Tag Archives: chronic fatigue

Thoughts from an old timer

My post about being clueless as to what causes disease and in particular that we can somehow eat our way better has resonated with many of you, so I thought I’d do a follow-up specifically about M.E., a disease for which there are, if you believe the world wide web, a bewildering aray of “treatments” and even “cures”, many of which are food related.

I’ve had M.E. for over twenty years and like to think I have more experience of the disease than someone who has been sick for a year or two or researchers new to the field.  In the initial phase I was so ill I nearly died.  I then spent 10 of the best years of my life in bed having seizures, puking and crawling to the toilet every day of every month of every year without remission, and the latter 14 years functional(ish) but still very poorly.  And I’m not on my own.  I have many friends who got ill at roughly the same time as me but, unlike me, are devastatingly still as sick as the day they first developed the disease.  Emaciated because they can barely eat, wasted because they can barely walk, isolated because they can barely speak.

I know that people who are currently ill think that they are the pioneers of this disease and are trying novel treatments by using oxygen chambers, drinking Kombucha tea, shovelling in probiotics, taking this drug or that drug, not eating gluten/dairy/sugar/carbs/insert-just-about-every-diet-known-to-man-here, eating worms, having enemas, drinking whale pee (just kiddin’ , in case you were wondering 😉 )………the list goes on.  But they are not.  The original ME sufferers have already been there, done that and got the t-shirt.  We have not laid in our sick bed and given up.  We have fought like cornered tigers to get better.  My parents spent over £20,000 on tests and treatments for me but none of them worked – in fact, 80% of them made me ten times worse.  Please, I beg you all, learn from our journey and stop wasting time, energy and money trying all this crap then torturing yourself with guilt because it hasn’t cured you.

Much of the research into M.E. at the moment is concentrating on fatigue and the role of energy metabolism but here’s the thing – I am not fucking tired.  I don’t know how many times I need to say it.  M.E. has nothing to do with chronic fatigue.  Nothing.  NOTHING.

When you get the flu or a really bad cold you feel absolutely wiped and barely have the energy to get to the loo.  This doesn’t mean there is a fundamental problem with your body’s mitochondria or how it uses energy from food.  It means that, for reasons as yet unknown, when our immune system is in action fatigue is a by-product.  A secondary symptom to the main event.  And so, I am utterly convinced, will be the “fatigue” associated with M.E.

I say this with such conviction because I have lived with M.E. for nearly a quarter of a century.  It started with a tummy bug, ie an immune event.  It then really took hold after gastroenteritis, an immune event.  I became severely affected following travel vaccinations, another immune event.  I saw an almost overnight remission of all my symptoms following another vaccination and these days know I’m coming down with a bug because I feel freakin’ brilliant for the 48 hours preceding it.   None of which is affected by not eating carbs or sugar, or having oxygen therapy, or taking some supplement or other, or some drug or other, nor bugger all else.  My best friend is a clinically diagnosed Coeliac, who hasn’t eaten a speck of gluten in over a decade, yet is still sick with M.E.  Another friend can barely eat and lives on an almost exclusively liquid diet, yet still has M.E.  Food is not the answer, never has been and never will be.

M.E. is an immune disease.  End of discussion.  I don’t even think it’s an auto immune disease, but an acquired immune disease.  Something external usually a vaccination or virus (the type of which is irrelevant) triggers the immune system, inbetween turning on, doing its thing and turning back off again something unknown goes wrong, and M.E. is the result.  It’s the “something unknown” bit that’s the puzzle and needs to be the focus of research.

The fact there are currently no answers is a bitter pill to swallow.  So-and-so improved after not eating sugar for six months so it has to be the cure, only of course so-and-so didn’t actually have M.E. in the first place.  Someone else discovered they had some rare infection and were cured by treating said infection, in which case they didn’t have M.E. either.  When there is no diagnostic test people are mis-diagnosed all the time, especially when some Doctors think that everyone who is “fatigued” has M.E.  And this is compounded by the fact that, until last year, severely affected sufferers weren’t included in research studies because they were, ironically, too sick to get to the Hospitals where said research was taking place.  Thank God the likes of Ron Davies has changed that outrageous situation and we might finally be looking at M.E. patients and not CFS patients.

I’m not saying that people with M.E. never improve, though it is rare.  I’ve improved for no good reason I can find.  One friend improved slightly using low dose Naltrexone, while for others it had no effect or made them worse.  Jen Brea, director of Unrest, has improved a bit with her treatment, though is still wheelchair bound and struggles to talk for long periods.  But none of us are cured and most of my friends have seen no improvement over the decades at all, despite trying every ‘treatment’ known to mankind.

