Tag Archives: inflammation

Research trends

I’ve mentioned recently my frustration at the current research trend in the M.E. world to focus on energy production when, as a sufferer, I know that the ‘fatigue’ (for want of a better term) I experience is merely a symptom of immune activation not the root cause of my disease. Researchers have been studying energy production, in particular the mitochondria, as a cause for M.E. for over 20 years now and still haven’t found anything, which leads me to conclude there is nothing to find.  I’m not suggesting that mitochondrial dysfunction isn’t part of the disease picture but it’s definitely not the cause.  I wish these people would talk to patients more, especially we old timers who’ve lived with the illness for decades!

I’m equally unconvinced by the current trend to put every ailment known to man down to gut issues (SIBO, flora, bacteria etc) – it just feels like the current ‘hot new thing’ in a very long line of ‘hot new things’ on which to pin disease.  My Dad excitedly kept an article out of his newspaper for me this week which touted “answer to chronic fatigue syndrome found in the gut” and, much as I love him, I just sighed.  Here’s the thing: most cases of M.E. start with some kind of viral or toxic event (OP poisoning, vaccinations) but the event is different in all of us – mine was a tummy bug, yours might have been glandular fever, someone else’s a Hep B vaccine.   If we’d all started with a tummy bug then I’d be much more open to the disturbed gut theory, but we didn’t.  The one thing we share is immune activation, so for me the answer has to lie in the immune system and in particular its response to viral or toxic trauma.  As I’ve said before, if researchers studied why people with the flu are so weak and exhausted they can barely get out of bed they’d go a long way to finding out the cause of M.E.  In fact, it gobsmacks me that no-one has looked at that before now!

No offence to my American friends, but there is a mould trend going on in the States with everyone convinced that mould is the root cause of their issues and it makes me want to chuckle.  Northern England is wet for 10 (sometimes 12) months of the year, humid in summer, we mostly live in houses which are at least 100 years old and inherently damp, so I’m sure mould is everywhere.  We couldn’t escape it if we tried.  Yet not every Brit you meet is sick and we don’t have a larger M.E. population than any other country as far as I’m aware.  Obviously rampant mould growth, where you have black stuff growing on your ceiling, is hazardous to health and must be dealt with but other than that we in the UK don’t give mould a second’s thought – it’s been around a lot longer than we have and as a species we’ve managed to survive.

I’m just as cynical about the current inflammatory trend.  Inflammation, it seems, is everywhere and is causing total havoc.  Only of course it’s almost impossible to measure inflammation or to say, if inflammation is present, why it’s there and whether it’s a good thing or a bad thing.  When we cut ourselves the wound is immediately inflamed which is a painful, but absolutely necessary, part of our body’s response and vital for healing.  And before anyone comments, yes I know there’s a difference between acute and chronic inflammation but who’s to say chronic inflammation isn’t just as protective as acute?  It’s got to be there for a reason and we’d do better to find out why our bodies are enlisting our inflammatory response, rather than blaming the inflammation itself.

Going off-topic slightly, the trend of foods purportedly giving you every disease from cancer to Alzheimer’s drives me insane.  We have no idea what causes Cancer and even less idea what causes dementia, so for anyone to say “burnt sausages give you cancer” or “broccoli reduces your risk of Alzheimer’s” is absolutely absurd and makes me furious.  In fact, I’d go as far as to say researchers who tout this nonsense should be prosecuted.  The same goes for anti-inflammatory foods.  If we have no accurate way of measuring inflammation, how do we know what foods affect it?!

There have been articles in the newspaper this year saying “exercise staves off dementia” and “lack of sleep increases risk of dementia” and I think “what a crock of shit!”  My Dad, who is 78, still walks 8 miles a week up a mountain and, as a former marathon runner, has exercised vigorously his entire life.   He’s never had insomnia and sleeps 9-10 hours a night without a problem, yet has dementia.  My Mum, on the other hand, hasn’t exercised since she was a child and wakes at least twice a night every night, yet she is totally mentally on the ball (when she’s not drunk!).  All these articles do is play on people’s emotions.  We don’t have a clue what causes Cancer or Alzheimer’s and that lack of control scares us, so we focus on what we eat or how much we exercise because those are two things we can control and it makes us feel better.

