Weekly roundup

It’s been a strange week with one thing and another.  My Step-Dad’s Mum, who is 103, has been in a brilliant care home for the past 4 years.  A couple of weeks ago she had a heart attack, but being as though she has a DNR (do not resuscitate) order she wasn’t hospitalized and was cared for in the home.  Ten days ago it looked like she was passing away but the nurse inserted a drip and gave her antibiotics for a chest infection and she rallied.  I do wish the nurse hadn’t intervened because all it achieved was to drag her dying out.  Five days ago the Doctor went to see her and took the drip and meds away.  My Dad has sat faithfully by her bedside ever since and she finally passed away last night.  She’s never liked either me or my Mum for reasons unknown and I’ll go as far as to say she’s been a right bitch to both of us so it’s not like I’m sad about her death, however my Dad will be devastated.  No matter how old or how ill, our Mums are still our Mums.

We had a couple of dry(ish) days at the start of the week so I managed to get a few much needed jobs done in the garden.  It’s rained here in Cumbria almost non-stop for about 6 weeks now and was so cold last night I’ve woken to condensation on my bedroom windows.  FFS, does it not know it’s the middle of bloody summer??!

Thursday I took a friend from Camera  Club to photograph red squirrels at a secret location I don’t shout about.  They’re so cute I could watch them all day.  By mid afternoon I’d started with tummy pain and was a bit flummoxed as to what could be causing it.  It got worse as the day progressed, which is all I needed as I was having 5 other camera club members round to my house in the evening for a meeting about next season’s programme.  The meeting went ahead but I was feeling pretty ropey and couldn’t wait for them all to leave so’s I could get into bed with a hot water bottle.  My period pain always starts initially with stomach pain, but I thought I was only on about day 9 or 10 of my cycle so it couldn’t be that.  Er, wrong!  Woke the next morning to Aunt Flo and when I checked my diary I was actually on day 24 of my cycle – doesn’t seem like two bloody minutes since the last one!  Consequently I was awake for most of Friday night with awful endo-related period pain and a migraine which hung around through most of Saturday.

My lovely furry child Bertie turned 9 this week 🙂  I adopted him when he was 2½ and have no clue where those six years have gone!  I also have no idea what I did with my time or money before I got him but wouldn’t swap him for the world.  It’s because of him I got into photography and for that I will always be grateful.  He is my loyal and faithful companion and as I type this, sitting up in my bed, he is asleep between my knees with his head resting on my thigh.  I love him to the moon and back even though he pinches food the second my back is turned, eats sheep shit then licks my face and barks so much he’s in danger of perforating my eardrums 😉

Today is forecast to be dry and, dare I say it, even a little bit sunny so I’m palming the dog off with my Mum and taking my photography hide down to the river.  In the past 12 months I’ve managed to get good pictures of a red squirrel and a heron, both of which have been on my bucket list for the past 4 years but I still haven’t managed a picture of a Kingfisher.  I know where one is currently perching every day at noon, so I’m hoping if I keep going to where I know he hangs out I’ll eventually manage a shot.  Wish me luck!

No time to cook

It’s been some considerable time since I wrote anything diet/food related on my blog, so I thought I should explain why.  When my MCAD finally exploded back in 2012 I was having anaphylaxis every time I ate anything and sometimes after just drinking water.  I have never been so terrified in all my life and honestly thought I would die, especially as the Doctors I saw just looked at me like I was nuts and told me it wasn’t possible.  I was given diagnoses like gastritis and IBS, which I knew were absolute bullshit but I was told “it’s not cancer” and I should be grateful, then just left to get on with it.  Thank God for the internet and eventually receiving my MCAD and HIT diagnoses from Dr Seneviratne.

For the first two years following my diagnoses I was naturally obsessed with food.  I spent months wading my way through the information online on low histamine diets, adapting recipes to be low in histamine, experimenting and finally finding a plan I could stick to and which (on the whole) controls my symptoms.  I am so grateful to no longer pass out after I have a meal I can’t even tell you, though I’m not always symptom free.  That’s because my mast cells react to a whole host of things other than food, so it depends on any one day how full my histamine bucket is as to whether the mere act of digestion (which produces histamine!) sets off a reaction or not regardless of which food I’m eating.  But the symptoms aren’t anywhere near as extreme as they used to be and, although still not pleasant, are liveable with.

