Tag Archives: peri-menopause

Entering Menopause

I have been in peri-menopause (where hormones are declining but you still have periods) for nearly 8 years now but have recently skipped 2 periods so assume I’m finally transitioning into full menopause.  I am 52, which is the average age for Menopause in the UK, and have been desperate for my periods to end due to decades of horrendously painful endometriosis & adenomyosis-related menstrual cycles.

In the first 5 years of peri-menopause I only had a few symptoms, such as:

  • Sudden uncontrollable rages (though in fairness I was having a nightmare with my alcoholic Mum, so maybe not all of that was hormone-related!)
  • Dizziness (which turned out to be very low ferritin, ie iron, stores and once that was addressed the dizziness improved substantially)
  • Occasional itching in the lady-garden, particularly after my period which sounds trivial but drove me bonkers
  • Itchy skin
  • Insomnia
  • Oily night sweats, which went on for a good 4 or 5 years
  • Hair loss on a grand scale, though this could also be related to my mast cell disease
  • A couple of hot flushes

In years 5-7 of peri-menopause some of these symptoms went, only to be replaced by new symptoms:

  • The night sweats ceased
  • The rages subsided
  • The itchy skin was much improved
  • After treating my low ferritin stores the insomnia was much better and I slept really well

However, I then developed:

  • Shooting nerve pain in both breasts, plus a pea-sized lump which worried me enough to see the Doctor.  I had a mammogram and all was thankfully fine.
  • Palpitations and skipped heartbeats, which again worried me enough to see the Doctor.  I had a 24 hour Holter monitor fitted, which showed the electrical activity of my heart was abnormal but this was put down to hormones and no-one seemed concerned (they weren’t the one whose heart was having a hissy fit!)
  • I had several episodes of what felt like strokes – suddenly feeling like I’d been coshed over the head, saw stars, then struggled to speak.  This was usually followed by crashing blood sugar levels.  Very scary.  I think these were my version of a hot flush – trust me to be different.
  • My migraines increased in both frequency and severity.
  • Periods of anxiety, which is something I’ve never suffered from before.
  • I started feeling poleaxed by exhaustion, which was quite different from the poisoned, fluey exhaustion of my M.E. or the over-work exhaustion of my hEDS.
    meno tired
  • My brain fog increased.
  • I gained yet more weight (aided by out-of-control munchies), felt bloated with water retention and my breasts were often massive and very tender.
  • My periods became heavier and more clotty, but nothing uncontrollable.

This last 6 months, as I’ve clearly been transitioning from peri to actual menopause, things have changed again:

  • The shooting breast pain has gone, to be replaced by shooting nerve pain in my legs and feet.  It’s like being stung by a cattle prod and is truly unpleasant.
  • My back pain, from which I’ve suffered all my life but was under-control, has gotten much worse and my legs often feel numb.
  • My already present brain fog has been severe.  It reminds me of the days when I was bedridden with M.E. and feels like I’ve been drugged.
  • Exhaustion has been crippling and not helped by ongoing insomnia.
  • I’ve lacked motivation to do anything, which is very unlike me.
  • My moods have been up and down, either irritated by everything or completely overwhelmed by life.  Again, this is very unlike me as my mood is usually stable.
  • My migraines have been dreadful.
  • I’m as fat as a whale.
  • My entire body is stiff and I ‘ummpff’ when I get out of a chair.
  • My muscles are definitely weaker, my legs in particular but I also have no power in my hands for taking lids off jars or even writing.
  • My skin is very dry and starting to sag everywhere.
  • I’m hot most of the time.  It’s hard to describe, but is like I’m sitting uncomfortably close to an open fire.
  • I have a mild version of the head coshing events every morning.   I can be sitting watching the telly and my brain suddenly feels like it moves in my skull, then I get a whooshing sensation (a bit like I’m starting with anaphylaxis), then I feel a bit dizzy and off-kilter and my blood sugar plummets.  I’m still convinced these are my version of hot flushes – why couldn’t I just sweat like a normal person instead of worrying I have a brain tumour or am having a stroke?!
  • My brain fog is truly dire and I am slightly dizzy and disoriented all of the time.

