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ME/CFS and Beating the Clock
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Increased CFS symptoms and hormones ...

Discussion in 'Hormones' started by xchocoholic, Mar 22, 2010.

  1. mermaid

    mermaid Senior Member

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    Cornwall, UK
    Hi - I have pondered recently on the links with how I used to be with Pre Menstrual Syndrome before I had ME/CFS and how I am now (age 57 - periods ended at age 49). I used to have terrible PMS with awful fatigue, and kind of fluey pains in my muscles sometimes. The symptoms seem similar to what I get now with ME/CFS especially the brain fog element and fatigue. It got a lot worse with the peri menopause. I had been on the birth control pill until my 40s when I dropped it as decided I wanted to be invaded by as few chemicals as possible. I did develop an underactive thyroid in my early 40s and the thyroxine did ease some of the general fatigue at this stage, but not pre menstrually.

    I went to a medical herbalist for treatment for the menopause - had virtually no physical symptoms,(no sweats or flushes) and my periods just got very light and stopped. My symptoms were mostly mental with lots of low mood.

    Unfortunately for me, ME/CFS has developed entirely post menopause. At the very point in life when i was looking forward to "post menopausal zest" as I think Margaret Mead put it, I have gone down the tube. My 50s have not been what I expected and i feel sad about that but am coming to terms with it.
  2. xchocoholic

    xchocoholic Senior Member

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    Mermaid,

    I'm sorry to hear that you went downhill post menopause. Both for you and me ... ; )

    I've been feeling great (considering I still have CFS symptoms) up until this last episode of ovulating. And then I've been hit with increased allergies, digestive issues, insomnia from hell, etc ... These are subsiding now though ... kow ... so I'm hoping that was it for awhile ...

    The part you wrote about having thyroid problems immediately made me think gluten intolerance or celiac disease. When I went to my first celiac support group mtg and was complaining about being tired all the time, I was bombarded by members who told me to get my thryoid checked. Most of them had problems.

    You don't have to be a celiac to have gluten intolerance ... I wish I had a nickel for everytime I said that ... lol ... according to Doctorj and others, especially DAN (Defeat Autism Now), other foods can cause just as many problems as gluten. Gluten, dairy, soy and corn are the most common though ...

    Recent testing via my integrative doctor showed thyroid antibodies ... At this point we are chalking it up to leaky gut still and waiting to see if it gets better on it's own since I'm on a leaky gut protocal. hth ... Marcia
  3. mermaid

    mermaid Senior Member

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    Cornwall, UK
    Yes that reply is very interesting Marcia. In the UK we are on our own over so many things. It has taken a lifetime for me to work a lot of this stuff out for myself, and I have read lots on the subject re food intolerance, but somehow could not take it seriously until recently. I just kept talking myself out of it, even after I had been on an exclusion diet and improved! The thought of a life without wheat I simply could not face psychologically.

    My lifelong IBS and eventual gastritis in perimenopause should have really set me on the right road, but of course I never got the advice of exclusion from the GP - no they just shove medication at you which improved the symptoms but not the cause.

    It was only after symptoms became so bad they were unbearable that I took notice. By then I was getting abdominal pain followed by migraine combined with horrible depression (temporary while symptoms lasted). I got my blood tested by Dr Myhill for mito dysfunction, and followed her advice last autumn to go on the Stone Age Diet (which omits wheat and dairy). Symptoms gone instantly again!

    I started using Spelt wheat as I seemed to be able to tolerate a small amount, but am now intending to cut that too as I suspect that is not helping. I do have lapses still occasionally (and I have adapted the diet a bit e.g. I do have live yogurt), but like the Pavlov's dog experiment aversion therapy seems to be working for me! When I have the lapses the result are so miserable I am back on the wagon pretty quickly.

    I have found from experience now that I am best to avoid gluten altogether, though I can eat oats which I think are a grey area. I avoid as much processed food as I can and tend to have live yogurt and only small amounts of cheese. I love chocolate and that doesn't seem to harm me in small amounts. I do eat local honey, and nuts and seeds and dried fruit for sweetness cravings.
  4. xchocoholic

    xchocoholic Senior Member

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    Hi mermaid,

    That's great that Dr. Myhill recommended the Paleo diet to you. I really appreciate all she's done for us ...

    I completely understand what you're saying about missing those foods that we've become accustomed to. I actually teared up when I tried going out to eat with friends and family in the beginning. Now that I've figured out what I can eat, I'm ok ... FWIW ... I have some recipes here that may help you with this. Or you can just google recipes Paleo to get some ideas. I have a freind who eats a lot of Thai food now.

    According to the celiacs and gf people I talk with, oats are still a no no. Most people even have problems still with the certified gf ones.

    Have you tried coconut kefir ? We had a vegan restaurant locally where I can bought this but now I get it at my local HFS ... it's very expensive ($16 for 16 oz) so I ration it.. I got a few great ideas from that vegan restaurant though.

    Did Dr. Myhill mention oxalates to you ? Members of the DAN (Defeat Autism Now) community are finding that more and more autistic kids have problems with these. Meaning these are more common with people who have leaky guts than previously thought.

    I "think" giving these up helped my liver function improve to the point where I could finally digest supplements. It definitely helps my kidneys and keeps my vulvodynia at bay.

    TC ... good luck to you ... Marcia
  5. serenity

    serenity Senior Member

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    i am on full menstrual suppression, i take my pills daily without ever stopping them. it helps my symtoms very much.
  6. xchocoholic

    xchocoholic Senior Member

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    Hi danib

    Can you tell us what you're taking ?

    I just found this by Dr. Myhill and am still looking at all of this. This is a PDF so I had to type this in myself so there may be errors ... just in case the part about female hormones is on page 6 and says ...