After my condition stabilized I really began investigating low histamine foods and made the shocking discovery that hardly any foods have been tested for their histamine content and every diet online is based, for the most part, on guesswork.  It rocked my world really because my life depends on keeping histamine at bay, yet the information on which I was basing my diet couldn’t be trusted.  I could still be eating ‘safe’ foods which are nothing of the sort and may have been cutting out foods, like egg whites, for absolutely no good reason!  What a bloody nightmare.  So I began experimenting again and discovered I don’t react to baker’s yeast, small amounts of lemon juice, vinegar, stone fruits or fresh berries though chocolate is still off the menu *sob*.

By now it’s 2016, I’m in peri-menopause and am having to contend with extra symptoms on top of the dozens I already have.  My Mum has been diagnosed with severe COPD and Emphysemia, is in heart and kidney failure and has become an alcoholic, while my Dad is in the early stages of Dementia.  They both need help with daily living and the job has fallen to me (quite why it hasn’t fallen to my 3 healthy brothers, their wives or adult children, three of whom ironically work for Home Care Agencies, is another story).  It’s hard enough keeping my own life and home going and I’m finding keeping two homes and three lives going tough.  I’m so busy I meet myself coming back, then am so exhausted from all the extra work and my rampant hormones I literally can’t think straight.

These days I no longer have the time or energy to spend hours in my kitchen thinking up and experimenting with new recipes.  In fact, I spend one day a week cooking then shove what I’ve made in the freezer as I don’t have the time or energy to cook myself dinner every day, let alone anything extra.  In any event, I’ve become quite disillusioned with ‘low histamine’ diets because neither I, nor anyone else, have any idea of the histamine content of individual food items and I now use all sorts of ingredients in my dinners which would cause outrage if I were to put them online.  For example, this week I happened to be in Sainsburys and bought 2 jars of pre-made sauces – don’t fall off your chair in shock 😉  One contained concentrated lemons and the other contained additives!  I know for a fact I won’t react to either, yet if I put them on my low histamine shopping list I’d be crucified, because according to the lists online they contain things I shouldn’t be eating.  Only of course no-one knows if I should be eating them or not because they haven’t been tested for histamine – try telling the low histamine zealots that though!  Obviously my ‘low histamine’ diet has helped my symptoms enormously so obviously some foods are higher in histamine than others, but whether I needed to have cut out all the foods I have is anyone’s guess.  My reduction in symptoms might literally be down to cutting out spinach, cheddar cheese and fish and I’ve been unnecessarily cutting out 30 other foods for no good reason.  Or it might be that I absolutely have to cut out 30 foods in order for my diet to be low in histamine.  I have no idea and neither does anyone else.

According to people like the Low Histamine Chef and others I shouldn’t be eating low histamine anyway, but I should be eating anti-inflammatory.  Only there’s about as much robust evidence for anti-inflammatory diets as there is for low histamine diets.  Point me to the research on people, not rats, that measures inflammation after ingesting a particular food and I might change my mind.  Only of course it doesn’t exist.  It’s as impossible to measure inflammation in our bodies after we’ve eaten a specific food as it is to measure histamine in our bodies after we’ve eaten a specific food.  It’s all such bullshit yet is talked about by these self-proclaimed ‘experts’ as fact.  And just because they include research references at the end of their articles doesn’t make it fact either.  Does anyone actually read the research?  Is it a properly conducted, double blind, randomized, controlled trial which has been peer reviewed and published in a nutritional journal?  Because if it’s not it’s not worth the paper it’s written on.  When I was investigating low histamine foods, I discovered that the only reason egg whites were included in low histamine food lists is because of a tiddly trial done on mice in the 1950s, which was never reviewed or published.  The way food was made and stored in the 1950s bears no resemblance to the way food is made and stored in 2017, so quite why this pseudo half-experiment is quoted as fact in the low histamine world astounds me.  All this stuff plays on the absolute desperation of very sick people and it makes me furious.