During peri-menopause, I felt like my symptoms were manageable (stroke-like episodes aside which frightened the life out of me), but the past 6 months the whole menopause thing has become harder to cope with.  The worst aspects are the profound exhaustion where I literally don’t have the energy to get off the settee let alone cook a meal, and the brain fog which is so bad at times I simply can’t function.  I’m also continuing to have the stroke-like attacks, which now happen every morning and still scare the bejesus out of me.  I have aged literally overnight and it’s very disconcerting to look in the mirror and see some random stranger you don’t recognize staring back at you (I genuinely mean this – the ‘me’ I’ve seen my entire life has gone and it’s like my face has been replaced by someone elses!).

On the plus side, in the 2 months since my last period my migraines seem to be settling down again and I can’t describe how fabulous it is not to be tortured by severe period pain.  However, I am still getting period pain!  I seem to have constant low level, grumbling pain which ratches up into proper period pain every 2 weeks or so (though nowhere near as severe as when I bleed).  I wasn’t expecting that, though Dr Google tells me that “phantom periods” are normal and could go on for some considerable time.

So, that’s where I’m currently at.  This year, I must admit, has not been much fun and although I never thought I’d contemplate HRT there have been times when I’ve not been able to get out of bed where I’ve seriously considered it.  I’m holding off for now as HRT has its own side-effects (not least thrush, which I suffered from constantly when on the contraceptive pill) but never say never – watch this space.

Say Yes to the Menopause

I skipped a period last month and am currently on day 55 of my cycle.  It’s not the first time I’ve missed a period, it happened 9 months ago and I got all excited thinking Aunt Flo had finally left the building only for her visits to continue on as normal the following month, but this time something feels different.

I am hot.  I don’t mean I’m hot (there are chastity belts with more sex appeal than I currently possess), I mean I am boiling.  All of the time.  I’m still not having traditional hot flushes where you go bright red and sweat like a hog on a spit, but I am definitely having moments where I feel like I’m stood too close to a forest fire and my skin is turning to crackling.  Having spent several years bathed in oily sweat at nights, I’m now also roasting every morning and have repetitive strain injury from reaching for the toggle on my ceiling fan.  At least I’ll save on heating bills this winter, even if my dog gets hypothermia.

I’ve gone from looking pretty good for my age and still turning the odd male head, to Mr Blobby.  I am frumpy, saggy, dried up and have never been this fat in my entire life.  I know I need to diet, but I have a crack addiction to sugar and am liable to stab you with a bread knife if you get in the way of me and my cookie jar.  The thought of healthy food makes me want to barf but I would crawl over hot coals for just a snif of salted caramel Haagen Dazs.  By the time I’m 55 I’ll need to take the window out of my lounge to leave the house cos I won’t be able to fit through the door.

I have insomnia.  Again.  Due to a combination of M.E. and raging histamine levels I spent the better part of twenty years unable to sleep and just when I finally get everything under control and am rendered unconscious for six blissful hours every night my hormones die a death and I’m back to staring at the ceiling at 3am.   It’s just plain rude.

I’m a naturally bubbly person with plenty of joie de vivre.  After spending a decade sick in bed, any day I’m not in pyjamas is a good day and although I have strong opinions I don’t sweat the small stuff.  However, with Aunt Flo’s imminent departure my personalty seems to have done a bunk and there are now people in locked psychiatric wards who  are more emotionally stable than me.  Every driver road-rage.jpgon the road is a twat.  Every inventor of anything electrical is a twat, Bill Gates is obviously a twat, politicians are twats, car parks are designed by twats, farmers who own ridiculously loud tractors are twats (in fact, farmers in general are murdering twats) and of course people who place cash offers on bungalows are the biggest twats of all.  In fact, every person in the universe bar me is a twat, except my best mate and possibly my dog (although he does have twatish tendancies).  And when I’m not calling everyone, and his dog, a twat I’m lying sobbing on the kitchen floor, with snot streaming down my nose, feeling like my Granny has died.

I have zero energy and even less motivation.  I’m not depressed, I’m just absolutely and utterly knackered and all I want to do is lie in bed all day eating crap and watching Say Yes To The Dress.   This is in stark contrast to a quarter of a century with M.E. where I wanted to do stuff but simply couldn’t.  Now I am physically able to do stuff but simply can’t be arsed.  Having a tidy house, clean clothes and acceptable levels of personal hygiene are over-rated – I’d rather find out whether she chooses the ballgown or the fit ‘n flare with the sweetheart neckline while stuffing my face with alternating Pringles and peanut M&Ms.

