Menstrual Migraines

I started charting my migraines in tandem with my menstrual cycle in 2009 in the hopes that I could find some kind of pattern.  Below is my first chart and it turns out that in 2009 I had an almost permanent bad head and migraines which often lasted 3 days straight 😦  The numbers along the top of the chart are the days of my menstrual cycle.  Down the left are the months of the year.  The grey blocks on the left are my actual period (as you can see it didn’t last long!), and the grey area on the right just marks how long my cycle was that month, eg. in Dec08 (the first entry) my cycle was 27 days long and in Jan09 my cycle was 29 days long.  It’s clear from the chart that I hadn’t started peri-menopause yet and my cycles were regular as clockwork at between 27 and 29 days.

M=migraine h=headache

In 2013 I started my low histamine diet but I was so ill at the time I wasn’t able to keep my charting up, so the next set of data I have is from 2015.  I think you can see that after 18 months of eating low histamine foods my migraines have improved substantially and my headaches have disappeared completely, yayyyy 😀  However, you can also see that I am now in peri-menopause.  My periods often last a day longer while my cycles are getting shorter sometimes down to 21 days.

I also think it’s clear from the chart that my migraines are now linked to my menstrual cycle with migraines worse during bleeding, mid cycle and again just before the cycle ends and this pattern has continued.

Below is 2017s chart and as you can see there’s about an 80% chance of me having a migraine while I’m having my period which, as the peri-menopause progresses, are getting longer still having gone from two days in 2009 to sometimes five days in 2017.  There are then zero migraines in the week following my period – happy days :-).  Mid cycle, however, following ovulation which for me is usually around day 12 there is about a 65% chance of a migraine often lasting for more than one day.  Then usually another quiet spell until two days before my period begins when there’s around a 75% chance of a migraine.

So what’s going on with our hormones and why are they giving me a sodding headache?!  There are three main menstrual hormones: oestrogen (or estrogen if you’re American), progesterone and testosterone.  Testosterone is often left out of the hormone equation but I know that for me it plays a big role and is probably responsible for my rampant sex drive at certain times of the month!

In the first few days of the cycle, while we’re actually bleeding, all hormones are very low and my chances of a migraine are high.

By the beginning of the second week (ie day 8) both oestrogen and testosterone are rising, while progesterone stays low.  I don’t tend to have any migraines at this time.

By the end of the second week though (days 12-14) progesterone has started to rise and there is a big spike in oestrogen and a smaller spike in testosterone.  Then at ovulation testosterone declines and oestrogen crashes, again setting off my migraines which carry on until around day 17/18 when oestrogen once again starts to rise.

All hormones are at their highest in week three of the menstrual cycle (ie days 14-21) and again I see a lull in my migraines.

Then at the end of week four all hormones nosedive and the decline once again sets my migraines off.

It’s easy to blame oestrogen for everything as it’s the hormone which goes up and down the most spectacularly, but it may not be as simple as that.  When I look at my migraine pattern it fits the ups and down of testosterone every bit as much as it fits the ups and downs of oestrogen, and of course progesterone comes into the equation just before ovulation when my migraines appear and carries on until the end of the cycle just like the other two hormones.  So in fairness it could be any three of the hormones in isolation, or the balance between them which sets my migraines off.

Or it could be something else entirely more complex.  For example, oestrogen drives histamine and histamine has been linked to migraine disorder.  Or it could be progesterone, which adversely affects collagen and may cause more instability in the neck and spine and thereby cause migraine.  Like most things period-related no-one has a clue what’s really going on.

I read differing stores about Menopause and the effect no longer having periods has on migraine disorder, with some women saying it helped enormously and they now hardly ever have migraines and others saying it’s made no difference to their migraine frequency.  As my migraines are so clearly linked to my menstrual cycle there’s one thing for sure – Menopause is going to have some effect, it’s just whether that’s going to be for the better or the worse.  I guess only time will tell.

 

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Symptoms of Peri-menopause

According to this website there are 34 symptoms of peri-menopause, some like hot flushes most of us know about and some which to me have come as a huge surprise.  So that you can all compare your Change to mine I thought I’d go through my experience of these symptoms but, more importantly, talk about the ones which I haven’t as yet had.  When you read about peri-menopause online you only really get the horror stories but it’s not inevitable that you’ll turn into Norman Bates’ evil twin – no, it’s much more likely you’ll just become a grumpy old git with a disappearing waistline 😉

Common Menopause Symptoms

Hot Flushes/Flashes

Remarkably I haven’t had these as yet, for which I am truly thankful.  However, they are actually more common in the first two years after Menopause, ie when periods have stopped, so there’s time yet!  Having said all that, as I’ve recently documented I’ve definitely been having vasomotor symptoms which feel a bit like I’m having a stroke and are massively scary – I just don’t flush.  So maybe I’m having my own, unique, version of the flushes just without the heat.

Night Sweats

I’ve had night sweats for about the past 7 years, but only in my period week.  Strangely enough, now I’m approaching Menopause they aren’t as bad as they used to be, so this symptom is again not one I’ve had huge problems with.

