M.E. & The Menopause

I started puberty early, with breast development at 7 and periods at 11.  My periods have always been excruciatingly painful, which I now know is probably a combination of Ehlers-Danlos and Mast Cell Disease, with possible endometriosis thrown in for good measure (I have no intention of having surgery to find out, having lived with the pain now for 35 years).  Despite that, my periods have always been regular as clockwork – I could often tell to the hour when they would arrive, usually at 2am for some reason I can’t fathom!  Along with the pain came nausea, diarrhoea, menstrual migraines, insomnia and crushing fatigue.  As if this wasn’t bad enough, I’ve also always had painful ovulation (the technical name for which is Mittelschmerz). For 3 days mid-cycle I’ve always had awful insomnia, nausea, terrible back pain and cramping, stabbing period-like pain.  Being a girl sucks.

When I was very ill with M.E. my periods absolutely floored me and I honestly felt at times like I was dying.  I tried the contraceptive Pill which made me suicidally depressed, and shouldn’t have been prescribed in any event as I was bedridden and the risk of thrombosis (ie fatal blood clots) was all too real.  And for the past 15 years I haven’t been able to take pain killers either due to anaphylactic mast cell reactions.  I’ve also had god-awful reactions to both homeopathy and supplements.  I’ve basically had to just get on with it, using numerous hot water bottles, gel migraine strips, sea-bands for nausea and my TENS machine.

I didn’t think it could get any worse.  Think again.  About 18 months ago, at the age of 45, I entered peri-menopause.  There were probably signs before that, but because night sweats, fatigue and dizziness are all included in M.E., and flushing is included in MCAD, I just didn’t twig that the menopause was looming.  Until my periods started to go haywire.  I went from my usual 28 day cycles, to alternating between 21-24 days and 29-31 days – I personally seem to alternate each month, one month being a short cycle and the next being a long one.  The length of my bleeding hasn’t changed, but I can now also spot for up to 5 days after my period has finished.

Photo of peri-menopause menstrual cycle chart

My “allergy” symptoms have gone through the roof.  At times my skin feels like it’s being tickled all over by feathers – it’s really disconcerting, because I could swear something is physically touching my skin yet nothing is there.  I itch “down below” and must look very unladylike constantly scratching my crotch!  What little sleep I used to get has gone completely awol – I’m not awake due to night sweats, I just simply can’t stay asleep despite being so exhausted I can’t keep my eyes open past 9pm (but then wake every night at 1am and toss and turn until dawn!).  My sometimes fragile emotions are now on a permanent knife edge – I feel depressed most of the time and the lid I used to keep on my irritability has been lost in the wash!  I feel weepy.  A lot.  This is new for me as I’m simply not a person who cries much.  I feel overwhelmed and unmotivated and just generally crap.

I hadn’t subluxed (ie. partially dislocated) any joints before starting the peri-menopause, and now I’ve had four subluxations in less than 10 months.  The week before my period my collagen was always super stretchy due to changes in hormones, but now it seems my collagen is super stretchy all of the time and I’m increasingly worried I’ll start to actually dislocate my really hypermobile joints (eg. spine, shoulders, wrists, fingers, ankles).  When my periods were regular I used to make sure I wore all my joint supports and braces in the run up to my menstrual cycle, but now I have no idea when my period will be it’s just impossible to prepare.  I can’t bear my joint supports on in any event as my skin is just too painful.

November has been the worst month I’ve had in quite a few years.  I’ve spent several days in bed which I haven’t needed to do in a lonnnng time.  I feel very MEish: fluey, achy, completely drained and weak, with burning hot muscles and skin.  Constant sore throat, awful brain fog, severe nausea, crippling exhaustion.  My joints, knees in particular, are killing me – I feel like I have toothache all over my body.  As these symptoms have coincided with my starting the H1 anti-histamine Cetirizine I wondered if that was the cause, so I stopped it 3 days ago.  I’ve felt worse than ever.  But this has also coincided with ovulation, so now I’m wondering if that’s the reason I’m stuck in bed feeling like some dead corpse my dog dug up.  I was so nauseous yesterday all I managed to eat was 2 tiny slices of gluten-free toast, plus a cup of warm milk before bed.  My heartburn was awful, after being really really good for the past 3 weeks.  I barely slept a wink last night.

Today, as yesterday, I am stuck in bed terrified I am starting with an M.E. relapse.  My relapses often start like this: symptoms slowly stacking up, with me trying hard to ignore them.  Then they get so intrusive I can no longer ignore them and I know a period of being confined to bed is on the horizon.  The thing that worries me most is that I never know how long the relapse will last.  Days?  Weeks? Months?  The next 10 years?  Forever?  Is the peri-menopause to blame?  Are the anti-histamines to blame?  Is it just the time of year (I’m always, always ill over Christmas)?  I just don’t know and the not knowing is scary.  I’ll stay off the H1 anti-histamine for the next few days and see what happens.  If I don’t improve I’ll go back on it, because since stopping it my heartburn has worsened.

