Up Front by Emma Hart

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Up Front: Something Chronic

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  • Rob Stowell,

    Thanks to Emma et al- this is a very affirming discussion.
    WRT males: I can't report anything like the chronic illness you describe- my experiences have been relatively mild, and manageable.
    But yes: after being told I'd had glandular fever (I didn't ever notice it in itself) I started to get some symptoms: heaviness in the legs after a very short uphill walk; some night sweating; waking with a headache after 'over-doing it'- which might be stress, staying up late, or even very mild drinking.
    It's quite manageable, mostly. But on those days- headache, lassitude heaviness in the muscles- it's very hard to 'get going'.
    So all the advice and coping mechanisms people describe are fascinating and very welcome. I've never talked to a doctor about it- it IS hard to get others to sympathise. I think I've recognised it in others- close family- but it's hard to explain, or get them to take it seriously, too.
    So thanks, everyone- for the knowledge and kindness. Both priceless.

    Whakaraupo • Since Nov 2006 • 2110 posts Report Reply

  • Mellopuffy,

    @Lilith - i'm pretty sure that there's a fair bit of research being done here at Otago on Co-enzyme Q10 as i recall attending a lecture on it a few years ago ... in fact, i've just popped onto the Otago website and Professor Robin Smith of the Chemistry department is who gave the lecture.

    Dunedin, NZ • Since Feb 2007 • 63 posts Report Reply

  • Lilith __,

    @Mellopuffy - Yay for that, I'm glad to hear it! If there's research showing it's helpful, one day it might be subsidised.

    Regarding Vitamin-D deficiency in CFS patients, seems to me it's as likely caused by malabsorbtion as lack of sun. (if our other bodily systems aren't working too well, why should that be?) But there is a simple fix in taking supplements, which are available on prescription at almost no cost if you have a deficiency.

    And BTW, I don't know about you folks up in Te Ika-a-Māui, but down here it's much too cold to expose any skin in the winter! And even if we do, the low angle of the sun's rays means we don't get much benefit anyhow. A lot of people in the general population are deficient. There's more info here on Stuff and here in the Herald.

    Regarding the use of anti-inflammatories by CFS patients:
    in fact the majority of us have an unusually low ESR reading (elevated ESR is a marker for inflammation in the body, which can indicate acute infection, among other things), and rather than running fevers we tend to have normal to subnormal body temperature. So anti-inflammatories are unlikely to help.

    It's a moot point whether CFS patients suffer from a lingering chronic infection, which the immune system never quite deals to, or whether our immune systems are staging constant battles where there is in fact no enemy.
    There was a hopeful BBC article a while back about research into damaged gene expression in white blood cells, in London, but I don't know if they've made any progress since. Their theory is that in cases of CFS a viral infection has damaged the DNA so that the white blood cells aren't made right. If they are correct, this would lead not only to a verifiable lab-test but also to potential treatments for the cause of the illness, not just the symptoms.

    Dunedin • Since Jul 2010 • 3895 posts Report Reply

  • recordari,

    I have been fortunate not to suffer from the fatigue issues described above, and you are all incredibly brave.

    Chronic pain (which I have in my jaw joint (TMJ) from osteo-arthritis, and lower back from scoliosis) is often hard to live with too, and you don't always realise the effect it has on you, or those around you, until you have a pain free day. They seem a bit few and far between at times.

    Trying to do exercise, and altering eating/chewing, breathing and talking habits has helped both, but it's still there 90% of the time.

    After waiting months to see a 'pain specialist' through the hospital, I gave up and went private. Expensive business, but if someone offered me a guaranteed pain-free future, I would gladly pay a king's ransom.

    All the best Emma, and everyone else.

    Jack

    AUCKLAND • Since Dec 2009 • 2607 posts Report Reply

  • Sue,

    Yes thank you so much emma and everyone else who is sharing. I gave up telling people i had CFS as all they'd want to do is tell me how to fix it or that they got tired too. Also i became scared of groups or reading more books as like Julie i felt i was developing phantom symptoms.

    the one think is true across the board for CFS the treatments that work are as varied as the symptoms people experience the most.

    Also so many doctors get confused between what is the situational depression that CFS causes and depression that is chemical. I have both but that's actually really unusual.

    Wellington • Since Nov 2006 • 527 posts Report Reply

  • Lilith __,

    Bart: You make a lot of sound points, but I have to take issue with this:

    Who are, so far here, exclusively female. Is there some science on that?

    I doubt it. As Emma said it's more likely to be a reporting bias. I know a guy who got CFS after a dose of glandular fever. His experience was very similar to Emma's. It's likely that men for whatever reason don't report and self medicate (alcohol) or just carry on working when they feel like crap because they believe there is no other choice.

    There may be reporting bias, but it's also possible that women are more susceptible than men, perhaps due to hormonal factors.

    Self-medication with alcohol makes the majority of CFS patients much worse, not better. There's even research to back that up.

    As far as men carrying on working when they feel like crap...if they can continue fulltime work, they don't have CFS. I tried to carry on working when I was having a relapse, and I was unable to stand up for more than a few seconds at a time and kept vomiting. CFS is a severe illness, not just an inconvenience.


