The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Pre period window of improvement.

Discussion in 'Hormones' started by Maria1, Nov 14, 2015.

  1. Maria1

    Maria1 Senior Member

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    Something which makes no sense has happened which I wanted to share here because it feels significant. It might mean some thing to others.

    I got ill with sudden onset at Christmas 3 years ago. I couldn't tell you whether or not I had a virus at the time. I vaguely remember having a cold around that time but various viruses were coming and going frequently- I have school age children.

    That Christmas, I clearly remember sitting down and feeling like I couldn't get up. It was a very busy time; I'd been pushing myself but I was used to that. I did get up, but the heaviness, exhaustion, and leg and arm pains didn't leave. I thought I was anaemic as I had been a year previously. When my bloods came back 'normal', my GP suggested CFS.

    I only really started to believe I had ME/ CFS weeks later when I was no better and decided to hit the gym. That's when I discovered PEM and I have kept on 'discovering' PEM ever since.

    I used to get some CFS symptoms for a few days prior to my period. I also got menstrual migraines and these migraines became more chronic over the years.

    Looking back now, I would get some CFS type symptoms in the week before my period. I would walk into doors, get words jumbled up. At times, I would get in the car to drive and feel unable to do-ordinate everything to do so. I remember getting very tired, but it's hard to say if it was the same as the fatigue I have now, because it didn't last long. I never thought of it as a problem, just PMT. I was aware that the cognitive stuff seemed more extreme for me than other though.

    Anyway, I'm now 48 and menopausal confirmed by blood work. My periods stopped for 6 months, then I had one, then another 10 week gap.

    So here's the nonsensical thing: I had 4 or 5 days a while back where I felt almost normal. During this time I mowed the lawn and did not get PEM (I always get delayed onset PEM from mowing the lawn). I was waiting for the PEM to hit and it didn't; I just carried on feeling almost normal, tired, knackered in fact, but pretty normal, not ill. My brain was functioning almost normally. My body was coordinating normally. I was still pacing and felt I needed to be careful but this was a huge change for me. Then, at the end of the 4/5 days, I got my first period in 6 months.

    I couldn't get my head around the period being significant. Why would I feel better BEFORE my period now that I'm menopausal and with ME/CFS?? Whatever hormonal mix changed pre period to cause symptoms similar to brain fog now is causing those chronic symptoms to lift. The improvement didn't last.

    However, 10 weeks on and I have just had another good week. I started to think I'm getting better, that something is working. I did some physical work in the garden, took my kids into town- again no PEM. I can't say I feel great exactly, but to feel anywhere near normal is such a huge change. I had energy.

    I re-ordered all the supplements I've been taking this week! I keep thinking of the TV show the Leftovers where people in the unaffected town of Miracle keep trying to recreate the exact moment that people disappeared, in case something they were doing at the time protected them.

    Then, just like last time, on around the 5th 'good' day my period started.

    So... It's got to be hormones- hasn't it? And in what way? I've googled to try and find anything on people feeling better BEFORE periods during menopause but not got anywhere. I'm assuming something to do with progesterone/ oestrogen balance but I'm not bright enough to work it out. Although my brain fog has been better I'm nowhere near normal intellectually.

    Has anybody else experienced anything similar? Or does anybody understand what could be going on chemically?
     
  2. CantThink

    CantThink Senior Member

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    I believe that in menstruating women progesterone peaks around day 21 (so a week before the 28 day mark when regular periods tend to start). As the period starts progesterone drops and estrogen climbs.

    In the menopause both these hormones steadily decline.

    So it sounds as if now your body is responding well to progesterone increase during the luteal phase. Why it didn't before... I don't have any ideas.

    Have you looked into the relationship between sex hormones and thyroid/cortisol levels? It is possible one is affecting the other.

    I have low progesterone. As progesterone and estrogen work in a ratio with each other, having it out of balance makes me estrogen dominant and I do not feel well from that. When the progesterone deficiency is addressed, I feel a certain benefit from it. I can certainly tell the difference though I am still quite ill.
     
