Increased CFS symptoms and hormones ...

mermaid

Senior Member
Messages
626
Likes
1,166
Location
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.
 

xchocoholic

Senior Member
Messages
2,947
Likes
1,693
Location
Florida
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.
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
 

mermaid

Senior Member
Messages
626
Likes
1,166
Location
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.
 

xchocoholic

Senior Member
Messages
2,947
Likes
1,693
Location
Florida
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
 

serenity

Senior Member
Messages
571
Likes
7
Location
Austin
i am on full menstrual suppression, i take my pills daily without ever stopping them. it helps my symtoms very much.
 

xchocoholic

Senior Member
Messages
2,947
Likes
1,693
Location
Florida
i am on full menstrual suppression, i take my pills daily without ever stopping them. it helps my symtoms very much.
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
 

xchocoholic

Senior Member
Messages
2,947
Likes
1,693
Location
Florida
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)

"That's what I suggest goes on. I don't doubt that the increase in blood volume during pregnancy also helps. And not having to break down and get rid of estrogen every month would also be a big help, because, as I suggested in a 2007 IACFS poster paper, I think this is what causes CFS to be more prevalent in women than in men. Those who inherit certain polymorphisms experience redox cycling when their bodies are disposing of estrogen, and this biases them toward oxidative stress and glutathione depletion, which I've suggested is what leads to the onset of CFS in people who are genetically predisposed."
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 ...


"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). "
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



Evidence Of Estrogen And Progesterone Hormone Allergy Discovered

ScienceDaily (Mar. 30, 2006) — AUSTIN, Texas--Some women with menstrual cycle disorders like asthma and migraine headaches may be experiencing allergies to their own estrogen and progesterone hormones, Texas researchers have discovered.

Russell Roby, M.D., director of the Roby Institute, Dr. **** Richardson, professor at The University of Texas at Austin, and Dr. Aristo Vojdani, of Immunosciences Lab, Inc. in California, found that female patients who experienced health changes during their menstrual cycle had higher levels of IgE antibodies against progesterone and estrogen than control subjects. An increase in IgE antibodies is typically associated with allergic response.

The researchers published their findings in the March 27 issue of the American Journal of Reproductive Immunology.

"This is going to explain a lot of unexplained illnesses," says Roby, alumnus of The University of Texas at Austin. "The primary disorders are premenstrual asthma, menstrual migraines, interstitial cystitis and fibromyalgia. We have no idea what causes these things, but they are definitely linked to hormonal cycles."

The researchers studied blood samples from healthy women and women who experienced symptoms associated with their menstrual cycles, like asthma, migraines and joint pain. A significant number of patients in the latter group showed high levels of IgG, IgM and IgE antibodies against estrogen and progesterone.

Antibodies play a critical role in immune response and are produced by the body in response to antigens, molecules the body recognizes as foreign.

Hormones haven't been implicated in allergic response in the past, because it was thought that hormone molecules were too small to create an allergic response. The researchers found that estrogen and progesterone combine with other proteins and that the hormone part of the molecular complex is recognized as the antigen.

"We have shown that IgE antibodies, Type 1-immediate allergy antibodies, are produced against estrogen and progesterone," says Roby. "This opens a whole new area of treatment possibilities."

Roby says that in the process of the clinical study, it was found that symptoms could be diminished by very low concentrations of progesterone, which served both as a diagnostic feature and for symptomatic relief when needed.
And then there's this on how candida can flare during our menses ...

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

Candida albicans: cellular immune system interactions during different stages of the menstrual cycle

Article Abstract:

Candida albicans is a yeast-like fungus, normally present in the vaginal tract, which causes vaginal infections when it grows beyond controlled levels. For many women candida infections are not eliminated by conventional treatments.

Recurrent infections occur more often in pregnant women, women using birth control pills, and right before the onset of menstruation. Therefore, it is suggested that high estrogen and progesterone hormone levels increase susceptibility to vaginal candida infection.

The ability for the candida organism to adhere to the cells of the vagina and optimal conditions for growth determine whether candida will flourish. To determine the factors which influence growth, the immune response of healthy women with a history of candida infections was studied during the menstrual cycle.

Blood samples obtained during different phases of the menstrual cycle were used to grow candida in the laboratory. Candida albicans grew best in blood serum taking during the luteal phase of the menstrual cycle, the period just before menstruation.

Cellular immune responses were diminished, affecting the ability of cells to fight infecting organisms, and the ability to prevent continued growth of organisms.

Fluctuations in hormone levels produced by oral contraceptives explained changes in the immune response to candida in this population.

Candida vaginal infections which appear before menstruation are the result of altered immune function.

author: Witkin, Steven S., Kalo-Klein, Aliza
Publisher: Elsevier B.V.
Publication Name: American Journal of Obstetrics and Gynecology
Subject: Health
ISSN: 0002-9378
Year: 1989

Infection, Causes of, Candidiasis, Menstrual cycle, Vagina, Candida albicans


Read more: http://www.faqs.org/abstracts/Health/Candi...ul...z0pLaAFWQ7

--------------------
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)
 

xrayspex

Senior Member
Messages
1,097
Likes
380
Location
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
 

taniaaust1

Senior Member
Messages
13,025
Likes
15,418
Location
Sth Australia
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.sigh
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.