Irregular Periods

When I’ve been reading about peri-menopause online I’ve often seen the question “how do I know I’m in peri-menopause?” and think to myself “really?!”  If you’re in your forties and your menstrual cycle starts to change in any way, the likelihood is that your hormones are off to pastures new.  Of course there are other reasons for period changes, but when it’s peri-menopause related you kind’ve just know.  My cycles are currently all over the place, with last month’s being 40 days and this month’s being 22 days.

Loss of Libido

Hell-to-the-no 😉  In fact, there are times in the month I am so horny I could shag the dog.  Being single, of course, my rampant sex drive is wasted which seems a bit of a shame, however in reality my endometriosis is so painful sex would probably be out of the question.

Vaginal Dryness

I’ve definitely had this, but only at certain times of the month – it’s not currently permanent.  It doesn’t feel like I expected either and for me I only know it’s happening because my undies rub and irritate me and this can cause my lady garden to become sore.  A smearing of K-Y Jelly, which stings like a son-of-a-bitch when first applied, has been helpful.

Mood Swings

Over the 7 years of my peri-menopause I’ve had five massive rages however they were all due to my alcoholic Mother so would probably have happened irrespective of my hormones.  There are times of the month I can feel a bit weepy or tetchy for a few days, but then I’ve always been like that so it’s not something unique to peri-menopause.  I feel hugely thankful that my mood has so far been fairly stable, though of course this may change as the actual Menopause gets closer.

Other Changes

Fatigue

As I already have severe chronic fatigue I haven’t noticed this as a symptom anywhere near as much as if I’d been healthy.  However, a couple of years ago my fatigue became absolutely poleaxing but this turned out to be because of low ferritin stores and has improved dramatically following iron supplementation.  So if fatigue becomes troublesome look for alternative explanations – low iron is common in peri-menopause as bleeding can become heavier.

Hair Loss

I’ve never had thick hair but started losing my hair in earnest in my mid forties.  MCAD can also cause hair loss so I’ve no idea if I would have lost quite so much hair if I didn’t have that, but it’s not something I’m going to get hung up on.  Hair extensions and wigs are brilliant these days so I just bought myself some fake hair and got on with it.

Sleep Disorders

Again, because I already had insomnia due to my ME and MCAD it’s hard to know how much my sleep has been affected by peri-menopause.  I actually went through a couple of years of sleeping brilliantly, probably the best for 20 years, but now I seem to have insomnia again in particular waking at 4 or 5am and not being able to drop back off.  I just accept it as one of those things and am so used to being sleep deprived it doesn’t hugely affect my day.

Difficulty Concentrating

Yet again, I’m already completely brain fogged due to my existing illnesses and don’t think this has gotten massively worse.  When you’re not sleeping well it affects daytime concentration too, so my focusing problems are probably as a result of many factors not just peri-menopause.

Memory Lapses

Er, what was the question again? 😉  My memory has definitely gone to shit.  It was never good to start with, 25 years of M.E. brain fog has seen to that, but there are now days when it’s so bad I feel like a Dementia patient.

Dizziness

This has been one of the worst symptoms for me.  I can spend whole weeks feeling dizzy and disorientated every waking second of the day.  In fact, the second I opened my eyes this morning and the room swerved I knew today would be a dizzy day.  It’s just something I put up with and pray eases soon.

Weight gain

I have gained half a stone (7lbs) in the last year, which doesn’t sound a lot but has meant I’ve had to go up a dress size.  The reason for this is that I have the raging munchies and go through cycles where even Bert’s dog biscuits look tempting.  I have zero self-control, even though I know that once the weight is on it will be really hard to shift, and these are the times I’m glad I live 7 miles from the nearest shop otherwise I would have gained 10 stone 😉

Incontinence

Thankfully I can still hold my wee, though the fact I’ve never given birth has probably helped.  I pee for England, including having to get up at least once in the night, but don’t leak.

Bloating

The word “bloated” doesn’t do this symptom justice.  My breasts are, at times, so swollen I could float on water and I looks 5 months pregnant.  I pee, and pee, and pee and still look and feel like the Michelin Man.

Allergies

My life changed forever when my hormones started to decline and my mast cell activation took up residence.  Enough said.

Brittle nails

My nails, like my hair, have always been rubbish and I can’t see that peri-menopause has made a huge difference.  In any event, who the fuck worries about their nails?!  Get a life.  Having said that, a couple of years ago I noticed my toe nails has started to split right down the middle and the ends had all flattened out.  This is a symptom of anaemia and sure enough my iron stores were really low, so if you notice these kids of signs my advice would be to get some blood work done.

Changes in Odor

I live on my own, so I’ve no-one to tell me if I’ve suddenly started to smell like rotting fish.  I am aware, though, that body odor can change during middle age so am more liberal with deodorants and perfume than I used to be, but I think this applies to both sexes not just women – my Dad certainly has an “old man” pong no matter how often he showers.

Irregular Heartbeat

This is one symptom I can definitely relate to and is really common.  I’ve had palpitations as part of my M.E. for donkeys years but they got so bad in my mid forties I had a 24 hour holter monitor done.  I was convinced I had some kind of heart problem, but although the ectopic/skippy/thumpy beats showed up on the test they were deemed to be normal and just part of the peri-menopause.   They’ve thankfully now settled down a bit and aren’t as frequent or severe as they were.