  3. panckage

    panckage Senior Member

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    @Maria1 I've never had a period so I can only indirectly relate to that us boys deal with many messy things too :rofl: but yes many times I have taken things that have made me almost normal (among them: LDN, kratom, tramadol, ritalin, very small amounts of marijuana) . They help instantly when I take them seem to work really well for a few days/weeks but they lose most of their effect over time... Until I'm off them for a while and then all the positive effects return for a period

    It feels like my body has built up an overabundance of 'nutrients' but is deficient in a single 'nutrient. ' when I give my body the deficient nutrient it works fine until it runs out of gas. Then I need rest and repeat the process in another few days/weeks/months

    I've read about a few women to get remission from cfs when they are pregnant which implies hormones as well
     
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  4. harveythecat

    harveythecat

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    I always wonder about periods too because I always feel much worse/have way less energy/all ME symptoms worse in the week running up to them, then very bad for first two days of period and much better when it is over (just as you said you did before this pattern reversed with the menopause.) It must be hormones? Anyway, I'm so glad you're feeling better!
     
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  5. Maria1

    Maria1 Senior Member

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    Thanks so much for your replies folks.

    I'm struggling to reply individually as I've overdone it a bit with the excitement of having energy. Mental tasks probably outweigh physical tasks in terms of difficulty for me overall with this illness. I used to write without a second thought- now it feels like my brain is full of holes and the simplest thoughts don't connect.

    I'm hypothyroid, and about a year into treatment on levothyroxine. I have been on the highest dose of levo about 4 months now, which leaves my TSH around 0. My constant hot flushes stopped a couple of months ago, and I do think the thyroid has something to do with the overall balance of other hormones.

    I was thinking about HRT of some sort, and requesting a referral, but I have decided to leave be. I have always been highly sensitive to synthetic hormones, never tolerated the contraceptive pill, even in lowest doses.

    6 months or so before getting ill with ME/CFS I had a mirena IUDs fitted, despite my better judgement. I was anaemic and my periods were so heavy I was advised by GP and docs that it was better option than surgery. I can't help wondering now whether this threw something further out of balance hormonally. I had it removed in JNuary this year to see if it made a difference to my symptoms. I was thinking it hadn't but now I'm wondering whether my body is finally adjusting.

    Also thinking about people with CFS with chemical sensitivities. I don't have that fortunately, but maybe there is a subset of us who 'over' react to internal chemicals. It would be one explanation for what's gone on with me.

    Thanks again for taking the time to respond harveythecat, panckage, and CantThink. Sending you warm wishes for health.:)
     
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  6. hellytheelephant

    hellytheelephant Senior Member

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    It's so lovely to be in good company with other women who are also taking an unwanted ride on the rollercoaster of hormones.:eek::bang-head: :aghhh:

    I have often noticed a shift in cfs the week before my period, but it is not totally consistent. I often feel swamped with sleepiness.( more than usual) the week before.and am usually better after.the first two days of the period- apart from the last day when I get a migraine!

    . I am 47 and am perimenopausal. For me, progesterone cream is really helpful- I can't tolerate the side effects of the pill, so don't want to take HRT unless I have to.

    Between being a teenager ( and possibly having a mum crazy with menopause.),trying not to get pregnant, PMS, trying to get pregnant, perimenopause, menopause, and post menopause.....I just wonder when there is a time in our lives when we are NOT defined by hormones.?:rolleyes:
     
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  7. digital dog

    digital dog Senior Member

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    Maria,

    I am EXACTLY the same. I am 42 and not menopausal but could be peri I suppose. There's definitely something going crazy!

    I get PMT, but all my other symptoms get BETTER a week before my period. I find it astounding as it USED to be my worst time but now I find myself looking forward to it...even though I know I will be premenstrual.

    I have found this week to be much better than all other weeks (days 8-12 being the worst) and I have no idea how this can be the case.

    I have tried hormones but I am SEVERELY intolerant to oestrogen so keep well away. I have no idea what I will do when I go through menopause as I can't even sleep now! I am too scared to try progesterone but will if things get worse.

    I DEFINITELY think that I have some sort of sensitivity to my own hormones. I feel, perhaps, I do not have CFS but hormone regulation problems. I am completely governed by hormones but in a different way to others...until you Maria!

