Up Front by Emma Hart

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Up Front: Something Chronic

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  • Sacha,

    Ben, you're meant to make sure they have water in them first :)

    Oh, and drop me a line

    Ak • Since May 2008 • 19743 posts Report Reply

  • Sacha,

    I'm not disagreeing there are health conditions where women are more prevalent. They're certainly more prominent in disability among older folk (though boys outnumber girls).

    However, North Health RHA did an interesting study of men's health in the mid 1990s. Out of the 70 or so common conditions they had stats for, men were worse off than women in nearly all of them.

    I was unsurprised when that didn't translate into targetted action of any sort, despite the well known tendency of us blokes to avoid looking after ourselves until the damage has been done (and I note that also applies to our clothes).

    Ak • Since May 2008 • 19743 posts Report Reply

  • Peter Ashby,

    Pregnancy cured my wife's ME (what it was diagnosed as), I think it was because pregnancy is a gradual, unavoidable fitness program. Having been both intensively fit and with a chronic fatigue syndrome (turned out to be chronic tonsilitis and fixed surgically) I know what both sides feel like.

    I also have Gilbert's syndrome where my body breaks down haemoglobin very slowly so I get jaundiced easily. If I push too hard I get bone tired, and the whites of my eyes will be yellow. I am actually on cloud 9 at the moment because for the first time in absolutely aeons I can see NO yellow in my eyes (why I have no idea).

    We do know that the more you sleep, the more you want to sleep and when you are completely unfit and sedentary (been there) doing anything seems like such an effort. I am fortunate in that I know both that there is a cure and that my body is capable of it, if I can be bothered.

    When training you have to learn to stress and then recover. If you stress too hard, or you leave no time to recover, you break down. Often by means of a minor viral infection or a strep throat. As someone who is prone to easily pushing it too hard I know this well.

    I think the term 'yuppy 'flu' is not a million miles away from the truth for many with ME. It starts with feeling tired, physically, emotionally or both which induces rest, when what is going on is that you are tired because you are not fit enough for your life. In that state every day you are putting in a massive effort at the peak of your ability and you never get a rest day. It is understandable to react by trying to remove the tiredness but that has the effect of reducing fitness even more.

    It is very hard, physically and emotionally to exercise from positions like that. After my tonsillectomy I got fit again by walking to uni, instead of taking my motorbike. First one day followed by two on the bike and then building up gradually until I could walk every day. Then I began to run again, slowly and not very far and not often.

    Emma your description screams 'more exercise needed' to me. I am not doing so because I think you are lazy, but because it will be good for you. Yes, when you exercise you will then need a day or three to rest, that is good, but only if afterwards you exercise again.

    I think that women are more prone to this because they devote themselves to caring roles and convince themselves that their roles are vital, so they push themselves too far. It can be hard to find the time and support to exercise from your low base, but you will never get better unless you try. Modern life is such that we have to make an effort to exercise and that often means being selfish about a time each day or every other day that is for us to exercise. We do this so that we have more energy for others.

    It may seem crazy for me to talk about having energy as a result of exercise, but it is real and there are good biochemical and physiological mechanisms behind it. In my experience it takes about 2 weeks of exercising at least every third day before you begin to feel it in daily life. Those first two weeks, and you may take longer, are HARD which is why a lot of people, especially as the weather warms, or the footy season approaches make resolutions and then fail. For a long time when the kids were young I repeatedly tried to get a running program going and repeatedly failed, because I didn't have time or the kids brought a lurgy home. I kicked it for a while by running from work in my lunch hour. That died when I had to go have an operation my hand.

    I am now running as much as I can with only occasional hiatuses with injury and swine 'flu. I dread being unfit again.

    Dundee, Scotland • Since May 2007 • 425 posts Report Reply

  • Ngaire BookieMonster,

    With all due respect, Chronic Fatigue Syndrome is not being unfit.