There is, however, good news.  The reason I have prayed for the Menoapuse to arrive is that I have spent decades crippled with pain from severe endometriosis and adenomyosis, and while I am still getting cyclical pelvic pain it is nothing compared to the agony I am used to.  And while the past six months have seen my migraines ratch up a notch or ten, the past few weeks I’ve barely had any head pain at all, which is another hugely welcome bonus.  Long may both continue.

 

 

The never ending Peri

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.   However, I found nothing online so started keeping a chart on my cycle length as well as notes on my symptoms and I now have another 12 months worth of data to share with you.

I’ll start off with my first chart.  I’d 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.  The red line indicates 28 days – click on each chart for a larger view.

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 FSH level tested and it came back as “normal” which isn’t at all unusual in the early stages of peri-menopause.  However, it was in this year that my previously unknown mast cell disease exploded and I was very unwell.

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.  By now I’d started on a low histamine diet and thankfully had stopped passing out every time I ate.  Many of my other MCAS symptoms remained, however, and continue to this day.

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


In 2017 my periods became even more erratic.  My moods had fairly much evened out, though, and I was back to feeling more like myself despite episodes of anxiety for no apparent reason which is fairly common in peri-menopause.  I still hadn’t had any hot flushes, though my sleep was definitely affected and there were times I struggled with insomnia.  I did have some wicked skipped heartbeats and palpitations, though, and in the end had this checked out by wearing a 24 hour holter monitor and it show up on the trace but was put down to peri-menopause and not any kind of heart issue.  My migraines around ovulation and menstruation definitely became worse and could last for days which was crippling.  My energy levels took a nosedive and my brain fog some days was dreadful, however this may have be due to the fact that I was borderline anaemic rather than being solely down to my hormones.  Two other symptoms I noticed this year were weight gain and very painful, itchy breasts which were checked out via mammogram and were thankfully fine.


In late 2017 I started taking iron supplements for my low ferritin levels and my insomnia and exhaustion improved.  In fact, my sleep during 2018 was the best it’s been in 25 years for which I am grateful beyond words.  I continued to struggle with weight gain despite eating the same amount of food, though I did have the rampant munchies and know I ate more sweets and crisps than I should have 😉  I still didn’t have any hot flushes, however I had some very scary episodes of feeling like was having a stroke which I put down to vasomotor issues – about 5 in one year, which doesn’t sound a lot but they frightened the life out of me.   My skin was becoming much drier and I developed jowls on my face – I now avoid mirrors first thing in a morning because I look like my Nan!


During 2018 and the early part of 2019 the trend for erratic periods has continued (ignore the months on the chart as I no longer have a period every 28 days so the months now don’t tally!).  I had my shortest cycle to date at 12 days and my first missed period and thought “hurrahh, I’m finally going to reach menopause” only for Aunt Flo to continue her visits as usual.  Bugger it.  I have been profoundly tired and often horribly brain fogged and confused again in the last year and really should get my iron levels re-checked – the more tired I am the less well I can cook and then I don’t eat as much iron-rich food as I should.  My migraines have also been the worst in years, which is so disappointing as they had settled down quite well since going on a low histamine diet.  My weight seems to have stabilized even though I’m now 10lbs heavier than I’d like to be, but I do have to be careful what I eat and certainly can’t eat the portion sizes I always have.  I’ve had a few more of the stroke-like attacks, which I still think are hot flushes in disguise, and am definitely hotter in general than I used to be particularly first thing in a morning.  My skin is now very dry and my ladygarden is very itchy (though not dry as yet).  In 2019 my joints started to constantly hurt and if I do any kind of activity I tear my ligaments.  However, I’m still sleeping really well most of the time which is the biggest blessing from all this hormone malarkey.

So, my peri-menopause seems to be trundling along at a snail’s pace and, despite the fact I will shortly be 52, there is no sign that my periods are imminently going to end.  I’m having many of the symptoms of peri-menopause, but so far they’re 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.  Howwever this all may change as the actual Menopause arrives and I’ll probably end up reaching for the Prozac and the desk fan, but so far so good!

 

Menopause Myths

It’s brilliant that the Menopause has finally been hauled out of the closet and is being talked about, although the peri-menopause is still lurking in the shadows.  The fact these fundamental female issues have been ignored since the dawn of time is scandalous and you can guarantee if they happened to every man on the planet we’d know a shit load more about them than we do.

