Tag Archives: histamine intolerance

Weekly roundup

I’ve been feeling rubbish for a month now, with particularly bad ‘brain fog’.  Both my back pain and insomnia are the worst they’ve been in years and my get up and go has got up and gone.  My joints are stupidly stiff, particularly in a morning, and there isn’t a ligament, large or small, which doesn’t hurt.  Yay.

I’ve not had a cold or a virus, not been under any different stresses to usual and not been doing or eating anything I shouldn’t, so I can only put it down to my hormones which are definitely on the rampage.  My endometriosis pain is really bad every single day at the moment and I’ve no idea why that should be other than my peri-menopause is ramping up a gear.  I feel like I’m having a permanent period only without the bleeding – my worst nightmare.

However, life carries on and this week has been really busy.  Wednesday I did the 60 mile round trip to the city for Mum’s oxygen assessment for which we’ve waited nearly eight months.  It’s a dedicated COPD clinic and the physios there were lovely.  They were mortified that my Mum had lung surgery 5 years ago and has not had a single appointment since with a dedicated COPD team nor any kind of rehab, and we haven’t been given a scrap of information on her disease, how to manage it or what to expect as it progresses.  That’s because there is no COPD Clinic where we live, but just because we don’t live in a city doesn’t mean we should have a complete lack of health-care for this terminal disease.  It’s a bloody outrage.  The outcome of the appointment is that Mum’s breathlessness isn’t so much a result of a deterioration in her disease (although she is in the ‘severe’ category) but more to do with her absolute lack of fitness coupled with her poorly lungs.

Thursday I had to starve myself until 2pm ready for my gallbladder scan.  I knew I didn’t have gallstones but they did find 2 small polyps.  I seem to be riddled with polyps as they also found no less than 11 when I had my first stomach endoscopy, some of which were really quite big.  They aren’t common in the general population and I would guess are mast cell disease related (there is research which shows increased mast cells in endometrial polyps and some debate as to whether mast cells are implicated in both nasal and colon polyps which have become cancerous).   Polyps can turn nasty so should be monitored regularly, which doesn’t happen because my local hospital is skint and can’t afford to do preventative medicine.  I’m still waiting for an appointment to see the Gastroenterologist about my continued stomach/oesophageal pain and low iron levels, which I can’t convince anybody is just severe reflux (due to overly zealous mast cells producing too much stomach acid, and my weak connective tissue causing my stomach sphincter to be floppy and allowing the acid into my oesophagus.).  I also suspect I have endometriosis on the outside of my stomach but good luck with having that confirmed, because my local hospital missed the humongous amounts of endo in my pelvis when another hospital found it no problem!  They really are feckin useless.

Friday I had to be up at the crack of dawn as a plumber was coming to service my gas boiler and fire, so I had to empty out the airing cupboard in the bathroom.  Afterwards, I followed him into town to my parents’ house as they’ve had a godawful smell coming from their kitchen sink for ages now which, despite our best efforts, we haven’t been able to solve.  I got there to find my Dad looking totally washed out and discovered he’d been up all night puking.  He’s never ill so to discover he’s had some kind of bug was a shock.  Bless him, he’d been sick in the bathroom sink and must have given it a blockage because the water then wasn’t draining well so I had to nip up to B&Q for some sink unblocker.

My Mum now really struggles to get up off the couch, so this week got rid of one of the little sofas in their lounge ane replaced it with 2 riser recliner chairs, so while the plumber was doing his thing my Dad and I spent 2 hours repositioning all the furniture in the lounge trying to find the best place for them.  My back was sodding well screaming before I even started and my poor Dad looked like he was about to keel over.  Inbetween all that, my brother rang and asked my Dad to give him a lift to work so I went instead as I didn’t think Dad was up to driving.  I then had to organize for the old sofa to be taken away which sounds easy but was a sodding nightmare.  I felt so sorry for the Old Fella who, bear in mind is nearly 80, had hardly had a wink of sleep, been violently sick then had to clean up after himself, change the bed sheets and wash them along with his pyjamas, and was just expected to carry on like nothing had happened.  If my Mum had been up all night puking she would have expected to stay in bed and be cared for but my poor Dad gets no such treatment.

My garage is up a shared driveway and I have to pass my neighbour’s house to get to mine.  I often stop to chat to the lovely couple who live behind me but on Friday discovered a very stressed Rob who was having a mare with Amazon.  £79 had gone missing from his bank account and despite trying for 1½ hours he still hadn’t got it sorted out.  My neighbours are in their seventies and find the internet confusing, so I said I’d help.  I discovered he’d been signed up for Amazon Prime without his knowledge (he didn’t even know what Amazon Prime was) so I managed to cancel the subscription and get him refunded.  All of which meant I didn’t reach my back door until 4pm and was just about on my last legs due in no small part to the fact I’d only managed 3 broken hours sleep the night before.

