So, my PF isn't a very sensitive measure day to day, but it dropped during a recent, long, pretty bad flare-up, down to maybe 65-75% most days. Not crisis but not as good as it could be considering normally it doesn't drop much even when I have symptoms! However, I thought this indicated something was going on (my cons thought it was fine but then I discovered for some reason he thinks my best PF is 530 and not 600 which would change the percentages. I have no idea where this figure comes from though).
I realised after my last cons appt that because I hate doing PF and symptom diaries I only do them when I'm struggling and therefore he gets a skewed idea (specifically, he is convinced that I don't try hard enough not to take Ventolin as I/m supposed to do breathing exercises first - except that I really do try and in the flare-up it just wasn't working and however much I tried with the exercises I was on a horrendous amount.) So I've been trying to track PF and number of puffs during a 'good' period - which is now - so I can show that it's not always like that.
Except now I am out of the flare-up the PFs are still basically the same! The Ventolin use has gone down loads - big difference from this time last month when I was actually starting to get better; I'm able to do so much more and not have to think about breathing a lot, taking far less Ventolin and able to do a lot more without thinking about breathing, though I do still find if I 'push' it like rushing around on the tube in London or even trying to walk at what I think is a good speed (I used to be a fast walker), then I will know about it and I'm hoping this is not the best I can expect.
But given this is pretty good, and I think the generally warmer weather is helping, I don't know why my PFs are stubbornly NOT going up! Usually when they don't match it's the other way round, so this is just weird. Can't help thinking my lungs are playing mind games as they know I am trying to show what they can do when behaving better. I'd much rather it was this way round than the other way round, but I am finding it a bit weird that they won't budge.
Not much point seeing the dr or anything about it when symptoms are so much better but I do find it a bit odd and was wondering if anyone else, especially those with unhelpful PFs, had found this. More curious than worried but it's yet another oddity (why can't I ever be normal?!)
Although I keep a record of my peak flow I think it's main use is to beat disbelieving GPs with when you go and ask for help and they seem to think you're doing well and you know you're not. I totally agree with you that it's a nuisance and I do sometimes forget, but I've had the game where you explain your symptoms and the GP smiles and ignores you so I feel better being able to hand my phone over and say 'look at this, then!'. Maybe not the best reason for doing it but we all have out foibles.
Although I keep a record of my peak flow I think it's main use is to beat disbelieving GPs with when you go and ask for help and they seem to think you're doing well and you know you're not. I totally agree with you that it's a nuisance and I do sometimes forget, but I've had the game where you explain your symptoms and the GP smiles and ignores you so I feel better being able to hand my phone over and say 'look at this, then!'. Maybe not the best reason for doing it but we all have out foibles.
Disbelieving GPs - yup, yup, yup, He does listen to ""it feels better,"", but he actually hears it if there are pretty little PF numbers attached.
but also disbelieving me: I like my numbers almost as much as my GP, maybe even more. Sometimes I'm not sure which of us needs them more.
Today in reference to a minor flare that isn't going away as fast as I first thought (I blame the rain) and how to cope with symptoms:
Me: how much ventolin should I be using? I don;t want to overuse ventolin, but sometimes four puffs seems to work better than two
GP: four puffs is a lot. is ventolin really making a difference? (for some reason he always doubts this if I just talk about symptoms)
Me: I don;t use them all at once. I wait to see if i only need two. But for example today: I was 370 this AM and after 2puffs i was 430. But it didn;t stick. After two hours I was feeling pretty bad again. And when I checked my PF it was back down to 370. After a while 2 hrs or not, I decided I had to live my iife and not just lie in bed concentrating on breathing. After 2 puffs I was back up to 430 and could do things.
GP: well, it isn't standard, but I guess you have to live your life.
I have just realised that while this is a good point, this currently IS my 'normal level of activity'! I
I think coming to terms with what level of control is worth the trade-offs that go with more medication/pred isn't easy, no matter what the symptom level. A gap between the energy level we expect of ourselves given our age and peer group and the reality that is fair to expect from ourselves is difficult. I don't think it matters much the objective size of the gap. What matters is what it means to us and how we feel about it. And what we do to make peace with it.
Sometimes I find that after a while I get used to whatever is causing the lower peak flow and don't have so many symptoms. Then again if you feel you are getting out of breath more than you should for a given level of exertion, maybe you aren't breathing as well as you think? I never really know what to think for myself in these situations. On one hand, if breathing isn't interfering with my life, then does it really matter. On the other hand, in my case I recently reviewed my notes over the last few months and it seems that when a low peak flow goes on too long, I start becoming more vulnerable to triggers: it takes less to trigger breathing problems, they last longer after the trigger disappears, and it takes more ventolin or even steroids to get back to where I was before the asthma flare-up.