I know I’m kind’ve wasting my energy writing this post, because anyone with M.E. reading it thinks that they will be the one that is the exception to the rule.  They will find the cure that the millions of sufferers that have gone before them haven’t.  So I’ll wish them luck and say I’ll see them on the other side of their journey, still sick, financially poorer, even more exhausted but wiser and finally at a place of peace and acceptance.

 

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Types of Fatigue

Doctors talk about “fatigue” like it’s a single entity and it is listed as a symptom in dozens of diseases and conditions like we all are experiencing the same problem, when we most definitely are not.  It’s a bit like headaches.  You can get tension headaches, concussion headaches, hangover headaches, seizure headaches, migraines and hormone headaches to name but a few, each with different causes and characteristics and needing different treatments.  Yet for some reason fatigue is treated like it’s the same for everyone regardless of cause, when it actually differs widely and needs various management and coping strategies.

Fatigue is a symptom of 4 of my diseases and conditions (menopause isn’t a disease though it sodding well feels like one some days!) so I thought I’d have a go at explaining how it differs for me and how I manage each type.

M.E. Fatigue

The term “fatigue” is so inappropriate when trying to explain this M.E. related symptom that I hestitate to use it, but so far I haven’t been able to think of a better word so it will have to do.  M.E. fatigue is the easiest for me to recognize.  It is totally unlike the normal “tired” or “exhausted” that everyone feels and much more like the fatigue you get when you’re poorly.  My body feels poisoned and ill, a bit like the feeling you get just before you vomit.  That weak, clammy feeling where the blood drains from your face, you are green to the gills, your legs buckle from under you and you end up lying on the bathroom floor groaning, unable to move or think as the weakness and sickness consumes every ounce of your being.  Only it’s like that 24/7.  And it’s not a fatigue that you can push through, at least not for any length of time.  I just hit a brick wall and it is absolutely impossible to carry on.  If I try I either collapse, faint, have a seizure and/or end up puking.  Depending how severe your M.E. is, this brick wall can come about after walking to the shop and back, talking on the phone for 15 minutes, taking a shower or simply sitting upright to eat a meal.  The fatigue doesn’t just affect the muscles, it also affects the brain which feels like it’s permanently stuffed with cotton wool.  Any act of thinking, eg. writing a shopping list, reading a book or making a decision about what to eat for dinner, robs the brain of energy and makes it even more fuzzy to the point where it can be physically painful and thought becomes impossible.

It is not a fatigue which responds to rest.  You can sleep for 20 hours and wake still feeling utterly and absolutely wiped out.  I have felt completely wiped for over two decades and not for a single second of that time have I ever feel well, rested or energized, either mentally or physically.

The fact that M.E. was re-branded Chronic Fatigue Syndrome is an absolute travesty.  M.E. has nothing to do with fatigue, at least not the fatigue that healthy people recognize.  The word “malaise” is much more appropriate, though I still think we need to invent a word which describes the poisoned, weak, collapse which epitomizes M.E..  I even take issue with “post-exertional malaise” which makes it sound like you only get symptoms after activity, which definitely isn’t the case.  I have felt weak, poisoned and ill every second of the last 23 years.  Yes activity makes it worse, but the absence of activity doesn’t mean the absence of symptoms – if only!  When I see people online query if they have M.E. because they are chronically tired I want to scream.  If being fatigued was the only diagnostic criteria for having M.E. half the world’s population would have it.

The only way to manage the fatigue of M.E. is to lie down.  Sitting won’t cut it.  At the severe end of the spectrum you have to lie down every second of the day and at the more mild end of the spectrum you have to lie down for portions of the day, but if you can remain upright for the entire day I’d query whether you have M.E. at all.  Having “rested” you don’t feel recovered, you just feel like you’re not dying or about to pass out, which is a bonus.

Ehlers-Danlos Syndrome

The fatigue associated with my hEDS (and I can only speak for myself) is a totally different kettle of fish.  It’s more akin to normal, if exaggerated, fatigue.  Imagine you’ve just climbed to the top of Ben Nevis and back.  Everything is hurting and aching, your muscles feel strained and overworked, stiffness is setting in and you’re desperate to collapse into a warm bath or onto a soft couch.  That’s what my hEDS feels like, only every second of every day.  There is no ill feeling or feeling of weakness, seizure or collapse, and I can push through the fatigue if I really need to although it does get to a point where the pain is so bad I have to stop whatever I’m doing.

Rest does help and in particular the avoidance of activity.  It doesn’t make the pain, aching and stiffness go but it becomes less severe.