Summer officially arrived on Saturday and the weather is gorgeous so Bertie and I sat by the river for a couple of hours watching the wildlife and having a much needed chill.  To me, where I live is paradise and as I lay there in amongst the buttercups, with little Sandmartins swooping overhead, sheep and lambs peacefully grazing just feet away and the gentle babble of the river in which a Heron was fishing I couldn’t help but count my blessings.  Days don’t get any better than that 🙂

 

Weekly roundup

I’ve had a shit week health-wise.  My last period was weird and has left me feeling rubbish.  In particular my histamine is way high – I know this because I have rampant insomnia, am peeing like a race horse, sneezing, itching, my back is in constant painful spasm and I’m having some mild reactions after eating and taking my H2 antihistamine meds.  Hives are always the last thing to appear, but appear they will – something to look forward to then 😉

In addition, I’ve had some quite bad M.E. days, the kind I’ve thankfully forgotten existed.  My brain fog has been really intrusive and left me feeling like I’ve got dementia, and I literally had to stay in bed one day as I lost all feeling in my legs.  I had a very scary hour one afternoon when I was driving somewhere I’d been going to for 40 years and got lost – I genuinely couldn’t remember how to get there and ended up driving round in circles for 20 minutes.  WTF?!

My Mum turned 77 this week.  I wish I could say I enjoyed her birthday with her, but to be fair all events are marred by her drinking now and I just endure them more than anything.  She seemed to have a nice time though so I guess that’s the main thing.  She’d asked for an electric soup maker which I bought her, but when she rang me smashed out of her skull at 6.30pm to tell me she’d made her first batch of soup it kind’ve spoiled the gift for me if I’m honest.  I know it shouldn’t have but it did, and I need to acknowledge that to myself.  After my counselling I don’t get angry about it like I used to though, so that’s good.

My Dad’s been having some dizzy spells and it must have been bad because he made his own appointment to see the Doctor!  She said he has a slow heart beat and thinks maybe his prostate medication is the cause, so he’s been taken off that to see if it helps.  Lots of things can cause dizziness in the elderly though, so it’s just going to be trial and error to discover the culprit.

The General Election result was a total disaster and I bet the cocky Conservatives wish they’d never bothered.  This bloody country continually shoots itself in the foot and is, quite frankly, going to the dogs.

My best mate is also having a rough time of it, so we met for lunch yesterday and had a laugh to take our mind off things.  Thank God for her cos she keeps me sane.

Even though my brain has been fried I desperately needed a distraction from how crap I’ve been feeling, so worked on a couple of photos I’d taken.  The marble Bust one, done using my bed sheet and marble effect toilet seat!, is just OK (I can’t get the eyes right) but I quite like the horse:

 

 

Confused.com

I’ve never claimed to have any answers to my, or anyone else’s, health problems and freely admit I just muddle along with the rest of you in the land of The Confused.  And there is no more confusing a world than that of histamine, as I’m sure many of my readers have discovered.

Having said all that, I’ve been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) for 4 years now and have learned and made discoveries along the way so thought I’d share this knowledge, for what it’s worth, with you.

When I was first diagnosed I knew I had to start an elimination diet because I was having anaphylaxis every time I ate.  Naively I just thought there’d be a foolproof diet online that I could follow and all would be well.  Oh, if only it were that simple!  I did, indeed, find diets online that claimed to be ‘low histamine’ and I followed Dr Joneja’s because she seemed like an expert and the diet was comprehensive………but it was a nightmare.  As a pesco-vegetarian it cut out all the foods I’d lived on all my life and didn’t tell me what to substitute the excluded foods with.  Having been sick with M.E., which decimates your digestion, for years before my mast cells exploded I knew that lack of good nutrition causes as many issues as exclusion diets solve, so I instinctively realized that simply cutting out so-called “high histamine” foods without substituting foods with equal nutritional value would be disastrous.  Bearing that in mind, I set about trying to find alternatives, eg I cut out tinned, chopped, tomatoes in recipes but substituted them with a home-made red pepper sauce.  I cut out Cheddar Cheese, but substituted with Mozzarella cheese.  I cut out fresh fish, but substituted with frozen fish which I discovered was gutted and frozen on-board the ship thereby reducing its histamine load.  I cut out spinach, but substituted lamb’s lettuce.  And so on.  It took about a year but I finally came up with a diet which was still balanced and nutritious but low in histamine (or so I thought!).

This is what I learned: if you exclude a food, try to substitute it with a food of equal nutritional value. 

After 4 months on a ‘low-histamine’ diet I stopped having anaphylaxis every time I put food in my mouth and the relief was enormous.  But many of my symptoms were still present, eg. hives, insomnia, itchy skin, nausea etc.  It took a while to work out what was going on, but I discovered that mast cells react to all sorts of things, not just what we eat, and that realistically I was going to have issues for the rest of my life.  In particular I was in my mid-forties and had begun peri-menopause and I learned that hormones have a massive impact on mast cells.  There was nothing I could do about the situation and 4 years down the line I’m still suffering the effects of wildly fluctuating menopausal hormones on my histamine load.  In addition, I react badly to stress (which with 2 sick aging parents to look after can be unavoidable), extremes of temperatures, my dog, some pollens and simply doing too much and getting too tired.

What I learned: I could not manage my MCAD using food alone.