I read a truly excellent article on Menopause recently and if you’re interested in the subject it’s well worth a look.  The more I learn about this monumental change in women’s lives the more livid I become.  In the article, trainee GP Hannah Short states “The menopause wasn’t in any of my textbooks”.   Say what?!   A biological process which causes problems for over 70% of women often for the rest of their lives doesn’t even rate one sentence in the training of our health care providers?  It’s insanity.

The myths surrounding Menopause are legendary, so I thought I’d highlight a few:

  • It’s a natural process, not a disease, and doesn’t require treatment.
    Pregnancy and childbirth are natural processes, but that doesn’t mean expectant mothers don’t need monitoring, advice, sometimes medical intervention or any kind of health care.  Men’s prostate function declines as they age, and ageing is a natural process, yet they are still placed on prostate drugs when they have to get up 5 times a night to pee.  In other words, all sorts of issues can be put down to ‘natural processes’ but that doesn’t mean we ignore them and offer no help, guidance or treatment.
  • The Menopause lasts approximately 2 years.
    This is a blatant lie.  For a start, most women experience peri-menopause (winding down of hormones) before the actual menopause (periods ending) and the peri-menopause can last anywhere from 2-10 years.  I’m in year 7 and my periods are still regular, if totally haywire.  Virtually nothing is known about peri-menopause as nearly all the limited research has been conducted on menopausal women, not on peri-menopausal women.
  • The Menopause begins in your late forties.
    Having read many menopause forums now, I can categorically state that for many women this is absolutely not true.  It seems to be quite common to experience the first symptoms of peri-menopause in your late thirties, a fact not recognized by most health care professionals.  My periods started to behave differently when I was 44, and my best friend started noticing changes aged 41.  When it comes to actual menopause, see the next point.
  • The average age of Menopause in the UK is 51.
    I appreciate the word ‘average’ is being used, but it kind’ve gives the impression that your periods will end between the ages of 50 and 52 and that isn’t born out by the experience of my female relatives.  My mum was 54 when her periods stopped.  Three of my cousins all had their last period by the age of 49.  My sister-in-law went through menopause at 46, my other sister-in-law was 53 and my next door neighbour was 54.   I’ll shortly be 52 and my periods are showing no signs of ending.  And that’s just a small sample of the differences experienced.
  • The earlier you start your periods the earlier you will reach Menopause.
    Virtually no research has been conducted on this, but from the little information available this appears not to be the case.  I started my periods aged 11 and at the age of 51 am still menstruating.  The three cousins I mentioned above all started their periods in their mid teens yet all reached menopause before the age of 50.   So I can certainly say in our case this is a myth.
  • There is a blood test to tell you if you are in Menopause.
    If you live in the UK and think you might be in peri-menopause there is no test which will confirm this for you.  FSH (follicle stimulating hormone) can be used to check your status but if you’re over the age of 45 and having peri-menopausal symptoms your GP won’t offer it to you as it’s considered unnecessary.  If you are under the age of 45 and showing peri- menopause symptoms you may be offered the test, but unless you are on the brink of actual menopause the results will be about as much use as a chocolate fireguard as your FSH can swing wildly during peri-menopause.  So realistically there is no blood test to indicate you are in peri-menopause and if you’re in actual menopause you don’t need a blood test to tell you your periods have stopped.  It’s a crap situation which desperately needs addressing.
  • There are no treatments for Menopause.
    When you Google peri-menopause and menopause you get all the usual shite about drinking more water, eating better and taking more exercise.  Why is there an assumption that middle-aged women are alcoholic couch potatoes who live on chicken nuggets and curly fries?!  It’s so insulting, as most of us lead incredibly healthy lifestyles and are very careful about diet and exercise as we are putting on weight without trying (a consequence of our declining hormones).  There are hormonal options for treating the symptoms of peri-menopause and menopause (HRT and testosterone replacement) although they are currently crude.  Finding a doctor with any decent knowledge of them, however, is rare.  There are only 2 hormone clinics in the whole of the North of England serving 2.5 million peri-menopausal and menopausal women.  Of course, not all will need treatment but as 70% of women experience problematic symptoms it’s obviously a vastly under-resourced area.  Your GP may prescribe HRT (but not testosterone) and then again they may not – confusing research on the risks of cancer due to HRT has caused reticence.  You absolutely won’t be offered bioidentical hormones on the NHS and realistically are more likely to be offered antidepressants than anything.
  • Symptoms go when you are through the other side of Menopause.
    This is the biggest myth of all.  My Mum asked me the other week if I could get anything at Tesco to help with vaginal dryness and itching.  “Why, are you having problems?” I asked her.  “I’ve been having problems since my periods stopped” came the reply – she’s now 79.  She also still has hot flushes and so too did my 76 year old paternal grandmother, who used to sweat so much every day of her life that it dripped off her chin end.  The information on what happens post-menopause is virtually non-existent and more women than we realize have menopause symptoms until the day they die.