Depression

I’m so thankful that I haven’t suffered with this symptom and mood-wise am just my usual grumpy arsed self 😉

Anxiety &/or Panic

I’m not an anxious person in general, but have definitely noticed I can become suddenly anxious for absolutely no good reason.  Anxiety can be a symptom of mast cell activation too though, so I’m never sure whether it’s my hormones or my mast cells that are playing up.  It hasn’t been too troublesome though and I just accept it as part of the process, tell myself that “this too shall pass” and try not to panic over the fact I feel panicky, which is often easier said than done.

Irritability

All I will say about this symptom is that Victor Meldrew and I must be related only in my house there’s a lot more swearing 😀

Pains

It’s been the pain symptoms of peri-menopause which have come as a shock to me as I simply wasn’t expecting some of them.

Breast Pain

Holy Mary Mother of God my boobs are sore.  Chronically, stupidly sore, all of the time.  I hardly ever wear a bra these days as they’re so uncomfortable and have been known to rub Ibuleve gel into my breasts to try and gain some relief.  It’s like PMT breast tenderness on steroids.

Headaches

My battle with migraine is well documented and is mostly hormone related.  My migraines haven’t become particularly more frequent as a result of peri-menopause, but they’ve definitely become more painful, last longer and now often include vomiting.  Along with my endometriosis and adenomyosis this is one symptom I’m praying to God will lessen when I’ve finally gone through The Change.

Joint Pain

My joints went to hell on a handcart when I first started with peri-menopause at the age of 43.  Obviously I also have hEDS, so I’ve no idea if my joints would have been so badly affected if I were healthy, but I’m definitely doing the old lady thing of “oompfing” as I get out of the chair and can no longer bend to put on my socks or shoes.  I feel like I’ve aged 20 years in the last 5.

Burning Tongue

This is another tricky symptom, because I have GERD and if acid backs up into the oesophagus and/or mouth it can cause a burning sensation so I’ve no clue if my burning mouth is due to my reflux or my hormones.

Electric Shocks

This symptom was completely unexpected, particularly as it only affects my breasts.  The stabbing, electric shocks became so bad that my GP sent me for an early mammogram last year as it’s not something widely considered to be linked to the menopause, but all was fine and the pain is less frequent now than it was a couple of years ago.

Digestive problems

I have digestive issues by the truck load already and haven’t noticed they are any worse than they were five years ago.

Gum problems

Many people in middle age start to suffer from receding gums, so I personally wouldn’t say this is down to peri-menopause, just age.  Yes I lost my first adult tooth at 48, but then my best mate’s hubby did too and he isn’t peri-menopausal although my mate says he’s definitely having a mid life crisis 😉

Muscle Tension

If you have depression, panic or anxiety as a symptom of peri-menopause it stands to reason you will notice muscle tension so I’m not convinced this is a symptom in its own right.  I also think that even some healthy women have mast cell issues during peri-menopause, with things like new allergies, hives, eczema and itching, and again muscle tension is a symptom of mast cell activation.  I have definitely noticed more muscle spasms in the past five years, but then my MCAD has gone nuclear so it was fairly much inevitable and not down to peri-menopause per se, though my hormones are probably the reason my MCAD went nuts.

Itchy skin

My itchy skin drives me bonkers some days, but it’s part of having MCAD so again it’s not a symptom I associate with peri-menopause.  Having said all that, the one symptom not mentioned in the list of 34 is dry skin, which amazes me because it’s something nearly all menopausal women notice and dry skin can also be itchy.  I’ve always had beautiful, flawless skin, it’s the only good thing about having hEDS, but I feel like my skin has aged ten years in the past two and is horribly dry and lifeless.  My whole life I’ve never had the need to bother much with moisturizer, but now I put it on twice a day otherwise my skin feels as tight as a duck’s arse.  My skin has also sagged and wrinkled at an alarming rate and I suddenly look, and feel, every one of my 50 years.  Yay.

Tingling Extremities

Having had pins & needles in my hands and feet for the better part of a quarter of a century I’m probably not the best person to ask about tingling extremities.

Osteoporosis

My maternal Gran, my Mum, her Sister and a maternal Cousin all had osteoporosis by the time they were 52 so this is something I’m probably going to develop.  On the NHS bone density isn’t usually checked until a woman is over 50 even with a family history, however as hEDS is also a risk factor I’ve already had two bone density scans in my forties which were thankfully both fine.  It will be interesting to see, however, what my next one shows in two years time as by then I should be post-menopausal.

Excluded Symptoms

There are some symptoms which, IMHO, have been left out of the list of 34.  One is dry skin which I’ve already mentioned and the other is changes to flow.  My periods don’t last any longer than they always have, but they are definitely heavier and often really clotty.  Other times the blood can be bright red, like I’ve cut myself, and I’m also more prone to sluggish brown smears/spotting both before and after my actual period.  Even if your cycles are still regular, if you’re in your forties and start noticing changes in the consistency of your flow chances are you’re starting in peri-menopause.

Your body also changes shape.  Even if your weight stays the same your waist may suddenly disappear.  I’ve always had a curvy, hourglass figure with a well defined middle but seemingly overnight my waist did a bunk and I now I’m starting to look matronly and chunky.