My next big revelation was that all of the advice on low-histamine foods online seemed to contradict each other.  It took a lonnnng time to figure out why, but eventually I discovered that no-one was testing food for its histamine content and that all the lists online were based on nothing but guesswork.  I was devastated by this revelation and everything I thought I’d learned about food and histamine came crashing down round my ears.  It was then I really started to look at where the information online was coming from and wrote my ‘Histamine in Food: the Evidence’ page.  Even popular histamine writer The Low Histamine Chef can’t find a lab that will test for histamine in foods and with all her connections if she can’t find proper info on the histamine content in foods it doesn’t exist.  That doesn’t stop people occasionally coming on my blog and telling me I’m talking crap and that this food or that food is high or low in histamine, not realizing that far from me being wrong, they are wrong and when I ask them to back their claims up with hard data they never can.  Bearing this in mind, and finding sticking to a rigid low histamine diet really difficult, I started to experiment with re-introducing certain foods.  I still exclude foods which I know have been properly tested and found to be high in histamine, eg. hard cheese, aubergienes, tinned fish, soya but now eat normal yeasted bread, beans and pulses (including red kidney beans as there is not a scrap of evidence they are high in histamine), and my symptoms are no worse than before.  Having said all that, my re-introduction of chocolate was a disaster and definitely increased my histamine load, so it is still forbidden *sob*.

What I learned: only a handful of foods have been tested for their histamine content.  We have no clue whether most fruits or veg are high histamine.  So-called low histamine diets are far too rigid and unnecessarily cut out highly nutritious foods.

My next big revelation came from my lovely readers, who would write and say that although I might be tolerating lentils, or wheat, they reacted to them.  This totally threw me, so again I researched what might be going on and discovered that we are all simply individual and will react differently to our friends.  In addition, just because we’re reacting to a food doesn’t mean it’s because it’s high in histamine.  You might also have a problem with nightshades, fructose, gluten, lactose, salicylates or any number of other components in foods, whereas I might not.  This is why I don’t give advice on my blog.  For a start I’m not qualified to, secondly I don’t know you and thirdly we are all so different that it would be totally pointless in any event because what works for me might not work for you.

What I learned: we are all individual and our mast cells react differently other people’s.

When I was first diagnosed I read everything I could about MCAD………..and found that much of it was totally contradictory to my own experience.  For example, on Yasmina’s Healing Histamine website is this post about Melatonin and how research has shown that it counter-balances histamine.  I’ve had horrendous insomnia because of my illnesses and years ago tried a Melatonin supplement, which gave me one of the worst mast cell reactions I’ve ever experienced.  Wondering why, I had my melatonin level checked by a lab and discovered it was  actually far higher at 3am than a healthy person’s, despite the fact I was wide awake!  So melatonin doesn’t appear to be reducing my histamine levels, which flies in the face of this research.  The research does say, though, that mast cells produce melatonin which makes more sense – my mast cells were rampant and this would obviously mean a high melatonin output, but in my case this wasn’t a good thing!  Some of the histamine writers online are treated a bit like God and their every word taken as Gospel, but trust me when I say if Dr Afrin doesn’t have the answers yet no-one else does either.

What I learned: don’t believe everything you read.

My experience with MCAD is that it is a highly fluctuating condition, which changes over time.  For example, when I was severely ill with M.E. (which as my readers know I think is some kind of mast cell disease) I was highly sensitive to chemicals, eg. I couldn’t bear to read a newspaper because the ink used in the printing gave me asthma-type symptoms.  I couldn’t tolerate normal paints, hairspray, perfume, bleach and any number of other substances.  However, as my M.E. started to improve my chemical reactions also improved and now I don’t have any problems with smells.  My drug reactions started off fairly minor, with me reacting to just the odd medication, but over the years this has gotten worse and worse to the point where I have anaphylaxis to just about all drugs.  To make matters worse, I can start off tolerating a drug really well but 12 months, or 6 years, or 20 years down the line suddenly have anaphylaxis to it and be unable to take it ever again.

What I learned: things can change, for the good or the bad.

When I was diagnosed with MCAD I thought there would be information out there in cyberspace that would have all the answers and it came as a huge shock to discover that that information simply doesn’t exist.  This is a new area of medicine and even leading Doctors in the field are still finding their way around the complexity of mast cells and the havoc the chemicals they release (like histamine & prostaglandins) play on our bodies.  If the experts don’t have the answers yet, no-one else does.  Not me and not other bloggers or writers, and if they pretend they do they’re fibbing.  Much of the research cited online is conducted on animals or in a lab, and this often doesn’t translate to human beings.  We are decades away from any real understanding of mast cell disease and when it does happen you can bet your life the answer won’t lie in whether or not you eat Pak Choi on a regular basis!  There are diets which may help, but absolutely won’t cure you.  There are drugs you can take which might help, but won’t cure you.  There are supplements you can take which might help, but won’t cure you.  There are ways you can live your life which might reduce symptoms, but again won’t cure you.  And that’s because MCAD is currently a chronic, incurable disease.  Sorry to be the bearer of bad news 😦

What I learned: MCAD may, or may not, be manageable but certainly isn’t currently curable.

My journey with mast cell disease is ongoing, but I’ve learned a fair bit over the past few years.  You’d think this would make me more knowledgeable, but in fact it’s been the opposite and there are days I feel more confused than ever!  My biggest revelation has been that we are all basically in the dark……Doctors, Researchers and Patients………because our knowledge of MCAD is in its infancy and, much as we’d all like it to be different, no-one really has the answers to our questions yet.  Which makes me feel kind’ve adrift and alone and scared.  But I’ve had M.E. for 2 decades too and no-one knows anything about that either and I’ve survived….just.

