Tag Archives: symptoms

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.

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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.

 

 

 

 

 

 

Yet another year of Peri

Even though we’re only half-way through 2017 I already have an entire year’s data on my ever changing menstrual cycle.  That’s because my cycles are now regularly shorter than 28 days, so I’m managing to fit in double the amount of periods than I used to.  Lucky me, especially bearing in mind I have endometriosis and adenomyosis and they are excruciating.

When my periods first started to change back in 2012 at the age of 44 and I realized I had probably started peri-menopause, I wanted to know about other women’s experiences.  There were legions of horror stories online, very little about the positive and hardly any actual hard data.  “It’s different for everyone” was a common theme, which is all well and good but I still wanted to know what was physically happening to other women to give me some companionship in my own journey through The Change.

Being as though I didn’t find a single story which tracked progression through peri-menopause I thought I’d track my own, so began compiling data on my menstrual cycle.  I’ve been a regular 27/28 day cycle person my entire life but in 2012 my cycle length started to subtly change and I initially experienced slightly longer cycles than usual.

MC2012

In 2013 things went totally haywire.  As you can see from the chart below I basically had alternating long and short cycles, with a couple of very short cycles (for me at any rate).  I had my first daytime hot flush this year, but only the one, and no other real symptoms.  I did have my hormones tested and they came back as “normal” which isn’t at all unusual in the early stages of peri-menopause.

MC2013

In 2014 my cycles were still abnormal, but not quite as erratic as the year before.  Again, no other symptoms of peri-menopause that I could put my finger on.

MC2014

The start of 2015 saw my cycles even out, only to become erratic again in the second half of the year.  I also saw a couple of symptoms appear – vaginal dryness around my period, which doesn’t half make your ladygarden itch and is well uncomfortable as your undies rub against your bits, and changes in my mood.  I had sudden and inexplicable rages which were absolutely overwhelming.  Having never suffered from PMT I found being so out of control of my emotions really difficult, though thankfully the hooha only usually lasted a day or two around my period.

mc2015

In 2016 I continued to have vaginal dryness and mood changes, but the dreadful rages I felt in 2015 thankfully disappeared.  I did still have a short fuse at certain times in the month but it was nothing I couldn’t control.  I also had some really weepy episodes, usually in the few days before my period started and by the end of the year was starting to feel quite overwhelmed.  As someone who usually has very stable moods this was unusual for me.  I didn’t know how much was down to the perimenopause and how much was down to what was going on in my personal life, ie the situations with my parents and my Mum’s drinking, so decided to see a therapist to help me work through it.  Three months later and I was feeling much calmer, so you really shouldn’t put everything down to your hormones!

mc2016

This year as you can see from the chart below, my periods are becoming even more erratic.  I don’t have a clue when The Curse will arrive, which makes planning difficult.  I am grateful my moods have fairly much evened out and I’m back to feeling more like myself, though I have periods of anxiety for no apparent reason which is fairly common for peri-menopause.  I still haven’t had any hot flushes though my sleep has definitely been affected and there are times I struggle with insomnia.  My migraines around ovulation and menstruation have definitely become worse and can last for days which is crippling.  My energy levels have taken a nosedive and my brain fog some days is dreadful, however this may be due to the fact that I am borderline anaemic and now on supplements for my iron levels rather than being solely down to my hormones.  The biggest two things I’ve noticed this year have been weight gain and painful, itchy breasts which have been checked out via mammogram and are fine.

I’m definitely having symptoms of peri-menopause but they’re so far nowhere near as bad as I was expecting and nothing like the horror stories I’ve read about online.  They can be annoying but are manageable and it helps that I know what’s happening and that it will all eventually pass.  Everything that’s happening to me is normal and to be expected – very few women just stop their periods with no symptoms at all and I’m happy for nature to just take its course.  This all may change as the actual Menopause arrives and I may end up eating my words but so far so good!

