Category Archives: Myalgic Encephalomyelitis

Mast Cells & M.E.

Leading Doctors in the M.E. field are slowly coming to the realization that Mast Cell Activation Syndrome (MCAS) is common in their patients, with some finding issues with mast cells in more than 60% of the people they test (see this post by my friend and fellow blogger over at Rag & Bone Shop of the Heart).

Ever since I first learned about MCAS I knew, for sure, it was implicated in M.E. as I explain in my Canary post.  In particular it explains why POTS/orthostatic intolerance is almost universal in M.E. patients, why reactions to foods, drugs and the environment are so prevalent and why nothing is ever found on testing, despite some patients being profoundly ill (no-one has been testing for mast cell mediators!).

Where I disagree with most clinicians looking at the link between mast cell activation and M.E. is that doctors think it only applies to a sub-set of patients, while I think it is implicated in the disease in all patients.

I am convinced I was born with MCAS.  I think it can either be congenital (in my case it seems to be linked to my hEDS) or acquired later in life due to an immune event like a virus, vaccination or surgery.  I have photos of myself as a baby flushing my cute little face off and have had dermographism ever since I can remember, but I had no clue I had MCAS until I was in my mid forties because it wasn’t a problem until the peri-menopause set it off.  My point being it can go undetected in the majority of patients until something happens to rocket it into orbit.

For a decade I was life-threateningly ill with M.E., yet I could eat whatever I liked, take most medications without a problem, didn’t have hives, asthma, itchy skin or any of the other symptoms associated with MCAS.  But that didn’t mean it wasn’t there, lurking.

Looking back I’d flushed all my life (I didn’t know it was flushing, I had no idea why I went bright red all the time!), I could skin write and I’d been unable to drink alcohol without my face swelling or passing out since developing M.E (which I now know is grade III anaphylaxis), but other than that there were no obvious signs of mast cell mediator release.

In my mid thirties, after having M.E. for ten years, I started to become allergic to medications, many of which like paracetomol (tylenol) and travel sickness tablets I’d taken all my life.  I developed a tight chest around certain smells and the print ink off newspapers made me wheezy.  I also developed severe migraines almost out of the blue, hay fever each spring which I’d never had before in my life and started getting itchy lumps on my bum which I had no idea were hives.  I also had what doctors called either “A-typical seizures” if they believed in M.E., or “panic attacks” if they didn’t believe in M.E., but which I now know was anaphylaxis.

In my mid forties I started peri-menopause and all hell broke loose virtually overnight.  It was then I began reacting to all medications and nearly every food I put in my mouth, to the point where I honestly believed I’d die.  I’d had M.E. for 18 years at this point though and although there had been hints all along if I’d known to look for them, my mast cells hadn’t gone berserk enough for me to be really troubled by them or to link them to my M.E. in any way.

All my friends with M.E., without exception, have an allergy of some kind and the more severely affected by M.E. they are the more allergic they seem to be.  My best mate has never been severely affected, yet still has asthma, hay fever, POTS and auto-immune diseases (confirmed Coeliac in her thirties despite having no symptoms whatsoever at the time and confirmed Palindromic Rheumatism in her forties after suddenly developing swelling joints and skin problems).  It’s way too much of a coincidence that nearly all long term M.E. patients have, or develop, allergic reactions, many have auto-immune diseases and all have some kind of orthostatic intolerance.  There has to be some kind of missing link and, for me, that’s misbehaving mast cells.

It’s the only thing which fits.  It’s the only thing which causes seemingly unrelated systemic symptoms like insomnia, back pain, diarrhea, migraine, food allergies, breathing problems, fatigue, that tired-but-wired feeling, nausea, inflammation and on and on and on.  And of course no-one has been testing for it, which is why no-one has been able to find a test for M.E.