    And if you had chronic tonsilitis that was cured by surgery you didn't have "a chronic fatigue syndrome" you had chronic tonsilitis.

    At the foot of Mt Te Aroh… • Since Nov 2009 • 174 posts Report Reply

  • Islander,

    Peter, I used to walk 4-6 k a day.
    Until osteoarthritis-
    walking (my preferred gait)does not now help my hip or knees - and I love walking! It excoricates joints, has rendered me unable to continue
    (on a flat road for goodness' sake!), and more than 5 times, stopped me from getting out of bed-
    your own body can stop you being fit...

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • giovanni tiso,

    Pregnancy cured my wife's ME (what it was diagnosed as), I think it was because pregnancy is a gradual, unavoidable fitness program.

    My head hitting the desk there was a valuable isotonic exercise, for which I thank you.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • Sacha,

    Emma your description screams 'more exercise needed' to me.

    Peter, don't be such a patronising twat. And that's about as much respect as you deserve in this instance.

    Ak • Since May 2008 • 19743 posts Report Reply

  • Emma Hart,

    Emma your description screams 'more exercise needed' to me. I am not doing so because I think you are lazy, but because it will be good for you. Yes, when you exercise you will then need a day or three to rest, that is good, but only if afterwards you exercise again.

    Oh gee, Peter, why didn't I or any of my medical professionals think of that?

    I was put on a Graduated Exercise Program. I tried it three times: every single time, I relapsed and ended up worse off than I had been before I started. In a British study, GEP had a lower success rate for treating CFS than a placebo. CFS sufferers have a demonstrable abnormal reaction to exercise. Did you seriously not read anything when your wife was diagnosed?

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Leigh Russell,

    Thanks for sharing, Emma! A regular contributor alerted me to this discussion. I've been unwell with a chronic fatigue condition for about ten years now, and only recently had it diagnosed as M.E. I still feel like a fraud saying this as I've never believed this to be the case. When I've said this sort of thing to my doctor he simply repeats the four identifying symptoms, all of which I have: sleep problems, concentration and memory problems, HEADACHES, and chronic fatigue. Oh yes, and depression. Lovely - who wouldn't be! There is a possibility that he is right of course. But I had always identified it as arising from a combination of intense and prolonged distress combined with severe burnout. It's possible that this made me susceptible to developing M.E....

    I'm surprised that no one has mentioned burnout. Burnout is a difficult subject to talk about given that doctors don't consider it to be a genuine medical condition, although any internet search of the subject brings up a huge number of results of doctors complaining about the high incidence of this problem within their own profession, a point I've never understood. What I've found most difficult in the duration of my illness has been lack of credibility (including my own), and the very marked lack of proper help, especially from those whose work it is to provide it. As a result I've written a resource kit for others who may be wandering in this trackless land which contains all the information I now have which I wish I had had then. There is an article about identifying M.E and another relating to Burnout, and many more. For those who may be interested I give the address here: http://rushleigh---the-wasteland-chronicle.blogspot.com/

    In a companion Rushleigh blog I share sensible, thrifty ways of managing on less, the economy of which is often forced upon those of us who are deprived of the ability of earning anything approximating the average wage.

    It's a very tough space, and I wish all of you strength, fortitude and good fortune. Thanks to Public Address for providing the forum for this discussion.

    Otago • Since Jul 2010 • 208 posts Report Reply

  • Russell Brown,

    Emma your description screams 'more exercise needed' to me. I am not doing so because I think you are lazy, but because it will be good for you.

    Peter, this is a place for people to tell their stories, and I don't mind you telliing your personal fitness story again. But that was unforgivably patronising, even by your standards.

    Auckland • Since Nov 2006 • 22849 posts Report Reply

  • Jeremy Eade,

    We are entering a century of naming the vast amount of different stress,fatigue,and anxiety conditions that run around our heaving collective.

    Before the naming we had one description,sometimes to describe even our own behaviour."Weird."

    auckland • Since Mar 2008 • 1112 posts Report Reply

  • George Darroch,

    But that was unforgivably patronising, even by your standards.