Something else which hasn’t been mentioned is apathy.  I don’t feel in any way depressed and I’m not lacking in motivation but some days my get-up-and-go simply gets-up-and-leaves.  Maybe this is a fatigue thing but I just can’t be arsed to do stuff, in particular housework or cooking………in fact, any of the “shoulds”.  I know I should be doing the laundry and instead I’m either sat on my lardy arse stuffing my face with Wine Gums and watching Teen Mom, or I’m in my ‘studio’ taking photographs, which is fine until I go to get dressed and realize I’ve no clean pants.  Or socks.  Or much of anything else, which turns into an excuse to stay in my jim jams and watch more telly.  Maybe getting old isn’t so bad after all 😉

Conclusion

So far my journey through peri-menopause hasn’t been the hellish experience my Mum warned me about and I seem to be doing OK.  I personally think it’s all about expectation.  By the time I was in my mid forties I expected to be starting peri-menopause so that when it happened it didn’t come as any kind of shock.  I’m gobsmacked at the amount of women I read about online who are 48 and seem surprised their periods have suddenly gone awry – surely to goodness all women expect to start The Change by their late forties, and it actually begins much earlier for many of us.

Already suffering from chronic illness also prepares you for changes to your hormones.  Healthy people who suddenly find themselves exhausted, itchy, stiff and in pain, and who develop palpitations, dizziness and insomnia, must think their world is coming to an end, but when you’ve already had these symptoms for years it’s just business as usual for the most part.  Trust me when I say I’ve been way more sick than I am now.

There are definitely parts of my transition which are crap, like my migraines and dizziness, and they have absolutely affected my life but not to the point where I feel like I can’t cope.  I’ve been hugely lucky so far in that my mood has remained fairly stable which is one of the things which worried me the most, and so far the dreaded hot flushes haven’t put in an appearance.  Of course, no-one could predict that my waning hormones would set off my dormant mast cell disease causing all hell to break loose and I was clueless as to the fact that it would impact my hEDS quite as much as it has, but my M.E. has so far been largely unaffected though I know that’s not the case for some.

I was anticipating becoming a depressed, irritable, exhausted, fat mess by the time I was 50 and although there’s still time for this to happen so far I’m just grateful I still feel my usual kind, happy but grumpy self albeit a bit thicker and saggier around the edges.  It could be worse.

Weird head symptoms

This is another peri-menopause related post, so feel free to skip it if you’re male, a younger female who doesn’t want to know what the future holds or a jammy older woman who has put menopause hell behind them 😉

I’ve been having a new symptom and it has not been pleasant.  Several months ago, while teaching software to a group of people at my Camera Club, I suddenly felt like I was having a stroke.  I know that sounds dramatic but trust me when I say it was dramatic.  Out of the blue I felt my brain lurch inside my skull and all thoughts ceased.  I couldn’t think, I couldn’t speak and I felt like I was going to pass out.  I have no idea how I kept functioning for the remaining minutes until our coffee break, but I somehow coped then made a hasty retreat to the loo, where I sat on the throne with my head in my hands wondering what the hell was happening.  After five minutes or so I started to shake and feel ridiculously hungry and I realized my blood sugar had tanked, so went and got myself a brew and ate some biscuits.  Later I managed to drive home, albeit feeling crazily spaced out, but for days afterwards I felt really dizzy and disoriented.

Most people would have rung the Doctor but I just figured if it was a stroke I seemed to be recovering and if it wasn’t a stroke they wouldn’t have the foggiest clue what it was, so I couldn’t much see the point.  My almost phobic fear of the medical profession and being labelled bonkers outrode my fear of what was happening to me.

That was back in September and this week it happened again, this time while I was sitting quietly in bed watching the telly.  I genuinely felt like I’d been coshed over the head with a blunt instrument, saw stars and then felt ridiculously woozy for the rest of the night.  For the next four days I kept having weird head rushes, a feeling like my brain was lurching in my skull and felt constantly woozy like I had some kind of concussion.  I also had a low level thumping headache and my brain actually felt sore, a bit like it was bruised.  On day number five, ie this morning, I had some mild head rushes when I first got up but then seemed to brighten up and didn’t start feeling woozy again until around 7pm.  It’s now 8pm and every time I move my eyeballs I feel dizzy – writing this post is making me proper nauseous.

It’s been quite scary if I’m honest, but I did realize that this week I should be ovulating so I’m assuming it’s some kind of hormonal problem.  I Googled “menopause weird head symptoms” and came across dozens of pages, but they were mostly accounts of dizziness rather than the violent brain lurching I’ve experienced, or women who were having anxiety and/or panic attacks which is something I’ve thankfully never suffered from.  From the women’s accounts they were having symptoms which only lasted an hour or two at most,  or symptoms which came and went, not lasting days on end like mine have been this week.  I have had quite bad dizzy spells on and off for a couple of years now but this feels very different – more woozy and with disequilibrium rather than vertigo, plus the head rushes and brutal, sudden feeling like I’ve just been battered on the nonce.