So if mast cells underly M.E. why don’t all patients tested have evidence of mediator release?  I’m just a patient and no kind of expert but I do have a couple of theories:

  • Because there is no test for M.E. lost of people are diagnosed with the disease that don’t actually have it.   I know this because of all the ‘cured’ stories I read in the press from people who clearly didn’t have M.E. in the first place, yet were diagnosed by GPs because the disease has become a dumping ground for anyone with unexplained fatigue.
  • Despite being seriously ill, having anaphylaxis every time I ate and having a bum covered in hives my histamine test when I saw Dr Seneviratne was still within the normal range!  Very high but not quite high enough to be considered abnormal.  I didn’t have any other tests, like leukotrienes and chromoglanin A, done because five years ago these weren’t available in the UK and I was only diagnosed with ‘probable’ MCAS based on my history and symptoms.  So it doesn’t take a rocket scientist to work out that the current mediator release tests simply aren’t sophisticated enough.  They’re looking for acute mediator release, not the chronic mediator release experienced by MCAS sufferers.  Maybe we need to re-think what the maximum levels are, or maybe we need to repeat test weekly over a period of say a month or two?  I’d love to be tested while I’m having my period because my reactions are so much worse then.

Being one of the first people to talk about the link between mast cells and M.E. I am delighted that the medical profession finally seem to be catching on and that M.E. patients in America at least are now being more routinely tested for MCAS.  We really need a large scale study of severely affected patients though, and much more sophisticated tests to check for chronic mediator release, but at least we finally seem to be making a start.  “The journey of a thousand miles begins with one step”.

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Weekly roundup

Apologies if this post makes no sense, but I have a brain that feels like it’s been involved in a car accident and I think I’m starting with a hormone induced migraine :-/

The reason I am feeling like road kill is that I made an epic 600 mile journey to London on Friday to see one of my photographs in its very first print Exhibition.  From over 40,000 people I was chosen by the Photographic Alliance of Great Britain, along with 59 others from across the UK, as one of this year’s best amateur photographers and my work will be shown in a Gallery in the Capital for the next two weeks.  Holy Shit Bat Man!!!!!

My lovely friend John from my Camera Club offered to accompany me (for which I was hugely grateful, as the thought of going alone was daunting) and we caught the 8am train from Cumbria, getting into London at 11.10am.  We then caught the tube to Southbank, where we stopped off for lunch at a nice cafe, before making our way to the Gallery for the private opening ceremony which lasted til 4pm.  Getting back to the train station during rush hour on a Friday was an experience (!) but we made it and were soon winging our way back up north at the end of a brilliant, if ridiculously tiring and physically challenging, day.

At 9pm home was in sight when the train manager came over the tannoy to say that high winds were forcing him to apply a speed restriction to the train, and instead of travelling at 125mph we were having to crawl along at 50mph, causing a delay of over an hour.  My back already felt like it was going to snap in two and there was no way I could sit for another 90 minutes, so John had to move seats and I had to take my boots off and lie down as best I could across two tiny, hard chairs with my feet dangling in the aisle annoying everyone who wanted to get past!  We eventually got back home at 10.10pm, when I had to collect my dog from my parents’ then drive the 20 minutes home in lashing rain and howling winds.  I’ve never been so glad to get in my pjs and into bed in my entire life!  However, I DID IT, yayyy for me 😀  Of course, I will be suffering the consequences for days, if not weeks, but who cares right?!

On to other news.  I am currently driving a courtesy car as mine is in the body shop being re-sprayed after my little prang last month.  The courtesy car is geared though (stick shift), not automatic like mine, and my legs are protesting already!

My Dad was really poorly on Wednesday evening with one of his ‘dizzy/vomiting’ episodes.  The poor man projectile vomited for nearly 2 hours and during these attacks he literally goes off his legs and can’t walk.  Thank God we are seeing the Neurophysiologist on Monday who I am hoping can shed some light on what is going on.  We still don’t have a date for his back surgery though, so it’s looking unlikely it will happen before Xmas.  Big sigh.