That so little is known about peri-menopause, menopause and post-menopause is shocking but unsurprising.  Issues which solely affect women have historically been ignored and those women experiencing problems have been told it’s their fault for lacking the constitution to cope with this ‘natural’ change.  We are clearly mentally fragile and overly emotional.   Bollocks is what I say to that.  If men went through a fifth of what women deal with the country would come to a grinding halt.

I hope in the current climate of female freedom of expression that health issues which affect women will finally start to be researched.  However, truly effective treatments are decades away.  There are really easy things that could be done now, however, to improve the situation such as regularly checking women’s ferritin levels as many of us are iron deficient during both puberty and peri-menopause.  Even that simple measure doesn’t happen though and women are basically just left to get on with it and to cope the best we can.

Mentioning Menopause

When I first noticed my periods were going a bit haywire I went along to see my GP just to check everything was OK.  She said it looked like I was starting the menopause and not to worry, it would be over with in two years.  That was seven years ago and I’m still waiting for my periods to end.

I can’t really blame my Doctor.  She most likely had one lecture about the menopause in medical school and it was probably taught by a man.  The lack of information about menopause and peri-menopause amongst medical professionals is scandalous and I now know from experience the only useful appointment you ever have is if you actually see a nurse or doctor who has been through it themselves!

I’ve talked to my Mum about her menopause and she put the fear of God up me.  Both her and my Nanna had horrendous flooding and in the end my Mum had to have her womb cauterized.  She was probably anaemic for years so consequently had insomnia and very little energy, and in her mind this is what menopause is like for all women.  Only of course it’s not and thankfully hasn’t been for me.  I’ve had some not very nice symptoms, including on a few occasions thinking I was having a stroke which was really scary, but I’ve coped well I think so far though that may change when my periods actually stop.

I talk quite openly about my peri-menopause.  Not in great detail, but if I have trouble remembering stuff or lose my thread mid-conversation I will just say “sorry, menopause moment there!” at which point the person I’m speaking to will look horrified, even if they’re female.  Historically it’s just not something women have ever talked about and has been some kind of shameful secret, despite the fact every single woman on the planet will go through it.

Until twelve months ago, it was never mentioned on TV either and then something changed……….maybe a BBC exec is female and is going through it?……………..and suddenly it was all over the telly.  A documentary was recently made about it and all last week BBC Breakfast covered the topic, which I think is great if a little overboard.  However many people, mostly men but including some women, think we need to shut the hell back up about the menopause.  It’s an “uninteresting” event that women have been dealing with quietly for millennia, says Julie Birchill in the Telegraph and hundreds of commentators to her article agree.  It’s not the first time women have sabbotaged other women.  It still blows my mind that any woman voted for sex offending, mysogenistic Trump, for example, while others have criticized the #MeToo campaign.  I can only think that the brain washing of girls from the day they’re born into thinking their experiences are insignificant and we just need to put up and shut up runs deeper than any of us realize.

Despite the fact the BBC have covered the menopause all week, actual information about the condition has been sadly lacking.  It’s great to hear about other women’s experiences, but some advice about what to expect or help with symptoms would be useful.   The reason this hasn’t happened is that there is very little real information ‘out there’ on the menopause.  It’s the last big female event that has yet to be studied.  Can you imagine having a baby and your midwife saying “sorry, we don’t know much about childbirth but it’s a natural event so I’m sure you’ll be fine”?! or “maybe you’d like to spend hundreds of pounds visiting a private hormone specialist because NHS childbirth treatment is wildly out of date?” because that’s how we’ve always viewed The Change.  The best advice the BBC could come up with on coping with hot flushes at work was to wear layers and have a desk fan.  FFS!  No mention of treatments to stop hot flushes because to be fair we don’t know what causes them and existing hormone treatments work for some women but definitely not for others.

There’s even been hoo ha this week about using testosterone replacement therapy in menopausal women.  All women have some testosterone, it’s not just a male hormone, and of course it can disappear during menopause just like your other hormones, only it’s never talked about.  Can you imagine if men’s testosterone disappeared in middle age and they suddenly had no interest in sex?!   It would be headline news, yet women’s sex drive and stamina can vamoose and we’re just expected to live with it.