It extends beyond the world of histamine though.  For years saturated fats were ‘bad’ for us as they raised cholesterol and gave us heart attacks, until it was discovered that actually heart disease is a much more complex issue, trans fats were much more unhealthy than saturated fats and the jury is still out on how big a role saturates play in plaque formation.  Then salt was bad for us, until it was discovered that eating too little might be as bad as eating too much, though again the debate rages on.  Now it’s sugar that’s the demon, until in 30 years time it will be discovered that without sugar our energy levels are half what they used to be or some other such nonsense.  If we’re honest, we know very little about digestion, diet and the impact what we eat has on our health, and I suspect genes and how we as individuals process food will turn out to be the determining factor for health, rather than the foods we eat per se.

I admit I’m no expert on food and the information here on my blog is simply based on my own thoughts and experience.  And my experience is that I am currently managing my symptoms OK with the diet I choose to follow and, due to changing circumstances in my life, I no longer have the time or energy to experiment with new recipes particularly when I’m not even convinced they are low histamine as I have no evidence to back that theory up.  So apologies to anyone reading my blog and hoping for loads of inspiring recipes and foodie facts.  Having said all that, I hope the information and recipes listed in the menus at the top of my site are useful in your own journey through the histamine maize and at least it’s all free and I’m not making money off the back of other people’s suffering.

A novel experience: part 5

By the time I developed M.E. I’d had a couple of regular allergic reactions to drugs.  The first to anaesthetic and the second to an anti-sickness injection.  These were well recognized reactions, if rare, and very different to the weird reactions I’d go on to develop as part of my mast cell disease.

Most Doctors only recognise full on anaphylactic shock, where your throat swells and you have problems breathing, but anaphylaxis can be graded from 1 to 5 (or I to IV depending on the Grading system used) and as my mast cell disease progressed I started having grade 3 anaphylaxis to just about every drug or supplement I put in my mouth.

My very first mast cell reaction back in 1994 was to alcohol, though I didn’t know it was an anaphylactic reaction at the time.  My second reaction was to a supplement and this time I was fully aware my body was in meltdown though of course didn’t know why.  My Mum, who we are now almost certain has both EDS and MCAD, had quite often reacted badly to drugs so to me it was fairly normal and I really didn’t think much of it.

This exert from my book describes this first serious mast cell reaction.  I’d had ME for about 12 months at this stage and was having awful problems sleeping.  My GP wouldn’t prescribe anything as she said sleeping tablets were addictive, so I thought I’d try something natural.  After all, what harm could it do?

“I swallow the little white pill I’d bought at the Health shop, wincing as it makes its way past my swollen tonsils, the result of yet another throat infection.  The tablet contains something called GABA, which is apparently made naturally by the brain and I’d read in a magazine can cure insomnia.  I’d eat rat poison if I thought it would help and as I pull my sleep mask over my eyes and push in my earplugs, shutting out all external stimulation, I offer up a silent prayer for seven hours of heavenly uninterrupted kip.

Twenty minutes later far from being in the land of nod I’m starting to feel a bit peculiar.  My whole body is tingling and I feel hot, ridiculously hot, so with an irritated sigh I sit up and turn on the bedside lamp, crawling forward on the bed so I can see myself in the dressing table mirror.  I’m shocked to find an ashen face with flaming cheeks staring back at me and I can see my chest inside my pyjama top is mottled scarlet red.  Hmmmm.    My sleepy brain is just starting to register that something’s not quite right when every nerve in my body explodes with pain, pricking my skin with a thousand razor sharp needles.

Owwwa!  What the hell?!  I’m wide awake now and more annoyed than worried, realizing my chances of some shut eye are diminishing by the second, but as I try to exhale my frustration I’m kicked in the chest by an imaginary horse, the thump of its hooves a physical blow which steals every ounce of air in my lungs.   The sensation is so real I slump over, my heart suddenly pounding ferocious beats which thud in my ears and all the while I get hotter and hotter until fire reaches my brain, a raging inferno which melts everything in its path.