Friday was my last big event in a year which has been brilliant, but stupidly over-busy, and I am looking forward to a much needed rest and the opportunity to recharge my very flat batteries.  Famous last words 😉

 

 

 

 

Mr Fix-It

For the entire quarter of a century I’ve been ill people who know nothing about me or my diseases have been trying to fix me.  I know they mean well, I truly do, but why anyone with no medical qualifications thinks they know more about my health than I do baffles me and how they think they have the right to offer me unsolicited advice baffles me even more.  Would I tell a total stranger online, or some family member I never see from one year to the next, how to manage their finances, parent their kids or improve their marriage when I know nothing about what’s really going on, the issues are deeply personal and they didn’t ask for my advice in the first place?  No.  Yet everyone and his dog thinks they can tell me how to manage my health.  It irritates the life out of me.  Scrap that, I feel livid just thinking about the decades of well-meaning, but ultimately intrusive and insulting, comments I’ve had to endure.

The conversations with people I actually know usually start something like this:
“Hi Jak, how are you today?”
“Oh, fair to middling” (which is a Cumbrian term for ‘crap’ – I refuse to say fine when I am clearly not, and never will be, fine).
“Oh, that’s  a shame.  What’s up?”
I am not going to list the dozen symptoms that are currently troubling me the most, or go into detail about my bowel habits, menopause or the fact I have itchy hives on my arse which are personal and no-one’s fucking business but mine, so I usually reply “Just having a pain flare.”
“Have you not tried some painkillers?”
Oh my God why I haven’t I thought of that!  Said no chronic pain sufferer ever.  Seriously, I have no clue what I’m supposed to say to that.  I’ve tried various responses, which all lead further down the path of well-meaning, but ultimately insulting, advice and only serve to wind me up like a clock.  For example:
“I’m allergic.”
“Really?!   Surely there’s something you can take?”
“No.”
“Well what about things like Gabapentin/Amitriptyline/insert-any-non-analgestic-drug-of-your-choice-here?  My friend with ME is on that and it’s really helpful.”
It’s at this stage in the intrusive conversation when I’m hormonal, have barely slept for 10 days and am so fed up I could cry that I want to punch them really hard on the nose.

Or I get the whole “have you thought about acupuncture/a gluten free diet/prayer/insert-the-thing-which-cured-you-or-your-friend-here?” and then have to justify why I have, or haven’t.  Like it’s anyone’s fucking business.  Do I ask you if you’ve tried debt counselling or been on Mum’s Net for advice on controlling your unruly teenager?  No I do not, because your private life is none of my Goddamn business and you are a grown adult capable of running your own life.

Then, at the end of the conversation when I’ve had to evade all their well-meaning but unasked for advice the other person gets a bit narky with me, like I’m deliberately letting myself suffer when there is clearly help out there if only I’d try it.  When they’ve had over two dozen potentially life threatening anaphylactic reactions to everything from herbal tea to B12 supplements and have PTSD at the mere thought of trying a new fruit let alone a powerful drug like Gabapentin, then they can tell me what I should and shouldn’t be trying.  Until then, they  need to shut the hell up.

If I want someone’s advice, I will ask for it.  Until then, I am allowed to say I’m not well without you trying to fix me.

The best response is the one my lovely friend John at Camera Club uses and it’s this:
“Hi Jak, how are you today?”
“Oh, fair to middling”
“I’m sorry to hear that.  I hope you’re back to your normal again soon.  Let me know if there’s anything I can do to help” (and he actually means that, unlike most people who say it and pray you never ask for help).
“Thanks, me too.”  And I walk away from the conversation knowing he both cares and gets my situation.  Note he doesn’t say I hope you feel better soon, because that’s the worst thing you can say to someone who is chronically ill with no hope of ever being well.