Weekly roundup

I’ve sadly been to many funerals over my lifetime, and as the deceased’s nearest and dearest stand giving the eulogy I’ve often wondered if they ever told the dead person what they’re telling the rest of us.  How precious they were to them, how they changed their lives, all the times they helped them, or made them laugh.  How much they were loved. I’d personally prefer to say all these nice things to the people in my life while they’re still here, so I copied the blog post I wrote about my Camera Club friend John and emailed it to him.  I had emailer’s remorse the second I did it, and had no idea what his reaction would be, if I’d embarrass him or myself, or whether it would make our next meeting awkward but then I figured so what if it did?  I wanted him to know how much his kindness had meant to me over the past 3 years and that I valued the qualities he possesses as a human being, which I find are rare these days.  I needn’t have worried.  His response was lovely and I think he was shocked but secretely pleased.  Even at the age of 70 it’s nice to know that we are appreciated.

The first half of my week was uneventful, the second half not so much.  My Monthly Friend made an appearance on Thursday and left me a complete gibbering wreck.  I had a migraine which lasted three days and from which my head has still not recovered, and was so emotional on Friday I literally couldn’t stop crying.  I can’t remember the last time I sobbed like that and to be so out of control of my emotions was most disconcerting.  I’d been awake half the night with period pains and what felt like rats gnawing at the inside of my skull, then logged on to my laptop to find that John had bought me the Elements 13 software and his kindness was all too much.  I started to bawl and once the floodgates had opened I couldn’t close them again.  The more I cried the more my head pounded and the more nauseous I felt, but it made no odds.  Bloody hormones, I’m a martyr to them at the mo!

Despite my emotional fragility and stonking headache I’d arranged for my friend’s two kids to come over for a photoshoot in the afternoon so I eventually had to pull myself together.  I had the eldest dress up as a mermaid and tried my hand at faking an underwater picture, which still needs a bit of work but has turned out OK.  I get really excited about creating composite pictures and totally immersed in them.  It’s such a fantastic distraction and I feel truly alive when I’m being creative.

I get criticized about all sorts by readers of my blog, and one of my biggest crimes is that I don’t understand issues properly.  Whilst it’s true I don’t have a degree in genetics or nutrition 90% of my readers don’t either, so I try to tackle subjects simply and in a way we can all grasp.  For example, you will never see me write about “heritable disorders of connective tissue” (say whaaaat?!) because to most people it means fuck all.  In any area of life the more knowledgeable and skilled people become the less they speak in a language that the lay person can understand, which is fine if you’re conversing with other Doctors or Researchers but rubbish if you’re speaking to Patients.  When Charities are producing literature or giving lectures to Joe Public I wish they’d stop with the medical jargon and just speak in good old plain English.  It applies to any walk of life.  My Camera Club holds a beginner’s photography course but the guy who runs it has been taking photos for 30 years, so twitters on about ‘focal lengths’ and ‘lens distortion’ when the people he’s speaking to just want to know how to point and shoot and not have a blurry photo at the end of it!  I sit in the audience and watch their eyes glaze over and their interest wander and it actually becomes all about the ego of the lecturer and how clever he is to know everything about everything rather than how to help others become better at taking pictures.

More research out this week shows ‘breakthroughs’ in the puzzle which is M.E./CFS.  The trouble is the ‘breakthroughs’ are on different subjects, one being energy (*sigh*) and the other the immune system (more promising IMHO).  Patients online get all excited and then we hear nothing ever again.  I don’t even bother reading it any more because I’ve had 20 years of ‘breakthroughs’ when it comes to M.E. and we’re still none the flippin’ wiser.

More terror-induced carnage in the UK overnight.  What an absolute waste of life 😦  I have no idea what ISIS hopes to achieve.  If Hitler, who killed millions of Brits in the war, couldn’t break us a few lone terrorists aren’t going to.  I sometimes wonder if these men (and it’s always men, particularly as women have no value in this ideology) just like violence.  They like the feeling of power and control it gives them and while in the beginning it’s to do with religion or land, in the end that just becomes an excuse to murder people for the sheer thrill of it.

Weekly roundup

We’ve had an unexpected heat wave this week and it’s been fabulous.  I feel so much better in warm (not hot!), sunny weather with more energy and less pain, not to mention the psychological boost.  The Farmers aren’t quite so happy though, as they’ve recently planted summer crops and we’ve hardly had a drop of rain for 6 weeks now.  Combine that with a week’s worth of 26C heat and the seedlings are all suffering.  It’s due to cool back down to the usual 15C tomorrow but there’s still not much rain due, which is great for me but bad for the plants!

I mercifully didn’t feel any ill effects from my endoscopy, other than having a very sore throat and diaphragm for a few days.  In fact, due to the fabulous weather my energy has been great this week and I’ve managed to do a little bit of gardening, potting up some tender summer flowers that I’d grown from seed in my kitchen windowsill.  Bertie helped, by pinching mouthfuls of fresh new soil out of the pots and eating it.  He’s a strange boy 😉

The arm on my distance glasses broke this week and aren’t fixable, so I’m having to fork out £160 for a new pair.  I’m stony broke as I’ve been buying a Father’s Day gift for my Dad and presents for my Mum’s birthday next month and really didn’t need the expense :-/  I got my Dad a simple Pedometer so he can see how far he’s walked when he goes up the fells each week, but I’ve tried it out myself first because he’ll ask me how to set it up and use it and I had no clue.  I’ve worn it for 5 days now and am amazed by the results.  I’m sedentary obviously and there’s no way I’ll ever be doing the recommended 10,000 steps a day, but actually I’m more mobile than I realized and it’s surprising how the steps taken pottering around the house and garden mount up, all of which help to keep my muscles and heart healthy 🙂