    Thank you Russell.

    WLG • Since Nov 2006 • 2264 posts Report Reply

  • dyan campbell,

    Peter, you've never seen Emma, who is enviably fit.

    Bart, it's not the CF that causes brain injury, but that brain injury is associated with CF.

    Ventromedial prefrontal cortex modulates fatigue after penetrating traumatic brain injury

    Background: Fatigue is a common and disabling symptom in neurologic disorders including traumatic penetrating brain injury (PBI). Despite fatigue's prevalence and impact on quality of life, its pathophysiology is not understood. Studies on effort perception in healthy subjects, animal behavioral paradigms, and recent evidence in different clinical populations suggest that ventromedial prefrontal cortex could play a significant role in fatigue pathophysiology in neurologic conditions.

    Methods: We enrolled 97 PBI patients and 37 control subjects drawn from the Vietnam Head Injury Study registry. Fatigue was assessed with a self-report questionnaire and a clinician-rated instrument; lesion location and volume were evaluated on CT scans. PBI patients were divided in 3 groups according to lesion location: a nonfrontal lesion group, a ventromedial prefrontal cortex lesion (vmPFC) group, and a dorso/lateral prefrontal cortex (d/lPFC) group. Fatigue scores were compared among the 3 PBI groups and the healthy controls.

    Results: Individuals with vmPFC lesions were significantly more fatigued than individuals with d/lPFC lesions, individuals with nonfrontal lesions, and healthy controls, while these 3 latter groups were equally fatigued. VmPFC volume was correlated with fatigue scores, showing that the larger the lesion volume, the higher the fatigue scores.

    Conclusions: We demonstrated that ventromedial prefrontal cortex lesion (vmPFC) plays a critical role in penetrating brain injury–related fatigue, providing a rationale to link fatigue to different vmPFC functions such as effort and reward perception. The identification of the anatomic and cognitive basis of fatigue can contribute to developing pathophysiology-based treatments for this disabling symptom.

    It's the HPA axis folks.

    You can't really separate the neurobiology from the symptoms, and whether a disease is psychosomatic or the result of a head trauma, it's still a set of symptoms that need to be managed.

    If you experience enough stress you will gain weight on your abdomen, where it will turn into a kind of evil pancreas. It's a psychosomatic manifestation of stress - with an attendant plunge in health (and rise in inflammatory markers). The abdominal fat is real, the effects on your health are real, but the cause can be entirely psychological. Feel enough stress, and you will have an entirely different metabolism

    In China, where actual clinical depression is rare, the rate of somatic disorders) as seen in children in the west under 5 - at which age they usually stop manifesting somatic ailments and manifest anxiety or depression, just like adults) - in China somatic disorders remain the big indicator of stress.

    While "psychosomatic" may have unsympathetic overtones, it is just as much a rash, pain, vomiting, fatigue or headaches as it would be if it were a virus or a genetic abnormality.

    I got the opposite of CF when I first moved here but it was pretty awful in its own way. Couldn't eat, felt sick at the smell of food, couldn't sleep, it was pretty horrible it its own way.

    auckland • Since Dec 2006 • 595 posts Report Reply

  • Jeremy Eade,

    I use to work around call centres. Stress City. 60 -70 % smokers.
    Nicotine - soothing the workforce.We are running lives that are unachievable for the average chimp, stress is basically a shrinking of thinking.

    auckland • Since Mar 2008 • 1112 posts Report Reply

  • Jeremy Eade,

    Peter's generally cool if not over eagar in this instance. Very few people get the chance to exercise our complicated body , most of us don't know what to do and/or don't have the time, and it takes time.

    Most of us are appallingly unfit but that's another topic. Peter?

    auckland • Since Mar 2008 • 1112 posts Report Reply

  • Emma Hart,

    The really distressing thing about the 'oh, you need to sleep less and exercise more' magic solution, which every sufferer here will have heard from co-workers, acquaintances, strangers on the street, is that it's pretty much the opposite of what we've had to learn to do, and the hard way.