I’m fed up of people trying to fix me.  I don’t care that it’s well-meaning.  It’s intrusive and patronizing.  If I ever want someone’s advice on my health I will ask for it, but it’s unlikely I will be asking some stranger off the internet or some random family member.  Call me weird, but it’s much more likely I will be asking a medically qualified Consultant who specializes in at least one of my rare and complex diseases!

Weekly roundup

Everything I do has to be paid for and, as expected, last Sunday’s day in Lancashire took its toll and I spent Tuesday crippled by a banging, sickening migraine which lasted til Thursday.  Yay.  To add insult to injury my parents haven’t even got me a ‘well done’ card for passing my distinction let alone a bunch of flowers which, if I’m honest, is kinda hurtful especially when they did both for my niece recently when she passed her police exam.  It’s almost as if, because I’m ill, nothing I achieve means anything and isn’t real despite the fact that, because I’m ill, it’s twice the achievement it would be if I were healthy!  At least some of my Camera  Club buddies are happy for me and took me out for a little celebratory lunch on Friday.

Friday night I slept for 8 whole hours and only woke once.  No big deal you might think, except the fact it’s virtually unheard of in my house.  Before I got ME I never had trouble sleeping, but once of the first symptoms of the disease for me was insomnia and I have struggled to sleep for nearly a quarter of a century.  When I started my low histamine diet it definitely helped my sleep situation, but then along came peri-menopause and it all turned to crap again.  And just recently my awful back pain has made the situation ten times worse and sleeping in my house is like catching fog.

I am bone weary and at the moment can barely keep my eyes open past 9pm.  However, no matter how shattered I am I still only sleep for about 5 hours and during that time I’m awake at least 2 or 3 times, often having to get up to pee in the early hours.  Friday night I was particularly shattered and absolutely desperate for sleep, but as I lay in bed watching TV with my back killing me I knew that yet again it wasn’t going to happen.  In desperation I tried every trick I knew to get my back to settle down – having a warm bath, slathering myself with Ibuprofen gel, putting on my TENS machine even though you aren’t supposed to sleep with one on, and wearing both my SI belt and my back brace, despite the fact it squishes my intestines.  I was probably the most comfortable I’d been in ages and, amazingly, actually nodded off watching tv at about 8.30pm, something I hardly ever do.  I was startled awake at 11.45pm by the telly blaring, so got up for a wee but went straight back to sleep and the next thing I knew it was 5.30am.  Whoo-hooo!!   I mentally felt like a different person Saturday morning.  Last night was business as usual though and this morning I feel like I’ve been dragged through a  hedge backwards :-/

I woke up Saturday morning with my wrist swollen, red and itching like a bitch.  No clue why and I’m just  putting it down to one of those mast cell things.  My arse is covered in hives and has been for a month now so my histamine is obviously pretty high.

Yesterday was the 1st of December, so Bertie opened door number one on his doggie advent calendar and ate the carob chocolate inside and I put my Christmas tree up so the lounge is now all sparkly with lights.  I find Xmas difficult being on my own and sick, but I still make the effort to put up decorations even though I never have any visitors.  *I* see them and that’s all that matters.

Today I’m going in to town to put my parents’ decorations and tree up even though it’s the last thing on earth I want to be doing.

This week is another big week.  I am off to London on Friday to the Gallery opening where my photograph is being exhibited – I am sooo excited!!!  I’ll tell you all about it in next weekend’s roundup.

Weekly roundup

I did it!!!!!  I gained my second photographic distinction and can now place the letters DPAGB after my name 🙂  It was a stupidly long day – I set off from home at 6.50am and got back at 8.50pm – but I made it and am both relieved and chuffed to little meatballs.  The fifteen images I used for my award can be found here.

