edited: Oct 28, 2013
    rosie26 likes this.
  2. rosie26

    rosie26 Senior Member

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    Hi PDXhausted. That bone marrow pain is excruciating. !!!! I had it in the first weeks of my collapse with severe ME. It was an unbearable ache/drawing out pain coming from the marrow out of the bone in my shin bone. I will never forget.

    I suffer with deterioration of ME a week before period, all throughout the last 12 years. I can't remember when I was on antibiotics whether it helped as I had so many other major symptoms going on.
    Be interesting to hear what others say about what may have helped

    The symptoms of ME sure do feel like some kind of infection.
  3. aimossy

    aimossy Senior Member

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    I have gone back on oral contraceptive after almost four months off them.it was so much harder with every symptom off them.i caved to going back on.two days back on the oral contraceptives it started to help me cope better,its nuts everyone is different.while I was off them flax seed oil helped with those hypoglycemic type attacks for me.
  4. justy

    justy Senior Member

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    Hi Pdx, its such an awful situation to be in when you are too ill to access medical treatment. It does sound like you may need an ultrasound scan and to see a Dr - but i do understand why you are not able to. What do you fdo for regular medical help? do you have a sympathetic GP who could see you at home?

    As far as your questions go - my symptoms all get much worse in the week before and then the week of my period, also my periods are extremely heavy and it feels brutally draining to be dealing with this on top of everything else.

    The only thing that has ever helped me has been taking herbs prescribed by me by a medical herbalist. Agnus castus helped me the most, but it hasnt been a cure by any means.

    The only other thing that changed my cycle etc was taking Armour - it seemed to re set my cycle to how it was when i was much younger - period not as heavy or as long and less tension etc but my cycle went back to 21 days which is what it used to be when i was young. So not altogheter a good result. I had to stop taking the Armour due to other issues with it and now my cycle is messed up again and i have been having period pain for the last 3 weeks but no period.

    I do hope you manage to find some answers and relief .

    Take care,
    Justy x
  5. WoolPippi

    WoolPippi Senior Member

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    Before CFS treatment i treated this with progesterone, rest and lithium. This helped some with the CFS symptoms, but more so with the sheer lunacy of PMS.

    In my experience prog.cream has no effect on infections. But then, I have no notable infections since CFS treatment due to ridiculously low cortisol which turns my immune system into a screaming diva, keeping all infections at bay. (Under the surface I may have Lyme or other nasties but I don't know.)

    CFS still varies with my cycle. I am good a few days after my period, the estrogens are a booster.
    On day 3 however I need the prog.cream to balance the estrogens because, you know, lunacy... Oh and prog. is a building block for cortisol and all other kinds of adrenal hormones so slather it on darling!

    Hope this info helps a bit, I hope you are well.
  6. PDXhausted

    PDXhausted Senior Member

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    Thank you ladies for responding! I have been wanting to write a nice detailed response to each of you, but I have been in a bad way. So I'll just give an update.

    So last I left off was on day 21 of my cycle and having weird hypoglycemia like attacks, along with other sickly symptoms. Those lasted a hellish three days, and then improved. I think in retrospect it might have been catabolism and adrenal/dysautonomic issues, but I'm not totally sure. Days 24-31 of my cycle were ok-ish mixed with debilitating episodes of what I think was dysautonomia.

    Finally, day 1 of my period and I was finally starting to feel better. Well enough that I decided to carefully venture upstairs and take a shower for the first time in two weeks. Well that was a mistake because it landed me with probably the worst episode of PEM combined with dysautonomia I've ever had. I honestly thought I was going to go into cardiac arrest. So that was maybe my last shower ever.

    Day 2, I was starting to come out of it, then woke that night with an excruciating ovarian cyst rupture. It was brutal. My body was compensating with enough adrenaline at that point that my CFS symptoms kind of ceased and i was just in terrifying pain. It resolved within a couple hours and I managed to get a little sleep. And then the next morning I woke up with pneumonia. Like fever, cough, hurts to breathe/cough, congestion, malaise. Huh?? How do you get pneumonia from a cyst rupture?? Probably had to do with changes in my immune system, but was so bizarre. The pneumonia resolved by the next day.

    The days following have been pretty awful. Alternating between feeling slightly ok, to horrible catabolic hunger feeling like I'm going to die, to feeling slightly better, to PEM crash just from the slightest exertion. I suspect what is happening is that the inflammation on my ovaries has screwed up my hormones and possibly some of my adrenal signals as well.

    The good news is, I have found a doctor that is going to do a house call next week and do all the recommended CFS blood work and I've also contacted Dr Enlander's office to do a Skype consult once i get the blood work back. But at this point I hope they find something or anything to treat because I'm not sure i will live through my next period. I probably need to go back on continuous birth control to prevent the cysts from forming, but I was having similar problems from the exogenous hormones so I'm not sure. It's like a no-win situation. But we'll see. Crossing my fingers that something turns up in the blood work or that this new doctor has some ideas.

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