    We have to learn to listen to our bodies. And we have to stop, straight away, as soon as we start getting tired, even if that means leaving a job half-done. It makes walking, my favourite form of exercise, problematic because if I walk ten minutes out and suddenly become fatigued, I still have to walk ten minutes back.

    That's not easy to accept, that you're not the boss of your own body any more. And at the peak of a good day, there was still stuff left undone that needed to be done: I had a small baby and a toddler, after all. There's only so much arse-sitting-on that can be done under those circumstances.

    Stress is certainly a factor. That's why it was called Yuppie Flu, because in the 80s it was hitting high-energy, high-activity, high-stress people - its traditional association with the Type A personality.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Lilith __,

    It still surprises me that people blame stress for CFS. Of course stress is never good for anyone, that's what stress means. But I think we have to stop blaming stress, (or other psychological factors, Dyan) just because we don't know the pathology for what's gone wrong.

    Remember when peptic ulcers were caused by stress, and patients with ulcers were told not to worry so much and they'd get better? And then those Aussie researchers found that the ulcers are caused by a particularly nasty bacterium, and that antibiotics fix them? Those researchers won the Nobel Prize.

    Going back in time, TB was thought to be caused by a "consumptive personality". And then the actual cause was found.

    Until we know what causes CFS, I think it's smarter to say we just don't know.

    Dunedin • Since Jul 2010 • 3894 posts Report Reply

  • Lilith __,

    And Dyan, I can believe that certain types of brain injury cause fatigue, but it doesn't follow that all fatigue is caused by brain injury.

    There is the possibility that CFS is caused by some neurological damage as yet unknown, but to me it's down the list of likely culprits. It can't explain the immune dysfunction, for one thing.

    Dunedin • Since Jul 2010 • 3894 posts Report Reply

  • Rob Hosking,

    A few points:

    Some research by - I think - Dr Ros Vallings a few years ago on women with CFS who got pregnant had a rough 40-% got better, 40% no change and 20% got worse.

    I've seen other research which showed virtually all sufferers had had some major viral infection in the previous 12 months. Glandular fever was the most common single condition - 54% is the figure which has stayed in my memory, with a range of other viruses being scattered around the remainder.

    Some very recent research appeared to have isolated a specific virus but the last thing I heard about that was that this was a long way from being conclusive.

    One of the most common behavioural factors I've noticed - and I'm not suggesting this is in any way definitive - is that most people I know with the condition have not been listening to their bodies. This is across a range of behaviours - compulsive exercisers, yuppies, or junk food junkies.

    I've had a bit of experience with CFS because I got it at Uni a year after having quite a bad bout of glandular fever.

    Had it for a bit over three years and the next four years or so were more than a little sub-optimal.

    I was lucky in some ways because I didn't have the fibromyalgia a lot of people get and also, obviously, because I managed to recover.

    I've known a few other blokes with the condition - mostly trampers, funnily enough but that may just reflect the people I know. But yes, I certainly know more women with the condition than men.

    Including the woman I'm married to. Claudia came down with it not long after we started going out together although - as with most people - she had a year or two of other diagnoses before they settled on CFS.

    Quite bad fybromyalgia, too. She had to stop working and sell her business.

    We decided to try for a kid because, firslty, we really wanted kids, and secondly we looked at the odds I cited from the research above and thought we'd take our chances.

    Well, she didn't get better, but at least she didn't get worse. It was a troubled pregnancy and our daughter is special needs (autism and global developmental delay).

    I suppose we may know one day if her condition is anything to do with having both parents having suffered CFS although for myself I'd rather not know. Not a lot we can do about it now.

    Personally I'm kind of glad I had CFS because I know what Claudia is going through.