As you know, the day before my back was killing me and my neck was so painful I could barely turn my head.  However, I woke on the morning of the distinction and the neck pain had literally vanished overnight despite the fact I only managed four hours sleep.  It’s not the first time I’ve gone to bed in agony and woke to no pain at all and it totally baffles me as to what on earth is going on.  My hip and SI pain were also quite good on the day (though they’re crap again this morning), so I only really had to cope with the mid back pain which was a good job because after 7 hours of sitting on hard metal chairs my back felt like it was ready to snap in two.  I also struggle to be upright at all for any length of time, so to have to sit up for an entire day was a huge challenge and a couple of times when it got hot in the auditorium I felt like I was going to pass out – I’m so grateful that didn’t happen because landing with a bang on the floor would have been mortifying in front of hundreds of people 😉

I’ve set myself too many challenges in respect of my photography this year – not only have I been working towards this distinction I’ve also been working towards an international distinction and am just about to submit my portfolio for that.  Then there’s been various important nation-wide competitions, judging my first International photography Salon, doing my first talk at a Camera Club and of course still doing my usual Camera Club competitions.  It’s too much and my health simply can’t stand up to that level of stress and activity, so I’m hoping to just chill until the New Year and rest up.

Of course, resting assumes my Dad doesn’t go in for his spinal surgery about which we have heard nothing.  The Surgeon said he was hoping to do the op before Xmas but before that he needed a nerve conduction test and another MRI scan about which we have heard diddly shit.  With less than 4 weeks to the holidays I really can’t see the operation happening and as a family we are pig sick because my Dad is suffering massively and can barely walk.  He’s had about as much as he can take bless his heart.

Well, I must get up and dressed despite being completely knackered.  I can’t find anyone to walk Bertie on Mondays and Fridays so no matter how I feel I have to get my thermals on and take him out.  At least it’s dry, despite the fact it’s -2C outside, and I’m sure the fresh air will do me good – that’s what I tell myself anyway 😉

Short ranty post

I feel dreadful this morning so this is just a short post to let off steam.  I recently saw this post on the ME Association’s Facebook page.  It’s research using hand grip strength  as a diagnostic biomarker for M.E.  Really?  Like……..really?!!  Can you imagine going in to the GP’s Surgery, shaking the Doctor’s hand and her saying “yes, you’ve definitely got cancer I can tell from how weak your hands are”.  I have never heard such utter tosh in all my life and the fact that money has been spent on this bollocks makes me livid.

I was chatting about it with my bestie at lunch on Sunday and we both agree that we are quite strong for girls.  In the years when I was doing up my little cottage I once bent a chisel.  My cousin, a builder, said “Jak, it’s not possible to bend a chisel” until I showed him mine, to which he replied “are you a fucking super human or just a freak?!”  The answer to which is probably just a freak, but a strong freak nevertheless.

My besite is also strong for a girl.  We’re both quite masculine in our personalities, so maybe we have more testosterone than your average female, who knows?  My grip has definitely weakened over the last decade but that’s much more to do with pain and ligament weakness from my Ehlers-Danlos Syndrome than anything to do with my M.E.

My Dad has a weak grip, but then he has spinal issues – neurological diseases, of which M.E is one, tends to cause weakness.  My Mum also has a very weak grip, but then she’s had two lots of hand surgery for Dupytrens Contracture, also has hEDS and has survived Guillain Barre Syndrome which has left her with permanent nerve damage.  Anyone who is ill tends to be weaker than when they are well.  If you’ve been up all night puking with a tummy bug you’re going to feel pretty floppy the next day.  Since when is having a weak grip any indicator of a specific disease – it could be caused by sodding anything!

That a medical team would waste money, time and resources doing research like this drives me to despair when we are so much in need of an actual biomarker for this devastating disease.

 

 

Weekly roundup

Sorry there has been no blog post this week – I simply didn’t have the time, and more importantly, the energy.