A full 5 years into peri-menopause and there is absolutely no sign of Aunt Flo packing her bags.  Due to my endo and adeno my monthly cycles are incredibly painful and debilitating, and I have to say I’ve been ready for some considerable time for the monthly torture stop.  So, periods, if you’re listening I am over you – feel free to leave the building!

The M Word

Last week, Newsnight presenter Kirsty Wark appeared in a documentary on the Menopause.  To be honest it didn’t tell me anything I didn’t already know but it was nice to hear about another woman’s experience because we just don’t talk about it in this country, not even amongst ourselves.  Yet it will happen to every single one of us.  I remember joining my Camera Club and was talking to a woman there in her early 60s.  I was rampantly hormonal that night and got confused so said jokingly “ignore me, I’ve got Menopause brain” and her eyes nearly popped out of her head that I would mention the ‘M’ word in polite conversation.

Historically, women’s hormones have been a taboo subject because we’ve lived in a male dominated world, even though men are currently in a 48% minority here in the UK.  Yes we had a female Prime Minister in the form of Margaret Thatcher but she only rose to power because she acted like a man, which kind’ve defeated the entire purpose of having a woman in charge.  Girls have always been seen as emotional, hysterical creatures simply because we behave differently to men and anyone who shows emotions is still seen as weak and not to be relied upon – then we wonder why mental health issues affect 1 in 3 people :-/

Women are just supposed to get on with their periods.  The adverts on tv tell us if we only use x brand of tampon we’ll be running marathons or climbing mountains, and if we pop a Feminax Ultra we won’t know what pain is.  Thankfully for some women this is the case but for others periods are a form of 4 weekly torture and going about our day business as usual is jut not possible.  This of course intensifies during Menopause yet we’re supposed to act like nothing is happening.  We are, thankfully, now sympathetic to puberty-induced erratic behaviour, door slamming and crying fits, and pregnant women are allowed days off work if they’re unwell, but the Menopause is still ignored and I can’t for the life of me understand why.  It’s the largest bodily change in any woman’s life and can cause absolute havoc.

We aren’t even honest about Menopause amongst ourselves.  When my periods first started to change and I suspected peri-menopause I went to see my (female) GP who said “well it’s a bit early but it only lasts 2 years then it will all be over with” which even I knew was a big fat lie!  Six years on and there is still no sign that my periods are about to stop for good.  The biggest shock of the documentary for me was to hear that at age 61, and ten years after The Change, Kirsty still has Menopause symptoms in particular the fact that she still doesn’t sleep well.  The myth that our periods stop and that’s the end of that may be true for some women, but certainly not for all.  In a phone-in for the documentary a 72 year old woman rang up to say she was still having hot flushes every single day of her life twenty years after her final period and I remember my paternal Grandmother started to sweat profusely following Menopause and didn’t stop ’til the day she died.  My own Mum’s vagina atrophied so much in her mid seventies that she was prescribed oestrogen pessaries and her (female) Gynaecologist joked “women were supposed to die shortly after Menopause, so to be honest we’ve no idea how to treat hormone-induced symptoms in old people!” which tells you everything you need to know about the lack of information given to medical students in respect to older women and the female-related issues they face.

I don’t particularly want to celebrate my Menopause but I have no intention of ignoring it either.  I will bring it up in conversation if I feel the need and people can be as shocked as they like.  I won’t beat myself up, or apologise for, feeling irrational or emotional and will pamper myself when I’m feeling physically crap.  I won’t be hard on myself when I’m fatter at 55 than I was at 45, or joke about needing an afternoon nap.   All this is normal and it’s about time society recognized this huge transition in women’s lives and made allowances.