Monday’s torture aside, it’s been a lovely quiet week and it’s been great to be out on my scooter without having to be trussed up like the Michelin Man to keep out the cold.  I really don’t have anything to tell you, which is great because it means there’s been no drama and weeks without drama seem to be few and far between.  I have had an email from the genetics company 23andme which has made me think about genes in general and I’m intending to do a post about that this week.  It’s also half term holidays and I’m hoping to do some more photos with my friend’s kids, so that will keep me out of mischief.   But right now I’m off to make some breakfast cos my stomach thinks my throat’s been cut 😉

 

 

Gastrointestinal problems

I have several issues with my gastrointestinal tract so I thought I’d cover them all in one post, which has ended up stupidly long so you may want to make a brew before you start.  On the other hand, if you’re squeamish, you may wish to look away now 😉

Bowel

I had my first issue with pooping when I was a toddler.  My earliest childhood memory is being pinned down on the bed, screaming blue murder, while my Mum shoved Vaseline up my back passage (be thankful we now have modern laxatives for children).  It was shit (excuse the pun), made me feel like I’d been physically assaulted and, to add insult to injury, it still didn’t make me go to the loo.

When I was a child I didn’t much like food and was a “fussy eater” consequently my diet wasn’t as good as it could have been.  Knowing now I have Ehlers-Danlos and how that affects your gastrointestinal tract, plus my lack of soluble fibre, it’s no wonder I couldn’t poop.  I was permanently constipated in the true sense of the word, ie my poo was small, pellety, hard and only came out occasionally with me straining til I thought a vein would burst in my head.

At 21 I became vegetarian and everything changed.  For the first time in my life I started to enjoy food, ate loads more fruit, veg, beans and pulses and my poop became better in consistency.  Sadly though it still didn’t come out easily and I only managed a bowel movement about twice a week.  I was eventually diagnosed with a “lazy bowel” – in other words they had no clue why I couldn’t shit.

Fast forward 25 years and my change of diet to ‘low histamine’ following my MCAD and HIT diagnosis and my use of H2 antihistamines.  Finally I am able to poop almost normally.  I go virtually every morning and my poo is normal in consistency.  Well, as normal as it gets for someone with EDS and an overly stretchy bowel – I actually produce crap the size of elephant dung and when someone accuses me of being full of shit they have no idea how accurate they are 😉  I no longer strain when I go to the loo but it is a bit like giving birth, and I sometimes have to flush the loo three times before my monster poo disappears!

My endometriosis and many burst ovarian cysts have caused adhesions to my bowel particularly on my right hand side and this also affects my ability to poop.  Add to this a suspected floppy ileocecal valve, where faeces passes from the small intestine to the large intestine, and my poo does has the tendency to get stuck there.  It’s painful and I can actually feel (and often see) the long sausage lump of poo in the lower right of my pelvis sitting there waiting to find its way out!

Due to the enormous size of my poo I’ve now developed piles, which are swollen veins which appear either inside or outside of your anus.  They itch, and can be sore, but at the moment don’t cause me enough problems to want to do anything about them.  I also have various types of abdominal pain, from all over colic through to random sharp pains, but the cause is anyone’s guess.

Despite all this I’ve never been windy, either up nor down.  One has to be thankful for small mercies 😉

I still have issues with my bowel but I’m amazed at the difference a low histamine diet and histamine-reducing medication has made to my toilet habits.  Who knew the havoc histamine was creating and I’m sure no Doctor would believe that my lifelong ‘lazy  bowel’ has been largely cured by simply reducing the amount of histamine my body produces!

Bladder

Speaking of histamine, reducing it has made a massive different to my wee habits.  I’ve always peed a lot, but in the several years leading up to my MCAD diagnosis I weed for England, often going 3 times every hour and having to get up three to six times during the night.  Reducing the histamine levels in my body has changed my life and I now feel I pee almost normally.  In fact, I know when my histamine levels are high because I start peeing more, including during the wee small hours (wee, get it?  *groan*).

People with EDS have stretchy bladders which you would think would hold more therefore you’d go to the loo less, but I feel it somehow causes me to wee more often than most.  I also do the longest wees in history as my bladder holds vast quantities of liquid.

Reflux/GERD

In 2006 I developed a chronic cough.  I coughed so much at times I honestly thought I would die.  I had all sorts of investigations – xrays, scans, peak-flow and allergy tests – and everything came back normal.  I now know I had silent reflux and that acid was escaping from my stomach up into my oesophagus and being inhaled into my airways producing walking pneumonia.  With silent reflux you have no indigestion, no typical burning pain in the stomach or chest, just a cough for which no reason can be found.

After about 4 years of coughing I developed upper back pain.  It felt like a burning, muscular pain right between my shoulder blades and was so bad at times I could barely sit upright.  Nothing I did alleviated it and it became increasingly difficult to live with.  At the time I just put it down to my EDS ligaments but I now know this was acid burning the back of my oesophagus.

A couple of years after the back pain started the typical pain of reflux began.  My stomach felt sore and inflamed, and the pain in my oesophagus right between my boobs was horrendous.  It went all the way through to my back and felt like I was being stabbed by a bread knife every second of the day.  I developed intense and chronic nausea which also really got me down and had the most awful taste in my mouth all the time.  As it progressed I could actually feel the acid rising into my throat burning the flesh – it felt like I was being boiled alive. I wouldn’t wish severe reflux on anyone.