To be honest I’ve no freakin’ clue what’s going on and currently have no intention of finding out.  I’m so sick of Doctors looking at me like I’m nuts, or giving me all sorts of tests which always come back normal then looking at me like I’m nuts, that I’d rather suffer the weird head shit than put myself through the trauma that is medical care.  The symptoms have two choices – they will either go or they won’t and if they don’t and they become unbearable I’ll have to have a rethink.  I’ll probably be offered drugs I can’t take in any event, particularly if they’re migraine related, so I can never much see the point in going to the Doctors.  I’m just hoping it’s my hormones and will settle down soon – keep your fingers crossed for me!

 

Peri-menopause penultimate phase

I have become a bit obsessed with my waning hormones so apologies if I’m boring you all rigid but to actively watch your body transition into the unknown is both scary and fascinating.  I think I’ve reached a milestone this month, which I thought I’d be doing cartwheels about, but it hasn’t turned out quite as expected and now rather than being joyful I am sodding terrified.

I’ve skipped my first period, which means it’s the beginning of the end and I am probably in the final twelve months of peri-menopause.  I thought I’d be jumping for joy as I’ve been wanting my horrendously painful endometriosis and adenomyosis filled periods to end since my teens but instead I am flamin’ miserable.  I started with the usual period pain, backache, painful boobs, insomnia and exhaustion on about day 22 of my cycle and after five days of symptoms was more than ready for my period to start so that they’d bugger off, but I am still waiting.   I am now on day 40 of my cycle with no sign of bleeding, but the burning, stinging period/pelvic pain is intense, my breasts are killing me and my back pain so bad I have barely slept for a week now.  WT-actual-Fuck?!!

I’ve read that it’s very common for women to experience period pain but have no bleed while they transition into Menopause, but most say that after a week or so the pain just disappears – sort of like having a phantom period.  But mine is not only not going anywhere it’s getting worse by the day 😦  Surely to God I don’t have to put up with this agony for a whole month until I go through another cycle, or even more terrifying the symptoms won’t stay around forever?!

I feel hugely cheated.  I have looked forward to skipping my first period and knowing that finally, finally my monthly torture is coming to an end, but no.  My body, traitor that it is, has once again made the situation worse not better.  I could weep with the injustice.  Have I not suffered enough?

The only good news is that emotionally I am fine, if understandably fed up.  No sign of PMS (not that I’ve ever suffered much with that anyway thankfully) and no migraines.  I so far also seem to have by-passed a symptom suffered by the vast majority of women in peri-menopause – hot flushes.  I had one back in 2012 sat in a cafe, during which I stripped down to my t-shirt even though it was the middle of January and snowing outside, but other than that nada.  I’ve had night sweats leading up my period for years, but nothing so drastic they’ve kep me awake at night or forced me to change the sheets or anything, for which I am grateful.  I do know, though, that the situation would have been vastly different if I were still eating a diet high in histamines.  I used to flush after every meal and am convinced that if my diet had remained the same hot flushes would have been the order of the day.  So I guess that’s a silver lining, though to be honest I would have preferred the hot flushes over the excruciating ramp up in pelvic and back pain any day of the week.

So I shall see what develops.  The only other time a woman’s body goes through this sort of monumental change is during pregnancy, but at least you kind’ve know what to expect with that.  There are a million books on the subject and each woman’s experience is broadly similar.  Not so with the Menopause where the most advice you get is “every woman is different” which is no sodding use whatsoever and you’re basically just left to white-knuckle it, doubly so if you already have other health problems.  I have absolutely no idea how all this is going to affect my M.E., MCAD or hEDS and even though I thought knew how it was going to pan out with my endo and adeno it turns out I was clueless.  I did find a few books on peri-menopause on Amazon, one of which was written by a man (a man!) which is like the blind talking about sight, while others were written by women who haven’t gone through the menopause themselves which is akin to a childless woman writing about giving birth.

It may be that I am not going to actually skip my period this month it is just monumentally late, in which case it needs to hurry the hell up and put me out of my misery.  I don’t know and it’s not like anyone else knows either.  Watch this space, or look away now, I wish I could!

Types of Fatigue

Doctors talk about “fatigue” like it’s a single entity and it is listed as a symptom in dozens of diseases and conditions like we all are experiencing the same problem, when we most definitely are not.  It’s a bit like headaches.  You can get tension headaches, concussion headaches, hangover headaches, seizure headaches, migraines and hormone headaches to name but a few, each with different causes and characteristics and needing different treatments.  Yet for some reason fatigue is treated like it’s the same for everyone regardless of cause, when it actually differs widely and needs various management and coping strategies.

Fatigue is a symptom of 4 of my diseases and conditions (menopause isn’t a disease though it sodding well feels like one some days!) so I thought I’d have a go at explaining how it differs for me and how I manage each type.