I am delighted there is finally recognition of the menopause and that we are able to openly talk about it for the first time in history.  It’s not just women who need to know what’s in store, but our men folk and children too because it’s also going to affect them.  I’ll never forget Keira Knightly writing a short essay for the book Feminists Don’t Wear Pink (And Other Lies) about the realities of childbirth and the fact her vagina tore, and her husband admitting he had no idea that had happened!   It’s the same with menopause.  Some women sail through but many don’t and for all of us it’s a transition and, just like childbirth, I don’t think we’re the same people once we’ve come through the other side.

I personally seem to have developed a “fuck off” button, alongside slovenly housework habits, pleasure seeking tendencies and an addiction to peanut M&Ms.  I’m also both more chilled and more grumpy than I’ve ever been before.   My waistline is disappearing at an alarming rate despite the fact I eat less than I ever have and I will never again wear shorts due to my thighs resembling an entire crate of Jaffa oranges.  I feel like an entirely different person to the me of my twenties and thirties and that’s taking some adjusting to, while at the same time being hugely liberating.

I’m loving being a menopausal woman in today’s society, which is finally recognizing us and our experiences.   Middle aged women have always been invisible and I will not apologize for the spotlight currently being on girls because it’s been on boys for a few thousand years and we have a lot of catching up to do.

 

 

Neuropathic pain

Neuropathic pain is just a fancy word for pain which is coming from the nervous system.  It can also include altered sensation like burning, pins and needles, and sensitivity to touch or pressure.

When I was severely affected by M.E. my neuropathic pain was legion.  I had no idea there were so many types of pain and they tortured me every second of every day.  My legs burned like they were on fire – it was so bad I used to lie with wet towels wrapped round my thighs just to get 20 minutes of relief.  Luckily now I’m less severely affected this has improved and my muscles only burn if I’ve done too much.

I have had severe pins & needles in my hands and feet for nearly a quarter of a century.  It is constant and feels like I’m plugged in to the electric.  It was so bad when I was severely ill with M.E. that putting on shoes or walking was excruciating – it felt like the soles of my feet were full of crushed glass.  I also used to get pins and needles in my face, tongue and scalp.  Even now, as I lie in bed typing this, it feels like there’s a swarm of bees buzzing away under the skin in my feet.   It is not fun.

For about 4 years I was so sensitive to touch that I couldn’t bear anyone near me.  If someone inadvertently brushed my arm pain would shoot along my nerves and explode in my brain like a bomb.  Now I am less severely affected by M.E. this has improved but I still wince at sudden touch and having a gentle massage would bring both pleasure and discomfort.

Over two decades on I thought I’d had every type of neuropathic pain imaginable but I was wrong.  Three years ago I started getting sharp, stinging pain in my breasts.  It would come on suddenly for no reason and take my breath away.  I went to see my GP, who discovered my breasts were so lumpy from peri-menopausal hormones that a proper examination wasn’t possible, so sent me for an early mammogram.  Thankfully all was fine and having read menopause message boards online I discovered neuropathic pain is a ‘thing’ for some menopausal women.

The breast pain eventually went, to replaced by neuropathic pain in other parts of my cattle prod body.  My lower legs, ankles and feet have been particularly affected during the past year though I can get it just about anywhere.  I’m lying in bed minding my own business when suddenly it feels like I’ve been zapped by a cattle prod.  This can happen every couple of minutes and has, at times, seriously disrupted my sleep.  Not only that but I’m getting weird cramps in my calves and my toes keep going rigid.

I’ve been tested for peripheral neuropathy and, as far as I can remember, they concluded I didn’t have it.  If anything my nerves are hyper-responsive to stimuli not under-resonsive.  The only abnormality that ever shows up is massively brisk reflexes, which doctors don’t ever seem to be concerned about despite the fact that I get muscle twitching, cramps and jerking (as I type this my right big toe is rigid and pointing down to the sole of my foot and both large muscles in my thighs are in spasm).  I also get crawling sensations and huge goosebumps over the skin in my legs for absolutely no reason.

When I was severely affected by M.E. my gait (ie the way I walk) was obviously abnormal and I took very high loping steps.  How any doctor I saw could ever tell me I was fine and just needed to pull myself together still makes me livid – it just shows the power of suggestion (by psychiatrists that M.E. is a mental health issue) rather than impartially observing the clinical signs which could not have pointed towards neurological disease any harder if they’d tried.