Conscious thought is lost to the blaze and I hug my head protectively with my pyjama clad arms, rocking back and forwards to soothe the onslaught.  I’m obviously having a bad reaction to the GABA but it’s nothing like the allergic reactions I’ve had to anti-sickness drugs, which made my eyes roll in my head, or the reaction I had after my spinal surgery as a kid which caused my muscles to spasm so violently my back arched inches off the bed.  No, this is something new and I have no idea what’s happening.

I’m weirdly calm yet antsy with a sudden unstoppable urge to move, despite the fact my body is heavy with fatigue, so I start pacing the length of my bedroom, my heart battering against my ribcage, pain tunnelling along every nerve with each thudding step.  I’m not liking this God I tell my invisible Mentor, not liking it one little bit.  In fact, I’m freaking out so if you feel like a bit of Divine Intervention now would be a really good time.  God’s answer is to make me abruptly nauseous and I only just reach the bathroom before vomiting so violently I’m worried my stomach will rupture.

Three hours later I’m still pacing, a rhythmic voyage round the bed and back keeping my adrenalin fuelled body occupied while my heart does the equivalent of a sprint hurdle, my trudge broken only by the need to retch stringy bile into the toilet bowl.  Please make it go away God I beg.  I’m so tired, so very very tired and my tummy hurts.  My knees buckle and I stumble but despite overwhelming exhaustion I keep moving because when I stop the fire in my veins is so intense I don’t know if I can bear it.  It doesn’t cross my mind to dial 999 because it’s the middle of the night and anyway I hate hospitals and would only want to go to one if I were dying.  Which I’m not.  At least, I don’t think I am.  Corpses have to lie down and be dead and I’m far too wired to be that still.

I shiver uncontrollably, fat goose bumps lifting the hairs on my arms, but when I catch a glimpse of myself in the mirror my face is still alight with burning heat.  I wrap my arms round my ribcage, hugging myself for both warmth and comfort, then try some of the breathing the hypnotist taught me, in through my nose and out through my mouth, in a vain attempt to quieten my thudding heart.  It doesn’t work and I become so out of breath I see stars.

‘For crying out fucking loud!’ I stamp my foot hard on the laminate floor, angry that everything I try only seems to make things worse, then instantly regret my strop as searing pains shoot up my leg, sending shock waves rippling up my spine.  ‘And you can piss off as well!’ I tell the pain petulantly.

Indeterminable hours of pacing and puking later, as the streetlights are replaced by weak winter sunshine, the fire in my brain finally dies to glowing embers and my heart, after one final thumping finale, settles into its usual quiet, steady rhythm like nothing has ever happened.  Not quite trusting that the reaction might finally be over I sit tentatively on the edge of the bed waiting for my nervous system to complain, but although every inch of my skin is tingling like it’s plugged into the electric the sensation is just uncomfortable rather than agonizing.  Relief and crushing exhaustion suck the last ounce of strength from my muscles and I crawl gratefully between the sheets, my brain singed, my stomach raw, blissfully unaware I’d just had the first skirmish in a twenty year war with my immune system which would ultimately try its best to kill me.”

 

The Disease Trilogy

Well, it’s actually a disease quadriology but that didn’t sound quite as good 😉  What on earth am I rabbiting on about now you ask yourself?  Good question, and one I ask often lol!  I’m talking about:

MCAD, hEDS, POTS & M.E. 

which we now know, in some patients, have a bad habit of occurring together.

Mast Cell Activation Disorder/Syndrome (MCAD/MCAS) is a fairly rare disease, although not as rare as previously thought.  There are no statistics available, but mast cell disease is estimated to affect roughly 1 in 2000 people.  When the patient has hypermobile Ehlers-Danlos Syndrome, however, this shoots up to an estimated 1 in 10.  There is obviously something about having hEDS which affects our mast cells in a way that isn’t seen in the rest of the population, which is why I can get arsy about non-EDS patients talking about ‘curing’ or treating MCAD like it applies to everyone – their disease pathway is not the same as my disease pathway.  This is important.