M.E. Fatigue

The term “fatigue” is so inappropriate when trying to explain this M.E. related symptom that I hestitate to use it, but so far I haven’t been able to think of a better word so it will have to do.  M.E. fatigue is the easiest for me to recognize.  It is totally unlike the normal “tired” or “exhausted” that everyone feels and much more like the fatigue you get when you’re poorly.  My body feels poisoned and ill, a bit like the feeling you get just before you vomit.  That weak, clammy feeling where the blood drains from your face, you are green to the gills, your legs buckle from under you and you end up lying on the bathroom floor groaning, unable to move or think as the weakness and sickness consumes every ounce of your being.  Only it’s like that 24/7.  And it’s not a fatigue that you can push through, at least not for any length of time.  I just hit a brick wall and it is absolutely impossible to carry on.  If I try I either collapse, faint, have a seizure and/or end up puking.  Depending how severe your M.E. is, this brick wall can come about after walking to the shop and back, talking on the phone for 15 minutes, taking a shower or simply sitting upright to eat a meal.  The fatigue doesn’t just affect the muscles, it also affects the brain which feels like it’s permanently stuffed with cotton wool.  Any act of thinking, eg. writing a shopping list, reading a book or making a decision about what to eat for dinner, robs the brain of energy and makes it even more fuzzy to the point where it can be physically painful and thought becomes impossible.

It is not a fatigue which responds to rest.  You can sleep for 20 hours and wake still feeling utterly and absolutely wiped out.  I have felt completely wiped for over two decades and not for a single second of that time have I ever feel well, rested or energized, either mentally or physically.

The fact that M.E. was re-branded Chronic Fatigue Syndrome is an absolute travesty.  M.E. has nothing to do with fatigue, at least not the fatigue that healthy people recognize.  The word “malaise” is much more appropriate, though I still think we need to invent a word which describes the poisoned, weak, collapse which epitomizes M.E..  I even take issue with “post-exertional malaise” which makes it sound like you only get symptoms after activity, which definitely isn’t the case.  I have felt weak, poisoned and ill every second of the last 23 years.  Yes activity makes it worse, but the absence of activity doesn’t mean the absence of symptoms – if only!  When I see people online query if they have M.E. because they are chronically tired I want to scream.  If being fatigued was the only diagnostic criteria for having M.E. half the world’s population would have it.

The only way to manage the fatigue of M.E. is to lie down.  Sitting won’t cut it.  At the severe end of the spectrum you have to lie down every second of the day and at the more mild end of the spectrum you have to lie down for portions of the day, but if you can remain upright for the entire day I’d query whether you have M.E. at all.  Having “rested” you don’t feel recovered, you just feel like you’re not dying or about to pass out, which is a bonus.

Ehlers-Danlos Syndrome

The fatigue associated with my hEDS (and I can only speak for myself) is a totally different kettle of fish.  It’s more akin to normal, if exaggerated, fatigue.  Imagine you’ve just climbed to the top of Ben Nevis and back.  Everything is hurting and aching, your muscles feel strained and overworked, stiffness is setting in and you’re desperate to collapse into a warm bath or onto a soft couch.  That’s what my hEDS feels like, only every second of every day.  There is no ill feeling or feeling of weakness, seizure or collapse, and I can push through the fatigue if I really need to although it does get to a point where the pain is so bad I have to stop whatever I’m doing.

Rest does help and in particular the avoidance of activity.  It doesn’t make the pain, aching and stiffness go but it becomes less severe.

Some people with EDS complain of brain fog but this isn’t part of the diagnostic criteria.  As I already have brain fog from my M.E. I have no idea if I’d have this with EDS or not if I didn’t have M.E. too.  I do think that some people with EDS may also have M.E. and go undiagnosed and that some people have brain fog due to POTS or some other type of dysautonomia rather than EDS per se (POTS & dysautonomia are common secondary symptoms of both M.E. and EDS).

Managing this type of fatigue requires planning and pacing, including switching to different kinds of activities and not doing anything repetitive for long periods of time.  I find it the most simple to treat of all my conditions as it does respond to rest and careful pacing, making the fatigue easier to manage although obviously not cure.

Mast Cell Activation Disorder

Again I can only speak from my own experience but the only time I have fatigue associated with my MCAD is when I’ve had an anaphylactic event.  The fatigue which follows makes me very weak and drained and can sometimes make me sleepy while other times not.  I absolutely have to lie down, often for several hours, and it can be days or even weeks (depending on the severity of the anaphylaxis) before I return to some semblance of normality.

I don’t really get brain fatigue with MCAD.  After an anaphylactic event I feel totally spaced out and my brain feels kind’ve battered and bruised, but not foggy like with M.E.  It’s hard to tell to be honest, because having anaphylaxis completely buggers my M.E. up and causes a flare which can last for months, so then it becomes impossible to tell which symptom has been triggered by which disease.

The only way of managing this fatigue is to rest in bed until it passes.  Antihistamines seem to have zero effect.

Peri-Menopause

I am in year 6 of peri-menopause.  For the first 5 years I didn’t notice any significant fatigue but this year I’ve been poleaxed by it.  It came on out of the blue in the new year and literally overnight I felt like I’d been coshed over the head.  Having researched this online it is fairly common and the name given to this symptom of menopause is “crashing fatigue”.

It’s different again to the fatigue mentioned above and feels much more like I’ve been sedated.  My eyelids feel like cement and are permanently down to my kneecaps, my body feels relaxed and heavy and I just want to sleep, sleep and sleep some more.  However, having slept for 9 hours I wake feeling no better and could cheerfully go back to sleep only 2 hours after getting up.  And then again in the afternoon.  Having slept half the day away, however, I still can’t keep my eyes open past 9pm at night.