    Emma:

    And the emails and messages keep coming in from people who just want to talk in private.

    I begin to wonder if everybody on PAS has CFS, at this rate :-)


    Russell, Jackie, Megan, Jack, et al: arohanui for your kindness and compassion. Many people are so freaked out by chronic illness that they forget to be kind. For a cough or cold or stomach bug, everyone is sympathetic and makes a fuss of you; for serious chronic illness, a lot of people don't want to even hear about it.

    Dunedin • Since Jul 2010 • 3895 posts Report Reply

  • Bart Janssen,

    It's a moot point

    Yes and no. From the point of view of the patient it's completely moot. The aim is to deal with the symptoms until you can lead a decent life and with luck someday discover that you feel normal (whatever normal is). If that means vitamin D supplements that's great, and I didn't mean to imply you should "just get some sunshine" but rather that the deficiency is a result of the CFS not a cause but that treating the deficiency can make the other stuff more bearable.

    That's always the issue with secondary effects. It's worth treating them because it can make the person feel better but you aren't changing the underlying problem. And sometimes treating the secondary effects allows the body to heal the underlying problem.

    But from the point of view of getting a treatment that can cure CFS, then knowing exactly what the is the cause is far from moot. If it's an untargeted immune system then maybe suppressing that system might help, but that has huge risks. If it's an underlying infection then identifying the virus or bacteria and targeting that is important. But so long as we don't really know, then we are left treating symptoms, which can help, but since symptoms vary so much you're left with many people feeling like crap, which really sucks.

    as all they'd want to do is tell me how to fix it

    Sorry, it's fault/character trait. If it's any consolation I think part of that need to "fix it" is fear. Because CFS seems so damn random and all you really can do is offer help and support it is kind of scary. Not half as scary as it is for those suffering of course.

    Auckland • Since Nov 2006 • 4461 posts Report Reply

  • Emma Hart,

    I begin to wonder if everybody on PAS has CFS, at this rate :-)

    I think you'll find that about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Bart Janssen,

    As far as men carrying on working when they feel like crap...if they can continue fulltime work, they don't have CFS. I tried to carry on working when I was having a relapse, and I was unable to stand up for more than a few seconds at a time and kept vomiting. CFS is a severe illness, not just an inconvenience.

    Yeah fair cop, sorry. I realised after I wrote that that it could read as if I thought men could work through it. Or that CFS was something you could work through. I know that's not true. I didn't mean to imply that they'd be any use at work but that they might be inclined to believe that turning up and being good for nothing at work was the right thing to do. Argh I can see myself digging a hole here because I know women who will do that as well.

    But men are notorious for being really bad at reporting chronic problems. Despite the "man flu" stereotype. So I'd be really cautious about there being a huge difference between CFS in men and women without some good stats. Especially for the CFS cases that are not as severe as you describe, and I'd argue that there are less severe CFS cases that are still CFS.

    You're right, there could be a hormonal component that make women more susceptible. But until we really understand the cause we won't know.

    Self-medication with alcohol makes the majority of CFS patients much worse, not better. There's even research to back that up.

    Yup and what you get is a drunk very ill man likely to be misdiagnosed at that point. I didn't mean to suggest it was effective but more that it might lead to misdiagnosis and hence to a reporting bias for CFS.

    Auckland • Since Nov 2006 • 4461 posts Report Reply

  • Jackie Clark,

    I begin to wonder if everybody on PAS has CFS, at this rate :-)

    I think you'll find that about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.

    And having met a lot of these good folks, Lilith, the lady ain't far off.

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report Reply

  • Sue,

    @bart i should say the fixing with no thinking, like oh maybe you are sleeping too much or Ii'm sure a bit of exercise will fix it or have you tried diet X.

    here is the first place i've found people posting thoughtful and compassionate and wonderful posts

    Wellington • Since Nov 2006 • 527 posts Report Reply

  • Isabel Hitchings,

    So it sounds like glandular fever is some sort of universal shit-trigger then. I'm starting to feel grateful that when I got it I was only left with depression and was only sick for a bit over a year.

    Respect and empathy to those dealing with long-term illness and its effects.

    Christchurch • Since Jul 2007 • 719 posts Report Reply

  • Bart Janssen,

    I think you'll find that about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.

    Hah! right handed and no tatoos, I sleep normally ... now that I'm no longer depressed ... does writing journal papers count ... oh shit Doctor of Philosophy ... crap!

    .
    .
    .
    checks carefully ... yup definitely no tatoos!

    Auckland • Since Nov 2006 • 4461 posts Report Reply

  • giovanni tiso,

    I think you'll find that about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.

    Crap... I tick a worrying amount of those!

    Wellington • Since Jun 2007 • 7473 posts Report Reply

  • 3410,

    Crap... I tick a worrying amount of those!

    4 out of 6, for me.

    Edit: Oh. 5, actually.