    "Female hormones have marked immunodysruptive effects and malign effects on nutritional status. The extensive use of the oral contraceptive pill in young women probably accounts for the fact that 75% of CFS sufferers are women with the mean age onset of 29 - 35. These women are most likely to have been subject to many years of OCP (37). "

    http://balancedmedicine.co.uk/docs/library/17/myhill-cfs.pdf
  7. xchocoholic

    xchocoholic Senior Member

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    Some of this info may already be in this thread but I'm too busy right now to check it out ...

    I've been looking at this too because I was feeling great up until 2 months ago when I started ovulating AGAIN. I've been post menopausal for over a year and hadn't had to deal with any of this. I can't say that I've noticed any difference in my OI during this time but I've been feeling like poo most of the time for 2 months now ... I still HAVE to lay down every few hours in order to think straight.

    Some of this may help explain what's going on. I have CFS/ME/FM with OI and excercise intolerance.


    Originally Posted by richvank (GD-MCB researcher)

    Dr. Myhill (UK - CFS doc) says ...

    http://balancedmedicine.co.uk/docs/l...myhill-cfs.pdf

    This is a PDF so I had to type this in myself so there may be errors ... just in case the part about female hormones is on page 6 and says ...


    This idea is what I find most interesting. I have tons of allergies and antibodies so this wouldn't surprise me.

    http://www.sciencedaily.com/releases/2006/...60330182210.htm



    And then there's this on how candida can flare during our menses ...

    http://www.faqs.org/abstracts/Health/Candi...ul...cycle.html

    My symptoms this month weren't nearly as offensive as they were when I first started ovulating again back in April. I didn't see any increase in my allergy / rhinitis symtoms and the vaginal swelling and pain was minimal. What I had though was intense digestive problems like gastroparesis and gastritis that wouldn't resolve despite probiotics, digestive enzymes, ginger tea, etc ... all my normal digestive treatments. These resolved within 24 hours of starting my period though ... men are so lucky !!!


    Dx 1990 - CFS/FM (Gluten ataxia, myoclonus, insomnia, narcolepsy, OI / PEM, IBS, brain fog, MCS, low BP, FM trigger points, chronic fatigue, chronic UTIs and URIs). Labs show low BP, constant low body temp, viral titers, white lesions on brain, candida, multiple food allergies and intolerances. Dx - celiac 2007 (via DQ2, EGD 17 months post GF positive for damage, positive reaction to GF)
  8. xrayspex

    xrayspex Senior Member

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    u.s.a.
    This thread is helpful, I was just coming to PR to ask if estrogen can increase histamines. Looks like per above study it certainly could cause allergic response.

    I was trying the internal estrogen ("xxxx-fem") the last week on and off after it was prescribed to help specifically locally with issues, inject internally. NursePn said it would only act locally and no systemic estrogen effect....WRONG. actually felt ok about 4 days but then killer dangerous headache and nausea so stopped. Was rec'd to give another try in smaller dose in case not related so did that and headache is back, and wasn't having headaches for awhile lately so I am sure its related. What i dont know is if I could get the dose so low and infrequent I could tolerate and if it would even be worth it.

    Have been postmenopause for 5 years and definitely some things improved when stopped the cycle, grateful for that, but then other things got worse, like sex drive and motivation/passion for a few things like hobbies.

    Had tried bioidentical creams couple years ago and felt promodal on them (like I do now again--am bummed cus crashed this weekend, worse PEM and more sluggish than even usual. Lingering headache that threatens to get worse if make a wrong move......but interestingly benadryl helped curb the scary headache, can get an intercranial-hypertension-like-headache from wrong chemicals and worse if combined with spine irritation.

    well this bites, so do I just need to resign to not being interested in sex or being passioniate about art etc? anyone know a safer alternative than this "xxxx-fem" pill? I had some 2 year old prog cream from when I tried the bio creams few years ago and I put a little on when got the bad headache as I thought it might be an antidote for estrogen flare? (but that study above says prog. risky allergy too).
    What is an antidote for estrogen caused flare btw? besides benadryl which is not fun but better more brain dead than more brain pain.

    Also, I did do the bcpill age 18 '78 on and off til mid 20s and then again in early 30s where it was an immediate bust, posted about that at tannaist thread on testosterone. I had to have gall bladder out at age 29 when I was super fit which was odd but a doc told me that studies link bc pill with g.b. stones, fantastic......sigh
  9. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    According to my gyno the answer to that would be testosterone. She tends to give all her low sex drive patients testosterone. when she put me onto testosterone (not due to that... as my drive there is great), she said she believes it actually lowers estrogen (but also added that was a theory of hers).

    I still are worrying about testosterone but other than the bad incident i had the other day (where i was very wired! and hiped up which Ive now put down to overstimution on my brain due to doing too much web stuff), so far i seem to be fine.

    One interesting affect thou which could well be the testosterone, is im able to climax far easier ie almost instantly and multiple. My ability has been very slowed there (even with my high sex drive and high arousal levels of my brain) ever since ive had CFS/ME. Im sure this is one of those normally untalked about CFS/ME symptoms... its like i lost some physical sexual sensitivity so it was harder to get to that point. But anyway... for some reason (testosterone?), my sensitivity has gone back to how i was when i was a teen.

    I'll see if this lasts or if it was just some kind of once of event...

    ah and also possibly currently having the testosterone is making me feel more energy?? (im not sure). Thing is it isnt useful to me at all to feel more as i cant do anything more then i do otherwise i'd be risking a crash. (its like its working as a stimulant.. and as many know, those arent good for CFS/ME). So anyway.. i guess having a zero level of it may of been affecting me.

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