I’m no psychologist, but much of the information currently touted as being bad for our health, or good for our health, is environmental – sleep, exercise, food and living conditions.  In other words, all things we can control.  We’re extremely fearful of the fact that Alzheimer’s or Cancer might be viral, bacterial, or genetic, or even worse some novel new thing we as yet know nothing about, and therefore outside of our control.  We’re fairly arrogant us humans and think that we have power over our bodies, when in fact life is mostly just random and shit simply happens.  If keeping mentally alert staves off Alzheimer’s how come author Terry Prachett developed it in his 50s?  If the phytoestrogens found in soya stave off breast cancer how come soy munching vegetarian Linda McCartney died from the disease?  How come my Mum, a lifelong smoker, couch potato and current alcoholic, is nearly 80 and has never had cancer and her non-smoking, tea-total, bike riding sister died from it?  None of it makes sense and that’s the very thing that scares us the most.

Seizing up

When I was younger I used to watch older members of my family struggling to move because of joint pain and stiffness and thought smugly that I’d never end up like that.  I was so flexible I just thought it wouldn’t ever be an issue.  Of course I had no clue then that I had EDS or that I was actually more likely to seize up than other people, not less, and at a much earlier age.

The first thing to stiffen up was my back and neck.  I’ve had back pain since the age of 11 so have seen my fair share of physios over the years, but as I approached my mid thirties when they tested me to see how far back I could bend I realized I was struggling.  By the time I hit 40 I could still bend forwards to touch my toes no problem, but could literally only bend backwards a couple of inches.  I went from being able to do backflips to being as stiff as a board in the space of just a few short years.  My neck stiffness makes turning my head problematic and this causes issues when driving – I even struggle to turn enough to put my seatbelt on, let alone look behind me to reverse.

The next body parts to stiffen up were my hands and arms.  I found my hands cramped doing the slightest activity, like typing or chopping veg, and although my hands are still as flexible as ever the ligaments feel stiff, every movement strained.  Then for 2 years I had awful chronic “tennis elbow” in both arms.  The ligaments were obviously both severely inflamed and everything I did aggravated the pain.  And then suddenly the pain stopped and the stiffness set in.  It’s really difficult to explain the stiffness associated with my hypermobility.  I’m still, on the whole, much more flexible than healthy people but at the same time every movement feels like it’s straining ligaments which are already taught like piano wires.   I now wake every morning with seized up arms and have to give my elbows a good rub each day to get them going.  I also regularly wake with dead arms, y’know the feeling you get when you sit on your leg for too long – totally numb but with painful pins & needles.

In my mid forties my hips and pelvis started to stiffen up.   Exactly the same scenario as with my elbows.  They started with bursitis (ie inflammation) in both hips and then after about 18 months the pain stopped and the stiffness set in.  I can now no longer bend forward to touch my toes – in fact I can’t even bend forward far enough to put my socks and shoes on.  I get out of a chair with an “umpff” and walk like a constipated duck until my pelvis decides to loosen itself up.  My Dad does the same thing – the only difference being he’s 77 and I’m not even 50 yet!I

My current problem is with my feet.  I took them completely for granted until about 18 months ago when they started to hurt – you have no idea how painful walking is when your feet are playing up.  I’m currently in the inflammation stage with what’s called Metatarsalgia or sometimes Sesamoiditis depending on who I see.  I have burning pain underneath my first toe and the balls of my feet which at times feels like I’m walking with a shard of glass in my shoes.  I’ve tried 5 types of orthotics now and nothing has helped, in fact some have made it much worse.  I’m now waiting for the inflammation to subside and the stiffness to set in.  It’s already started and first thing in a morning I walk “ooching” and “owwing” across my hardwood floors like a 90 year old.

My pain and stiffness has always been worse on my right hand side (I’m right handed).  I think it’s because I subconsciously favour the right side of my body and it’s suffering the most wear and tear, but I could be wrong and it could be due to something else entirely.  When I was really ill with M.E. the right side of my body was always more severely affected, so it could also be a brain related thing.