    Now here's the bizarre part: I am now wearing a ladymagnet as it was offered to me for free and I thought I had nothing to lose. I was/am so very sceptical but I actually think things are changing. If I get better from this device I will probably build a house with magnets and sleep on a magnetic bed. :lol: It all sounds so unlikely and ridiculous but I feel different and it is NOT placebo. I will keep you informed.

    Why is the week before my period the best week? It is a mystery which I've personally given up on trying to work out. My husband doesn't know what to think...he is so preprogrammed for that week to be a disaster that when he sees me smiling (no small achievement) he's confused.

    I don't think we'd be able to work it out even if we had daily blood tests. Thats why I have given up trying.

    X
     
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  8. hellytheelephant

    hellytheelephant Senior Member

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    digitaldog thanks for educating me on the ladymagnet- I have never heard of it, but a quick google confirms they are helping many women. {lease keep us posted on how it goes....

    Don't give up on the idea of natural progesterone- if you are lacking then the Progest cream could really help balance things out. When I used it for PMS when I was younger, it worked so well I thought I no longer had a problem and stopped taking it- all my symptoms came back to remind me how well the cream had worked..
    I have been taking it for about 6 months at the moment and it really helps me. with Perimeno.

    You can use this symptom- checker to see if you are progesterone/estrogen deficient:

    http://www.johnleemd.com/hormone-balance-test-symptom-checker.html
     
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  9. digital dog

    digital dog Senior Member

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    Helly,

    I am extremely sceptical about this magnet but I have noticed a change. I still think that it is due to coincidence but the change is enough for me to have the magnet on 24 hours a day just incase. Bonkers really!

    In a few more years I will probably try progesterone. I have tried Progest which is a natural progesterone cream which didn't suit me but will probably have to try something else at a later date.

    The thing that reassures me is that some women do not take anything for meno and do okay. i am hoping that in the grand scheme of all this crap the menopause will just be an added inconvenience.

    I bloody hope so.

    I am so sensitive to things that I doubt I will be able to tolerate anything.
     
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  10. bluelight

    bluelight

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    Hi ladies here's a bit about me and hormones just to add a bit of thought to what your saying about it all. I had m.e./cfs for 5 years, then I hit the menopause and didn't even go to my Dr about it or remember much about it, as the m.e. took over my life 24/7 so I took no supplements or hormone replacement's at all. Iv been period free for the last 4 years and nothings changed with the m.e./cfs. I still feel as if im in a dark box and when I have a few good days im always waiting for the hammer to fall.
     
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  11. digital dog

    digital dog Senior Member

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    Blue light. Thank you for this post and I am really sorry about what we are all going through.

    It is so hard to have relatively good days and then the inevitable hits.

    It's so hard.
     
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  12. Maria1

    Maria1 Senior Member

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    Glad to see more of us joining this thread :) I keep wondering whether there could be an autoimmune response to a particular hormone going on, but I don't understand enough about how autoimmunity works. As I understand it with the thyroid it's the thyroid gland that gets attacked by the antibodies, but I don't know what, if anything could be seen as the 'imposter' with other hormones? That probably makes no sense scientifically but hormones seem to play such a part in this illness. There is research that women who have had gynaecological problems are more likely to get CFS, and more likely to get early menopause.

    The only thing I noticed pmt wise, before my last period, was that my thighs were really hurting when I walked. It's a sort of weird vibrate pain at the front, as if there's a painful fluid in them that I only notice when I move, or when I touch them.

    I've got that again now, only I'm not feeling full of energy this time; I think my period is about a week away, if I was back to a normal cycle. However, I've been totally overdoing it and unable to pace myself at all this week. The leg pain is really distracting! I'm waiting for my energy lift but I think Christmas will cancel it out. All in all though, I am doing much better. I'm hopeful that's because I'm moving further through menopause. @bluelight I'm sorry that's not been your experience. Did you consider HRT?

    @hellytheelephant- I know just what you mean about our lives being governed by hormones. I have wondered about progesterone cream, still pondering ...

    @digital dog I know you've written about thyroid elsewhere. I think it's he,led me to get thyroid treated, but it's taking a long time ( a year)

    Sorry, I start to post and am worn out by the end of writing. Enjoying everyone's responses and finding helpful even if I don't comment.
     