We don’t yet know why people with hEDS are massively more at risk of also having MCAD, but Professor Anne Maitland (Immunologist specializing in hEDS +MCAD) has the following theory: mast cells live in connective tissue.  In hEDS the connective tissue is faulty and in some patients this leads to incorrect messages being sent to the mast cells, making them behave inappropriately.  Dr Maitland is brilliant and in 2016 did a free webinar on hEDS and mast cell disease which is well worth a listen.

On the flip side, MCAD can affect our collagen and make it more stretchy.  I’ve had people comment on my blog that treating their MCAD has ‘cured’ their hEDS and, while I’m happy for them, they are mistaken.  hEDS is much more than having flexible joints so if that’s the only symptom you have you didn’t have hEDS in the first place.  You had lax ligaments as a symptom of MCAD, so treating your mast cells will have had a beneficial impact on your over-bendy joints.

To clarify: in patients with MCAD minus hEDS, misbehaving mast cells make otherwise normal collagen faulty.  In patients with MCAD plus hEDS, faulty collagen makes otherwise normal mast cells misbehave.  So in the first instance, the mast cells are driving the disease, whereas in the second instance the collagen is driving the disease.   In those patients without hEDS, if you can get the mast cells under control the collagen should improve.  But in patients with hEDS there is no effective treatment for the underlying collagen disorder, and without that the mast cells are going to remain overactive.  Yes, hEDS patients can still take mast cell stabilizing drugs but although that may help to control the overactive mast cells it won’t ‘cure’ MCAD, because the mast cells are being driven by faulty collagen for which there is as yet no effective treatment.   I hope that makes sense because I’m ridiculously brain fogged today!

There is increasing recognition amongst doctors in the know that POTS (postural orthostatic tachycardia syndrome) can go hand in hand with MCAD and hEDS and in 2015 a small research study was carried out by Dr Vadas on this very subject.  An estimated 80% of hEDS patients will have POTS and an estimated 1 in 10 of those will also have MCAD, so it’s not an insignificant issue.  Quite why some people have all three diseases no-one knows, but it is a subject a small handful of Doctors are thankfully looking into.  I personally don’t have POTS (ie an increased heart rate when I stand) but I do have Orthostatic Intolerance whereby standing and even sitting for any length of time makes me feel ill, faint, weak and very mentally confused.  There is a good article on both POTS and OI here.

What’s being left out of the current research is the link between hEDS, POTS, MCAD and M.E.  “Chronic fatigue” is talked about but chronic fatigue is not M.E. (although I appreciate M.E. is called CFS in the States).  Most people with M.E. have orthostatic intolerance or POTS – it’s a characteristic of the disease.  And, as my readers know, I think M.E. is a type of mast cell disease.  My reasons for thinking this are:

• M.E. follows a viral infection.  Mast cells can be chronically activated by viruses.
• M.E. has many hallmark symptoms of MCAD, in particular fatigue (mast cells affect the mitochondria), brain fog, problems with cognition, sense hyper-reactivity (ie light, sound, touch) and we now know that the sensory part of our brain called the Diancephalon contains mast cells, ‘allergies’ (the more severe the M.E. the more allergic-type symptoms such as reactions to smells, pollens, chemicals, drugs, foods), muscle twitching/dystonia (mast cells affect smooth muscle contraction), IBS-like symptoms (our GI tract is packed with mast cells), pain (mast cells live next to sensory nerves), sleep disturbance (mast cells affect the sleep/wake cycle).
• Worsening symptoms at menstruation and menopause (mast cells react to hormones),
• Improvement during pregnancy.
• Improvement in symptoms have been seen in some M.E. patients when taking high dose Vitamin C or Tricyclic antidepressants (both are used to treat MCAD).
• Recent research has shown the drug Rituximab can help in M.E.  A similar cancer drug has been found to be helpful in treating MCAD.  Both drugs work on b cells.
• Stress worsens M.E. (mast cells live close to nerves, in particular the nerves which release corticotropin-releasing hormone (or CRH). CRH is a hormone which is released in the ‘flight or fight’ reaction when the body is under stress).
• See more about M.E. and mast cells in my Canary post.