Some people with EDS complain of brain fog but this isn’t part of the diagnostic criteria.  As I already have brain fog from my M.E. I have no idea if I’d have this with EDS or not if I didn’t have M.E. too.  I do think that some people with EDS may also have M.E. and go undiagnosed and that some people have brain fog due to POTS or some other type of dysautonomia rather than EDS per se (POTS & dysautonomia are common secondary symptoms of both M.E. and EDS).

Managing this type of fatigue requires planning and pacing, including switching to different kinds of activities and not doing anything repetitive for long periods of time.  I find it the most simple to treat of all my conditions as it does respond to rest and careful pacing, making the fatigue easier to manage although obviously not cure.

Mast Cell Activation Disorder

Again I can only speak from my own experience but the only time I have fatigue associated with my MCAD is when I’ve had an anaphylactic event.  The fatigue which follows makes me very weak and drained and can sometimes make me sleepy while other times not.  I absolutely have to lie down, often for several hours, and it can be days or even weeks (depending on the severity of the anaphylaxis) before I return to some semblance of normality.

I don’t really get brain fatigue with MCAD.  After an anaphylactic event I feel totally spaced out and my brain feels kind’ve battered and bruised, but not foggy like with M.E.  It’s hard to tell to be honest, because having anaphylaxis completely buggers my M.E. up and causes a flare which can last for months, so then it becomes impossible to tell which symptom has been triggered by which disease.

The only way of managing this fatigue is to rest in bed until it passes.  Antihistamines seem to have zero effect.

Peri-Menopause

I am in year 6 of peri-menopause.  For the first 5 years I didn’t notice any significant fatigue but this year I’ve been poleaxed by it.  It came on out of the blue in the new year and literally overnight I felt like I’d been coshed over the head.  Having researched this online it is fairly common and the name given to this symptom of menopause is “crashing fatigue”.

It’s different again to the fatigue mentioned above and feels much more like I’ve been sedated.  My eyelids feel like cement and are permanently down to my kneecaps, my body feels relaxed and heavy and I just want to sleep, sleep and sleep some more.  However, having slept for 9 hours I wake feeling no better and could cheerfully go back to sleep only 2 hours after getting up.  And then again in the afternoon.  Having slept half the day away, however, I still can’t keep my eyes open past 9pm at night.

This fatigue definitely affects my brain not to mention my memory!  But it’s not so much foggy as sleepy and confused, a bit like I’ve been woken from a deep sleep at 3am.

I haven’t found anything which alleviates my menopause fatigue and can only hope it settles once I’ve gone through The Change and come out the other side.

Having written this blog post I’ve realized how difficult fatigue is to explain and how easily it can be misunderstood by healthy people who have only ever experienced normal tiredness.  I’ve never been asked by medical staff to explain my fatigue, how it feels or how I manage it – they just hear the F word and assume it’s akin to being tired all the time, when it’s anything but.  I’ve thought for a lonnnng time that we need a new word to explain the malaise-like weakness experienced by M.E. patients, so that it can be differentiated from other types of “chronic fatigue” and more importantly from normal fatigue, so if you have any suggestions let me know!

 

That darned F word

Arrrrgghhhhhhh!!!!!  I’m glad I’ve got that out of my system because the current trend of confusing “chronic fatigue” with M.E. (I’m not using the term ME/CFS because I don’t have CFS) makes me want to scream.

A man wrote a post on the M.E. Association’s Facebook page this week saying that for the last month he’d been getting up at 7am, going to the gym to lift weights, having a steam session, then going back in the gym to lift more weights and do some cardio and was feeling much better.  There was understandably outrage in the comments section.  For a start most people with M.E. struggle to surface out of bed before 10am and any kind of extreme heat, like you’d find in a sauna, would floor them.  Our muscles do not function correctly and lifting my toothbrush can be beyond me some days – lifting weights on a regular basis would be absolutely and utterly out of the question.   Whoever diagnosed this person with M.E. needs to be sacked.

Ehlers-Danlos syndrome can cause significant fatigue, but that doesn’t mean you also have M.E.  That’s because M.E. has nothing to do with being tired, and lots to do with being ill, following trivial activity.  And by trivial I don’t mean a session at the physio (I wish).  I mean having a shower or getting dressed.