I ate Rennies like they were smarties and knocked back Gavison by the truck load.  I slept with the head of my bed lifted 6″ off the ground, cut out fizzy drinks and tried all sorts of different diets which didn’t help one iota.  Unlike other people’s experiences of GERD which I read about online, my pain didn’t come and go – it was constant, even waking me up from sleep at night.  I couldn’t tie it down to eating any particular food and it was actually worse when my stomach was empty.

I had all sorts of investigations which were largely normal.  No ulcers, no H-pylori infection, no bacterial overgrowth, no hernia, no delayed stomach emptying/gastroparesis.  The only thing they did find on endoscopy was 11 stomach polyps which all thankfully turned out to be benign and gastritis (ie stomach inflammation).  In the end I didn’t really get a diagnosis other than chronic GERD of unknown cause.

I manage my pain with H2 antihistamines, which definitely helps with the nausea and stomach pain but doesn’t do much for the esophageal/back pain which is still a constant.  I also continue to have the awful taste of acid in my mouth day and night and a sharp, stinging pain where my stomach meets my oesophagus which feels like I have a permanent piece of dry toast stuck there.  When it’s really bad, the burning stinging pain radiates up into both shoulders and down the inside of both arms and goes from the bottom of my neck to my waist at the back.  I also continue to have a chronic cough, though nowhere near as bad as it was pre-medication, and if I breathe deeply my airways feel constricted and irritated.

I suspect the mast cells in my stomach are producing too much acid, but quite how it’s finding its way into my oesophagus is anyone’s guess.  Although I don’t have a large hernia maybe my diaphragm is floppy due to my EDS and just doesn’t do a good job of keeping my stomach contents actually in my stomach?  Or it could be something else entirely none of us have considered.

I am having an ultrasound on my gallbladder shortly, as bile backing up from the gallbladder can mimic the symptoms of GERD.  Interestingly, my Mum developed horrendous indigestion in her early 40s.  She describes the pain as the kind that “makes you bang your head against the wall” and an abiding memory from my teenage years is listening to her pace the floor groaning night after night after night for nearly a decade.  She was told she was being “dramatic” and needed to see shrink – after all, she was female and we all know women are just hysterical hypochondriacs don’t we?!  Eventually she was given a gallbladder scan, which showed an organ so diseased it had shrivelled up to a black dot and she had to have an emergency operation to remove it.  I clearly remember the Surgeon saying “I’m amazed you didn’t develop septicemia and die”.  My Mum never had gallstones and was the 1 in 20 people who develops chronic gallbladder issues for no obvious reason (except we now know she almost certainly has MCAD which is, surprise!, implicated in gallbladder disease).

Difficulty With Swallowing

When I became severely affected with M.E. I constantly felt like I couldn’t swallow properly.  My muscles felt floppy and unresponsive and I always felt like a had a large, swollen mass in my throat which I had to swallow past.  Naturally all tests were normal and no-one’s ever been able to tell me what this is all about.

As I started to improve this feeling lessened but has never gone away.  Even as I sit here typing this post my throat feels hugely swollen and with each swallow I feel like I want to gag.

Sore Throat

Needless to say, if you have M.E. you will inevitably have a chronic sore throat.  I continually feel like I have some kind of infection though my throat looks entirely normal.  The more I do the more my throat hurts, and if I way over-do it (either mentally or physically) I feel like I have tonsillitis.

This kind of symptom is why I get irritated when the focus for M.E. research centres on ‘fatigue’.  It’s so obvious people with well defined M.E. have some kind of immune issue going on, and the ‘fatigue’ is just a by-product of that.

Oesophageal Spasms

When I was severely affected by M.E. I developed what are termed ‘oesophageal spasms’, in other words the muscles in the oesophagus cramp which, for me, made me retch and retch and retch…….and retch some more.  It wasn’t related to feeling nauseous, I didn’t vomit and they were often worst in a morning just after I’d woken up for reasons I’ve never understood.  Once I could manage a warm drink they’d sometimes settle down, but there were days when they wouldn’t and I’d be retchy all day.  I still get the spasms, although they’re occasional now rather than an every day occurrence.

When I have a mast cell reaction to food or drugs the spasms are severe and I can retch for hours on end.  The chemicals released when mast cells activate causes muscles to contract, so I wonder if my spasms have been mast cell related all along?  If so why do they happen on waking though?  It’s still a puzzle and, although I don’t ever worry about it, it’s still decidedly unpleasant when it happens.

Nausea

I’ve always been a sickly person, even from childhood.  I suppose with everything that’s gone on in my gastrointestinal tract over the years it’s no surprise, but it’s something you never get used to.

My bedridden M.E. years were plagued by severe nausea, though this only occasionally became actual vomiting and that was usually because my oesophageal spasms/retching made me bring up bile rather than any kind of projectile puking.

These days I feel nauseous when I do too much (like tonight!) and if my throat feels swollen (like tonight!) – even healthy people feel sick if they’re swallowing past a sore, swollen-feeling throat.