I don’t feel I have arthritis per se and neither do the Doctors I see.  X-rays all reveal perfectly normal joints.  The exception is my back, where my MRI showed “mild” wear and tear arthritis but the neurologist said that was perfectly normal for my age and she probably had worse spinal arthritis than me!  My bones/joints don’t feel abnormal and don’t hurt – my ligaments, on the other hand, most certainly do which is no surprise given I have a connective tissue disease.  And despite the burning pain all my inflammatory blood markers and auto-immune indicators come back really low, which always surprises me.  As I keep saying, on paper I’m the healthiest sick person you’re ever going to meet 😉

I’d be lying if I said I wasn’t concerned for my future.  If I’m like this at 48 what on God’ green earth will I be like when I’m 70?  It doesn’t even bare thinking about.  It’s weird, though, that I’m seeing a pattern of symptoms: first comes about 2 years of chronic inflammation, then this largely goes and the stiffness sets in.  Being allergic to pain killers I prefer the stiffness to the pain, even though it limits my movement – at least it doesn’t keep me awake at night.


Chronic Pelvic Pain

I started my periods aged 11 and they were painful from day one.  Dysmenorrhoea (ie excessively painful periods) is common amongst even the healthy population and suffered by up to 75% of women but it’s even more common in Ehlers-Danlos patients with a suggested 92% of women having painful menses.  When I could take pain killers it wasn’t too much of a problem – a few Feminax or some Mefanemic Acids tablets and it was down to a dull roar and I could carry on my normal life, but when I became allergic to painkillers in my mid thirties it became much harder to live with.

There are various theories as to why having EDS causes excessive period pain but in truth we don’t conclusively know the reason.  With up to 75% of healthy women also having dysmenorrhoea there are factors involved which obviously have nothing to do with EDS and in my mind EDS just complicates an already common problem.

When I hit 40 my EDS got much worse and on top of that my (pre-existing but largely a-symptomatic) Mast Cell Disease went nuts.   About 10 years ago I developed lower, right abdominal pain.  It’s a stinging pain.  It doesn’t come and go, it’s there all the time, but it does get much worse when I ovulate and during my period.  I had investigations and my right ovary looked totally healthy.  Endometriosis was suspected but the only way to know would have been a Laparoscopy and for that I needed a general anaesthetic – no way Pedro, not after I’d already had a reaction to general anaesthetic after having spinal surgery when I was 16, longgggg before my MCAD caused me any drug issues whatsoever.  Gawd knows what would happen now!

Over the last decade my pelvic pain has gotten worse.  Much worse.  Ovulation, whichever side it’s on, can be excruciating.  For 4-5 days before my period I suffer stomach cramps, increased lower back pain and bowel pain (which can get so bad I have to do labour breathing when I poop) and for the 3-4 days of my actual period my entire pelvis and the tops of both thighs feel like they’re on fire.  This often doesn’t settle down until I ovulate, up to 14 days later – I’m not saying it goes, just that it becomes tolerable.  So I’m basically in pain all the time.  A burning pain, which radiates down to my groin and pelvic bone on the right side and goes across my lower abdomen.  And on top of that I have the constant stinging pain on the right-hand side which I always assumed was a problem with my ovary.  It’s not a lot of fun.

The Gynae Consultant on Monday seemed perplexed by my pain.  Both my ovaries look totally healthy.  I’ve obviously had various cysts over the years but they’ve all resolved – many women get monthly ovarian cysts, sometimes quite large, and they don’t cause the constant pain I have.  I may have endometriosis which is notoriously difficult to diagnose, though if there were adhesions sticking any of my organs to each other this would usually be seen on an MRI and my MRI in November was totally normal (other than finding a 5cm right ovarian cyst which has now disappeared).  Pelvic Congestion, where the veins in the pelvic area expand (more common in EDS) would also usually show on MRI and mine all look tickety-boo.

I do have lots of uterine fibroids, both internal and external, and fibroids can be painful.  But from reading various online message boards about fibroids the pain experienced is nothing like the pain I have so I’m doubtful they’re the cause of my issues either.  To think I could go through the trauma of having a hysterectomy and still be left with the pain totally freaks me out.