Tuesday I drove my Dad 90 miles to the other side of the country for his pre-op assessment.  He has spinal stenosis due to a bulging disc and needs decompression surgery.  Eighteen months ago he was still walking 6 miles up the mountains every week but now needs a wheelchair outdoors and has to use a stairlift to get up the stairs to his apartment.  His deterioration has been swift and scary and he’s desperate for surgery, for which he’s now been waiting nearly 4 months.  At the assessment we met the Surgeon who will be carrying out my Dad’s operation and he dropped a bit of a bombshell.  He said that although my Dad’s MRI scan showed the narrowing in his spinal canal it isn’t bad enough to be giving my Dad such severe symptoms and he thinks something else may be going on further up his spine.  So while we wait for the surgery to take place I’ll need to take him back to the Hospital a further two times, once for an MRI of his upper back and neck and once for some nerve conduction tests.  While it’s bloody annoying to have to do another couple of 180 mile round trips I’m glad that the Surgeon is being thorough.  My Dad has MGUS (monoclonal gammopathy of undetermined significance) which showed up unexpectedly in his bloodwork a year ago and none of the doctors I’ve spoken to so far have wanted to know.  However, MGUS can cause peripheral neuropathy and we need to know whether that is contributing to his leg weakness.  He also has cramping/spasming hands to the point where he can’t even pick a cup up and again this has been ignored by the doctors we’ve seen so far.  But it’s not normal for heaven’s sake and I’m chuffed the Surgeon agreed and has decided to take a look at his neck at long last.

The Clinic was running 2 hours late, so we ended up having quite a long day.  We set off at 9.15am and finally got home at 3.15pm.  I was knackered.  However, that night I was teaching the beginner’s photography class so had to pull my leaden body and foggy brain together.  I managed to get through it but was so exhausted it was like an outer body experience and I can’t remember a thing about the evening or what I said!

I coped really well all things considered but the next day I woke to find I was crippled with pain and could barely walk.  I blamed it on all the driving and having to push my Dad’s wheelchair…………until my period arrived out of the blue :-/  My surging hormones seem to be affecting my ligaments massively as I transition into Menopause and even though my period has now finished my back and legs are still stupidly painful.  The constant shooting nerve pain right down to my ankles is particularly wearing and I can’t get comfortable enough to sleep.  I’m so over it I can’t even tell you and I had to miss Wednesday’s Camera Club as I simply couldn’t sit upright.

Thursday night I’d agreed to go to a Club event.  It was a buffet to thank those of us who had judged a recent International Photography Salon and I’d really been looking forward to it as I have no social life and rarely get to mix with other people.  Sod’s law that it coincided with having to take my Dad to the Hospital and my unexpected period, and I woke that morning feeling like road kill.  I lay in bed and cried at the unfairness of it all before eventually pulling my sorry arse together and just getting on with it.  I rested until late afternoon, had a bath, took some ibuprofen, slapped on my TENS machine and my SI belt and off I toddled.  I’m glad I forced myself to go because I had a smashing night but I’d be lying if I said I wasn’t still suffering for it three days on.

I’ve lost my reading glasses.  The case is on my over-the-bed table as it always is but the specs are nowhere to be found.  I have no clue where they could be and have searched every inch of my little house to no avail.  £160 of spectacles seem to have disappeared into the ether just before Christmas when I’m already broke.  FFS!

Speaking of Christmas, it’s five weeks away and I haven’t given it a second’s thought.  Arrrghhhh, panic!!

Today I am going out for lunch with my bestie 🙂  I don’t know why but this week I’ve felt lonely and a bit sorry for myself so I’m looking forward to seeing her, plus there’s the added bonus of someone else making me a meal for a change which is my idea of heaven.   But first I have to get my thermals on and take the hound out.  It’s a stunning, crisp late Autumn morning here in the lake district but it’s bollock freezing cold and I’m definitely going to need a hot water bottle stuffed under my jumper to keep me warm on my scooter.  It makes me look as fat as a whale but I’ve gained so much weight in the last 12 months I actually am as fat as a huge blubbery whale, so that’s alright then 😉