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  13. digital dog

    digital dog Senior Member

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    I get the leg pain thing too. It is like a growing pain or tooth ache for me. Quite a unique feeling though and only at front of thighs. I think it is related to my cycle and ovulation but I can't be sure.

    I so hope I get an early menopause. To be honest, I feel that stopping my periods may help me; obviously i could be wrong and it could make things much much worse. Do you feel better since stopping (almost) Maria?

    Maria, do you get insomnia? I know that mine is related to hormones but I can't work out why. I have given up working it all out as it is too complicated and Im a complete anomaly so what SHOULD be happening will not be with me. Last three nights less than five hours each night. Feel okay but can't sleep so feel battered.

    I never feel balanced. NEVER. There is always something going on.
    X
     
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  14. digital dog

    digital dog Senior Member

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    Im also tempted to try progesterone.
    Cant face anything at the moment but maybe in the Spring.
     
  15. PennyIA

    PennyIA Senior Member

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    I'm still premenapausal, and also experience more tiredness the week before and MUCH worse symptoms the day my cycle starts... I really liked the link from @hellytheelephant and find I have estrogen dominance and adrenal fatigue (no suprise either of those)... but just curious... Does anyone know what treatments are there if hormones aren't an option?

    FWIW, I've suspected estrogen dominance for a while - and have been avoiding soy and trying to do other lifestyle and dietary changes based on avoiding chemicals, etc...

    I have the unlucky genetics that make me clot easily and hormones triggered my last major clotting event... so taking hormones is never something my doctors will approve easily. I'm at the point of thinking I'm ready to TRY TO deal with regular doctors if I have something treatable; but don't want to waste my time and money getting official tests if they are just going to come back with a result but no treatments.
     
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  16. hellytheelephant

    hellytheelephant Senior Member

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  17. Maria1

    Maria1 Senior Member

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    I was perimenopausal when CFS hit, now Im officially menopausal and I'm feeling a bit better overall, as long as I pace. I have no idea whether the improvement is linked to the menopause but it would be nice to think that the end is in sight! I sometimes think that hope is not a bad medicine in the absence of any other reliable treatment options :)
     
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  18. digital dog

    digital dog Senior Member

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    I was actually thinking today that perhaps the meno will make me feel better. Wishful thinking I imagine but perhaps a radical hormone shift is what I need.
     
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  19. hellytheelephant

    hellytheelephant Senior Member

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    Any of you ladies in peri-meno experiencing severely dry skin-particularly around the eyes?
    I had never heard of this as a symptom, but googling it seems as if it is.
     
  20. South

    South Senior Member

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    Please everyone, if you "suspect estrogen dominance" get tested - that phrase gets tossed around so freely on the Internet but there are problems that can be cause from estrogen DEFICIENCY (yes, even in younger women) too.

    Going by symptom lists, and trying to avoid certain foods that are reputed to raise estrogen, did nothing for my hormonal problems. (this is back in my 30's). Progesterone isn't a substitute for estrogen, despite marketing by over the counter progesterone cream companies, if one's problem is low estrogen not low progesterone.

    Getting tested, and finding out that I was too low in estrogen then, was the answer for me, and is for certain groups of women. Bioidentical replacement at a very low dose, in patch form, helped me a great deal.

    It's best to get tested by a doctor who is educated in bioidentical products, otherwise, if you test low, you'll get handed advice to use the non-bioidentical products, which are full of problems.

    Elizabeth Vliet, MD has a good book on the different forms of estrogen on the market - the bioidentical ones do not have the evil problems that the common mainstream medicine "pill" non-bioidentical products have. Her books are on Amazon.

    The very low dose bioidentical estro patch I used for a few years helped my hormone and mood issues, even at that very low dose I used.

    Note that I do not have ME/CFS.

    Since then, I changed my diet and lifestyle to help my adrenals (some say this is related to other hormone issues), and have used liver support (Practitioners in China have employed liver support for decades to indirectly solve many hormone imbalances). These steps have helped me reduce my use of the bioidentical estrogen to almost none, with no return of hormone problems or mood issues.

    Anyway, the original test I got that revealed that problem for me was a saliva test. The doctor had it done by a lab called ZRT labs, but there are several other labs in the US, and probably other countries, that do it via saliva testing.
     

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