 

Holes in diagnosis

I was diagnosed with Benign Joint Hypermobility Syndrome in 2010 when I was 43.  I scored 8/9 on the Beighton Score and had other clues such as “mildly” stretchy skin, mildly blue sclera in my eyes, life-long bowel issues, an overcrowded mouth and high roof arch, migraine, heart murmur, mild scoliosis in my spine, congenital spinal stenosis, easy bruising, skin which scars easily, skin which tears easily, a positive Gorlin’s sign (ie being able to touch tongue to nose), chronic fatigue and widespread pain for which no reason could be found. My Consultant said she only diagnosed Ehlers-Danlos Syndrome when there was “significantly stretchy skin” which I don’t accept as correct.  With a family history of the symptoms of EDS (which she didn’t ask about) and my collection of symptoms it was clear I have Ehlers-Danlos Syndrome and whilst I accept I don’t have freakishly stretchy skin, to me my skin involvement is not “mild”.

Photo of stretchy neck skin

Stretchy neck skin

My skin in general is a bone of contention to me.  As well as weird lumps, bumps, moles, pigmentation and scars I’ve had some strange skin on my knees and tops of my feet my entire life, yet when I’ve mentioned it to Doctors in connection with my Ehlers-Danlos it’s just been dismissed.

It doesn’t itch and no matter how much moisturizing cream I’ve ever put on it never looks any different.  According to Doctors it’s not eczema or psoriasis but then they don’t tell me what it is.  Needless to say I don’t ever wear dresses above the knee :-/  To me it points towards Classical EDS but then I’m not an expert so what would I know?

At the time of my Joint Hypermobility diagnosis I’d never sub-luxed or dislocated a joint, didn’t have GERD or a hiatus hernia to my knowledge and had no idea I also had mast cell disease.  However, within 2 years of diagnosis my mast cell disease was potentially life-threatening, I had walking pneumonia from undiagnosed silent reflux (which is now not silent in any way!) and had subluxed 6 joints.  When the Powers That Be say Ehlers-Danlos is not progressive IMHO they have no idea what they’re talking about.

When children and adults under 30 are diagnosed with Joint Hypermobility Syndrome I wonder if they, like me, actually have EDS and it just hasn’t progressed to the stage of meeting the criteria.  Of course, not everyone with JHS has EDS but as no data is kept it’s impossible to know how many younger people’s disease goes on to be re-defined as Ehlers-Danlos.

Another part of my diagnosis which with hindsight was sadly lacking is the fact that I was offered no genetic testing.  I personally think this should be compulsory for all suspected EDS patients, especially if there is a strong family history.  My brother is 6ft 2″, has eyes which slant downwards at the corners, much stretchier skin than me, had ‘growing pains’ in his legs as a child and had to stop a promising professional football career due to knee problems.  He has flat feet and a high roof palate.  As a child he used to ‘pop’ his knuckles and do robotics (a dance craze at the time) because he was hugely flexible.  Now in his early 50s he’s so stiff he can barely move, yet he’s never been ‘ill’ like I am or had any of the bowel issues, pain or fatigue that I do.   He definitely has Marfan’s traits but luckily for him they don’t seem to have affected his life to any extent.  As a child he had chronic bronchitis which was put down to a dust mite allergy (no idea how they worked that out as he was never given skin prick testing) but he apparently grew out of it.  He’s still allergic to dogs and horses though, oh and eggs.  Lots of children have allergies and some kids do grow out of them, but bearing in mind our family history of mast cell disease I do wonder if there is some connection.

My Mum was hugely flexible as a child.  She has soft, stretchy skin which scars and bruises easily.  She has pectus carinartum (aka pigeon chest) which is caused by defective connective tissue which holds the ribs to the breastbone.  She’s had reflux for 30 years and had lost 25% of the bone mass in her pelvis due to osteoporosis by the time she was 54.  She had a collapsed lung for absolutely no reason in her forties which is found in some types of EDS but not usually the hypermobile type, and horrible varicose veins which developed in her twenties.  She’s had 3 fatty tumours removed from her skin and has very wide stretch marks due to pregnancy.  She also has dupuytrens contracture in her hands, which is due to defective collagen.  I can find no data to connect dupuytrens to EDS, but as there is barely any statistical data on EDS to start with it’s not surprising that no-one is looking for a link.  It seems too coincidental to me that someone with EDS has a genetic, un-connected connective tissue disorder of the hands.  She has obvious mast cell disease, though not as severely as me.