There is a recognized subset of M.E. patients who also have hEDS, and nearly all have either OI or POTS.  In addition, there is not a single one of my many moderate/severe M.E. friends who don’t have some kind of allergy, whether it be asthma, gut issues, food intolerance, drug or chemical intolerance and none of us can tolerate alcohol.  This, alongside the symptoms listed above, scream Mast Cell Disease to me and I wish it were something researchers would look into.  Even if they just tested for mast cell mediators in severe M.E. patients it would be a start and I’d be very interested in the results.

The good news is that things have come on a long way in just the 7 years I’ve been diagnosed with hEDS and there is increasing recognition that collagen disorders, dysautonomia, mast cell disease and M.E. are in some way linked, at least in a subset of people.  This hasn’t filtered down to your average Consultant or GP, so please don’t expect your local hospital or doctor’s surgery to know anything it, but for those health professionals specializing in either MCAD or hEDS they are definitely aware of the link (even my local Rheumatologist knew that hEDS patients often present with MCAD, so if the knowledge has made it to the wilds of the lake district there is hope for everyone 😉 ).

 

 

 

Back pain

When I was a kid we used to live in a house with ramshackle outbuildings.  My friends and I built a little Den in the upstairs of an old barn, which we approached by way of a ladder through a hole in the floor.  One day when I was messing about I stepped backwards, fell through the hole and landed on my back on the bonnet of my Dad’s car which was parked below.  Ouch!  Obviously I hurt my back but after several weeks it didn’t get any better – little did I know then it would hurt for the rest of my life.

I had an x-ray and was told all was fine.  Why, then, a whole year after the accident did my back still hurt?

By the age of 14 the pain was starting to affect my school life and my sleep.  I was on all the sports teams (hockey, netball, tennis) but was having to curtail my training because the pain was intrusive. It was in the lower part of my back, was bilateral, ie it affected both sides of  my spine, and went across my butt cheeks but not down my legs.  It was a dull aching pain which only went when I lay down and I also had some incredibly sore spots particularly in the hollows of both butt cheeks.

My GP referred me to the local hospital who did yet more x-rays.  Everything was still ‘fine’ so they referred me on to Physiotherapy, who gave me some heat treatment and various exercises to do.  The treatment made the pain ten times worse, but when I relayed that to the Physio I was told it wasn’t possible and they implied that I was making the pain out to be worse than it was.

I went back and forwards to the Hospital for 5 years, with the pain getting worse and worse, and in the end was told that my symptoms were psychological and that there was nothing physically wrong with me.   “Do you think referral to a psychologist would be helpful?” I was asked.  “No I fucking do not!” was my answer.

At the age of 16 I could barely sit or stand let alone sleep or play sports, so I went to see my GP, bawled my eyes out and refused to move from her office until she’d referred me to another Hospital for a second opinion.  A few months later I was admitted to the brand new Freeman in Newcastle for 3 days, where they carried out all sorts of tests.  They were the first people to tell me I was “super bendy” but it was only mentioned in passing.  MRIs didn’t exist then but I was given a CT scan, a new invention, very expensive and something my local hospital didn’t have.  The 3D scan showed that one of the vertebrae in the bottom of my spine hadn’t grown properly and was trapping all the nerves and blood vessels which ran through it to my bum and legs.  The fall I’d had was irrelevant and just acted as a catalyst for the pain.  I’d actually been born with the condition, which was rare as it usually develops as we age, and my pain finally had a name: Congenital Spinal Stenosis.  I was also told I had a curve in my spine and diagnosed with mild Scoliosis, though why this hadn’t been picked up on all the X-rays I had done in Carlisle is beyond me.