It’s a stunningly beautiful winters day here today: blue skies, foggy sunshine, crisp freezing temperatures.  I’d love to be taking my little dog out in the woods, feeling the crinkling leaves under my feet and seeing him bounding around in the bracken.  Instead I’ll struggle to go up the road through my village on my mobility scooter, with poor Bertie on his lead tied to my waist, and will come back feeling like I’ve been battered by a hammer.

It’s so tiring managing all these illnesses.  I never know what’s causing what and because of that I don’t know how to manage the symptoms effectively.  Please don’t tell me to go and get my hormones or my thyroid checked – I had all that done several months ago.  And the thought of trying Black Cohosh or DHEA, or progesterone cream or HRT or anything else that helps ‘normal’ people terrifies me – I just couldn’t cope with a mast cell reaction on top of already feeling this ill.  However bad it gets I’m just going to have to ride it out.  As my periods have always been horrendous, I’ve looked forward to the actual menopause and my periods being over and done with.  I only hope I can survive the transition period with my body and mental health intact.


4 thoughts on “M.E. & The Menopause

  1. Sherry

    I hesitate…trying to find the best words to tell you something…but I am working out what it is I want you to know…and I am hoping, really hoping, that what I say is…is worthy of your experience.

    I will start by telling you that, although our stories are different, I can relate to the despair you struggle with; the exhaustion so heightened that one becomes almost unable to trust even their own mind; their own perception. There are few people in our lives, sometimes none, that can understand the relentless battering of our bodies – and of our minds in the process – as we deal with a chronic debilitating illness. It is an all consuming experience. We strive for balance each and every moment because if we do not, we will…we will what? Lose our minds? For some of us, that might appear as a blessing (during our deepest despair) – and we might long to close our eyes and open them (so to speak) where ever it is we go after this Earthly experience. But, in reality, we lay awake alone in our beds, on our couches – and watch the shadows crawl across the ceiling as the sun and moon set and rise. We strive to simply get through our moments instead of being able to just be in them. We must be constantly monitoring and adjusting ourselves to accommodate our symptoms…and yet, for me, my hellish illness – although I battled it fiercely for years before I knew the futility in that – has, by force, caused me to experience certain moments so fully; way, way more than when I was healthy, that I feel overwhelmed with joy. Yes, joy – smack dab in the middle of my despair. So fleeting that it falls away like water from my hand – but I DID feel it – and I felt it fully…and with that I find momentary peace. Momentary…yes, but very real peace – despite my bodies attempt to fell me. And, I take solace in this – no matter how brief. I want that moment of grace to last for as long as I can have it.

    The struggle for balance will likely never end for me. No, not likely (unless an extraordinarily accurate diagnosis followed by fantastic management of symptoms or a cure arrive – kind of a miracle of sorts). And I am at times thoroughly defeated by this fact. I am not chirpy and full of joy in this moment…no, I am trying to figure out how I can manage going out for some groceries and how to find a way to get out to do some Christmas shopping – that is if I can manage to shower first – and to dry my hair – and to get dressed – all of which lead to heightened pain and exhaustion…no, I am not all perky and attempting to get you to follow my lead…no, I just want you to know, somehow, that no matter how overwhelmed, low and isolated you may feel – you are loved – yes loved – by a complete stranger…and you are never alone in this world.

    I know these words can be either a blessing or the complete opposite – but my intention is raw compassion because I totally get it. I totally do.

    And, as a direct comment toward menstruation and these symptoms of ours – for me, yes, all symptoms were heightened by my period and, over time, my illness did screw up my periods. I am older than you (52). But, perimenopause started early for me as well and I was always sicker during the days just before my period began and during it. It also became impossible to anticipate my cycle as it changed from long to short, from light to heavy, relentless spotting — all that loveliness. There must be a relationship as hormones are involved. In the end, in my forties – via two surgeries – I am left with just ovaries. It wasn’t an easy decision to have those surgeries (emotionally that is – this was before I knew how badly my body reacts to surgery) but, in the end, I no longer have those parts of my body in the equation while looking for answers, understanding, and relief.

    Sorry, not much help from me but, again, I thank you for your candidness in the telling of your experiences.


    Liked by 1 person

  2. knittedfog

    Hi There,
    I also have ME and struggle with temperature control issues! Sweats at all times of the day and night, with me stripping off all layers of clothing – exhausting in itself – as if we don’t have enough to deal with!
    Sorry I’ve no advice or words of comfort, the ME and the Menopause both SUCK.
    But sending you positive thoughts anyway.



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