    There is a whole heap of crap associated with this condition, as Emma and others have so eloquently testified here. And as I say, I'm one of the lucky ones.

    South Roseneath • Since Nov 2006 • 830 posts Report Reply

  • dyan campbell,

    It still surprises me that people blame stress for CFS. Of course stress is never good for anyone, that's what stress means. But I think we have to stop blaming stress, (or other psychological factors, Dyan) just because we don't know the pathology for what's gone wrong.

    But stress isn't a psychological factor any more than it is a physical factor. In childhood "failure to thrive" is a very real and life threatening condition. Is it psychological or physical? A mother in labour will stop being in labour (any mammal species here, not just us) if you stress her sufficiently. Flood those receptors with cortisol and what do you get? Well, no labour, that's what. You can't draw a line between physical and psychological.

    Psychosomatic does not mean that the illness does not exist. It means the illness is actually manifesting there, in your body.

    By "stress" I mean a specific, well studied pathway called the HPA axis (hypothalamus, pituitary, adrenals) - it has its own, very damaging and specific pathology.

    Remember when peptic ulcers were caused by stress, and patients with ulcers were told not to worry so much and they'd get better?

    WOW! Boy, do I remember that! Oh. My. God.

    I have been hit by a car - trapped under it and burned by something hot under there - leaving me with bones exposed in 3 places, burned and with a head injury. I have had 3 surgeries the repair the damage since - and not one bit of that (including a knee reconstruction) could begin to touch the pain from a bleeding ulcer.

    I had a very bad duodenal ulcer in my first year of university - 1980-81 which in those days was not only years away from being linked with any specific pathogen, but was treated in some of the worst ways imaginable. They told me to drink milk! Full of protein!

    The ancient Romans (and Chinese) had better advice: between meals drink water with few teaspoons of lemon juice. The milk makes the stomach secrete the protein digesting enzyme pepsinase, which causes the stomach to digest the parts of the stomach that are ulcerated. The latter causes both stomach acid and digestive enzyme pre-cursors to slow down ther rate of production, slowing the stomach's ability to digest its unprotected (ulcerated) sites.

    I was lucky enough to have the first wave of histidine repressors (Tagamet) combined with a hippy-dippy GP who also advised me to eat yoghurt, barley, blueberries and at least 1gm vitamin C a day. But in hindsight the fact that my boyfriend had a duodenal ulcer just before me, well, hindsight is 20:20.

    And then those Aussie researchers found that the ulcers are caused by a particularly nasty bacterium, and that antibiotics fix them? Those researchers won the Nobel Prize.

    Much deserved, and I gather at least one of them infected himself to prove his theory. Impressive. Crazy perhaps, but impressive.

    Until we know what causes CFS, I think it's smarter to say we just don't know.

    The neurobiology of the disorder is becoming apparent - and through this understanding of how CFS can result from either head trauma or stroke (any kind of brain injury) they are starting to understand how they might better treat all forms of CFS.

    There is a new model for understanding of pain emerging - from the world of neurobiology - and pain is literally in your head. They have known this for a long time, and few people could doubt the real nature of phantom limb pain, but is only now that the understanding of pain as being "all in your head" is really beginning to have some value in the treatment of pain. Chronic pain, and possibly chonic fatigue are beginning to look like equivalents of phantom limb pain.

    The symptoms are very real, very debilitating. Bart, you might not find a pathogen to blame for CF but they also haven't found one for lupus, MS or rheumatoid arthritis. This doesn't mean they can't accompany a huge cytokine mess in your body. All of these illnesses are made massively worse by stress, just by feeling emotions.

    You can have a searing pain in a limb, and you can have that with no wound and indeed, no limb. It doesn't mean the pain isn't real, but it does mean that the messages in the brain saying "PAIN!" are not useful in that context.

    auckland • Since Dec 2006 • 595 posts Report Reply

  • giovanni tiso,

    It's another one of those threads of much learning for some of us. Thanks to everyone who's sharing their experience and knowledge here.