The only cure for my pain was spinal surgery, which I had 3 months later.  In a procedure called a Laminectomy, the ‘roof’ of the deformed vertebrae was removed which freed the nerves and blood vessels though I was told they had been trapped for so long they were permanently damaged.  I thought the surgery would cure my pain, and while it did lessen it never went away.

When I developed severe M.E. in my late twenties my back used to go into the most awful spasms for which I used to take muscle relaxants (this was before my Mast Cell Disease really took off and I was able to tolerate drugs mostly OK).  My spine was still very flexible, though, and I got some relief by lying on my stomach in a yoga pose.  I also took potent painkillers (co-dydromol) every day, plus anti-depressants to help the pain at night and thereby improve my sleep.  One by one, however, over the years I became allergic to all of them – little did I know my Mast Cell Disease was ramping up ready to explode.

Fast forward to the age of 40 and my “flexibility” started to change.  Lying on my stomach, which increased the arch in my back, was impossible and even lying on my back became problematic.  My pain was no longer confined to my lower back either – it had travelled to my upper back, in particular my ribcage and the area between my shoulder blades.  I was also now getting shooting pains in my upper legs and pelvic bones and standing for even a few minutes was agonizing.  In 2010 I had an MRI of my lumbar (ie lower) spine, which showed absolutely nothing other than some mild osteoarthritis.  Where was the goddamn pain coming from then?!

In 2013 I received my MCAD diagnosis and embarked on a ‘low histamine’ diet (I’m deliberately using inverted commas because there really is no such thing!).  Within a few months my back pain was much improved and the muscle spasms I’d had for years had all but gone.  My flexibility didn’t get any better though, and by this stage I was struggling to bend over to put on my socks or tie my shoe laces, but I wasn’t in constant pain.  It doesn’t take a rocket scientist to work out my mast cell mediators (ie the 30 chemicals released by mast cells when they activate) were influencing the muscle spasms in my back as it’s known that some mediators affect smooth muscle contraction.

For the past 3 years or so my back pain has been really quite good – well, as good as it gets for someone with a progressive connective tissue disorder and an already permanently damaged spine.  And then this year it’s all gone to shit and I have no idea why.  Yesterday I spent a few hours sitting on the floor sorting a pile of paperwork ready for filing, and last night my back was so bloody painful I barely slept a wink.  The pain down my legs is increasing, and now I quite often wake in a morning to find both arms are totally dead so there’s obviously something going on with the nerves in the top of my spine.  I have no clue why my back is suddenly so bad, and no idea what’s causing all the pain and numbness.

To be honest, I’m not going to bother investigating my spinal issues.  If the problem requires surgery I can’t have that as it’s considered too risky because of my MCAD.  If it requires physio I can never do the exercises because it makes my M.E. so much worse, and if it requires drugs I can’t take them as I’m so drug allergic.  I really can’t see the point in putting myself through the stressful diagnostic process when in all probability I won’t be able to cure whatever the issue turns out to be, if indeed anyone can tell me what the issue is!  But, OMG, living with back (and leg, and arm) pain is shit and at 3am this morning I was proper tearful – 39 years of pain is enough for anyone, especially when you can’t take drugs to give yourself a break.

Thank God for my TENS machine, and warm baths, without which I’d be suicidal.  And, yes, before anyone mentions it I’ve had osteopathy, chiropracty, acupuncture, reflexology and every other therapy you can think of – every single one of which gave me a mast cell reaction (the chiropracty made me so ill I had to be blue lighted to hospital in an ambulance in the middle of the night then had to live with my parents for 9 months while my body recovered from the anaphylaxis).  I’d rather live with the pain than risk that again.

I usually try to end my blog posts on a positive, or at least with some humour, but today I’m just too sodding fed up.  I’m on day 3 of awful endo-induced period pains, feel nauseous, am in pain from my ankles to my neck, my right arm is numb and tingling, after only 2½ hours sleep I’m exhausted and to top all that off I didn’t win the €69million Euro jackpot last night when I was convinced my numbers were going to be up 😉   I’m hoping tomorrow will be a better day.

 

 

 

 

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.

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” 😉