On the whole, my nausea hasn’t affected my appetite though and I can eat a 2 course dinner feeling sick to the very pit of my stomach – go me 😉

Appetite

Speaking of which, my appetite has always been excellent.  No matter what has been going on I’ve still loved my food, which is weird for a kid who never ate!  When my HIT/MCAD exploded and I started reacting to everything I put in my mouth it was one of the lowest points of my entire life and trust me when I say I’ve had a few low points over the years.  No matter what else in my body had gone awry I’d always looked forward to my meals (and snacks, and sweets, and anything else I fancied!).  To suddenly be terrified of food and not be able to eat many of the things I loved was torture.  I still think it’s unfair of my body to inflict this on me and to take away the one thing I had left which I enjoyed 😦

Dental

At the age of about 9 I had to have four of my adult molars removed as I had a vastly overcrowded mouth.  I didn’t know it at the time but it’s a classic sign of Ehlers-Danlos Syndrome, along with my high roof palate.

When my M.E. was really bad my teeth ached.  It was like having throbbing tooth ache throughout my entire mouth and didn’t respond to any kind of painkillers.  I had similar throbbing pain in other parts of my body, particularly my knees for some reason, so I assume it was just part and parcel of the pain of having M.E.  As my illness improved the pain went.

Ehlers-Danlos pre-disposes you to cavities and early gum disease and I have both.  All my adult molars were filled by the time I was in my mid teens and now I’m nearly 50 I’m at the stage where they are all having to be replaced, alongside new bits of decay.   I am already ‘long in the tooth’ and have pain in my receding gums and actual teeth.  Smiling when it’s windy is no longer fun and eating anything cold makes me wince!  I had my first adult tooth removed last year which actually took a lot of coming to terms with.  You’d think after everything I’ve been through it would be no big deal, but it affected me emotionally in a most unexpected way, particularly as I didn’t have the tooth replaced and instead just have a huge gap and now can’t really chew on that side.

Conclusion

M.E., EDS and MCAD can all cause gastrointestinal symptoms so most of the time it’s impossible to know which disease is causing what.  Please don’t tell me to change my diet – I’ve been ill since the day I was born and there isn’t a diet around that I haven’t dabbled with at one time or another including gluten-free, dairy-free, sugar-free and joy-free!  Having to eat low histamine for the rest of my days is bad enough, and I’m already a vegetarian who can’t eat soya, so I’ve no intention of embarking on any more restrictions particularly as all the diets I’ve ever tried (bar low histamine) have not made one ounce of difference to my health.

Obviously I’ve tried drugs to help with my symptoms and one by one have become allergic to them all, in particular the medications used to treat nausea, so I use my hot water bottle for virtually all my gastro problems and it probably helps as much as anything.  I also have some Sea-Bands which sometimes takes the edge off my nausea as does lemon verbena tea.  Other than that I just have to get on with it, which I swear should be engraved on my headstone:

“Here lies Jak.  She suffered but she just cracked on” 😉

Endoscopy no.2

Before I start this post I must make mention of the terror attack in Manchester last night.  I literally welled up when I turned the telly on this morning at the thought of the grieving families who have lost their precious children, and the survivors who will have to live with horrendous blast injuries for the rest of their lives not to mention the psychological trauma.  I have no idea what the terrorists hope to achieve.  It’s not like the entire United Kingdom is suddenly going to go “OK, we’ll all become radical Muslims” now is it?  And let’s not forget that Manchester is a multi-cultural city with a large Muslim population and the concert was filled with brown children as well as white.  There is no faith which supports taking a life and even if there were it wouldn’t advocate taking the lives of others with the same faith.   The world’s literally gone mad.


So, yesterday was torture endoscopy day.   I wasn’t allowed anything to eat past 8am and eventually went 11 hours without food.  I was only allowed water until 12 noon, so went without a drink for 5 hours.  This is not good for someone who drinks like a fish just to stay upright and eats every 3 hours or she feels like she’s going to pass out, and driving 60 miles in that state probably wasn’t all that safe!

I went on my own to the Hospital as these days I have no-one to go with me.  It’s fine and I’m used to it.  My Dad did offer, but it’s more stressful trying to keep my eye on his wanderings and keep him entertained than it is to go alone, plus I don’t trust his driving despite the fact he recently re-passed his test.

Three days before, I’d had a phone call from a nurse who went over all my health questions with me on the phone.  Despite this, on arrival at the endoscopy suite I was taken into a room and asked all the same questions – why, exactly, and what a bloody waste of NHS money.  Having arrived at the hospital I had been told by the nurse on the phone to report to Reception, but they didn’t even take my name and just told me to go and sit in the Endoscopy centre – the system is a shambles.  I then sat in the waiting room for the next 1½ hours for reasons I couldn’t work out.