Dupuytrens contracture

So my family history seems to be a mix of Marfans traits, Classical EDS traits, possibly vascular EDS traits and Hypermobile EDS traits.  Chuck in MCAD and other inherited diseases (familial essential tremor, dupuyrens contracture, early onset osteoporosis – all through the maternal line) and to me genetic testing should have been carried out.

I don’t know whether at this late stage to push for genetic testing or not.  I’m not sure what it would achieve, however it might help my future disease management if it shows I have classical EDS traits as well as hypermobile.  It would also obviously be beneficial to find out if my Mum’s collapsed lung was connected to her EDS or not and whether unexpected vascular events are something I need to be concerned about.

I get sooooo fed up of being my own Doctor and at having to fight for every blummin thing.  What happened to medical staff looking after me and telling me what I need, instead of the other way round? 😦

ME: the facts

Following on from yesterday’s post, I am a little calmer this morning and thought I’d share a few facts with my readers to balance EDS UK’s appalling article.

1. ME is not a psychological disease.  It is classed by the World Health Organisation as a neurological disorder (Reference 93.3). The UK Department of Health accepts this classification and recognises ME as a neurological condition of unknown origin.

2. It has strict diagnostic criteria.  Admittedly they need to be revised as they are too broad and capture a proportion of people who don’t have ME, as well as those that do, and this problem with diagnosis is something I know the UK ME charities work tirelessly on with the Government.  The Holy Grail of a diagnostic test would end this confusion.

3. If your symptoms eventually turn out to be due to another disease and not ME, it means you have a rubbish doctor who hasn’t done his job properly, not that ME doesn’t exist.

4. You can have other conditions alongside ME.  Just because you have one disease doesn’t mean you can’t develop another, eg Ehlers-Danlos and POTS.

According to Cathy Collier, I don’t have ME and need to look harder for what’s actually causing my symptoms, so I thought I’d take a look back at the all the diseases I’ve had ruled out and see what’s left.  I don’t have:

  • Multiple Sclerosis or other nerve or neurological disorders
  • Peripheral neuropathy or other neuropathies
  • Cancer
  • Thyroid disease
  • Hormone imbalance/disease
  • Blood disorders
  • B12 deficiency
  • Iron deficiency
  • Vitamin D deficiency
  • Coeliac disease
  • Gallbladder disease
  • Liver disease
  • Ovarian disease/PCOD
  • H Pylori infection
  • Stomach ulcers
  • POTS
  • Periodic limb movement disorder
  • Sleep apnea
  • Gastroparesis
  • Osteoporosis
  • Lyme Disease
  • Chlamydia Pneumonae
  • Mycoplasma infection
  • Allergies
  • Epilepsy
  • Autoimmune disorders
  • Arthritis or other inflammatory diseases
  • Mental health disease

So, other causes for my symptoms have been ruled out which is one of the diagnostic criteria for ME.  In addition my illness:

  • Followed an acute infectious event (in my case a tummy bug).
  • Became chronic.
  • Reduced my pre-illness activity to under 50%.
  • Includes the hallmark symptoms of ME, such as post-exertional malaise, delayed fatigue following activity, fatigue unrelieved by rest, sore throat and tender lymph glands indicative of ongoing immune activation (amongst a dozen others).
  • Being treated for my other diseases, eg EDS and MCAD, had no effect on my ME symptoms whatsoever.