There is always the niggle in the back of my mind that my pelvic pain is down to my bowel and nothing whatsoever to do with my lady bits.  I get sharp, stinging pains from my stomach to my backside, alongside chronic burning pain which can only be inflammation.  A belly MRI 5 years ago showed a totally healthy GI tract though, from stomach to bum, so again if anything serious were going on surely to goodness something would have shown up.  I’m sure my entire GI tract is chronically inflamed but would that cause the kind of pelvic pain I’m enduring?  I really don’t know.  When I talked to the Gastroenterologist he thought some of my pain could be Gynae related, and when I talked to the Gynae this week she thought some of my pain could be Gastro related!

My worst nightmare is that I undergo the trauma of surgery only for them to open me up and find a totally healthy looking pelvic area.  No endometriosis, no scarring from previous burst ovarian cysts, and no real explanation for my pain.  It could simply be chemical from my MCAD (mast cells leak mediators which cause chronic inflammation and the uterus is packed with mast cell receptors) and, as I struggle to take any of the drugs used to treat Mast Cell Disease, I might just be stuck with it.  Forever.  Somebody shoot me.  Or maybe having my fibroid packed womb out will at least help, if not cure.

Like most issues with my body there just are no easy answers.  You can only do what feels right at the time and, if I do get to have my womb removed I don’t think I’ll regret the decision for a single second, even if the op and post-op period is rough.  Having had dysmenorrhoea for 37 years I’m just over it and the thought of never having another period in my life sounds like heaven.  If my ovaries are healthy I’ll get to keep them which, given my family history of early osteoporosis, would be beneficial and means I can have a more gentle slide into menopause.  I’d also like to keep my cervix, cos I’m not sure how orgasm works without one (and no-one seems to talk about that on the message boards!).  This all might be a mute point though as the Anaesthetist might say surgery is just too risky given my MCAD/drug allergies.

I’m having an MRI scan tomorrow (Friday) which will give a better view of my fibroids then I have to wait for an appointment to see the Anaesthetist who will decide if surgery is an option.  Wish me luck.

p.s. I should have made it clear that I don’t have heavy bleeding with my periods, quite the opposite.  I always thought fibroids caused heavy periods but according to the Consultant if they are on the outside of the womb they have no effect on bleeding.



Gulp.  I’ve mentioned the I word.  It’s scary.  Anti-inflammatory diets are all the rage, and just like the Paleo camp and the Gluten-free camp anti-inflammatory diet enthusiasts can be a fanatical bunch who don’t like their views questioned.  But you all know me by now, ever the one to stick her head above the parapet.  *Deep breath*

I’m quite cynical when it comes to diet curing all ills, despite the fact I’m on a restricted diet myself.  I’m no expert on inflammation so I try to look at both sides of the argument – if I google “anti-inflammatory diet benefits” I also google “debunking anti-inflammatory diet”, which not many people embarking on the diet tend to do for themselves.  They’re sick and in pain and they want to believe it will work, which I totally understand having been there myself.

There is shed loads of information online about anti-inflammatory foods and how eating such foods will cure everything from cancer to acne (in which case I’ve no idea why we poison people with chemotherapy – why not just feed them a wheelbarrow load of kale every day instead?).  What few of these sites tell you is that inflammation isn’t a single bodily event with a single cause: there are various types of inflammation, causing a range of symptoms, affecting a range of bodily systems and from all sorts of causes.  And not all inflammation is bad – shocker I know!

If you get strep throat your immune system leaps into action, inflammation being one of the symptoms caused by the immune response to bacteria, infection or trauma.  Inflammation is a vital part of the healing process and we wouldn’t live very long without it.  Nothing you eat, or don’t eat, is going to affect this type of acute inflammation which is a very good thing or people who lived on pizza and coke would be in serious trouble every time they cut their fingers.

Problems arise when inflammation becomes chronic, such as in Crohn’s Disease, or causes widespread and systemic damage like in Arthritis.  But even in chronic inflammatory diseases the inflammatory pathway is different depending on the illness, eg. the inflammation in coronary heart disease is different to the inflammation in cancers, is different to the inflammation in Arthritis, is different to the inflammation in allergy induced Asthma, which is one of the reasons why we don’t give the same drugs to allergy patients that we give to cancer patients.