I was told I was having the procedure done by Debbie, the endoscopy nurse, but was eventually called in by a youngish man, who told me he was the endoscopy doctor – why they’d swapped me I have no clue.  He was vile.  Truly.  He took me to the tiniest room on the planet, then said
“so, you have Ehlers-Danlos!  Can you do party tricks?”
I was taken aback and stuttered “erm, well I used to be able to but am too old now”.
“You’re not old!” he exclaims.
Me, starting to get irritated “as you age you stiffen up, and anyway doing party tricks damages your joints so isn’t recommended.”
Him: “Have you had children?”
What the fuck has that go to do with anything? “No.”
Him: “Oh, cos I was wondering if they just popped out like shelling peas” he grinned.
Fuck off you dumb ass.  You’re making light of a disease which causes me untold daily pain and has wrecked my life.
Him: “Can I ask you a question?  What’s your life been like?”
I’m totally flummoxed by this and reply “in what way?”
Him: “Well, how has it affected you?”
I know from his attitude he doesn’t give a fuck how my life has been affected and I have no idea why he’s asking.  I just want to have my endoscopy because I’m terrified I’m going to have anaphylaxis and die.  So I reply “I developed M.E. after having meningitis, was bedridden for a decade and nearly died, so although having EDS is shit at least I can function which in my world is brilliant.”
Him: “What do you mean M.E.?”
Me: “I also have M.E.”
Him: “What does M.E. stand for?”
Me: “Myalgic encephalomyelitis”
Him: “Just checking you knew.”
Me in my head: “fuck off you weird twat.  As if I wouldn’t know the name of the disease which nearly killed me and has decimated my life for over 2 decades.
Him:  “You also have mast cell activation disorder.”
Me:  “I do.”
Him: “Is that confirmed or just probable?”
Me: “It’s mostly only ever ‘probable’ in the UK because we don’t have access to the tests we have in the States to confirm diagnosis.”
Him, laughing: “we have in the States?”
Me: getting pissed now.  “We don’t have access to the tests they have in the States.”  I’m anxious, exhausted, ill, dehydrated and haven’t eaten for hours.
Him: “Rights, let’s go.”  Then, as we’re heading up the corridor to have the procedure “you do know this can cause perforation and infection don’t you?”
Me: “Thanks for that, it’s not like I wasn’t already nervous”
Him: “Well I have to tell you these things”
Me: “Not 30 seconds before you do it you don’t.”

In contrast, the two nurses were absolutely lovely.  Before we got started, though, I asked the doctor if he could do some biopsies to be tested for mast cells as I think they might be causing my issues.  To cut a long, shitty conversation short, in which I’m made to feel like a hypocrondriac who has made her disease up, he says no.  In fact, the entire procedure took less than 3 minutes – he went in, had a look around, and came out again.  No biopsies of any description, not even of my pre-existing 11 polyps which haven’t been checked for cancer for 5 years.  What a waste of time.

For anyone who hasn’t had an endoscopy before I have to say this: it’s one of the worst things I’ve ever had done, and I’ve had a shit load of stuff done over the years.  I’m allergic to sedation, so can’t have it.  Instead they spray your throat with local anaesthetic, which makes it burn and then makes your entire oesophagus numb and feel swollen like when you have lidocaine at the dentist.  Swallowing is really weird and you feel like your throat is paralysed.  They lay you down on your left side and put a bite guard-type thing in your mouth with a hole in for the endoscope, which is a flexible plastic pipe with a light on the end.  It feels about a foot wide but is probably only about half a centimetre.  The lovely nurse rubbed my back and held my hand as the camera was inserted, but trust me when I say they have to be brutal to get it past your voice box area and you gag like your life depends on it, literally feeling like you’re choking, and your instinct is to try and pull it back out and to stop you doing that is the real reason why the nurse holds your hand 😉  It does feel like you can’t breathe with the tube in your oesophagus but of course you can – you really have to focus though, battling against panic, and breathe deeply in and out through your nose.  There’s another brutal shove, with gagging, choking and coughing as they get it through your diaphragm and into your stomach where you can feel it moving around.  It’s not painful but very very weird and uncomfortable.  Another brutal push and more gagging as it goes into your duodenum, where again you can feel it moving around.  And the whole time you feel like you can’t breathe and are choking to death.  Lovely.

My first endoscopy took about 20 minutes as they took pictures and loads of biopsy samples, but as I said earlier this time he was in and out within minutes.  Lots more gagging, coughing and choking as the scope comes out and it’s all over.  Thank God.

Apparently all is fine.  I have a tiny hiatus hernia not even worth mentioning and no inflammation.  How I can’t have inflammation is beyond me, being as though I have acid burning my oesophagus every day of my life and have had for several years now, but according to Speedy Gonzales everything was “plum normal”.  I fucking hated him.

Knowing my throat swelled last time I was fully expecting to be kept an eye on for at least half an hour, maybe longer, afterwards but no such luck.  I got up off the bed and was out the endoscopy suite literally 30 seconds after he took the scope out.  I did ask “what happens if my throat swells like last time?” as I was being escorted out the door and he just said “see a doctor”.  Thanks for that when my local cottage hospital doesn’t even have doctors on staff out of hours.

Luckily there was no significant swelling this time – it was such a relief.  I did spend the night feeling like I had the worst case of tonsillitis ever, swallowing past razor blades, and my throat is still really sore this morning but I managed to eat some soft food (mashed potato and carrots with salmon) for tea.

The Doctor did say that being as though all appeared ‘normal’ he wants me to go back for an ultrasound on my gallbladder so I’m now waiting for an appointment about that.  I then have to see the Gastroenterologist, who usually sees patients before all this stuff is done but wanted me to have the tests first so he had the results, which I can understand but if I’d seen him first he could have ordered the mast cell biopsies *sigh*.

I’m fairly sure I know what my pain is all about, but as usual Doctors don’t listen to me and aren’t willing to do the necessary investigations.  If it’s not something typical, like a hernia or an ulcer, they’re flummoxed and not interested in investigating further.  If the Gastroenterologist fobs me off I’m going to ask if it’s possible to be referred to an EDS specialist, ie Qasim Aziz down in London – I’ll probably be told no but it’s worth a try.

I’m tired, bruised and disillusioned this morning but at least it’s over with and I survived unscathed 🙂  My advice for anyone else having an endoscopy would be this: if you can, have the sedation.  You apparently can still feel the procedure but it’s not half as traumatic as having it done fully conscious!