Regular pain killers have zero effect on neuropathic pain.  The best drugs are anti-seizure meds such as Pregabalin and Gabapentin.  My Mum has had shingles twice, as well as severe post operative nerve pain, and swears by Pregabalin.  I also have friends with M.E. who couldn’t manage without it.  Of course, I’m so drug allergic there’s no way I’d tolerate something so potent.  Please, I beg you, don’t comment and ask if I’ve tried x, y or z drug, herb or treatment – it’s really insensitive to someone in my situation (I had an anxiety attack last night trying natural, organic yoghurt for the first time in 5 years :-/ ).  And, yes, I know all about magnesium – I take antacids every day and as a result my blood work shows a higher level of magnesium than should be there.

I just put up with all the weird nervy stuff and accept it as part and parcel of my myriad of diseases – I have no idea which part of the nerve stuff belongs to which illness, not that it matters.  I really hope the stinging pain bogs off when I’m through the menopause though cos I’m getting proper fed up of that :-/  I’m proper fed up of the menopause in general to be fair and just wish it would jog the hell along!

Weekly roundup

I’m kinda glad this week is over.  Although I really enjoyed doing my photography talk up in Scotland it was months of preparation and worry about how my health would hold out which has felt like a lot of pressure and my mast cells don’t do pressure – I’ve had hives on my bum for weeks.  My Mum & Dad (well, my Mum……..my Dad wouldn’t think to!) bought me a card and a bunch of flowers to say “well done” and I was really touched.  Due to Mum’s alcoholism she hasn’t done anything like that in years because she hasn’t cared less about my life.  Now she’s massively cut down on her drinking she does seem to be much more engaged.

I am on day 43 of my menstrual cycle.  Dare I hope that this is the beginning of the end and I’ll finally be saying goodbye to The Curse which has tortured me for 40 years?!  Every day for the past fortnight I’ve felt like my period is going to start as I’ve had bloating, migraines, period pain, backache and exhaustion but as yet there is no sign and my boobs aren’t sore – they’re always sore leading up to my period so that’s weird considering I’m having all the other symptoms.  My back pain is terrible, though, the worst it’s been in years and I have had horrible shooting nerve pains in my legs and feet – I’ll be lying there in bed and all of a sudden it’s like I’ve been stung by a cattle prod :-/  A couple of years ago I had the same pains in my boobs and was sent for an early mammogram but all was fine and they eventually disappeared, so I’m sure it’s ‘just’ my hormones.

My Dad was due to have an echocardiogram of his heart on Thursday, which is basically an ultrasound to check the structure.  I offered to go with him but as he wasn’t seeing the consultant or anything he said he’d be fine and my Mum went instead – he’s had an ultrasound on his gallbladder & kidneys so knew what to expect.  Afterwards I rang to see how it had gone and he said “Grand.  She put the sticky pads on my chest and I was in and out in 10 minutes” which I knew wasn’t right.  The sticky pads are used to do an ECG (ie heart rhythm trace) and as he’d already had a 4 day ECG done he didn’t need another.  I quizzed him a bit more and he was adamant that he’d had the sticky pads and no scan, so I phoned the hospital to find out what was going on.  Sure enough, he’d had a scan and they had the results on the screen.
So I asked him again.  “Did the lady use a wand or anything on your chest Dad?  Was there a screen next to you?”
“Oh yes, she pressed into my ribs, then I had to lay on my side and she pressed again.”
“And you didn’t think to tell me this when I asked the first time?”
“Should I have?”
Bless him, you can’t trust a word that comes out of his mouth.

Today I really must do some housework because the place looks like a bomb has hit it.  I haven’t touched housey-type jobs in 3 weeks as I was conserving energy for my talk but I can’t put it off any longer.  There’s one huge obstacle though…………….I fucking hate housework.  And paperwork.  And having to put away my garden furniture for winter.  And clipping the dog.  And scrubbing poop off the bird feeders.  And changing halogen bulbs in recessed ceiling lights (why in God’s name has that been made so complicated?!).  And ringing the electrician to come and look at my faulty outside light.  In fact, anything which doesn’t involve taking photos 😉  I hope the Universe knows that I need a lotto jackpot win so that I can employ a servant to do all this boring shit for me and sorts that out tout de suite if not sooner!