This fatigue definitely affects my brain not to mention my memory!  But it’s not so much foggy as sleepy and confused, a bit like I’ve been woken from a deep sleep at 3am.

I haven’t found anything which alleviates my menopause fatigue and can only hope it settles once I’ve gone through The Change and come out the other side.

Having written this blog post I’ve realized how difficult fatigue is to explain and how easily it can be misunderstood by healthy people who have only ever experienced normal tiredness.  I’ve never been asked by medical staff to explain my fatigue, how it feels or how I manage it – they just hear the F word and assume it’s akin to being tired all the time, when it’s anything but.  I’ve thought for a lonnnng time that we need a new word to explain the malaise-like weakness experienced by M.E. patients, so that it can be differentiated from other types of “chronic fatigue” and more importantly from normal fatigue, so if you have any suggestions let me know!

 

Anaemia update

Last Christmas I realized I was feeling ropey and had been feeling extra rubbish for quite some time.  I was dizzy, constantly.  I could be sitting watching TV and all of a sudden the room would lurch to the left and back again, and there were days when every time I moved my head the world tilted on its axis.  I could sleep for 8 hours straight which is unheard of for me and two hours later need to go back to sleep (I’ve never slept during the day no matter how ill I’ve ever been not least because ME has given me horrific insomnia).  My brain was so fuzzy I literally couldn’t form cohesive thoughts and I had exhaustion so profound some days I couldn’t get off the couch.

Of course, all of these are symptoms of my pre-existing conditions but this felt totally different to my normal rubbish-ness and I knew I wasn’t having an M.E. relapse or a mast cell or EDS flare.  No, something else was going on and I instinctively knew it was related to my iron levels particularly as when I had my period I was absolutely poleaxed.

As outlined in my first post on Anaemia back in February I have several risk factors for iron deficiency and, coupled with my peri-menopause and worsening endometriosis, I knew I needed to get my ferritin levels checked.  They unsurprisingly came back at 17 which according to the lab results was right on the bottom rung of ‘normal’ (17-291), though realistically in order to feel well you should have a ferritin level of at least 50 and preferably above 90.  My vitamin D was also considered sub-clinically low, ie outside the normal range.  My GP dismissed anaemia though because my red blood count was fine and basically just fobbed me off, however she wasn’t the one feeling so crap she couldn’t function so I started on some over-the-counter supplements.

My mast cells seem to hate tablets of all descriptions, so my options are limited to liquids and syrups which are few and far between.  In addition, many of the liquid iron preparations such as Floradix contained all sorts of ingredients I didn’t want or need such as apples (to which I’m mildly truly allergic), spinach, nettles and CoQ10.  So I opted for the ‘Get More Vitamin D mango & passionfruit‘ drink and ‘Spatone‘ natural iron water both of which I could have delivered with my groceries from Tesco.

I have about 200ml of the Vitamin D drink each day, which tastes OK but not brilliant, and gives me 80% of the recommended daily allowance of Vitamin D.  According to my GP, the lab won’t re-test Vitamin D for 12 months so I’ve no idea whether or not my levels have improved after nearly 10 months of supplementation.

Spatone is a sachet of naturally iron rich water which I take mixed in pear juice (the vitamin C aids absorption of the iron and disguises the awful metallic taste).  Iron supplements are, however, notorious for causing nausea, reflux, constipation or diarrhoea and I must admit after 4 days on Spatone I felt sick 24/7 and had awful colic-like stomach pain.  So I had a break for a week, then re-started the sachets but just taking a teaspoon per day and gradually working up to a full sachet.  This worked fine and I had no side-effects whatsoever 🙂

Within a week of starting Spatone my dizziness almost disappeared and I did feel a bit less tired which was great, but unfortunately for me the effects haven’t lasted.  By September I was starting to feel battered by exhaustion again, wanted to sleep for England, was as white as a sheet and feeling constantly dizzy.  In addition I seem to have developed tinnitus, which is a constant low level high pitched ringing hiss in my ears, and I’ve noticed a change in my toe nails (but not my finger nails!).  One of my toe nails has split and despite the nail continuing to grow it just keeps splitting in the same place, while the other nails have started to flatten at the ends.  Spoon shaped nails are a sign of anaemia, but when you Google images you only see horrendous photos at the severe end of the spectrum which bear no resemblance to my mildly flattened nails.  So here’s a couple of pictures of what’s happening for me:

I doubled my dose of Spatone but it didn’t help.  In fact, my symptoms continued to get worse so I rang my GP again, who tried to fob me off by saying that as I already have ME the peri-menopause is going to knock me about, but I tried calmly to explain that I know what ME feels like and this is completely different.  I insisted I wanted my bloods done again, in particular my ferritin and thyroid, although I’m sure my thyroid is fine as I’m not cold and have had no weight loss or gain issues other than that expected of going through The Change.  The first appointment for a blood draw I could get isn’t until 7th December (!), then of course it has to be sent to the lab, analysed and the results sent back to my GP by which time it will be sodding Christmas and everything will grind to a halt until January when it will be so busy getting another appointment with my GP to discuss the results will be impossible.  So I’m now trying to find a different liquid iron supplement to take but am so far struggling.  The thought of feeling this awful for at least the next several weeks, and in particular over Christmas, is pretty depressing.