    Auckland • Since Jan 2007 • 2618 posts Report Reply

  • Islander,

    Jack - osteoarth. is a bugger to live with (I've been um, *inconvenienced* with it for 8 years now, neck, right hip/shoulder/knee, left knee and several finger joints) and I know it can get worse: my mother's hands are not only disfigured with severe Hebeden's nodes, but her hands will lock for up to an hour, after her bout of polymyalgia rheumatica (which affects quite a high proportion of people with osteo-a.) *What we all (this includes 2 other immediate whanau and several cousins)have found helpful is - fish oil, glucosamine (with chondroitin), and magnesium (if you get the cramps associated with the condition.)
    None of those cure it, but they seem to ease things - and I havent had any flare-ups for 2 years now (see me splayed across my wooden desk touching as much of it as I can reach.)

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

  • Heather from Auckland,

    Anyone with CFS who'd like some sound info and support might like to get in touch with the national support society, ANZMES. Ros Vallings, who several here have mentioned finding helpful, is heavily involved with them. I wrote a thing about the ways I've found them helpful here. I've had CFS for 7.5 years now, and a friend has recently put together an archive of my writings to date on the topic here. Sorry to link to my own stuff, but I'm too knackered to say any of it again right now!

    Auckland • Since Jul 2010 • 5 posts Report Reply

  • Lilith __,

    Bart: by "moot point", I just meant that nobody knows. Of course I'm sure somebody will eventually find the answer, and I hope it's tomorrow! But until that time, we have to treat the symptoms as best we may, like you say.

    I didn't mean to suggest it was effective but more that it might lead to misdiagnosis and hence to a reporting bias for CFS.

    I'm sure you're right.

    I'd be really cautious about there being a huge difference between CFS in men and women without some good stats.

    Aren't there heaps of diseases that affect women more commonly than men, and vice versa? MS is one that springs to mind.

    I'd argue that there are less severe CFS cases that are still CFS.

    Well until we have a clearer picture of what CFS consists of, it's all open to debate. As somebody (?Julie) said earlier in the thread, cancer is actually hundreds of different diseases. It's likely there are at least a few hidden within CFS, which would account for the variation in symptoms and the pattern of illness. But I would argue that someone who is mildly ill and who then completely recovers is best described as having post-viral fatigue, or something else entirely. Post-viral fatigue is not uncommon, and lots of illnesses have fatigue as a marker. CFS isn't usually diagnosed unless symptoms are severe and chronic and all other possible causes have been ruled out.

    Dunedin • Since Jul 2010 • 3895 posts Report Reply

  • recordari,

    Islander - thanks for that. Have been advised on, and tried most of those things, and it seems to have slowed to the extent I haven't felt worse for quite some time. But I do have this recalcitrant patient thing going on. Knowing what's good for me is not the same as doing what's right, unfortunately. Need a personal trainer with a whip.

    As to Emma's checklist, not right-handed, and no tattoos, but could pretty much fit the rest of it, with only minor adaptation. Political Philosophy.

    AUCKLAND • Since Dec 2009 • 2607 posts Report Reply

  • Islander,

    There are probably people here with specialist knowledge who may be able to with the trainer-

    and, re the checklist: righthanded, no tattoos, no degree, but if you lose the 'technical' I can tick the other 3 boxes - whew!

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

  • Russell Brown,

    Sorry to link to my own stuff, but I'm too knackered to say any of it again right now!

    Go ahead! We encourage useful link-whoring here.

    Auckland • Since Nov 2006 • 22850 posts Report Reply

  • George Darroch,

    about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.

    4/6. I often forget that I have a philosophy degree, but thankfully my illnesses have never been chronic.

    Well until we have a clearer picture of what CFS consists of, it's all open to debate. As somebody (?Julie) said earlier in the thread, cancer is actually hundreds of different diseases. It's likely there are at least a few hidden within CFS, which would account for the variation in symptoms and the pattern of illness.

    Ignorance showing here: isn't a 'syndrome' a recognisable cluster of symptoms that hasn't been properly identified by medicine/science, but for which there is strong observational evidence?

    Cancers, indeed. Oh yes, and I've seen widespread link between cancers and viruses is something that Ian Frazer and other researchers are arguing, but that's another question entirely.

    WLG • Since Nov 2006 • 2264 posts Report Reply

  • Russell Brown,

    I'd be really cautious about there being a huge difference between CFS in men and women without some good stats.

    Aren't there heaps of diseases that affect women more commonly than men, and vice versa? MS is one that springs to mind.

    Men are more prone to heart disease and epilepsy, to name two more. I don't have any trouble believing there are many other diseases to which women are more prone. (Or that women being more prone to CFS influenced the view that it was a hysterical illness.)

    Auckland • Since Nov 2006 • 22850 posts Report Reply

  • BenWilson,

    Does an imprint of the bottom of a swimming pool on my scalp count as a tat? If so, 100%.

    Auckland • Since Nov 2006 • 10657 posts Report Reply

  • Sacha,

    technical writer

    You can tell by the number of us counting off the items..

    Ak • Since May 2008 • 19745 posts Report Reply

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