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • dyan campbell,

    Neurobiology of Chronic Pain (relevant to those who experience chronic fatigue too).

    Islander! Greetings - I forgot to reply before about periodontal health and the effect on general health. I wrote an article about this subject for the popular press a few years ago (Fitness Life) but it is a fascinating and enormously relevant area. Low level gingival infection (present in almost all adults, unless they are undergoing regular, ongoing hygiene treatment) has an insidious effect on general health Periodontal Disease and Diabetes

    It's associated with everything from miscarriage to atherosclerosis. From respiratory disease to MS, rheumatoid arthritis or gout. To an an astonishing number of things, really.

    I was lucky enough to be born into a family of dental obsessives. We were given dental mirrors, floss, toothbrushes and disclosure tablets in Christmas stockings, which is pretty extreme, looking back on it.

    But despite very shiny teeth, the ability to chew icecubes to snow, never having missed flossing my teeth since I was about 5, as well as extremely regular dental attention, by my 40s I was having periodontal treatment for the onset of gum disease. Great teeth do not necessarily mean great gums.

    Actually just about everyone has gum disease by 15 or 16 years old, and by their 40s it begins to take its toll on your general state of health.

    I now spend literally 40 minutes a day cleaning my teeth and I am beginning to worry even if it extends my life or improves my quality of life I'm going to want that time back on my deathbed.

    auckland • Since Dec 2006 • 595 posts Report Reply

  • Lilith __,

    The neurobiology of the disorder is becoming apparent - and through this understanding of how CFS can result from either head trauma or stroke (any kind of brain injury) they are starting to understand how they might better treat all forms of CFS.

    Dyan, do you have some references for that? I know the HPA-axis has been implicated by various researchers at various times, but HPA tests come out perfectly normal for many of us.

    As I said, I'm not doubting that brain traumas can cause serious fatigue, but I can't believe that most cases of CFS can be traced to such a source. How can such a theory explain the role of viral illness in the onset of CFS? True, not everybody with CFS has that pattern, but most of us do.

    MS, lupus, and rheumatoid arthritis are auto-immune diseases. So there's no pathogen involved. Although of course what triggers these illnesses is still unknown.

    And regarding stress: the course of my illness has been of the relapsing/remitting type, and in my periods of remission I've dealt with quite big amounts of life-stress without relapsing, and I've sometimes relapsed at times when I had almost no stress at all. Yes, sometimes I can look back and think, "I was doing too much", but just as often I can't explain why my health deteriorates when it does. Or why it improves when it does.

    Dunedin • Since Jul 2010 • 3894 posts Report Reply

  • Lilith __,

    In childhood "failure to thrive" is a very real and life threatening condition.

    And, sorry to go on, but I know of one young boy who "failed to thrive" and his parents thought he just wasn't very strong, and made allowances for that. In his teens he had a heart attack and when tested was found to have a congenital heart defect which was corrected with surgery, after which he was much better.

    I'm very inclined to treat unexplained illness as unexplained illness. There's so much we don't know.

    Dunedin • Since Jul 2010 • 3894 posts Report Reply

  • Danielle,

    Most surprising thing in this thread so far:

    I now spend literally 40 minutes a day cleaning my teeth

    Least surprising thing in this thread so far:

    Emma your description screams 'more exercise needed' to me.

    Do people even say 'change the record' any more? (What I find hilarious is that even as a person without a chronic illness, these little homilies have the absolute opposite effect on me: when Peter turns up in a thread my ass actually feels *compelled* to stay on the couch watching TV for much longer than it would have otherwise. Plus there's my whole 'wanting to shoot heroin in my eyeball' response, which is practically Pavlovian, at this point.)

    pregnancy is a gradual, unavoidable fitness program

    That assertion makes me hate the entire experience retrospectively even more than I already did. Heh.

    Charo World. Cuchi-cuchi!… • Since Nov 2006 • 3828 posts Report Reply

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