When you have a chronic disease doctors do tend to put every single symptom you have down to that and it’s often a fight to get them to investigate new symptoms.  But investigate them you must, because it’s been my experience that all the new symptoms I’ve developed over the years have been down to hitherto unknown diseases and were nothing to do with my pre-existing M.E.  In particular, trying to get my chronic pain recognized was a mare because all the doctors I saw simply put it down to part of parcel of M.E. or tried to diagnose me with Fibromyalgia when I knew it was something else, which of course turned out to be Ehlers-Danlos Syndrome.  Then my stomach issues were put down to my EDS, when they turned out to be Mast Cell Disease.  And now my rubbish-ness is being put down to the peri-menopause or my M.E. when it’s going to turn out to be anaemia or at the least iron deficiency.

It’s so hard to fight the medical profession for treatment when you are this exhausted and there are days I feel like putting up and shutting up, but unfortunately that’s not an option when I am so floored I can barely get through the day.  So I shall keep on plugging away until I find out what’s actually going on and come up with a solution.

 

 

 

 

The hormone bitch from hell

It’s finally happened.  I’ve turned into the exhausted bloated frazzled dippy hormone bitch from hell.  Y’know, the bad tempered middle aged woman whose husband and kids you pity cos she looks like no-fucking-fun to live with?  Yup that’d be me.

My peri-menopause is somewhere in the outer stratosphere as my ovaries desperately churn out hormones so exhausted their tongues are hanging out.  They feel beaten, like a whipped dog, yet refuse to lie down in the corner and just die.

My day started with period pain.  In fact, my week started with period pain.  It’s been 7 days of cramp riddled hell but no fucking period.  What’s up with THAT?!  Aunt Flo will no doubt arrive at 2am after I’ve gotten up to pee for the 4th time in four hours, passing clots so huge the toilet bowl will look like a blood bath.  Yes my friends, I now have periods which look like a crime scene in which I am the victim.

I have pimples.  It’s like being a teenager all over again but without the taught, lean body and hours of heavy petting.  I can’t believe my 17 year old self had more sex in one year than I’ve had in the last decade.

I’ve lost my car keys.  Again.  I go into the kitchen to look for them. Why am I in the kitchen?  Think woman, think!  Ah, yes, car keys.   Where the fuck did they go?  Hmm, I’m thirsty maybe that’s why I’m in the kitchen.  Oh, car keys!  What the hell are they doing in the fridge?  Er, why am I in the fridge?  Maybe I need to get something out for dinner tonight.

I am evil.  I can hide it until 10am when I need to get my dog into the car.  “Bertie” I call sweetly “time to get in the car baby”.  He ignores me and continues to sniff other dog’s wee on the bush at the corner of our drive.  “C’mon fluffy child, I’m late.”  He cocks his leg and moves a good foot further away.  “Bert” sounding steely, “get in the sodding car.”  He disappears round the corner out of view entirely.  I stomp off down the drive screaming like a banshee “get in the goddamn car you fucking disobedient German fucking Schweinhund!” and unceremoniously help him back up the drive with my foot, at which stage 5 Ramblers walking past my house consider reporting me to the RSPCA.

I set off into town.  I am the only person driving correctly and everyone else is an arsehole imbecile who has obviously never heard of the Highway fucking Code.  What the hell are they doing on the roads in the middle of the morning anyway, don’t they have jobs?!  Idle fuckers.

I go into Sainsburys for a pair of jeans a size bigger than I’ve worn for the past 30 years.  I only have to look at a Ginger Crunch and I’ve gained 3lbs and am so swollen with water you could use me as a beach ball.  I ignore the skinny stretch because lycra and I are no longer friends, and choose the pair with the elastic waistband which look reassuringly comfy.  I need a new bra but they don’t make them big enough.  They don’t even make a tape measure big enough.

I have frown lines between my eyebrows that 100 years of botox couldn’t fix and jowls that look like Schnorbitz.  Only Schnorbitz has more hair.  Wayyyy more hair.  I wonder if Sainsburys sell eyebrow pencils?

On my way home I drive 5 miles past the petrol station before I realize my tank is on red.  I must remember to do a “need petrol” post-it note and stick it on the hall table.  Remember Jak, petrol post-it.  Petrol post-it.  Petrol post-it.  As soon as I’m through the back door I reach for a pen.  Hmmm.  Why did I need a pen?  Was I supposed to be writing something down?

It’s 2pm and I crawl into bed for a nap.  Not a rest, an actual drool-on-the-pillow old fogie’s nap from which I wake bathed in sweat and with armpits which smell like death.  I’d dreamt I was being arrested for some heinous, but unknown, crime like forgetting to pay my council tax bill even though it’s done automatically by direct debit, or stealing invisible plans to the rights of way on the local footpath.  I wonder if my phone is bugged or the government are spying on me through my TV.

I slob under the duvet, chomping like the hungry caterpillar and binge watch 3 hours of Bake Off to combat the anxiety and paranoia.  I prefer Pru to Mary.  Mary was nice and nice people are irritating.  I forget I used to be one.