When you get the flu (the proper flu, not man-flu or a cold) you lie in bed with every muscle aching and feeling like cement.  Your brain pounds with cotton-wool fog, light and sounds are too bright and too loud, your throat is swollen and sore and walking 10 steps to the bathroom is like tackling the north face of Everest, after which you collapse back into bed feeling like you’ve been battered by a hammer-wielding maniac.  That is what M.E. feels like………..every second, of every day, of every week, of every month, of every year.  If you can call it ‘fatigue’ at all it’s an immune-induced ‘fatigue’ that is crushing and stops you doing the normal tasks of daily living every day.  It is not tiredness after activity, it’s feeling flu-like with associated all-emcompassing heavy exhaustion beyond most people’s understanding of ‘tired’.  And, more importantly, it is not relieved by rest.  So, after I’ve done something I shouldn’t – like a little bit of gardening – I wake the next day feeling poleaxed.  I spend the day resting in a foggy, poisoned stupor and wake the next day even more poisoned, exhausted, achy and foggy than I did the day before.  Each person with M.E. is different, but for me my symptoms peak 48 hours after the activity and finally abate after about 4 days (by which time I’ve done some other task of daily living and the cycle starts all over again).  And many forget that mental over-activity brings on the same symptoms.  If I’m on the computer for too long I start to get a sore throat, feel dizzy, nauseous and generally feel fluey and unwell.

The cardinal feature of M.E., I am sick of saying, is “post-exertional MALAISE”.  I’m not even sure ‘fatigue’ is mentioned in most of the diagnostic criteria.

The problem arose when M.E. was re-branded as Chronic Fatigue Syndrome.  This became confused with Chronic Fatigue which is a symptom suffered by millions of people with a hundred different diseases from insomnia to cancer, and the general population on a Friday afternoon!  IMHO, ‘hypermobility’, ‘hypermobility spectrum disorder’ and ‘Ehlers-Danlos Syndrome’ suffer in a similar way.  People with generalized hypermobility query whether they have HSD or EDS, people with HSD query whether they have EDS (some do, just like some people with CFS have M.E., but then equally some don’t) and EDS becomes a diagnosis that few qualify for even if they have it, just like true M.E.  It’s all such a bloody mess.

“Who cares?” I hear some of you say, “it doesn’t matter what you’re diagnosed with as long as you are diagnosed and get treatment”.  But actually, it matters a great deal and here is why:

  • If you are diagnosed with M.E. when your fatigue is down to another reason, such as Lyme or Lupus, you won’t receive the treatment you need for the actual disease you have.  There is no treatment for M.E., so other than being offered some CBT to adjust to living with a chronic illness you will be left to rot.  That is not good if you have fatigue which could be treated.
  • If, like me, you are unlucky enough to have both M.E and hEDS you sadly will not be able to tolerate the physiotherapy exercises needed to treat your hEDS.  If I hadn’t had my M.E. diagnosis I would have pushed myself to do the hydro and physio recommended for my hEDS and made myself sick as a dog – possibly even causing a permanent relapse from which I never recovered.  If, however, you have simple ‘chronic fatigue’ doing the recommended physio for hEDS might help – at the very least it wouldn’t lead to a deterioration in the condition.  Being correctly diagnosed is vitally important.
  • Any research carried out on an incorrectly diagnosed population is pointless.  If research on M.E. includes people who actually have simple ‘chronic fatigue’ and they get better by lifting weights, then all people with M.E. will be deemed to be ‘curable’ by lifting weights, when actually lifting weights would be hugely damaging.  Similarly with hEDS, if under the new criteria someone like me is classed as having HSD when I actually do have hEDS I will skew any research into HSD because I don’t in fact have it.  And research into hEDS will only include the most severely affected which skews research into hEDS too.  I didn’t start dislocating my joints until I was in my forties, so I wouldn’t have qualified for a hEDS diagnosis when I was younger despite having non-joint-related symptoms from childhood.

There is an alarming trend in the M.E. world for researchers to be studying ‘fatigue’ and energy production when the fatigue of M.E. is a by-product of immune dysfunction, just like it is when you get the flu.  The fatigue experienced when you have flu is just a symptom of the disease, not the cause.  It all feels like a huge waste of time and resources and will lead to yet more blind alleys (remember I’ve been following research into M.E. for 20 years now).

The bottom line is we urgently and desperately need a test to distinguish M.E. from CFS and chronic fatigue, just as we urgently and desperately need a test to distinguish hEDs from HSD and generalized hypermobility.  I know clinicians have tried their best to differentiate these diseases using symptoms as a guide but it doesn’t work, particularly in hEDS where symptoms can appear or increase as you age.

And speaking of age, there has not been one single study to my knowledge on older people with M.E. or older people with hEDS.  Research always tends to focus on children and young adults for reasons I can’t work out.  We desperately need studies on the effects of long-term M.E. on the over 50s, and we absolutely need this age group studied in hEDS as it is not uncommon for symptoms to suddenly appear or increase when you hit forty particularly in women. Even a simple survey on the over 40s undertaken by the EDS charities would be better than nothing.

Whichever bright spark decided 20 years ago to rebrand M.E. as CFS has a lot to answer for and if I could get my hands on them I wouldn’t be responsible for my actions.  And in 20 years time I may feel the same way about the current clinicians who rebranded hEDS and HSD!