Many people with mast cell disease follow an anti-inflammatory diet the reason being that when mast cells degranulate or leak, the chemicals (or mediators) they release are those involved in inflammation.  I can totally understand the logic, but there is no research to back the claims up that eating particular foods will tackle this type of inflammation as far as I could find.  From my own personal experience I’ve had all the usual inflammatory markers measured, eg. ESR, CRP and PV, and they’ve all been absolutely normal.  In addition I’ve had my poop measured for inflammation and absolutely nothing showed up.  Having said all that, I have chronic gastritis (ie stomach inflammation) – now why didn’t that show up on the blood tests?!

Mast cell disease isn’t a chronic disease in the same way as Arthritis or heart disease.  Mast cell disease is much more akin to an acute immune event, like having strep throat.  Our mast cells constantly think we’re being attacked by a foreign invader and mount a response, including the release of inflammatory mediators.  The problem being our mast cells are so twitchy they can do this to just about anything, which means we have many acute attacks (sometimes several a day) and our body hasn’t recovered from the last one before the next one arrives – a bit like being stung by a bee over and over and over again.  And if eating anti-inflammatory foods has no effect on an acute event like strep throat I’m unconvinced it has any effect on the multiple acute events of MCAD or Mastocytosis, although I could be wrong (I often am 😉 ).

There isn’t even much agreement on what constitutes an anti-inflammatory food or diet in the first place – I got as confused reading about conflicting anti-inflammatory foods as I did about conflicting low histamine foods!  Dairy foods are widely thought of as being inflammatory, yet this review of all the research to date found no such link (in fact one of the studies concluded just the opposite, that dairy lowered inflammation).  You would think something like blueberries would be considered highly anti-inflammatory, but actually fruit contains high levels of sugars, which spike insulin, which is inflammatory.  It’s actually really complicated!

We’re all different, with different genetic susceptibilities and make-ups and consequently we react to foods differently.  For example over 90% of some East Asian communities are lactose intolerant, whereas only about 5% of people of Northern European descent are lactose intolerant.  Around 50% of Asians have a toxic reaction to alcohol, which is virtually unheard of in Northern Europeans (we just drink wayyy too much and make idiots of ourselves instead!).  It stands to reason that different people will have different reactions to foods based on their genetic make-up.  So while one person finds eating certain foods makes them feel brilliant, another person eating the same foods will find no difference whatsoever, and I don’t see why so-called anti-inflammatory foods would be any different.  There is no “one size fits all” diet.

It makes me laugh when I read comments online about people who’re following an anti-inflammatory diet (which usually excludes dairy and grains, who are so evil I have to wonder how we’ve managed to grow the world’s population to over 7 billion with a diet rich in them) and say how well they now feel, how much energy they have and that they’ve lost 2 stone (28lbs) in weight.  What the hell were they eating that they were 2 stones overweight in the first place?!  Obviously a pile of crap, so I’m not surprised now they’re eating fresh fruit and veg and some decent protein they feel better.  It’s not rocket science.  If I ate a diet which caused me to lose 2 stones in weight I’d be under 6 stones (84lbs) and probably in the hospital – losing weight would be unhealthy for me.

The whole thing is a lot to get my head round.  I’m not dismissing anti-inflammatory diets in any way – most so-called anti-inflammatory foods are plant based in origin and eating any plant based food is going to be good for you in all sorts of ways.  But neither can I say categorically which foods are anti-inflammatory and which aren’t, or how any food works on inflammation in the body.  And from what I can gather neither can anyone else (though I’m sure I’ll have all sorts of comments telling me this person or that person has the definitive list of anti-inflammatory foods!).  I personally have never had acne (in fact I’ve never had a single pimple in my whole life), or been overweight (despite zero exercise for 20 years), or had high blood pressure, or had any abnormal blood results for inflammation so if I do have significant inflammation it’s manifesting itself in fairly hidden ways but that’s not to say it’s not a problem for me.  I don’t know.  I don’t know lots of things and the science so far doesn’t sway me one way or the other.  I’ll just continue to eat a balanced diet, containing as wide a range of foods as my reactions will allow so that all my bases (not just inflammation) are covered.