Just like the hypermobile form of Ehlers-Danlos, ME is a diagnosis of exclusion, a history indicative of the disease and hallmark symptoms, such as post-exertional malaise and delayed fatigue unrelieved by rest which are almost exclusive to this illness.  ME does exist as an illness in its own right and it’s possible to accurately diagnose it, although to rule out all the other causes for your symptoms can be a long and frustrating process.  However, it took 42 years for my EDS to be diagnosed so long and arduous journeys are not unusual in the chronic and misunderstood disease world.

There has been a two decade long battle to get ME recognised and there is now a huge amount of research pointing towards problems with muscles, nerves and the immune system which refutes absolutely any suggestion that ME is a psychological disorder.  In addition there are many other diseases for which no single, diagnostic test is available (hypermobile EDS for one) yet no-one suggests for one minute they are imaginary or don’t exist.  I can’t believe, in 2015, I’m still having to defend the condition against this sort of ill-informed prejudice.  When is it going to stop?

Bits n Bobs

There’s nothing like starting off a Blog post with an informative, clever and witty title……..or not as the case may be ;-).

I’ve added a new page to the site on My Symptoms so that you can compare yours to mine (you wouldn’t think it was physically possible to have this much wrong with you yet still look like a totally normal functioning human being, some of time at least).  I actually found this page quite hard to write.  I’ve been ill now since 1994 and have had so many symptoms over the past 20 years it’s hard to remember them all, especially as some of them have, for the most part, gone and only come back when I have a relapse (which, thank God, is rare these days).  It’s also been so long since I was healthy I just accept my broken body, and forget that the myriad of symptoms I cope with every day of my life really isn’t normal.  So I’ve no doubt forgotten some issues that are quite important and will keep going back to the page and adding as I remember (I sooooo miss having a properly functioning brain)!

I also forgot to add my ‘dirty elbows’ to my Skin post so have updated that.  Does anyone else have ‘dirty elbows’?  I have no clue what this pigmentation is all about, or why it’s just on my elbows and no-where else!  The skin isn’t dry or hard or rough, just brown for absolutely no reason.  I’m sure it’s nothing at all to worry about (not that I do, worry I mean) but it does look like I can’t be bothered to bathe (which, if I’m honest, I can’t most of the time – it’s exhausting – but that’s not a fact I’d like my elbows to advertise to the entire globe!).

And speaking of skin, I have large chunks of it missing now that summer has (finally!) arrived here in the UK.  I made the fatal mistake of wearing flipflops (which resulted in the skin between my toes being rubbed clean away) and a pair of trainers without socks (which resulted in blisters the size of coins on both my little toes).  Having ‘delicate skin’ sounds feminine and romantic but in practice is a bloody nuisance.  Plus, you can’t wear orthotic insoles with summer shoes, so of course I went over on my ankle several times which is now swollen and a lovely shade of greeny purple.   Someone on the EDS forum posted a link about sandals which contain custom built-in orthotics.  They look just the job, so I’m making an appointment with my Podiatrist to see if I can get a copy of my prescription to have some summer shoes made.  Honestly, this being ill malarkey is soooo expensive and all at a time when you’re skint-a-roony because you’re unable to work as you’re ill :-/

The excitement for the week was receiving my DNA testing kit from America.  The hypermobile type of Ehlers-Danlos Syndrome is the only type for which a gene hasn’t been identified, so a group of patients on the Inspire EDS forum have decided to have their genes tested at their own expense and to pool the results to see if they can come up with any patterns.  I decided to take part (costs about £116 including shipping) as the test provides a mind-blowing array of information including your ancestry (ie African, European, Asian), how Neanderthal you are (probably 90%, the other 10% being ape 😉 ), how well you metabolize drugs (this will be very interesting considering I can’t take drugs of any description), which diseases you genetically carry (I’m looking specifically for Dupuytrens Contracture, Osteoporosis and Essential Tremor as my Mum has all three) and which diseases you are at risk of contracting.  I now have to wait about 2 months for the results (the suspense will kill me because I’m really not the most patient patient in the world!).