Annista - yes - my view exactly! Sadly it doesn't work if they don't look properly and seem to think it's normal for you; I was expecting such a moment when I produced my graph but just got told they were fine. Basically it seems like he says I'm fine whatever the numbers say and whatever I say about what's been happening. So I am deprived of my 'moment' lol.
Beth - good points. I did wonder if I wasn't doing quite as well as I think, but then I am having some really good days. On the other hand, I now know that if this counts as my best, I would be unable to do various things like any sort of vigorous exercise (I want to do martial arts but although I think the actual martial arts would be fine, the class I want to do has a vigorous warm-up and if the other night on the tube is anything to go by, I think I would struggle with that - but I will have a go).
I'm happy to be better than I was even with weird PF although I don't like mysteries (and Beth, I've had the same, not necessarily correlating with PF where I'm more easily triggered and it lasts longer). On the other hand, I would like to think there's still room for improvement, including not having any flare-ups like this last one - certainly the physio and my GP seem to think so.
I totally get what you mean by peak flow being weird ... when they were first assessing me it was jumping up and down and still does.
The annoying thing is that sometimes when I am good its low and vice versa ... I dont think its always a good indicator of how well you are!
Although, if you feel as though you would struggle with your usual level of activity, then perhaps you aren't doing as well as you think you're doing, and should perhaps contact your GP/consultant about it? You'd obviously rather avoid a flare up of it!
Are your PFs normally pretty consistant when you're well?
Laura x
Are your PFs normally pretty consistant when you're well?
Kind of, but they're not very helpful - I mean that they don't automatically drop when I'm bad and if I'm well they'll be higher on average but not closely following how I feel. I'm just used to them being relatively ok and not dropping that much when I'm not well, so it's really odd for me to be relatively ok but have low PFs!!
Although, if you feel as though you would struggle with your usual level of activity, then perhaps you aren't doing as well as you think you're doing, and should perhaps contact your GP/consultant about it? You'd obviously rather avoid a flare up of it!
I have just realised that while this is a good point, this currently IS my 'normal level of activity'! I'm far from the worst on here so I don't want to sound over-dramatic or like I'm asking for sympathy or anything, but this kind of level ie able to do most things ok but nothing vigorous and not too twitchy but can still be stirred up, reliever at least once a day but not often within the day is my new normal; I've not managed to get significantly beyond it for a while. It's definitely better than some people's 'normal' (not to mention mine 18 months or even a year ago) and I'm glad to be able to do a lot of things like go for a walk etc without worrying about falling behind and getting really SOB etc, but I still can't help feeling I'm not setting a very high standard for myself here...I thought 'control' was being able to do everything normally! There are other possible issues contributing but they're not controlled yet either.
However, at this level my consultant would just shrug and say I'm fine (mind you, he seems to do this whatever the figures) and my GP wouldn't really be able to do much; the only thing I could add, other than doing the exercises I do every day anyway, is pred and not only do I not want to be on it when I'm doing fairly well but quite reasonably they'd say I don't need it! Which I don't at the moment. But it's more of a long-term control thing so while I'd like my GP and cons to be working towards improving the 'best', short-term if I went to them I don't think they'd do anything as in their view, this is fine. And I'm not having many symptoms so I kind of agree...it would just be nice if they had some thoughts on the PF issue. Or if the PF were actually helpful for once! Pity I can't get my PIko to do anything sensible as FEV1 readings might help, but that thing thinks I'm about 3 people one of whom is an 8ft NBA champion.
I sometimes have 4 at once during a flare as well - but like you, never all at once, I wait to see if 2 will do and if not, I take 2 more and wait again (if it's a flare, that will sort it for a couple of hours and then it's rinse and repeat).
he actually hears it if there are pretty little PF numbers attached.
Yep - except now it seems even that doesn't work! What annoys me is that I understand their need for objective figures. So as my PF isn't such a great measure always, I try to find others, like 'how much Ventolin and how long in between' , or 'it used to take me 15 mins to walk this route to work and now it takes just under 30 mins and I can't say 'good morning' properly when I get there - but when I take this medication it's 20 mins and I can talk fine when I get to my desk', or 'I had x days not being able to work'. To me those are reasonable objective measures (and while it's a lot less objective, I do sometimes say if friends/family have commented on a difference). And my GP is generally willing to listen to these, but my consultant is not. And then with spiro, which should be objective, he is inconsistent and doesn't give the full figures he's using as an explanation.
I think coming to terms with what level of control is worth the trade-offs that go with more medication/pred isn't easy, no matter what the symptom level. A gap between the energy level we expect of ourselves given our age and peer group and the reality that is fair to expect from ourselves is difficult. I don't think it matters much the objective size of the gap. What matters is what it means to us and how we feel about it. And what we do to make peace with it.
I agree, but I think I might find this easier if I thought that my doctors were doing everything possible to make the gap smaller! Currently, this is not the case; I realise they have many other things to do and more severe patients but I've never been happy with 'good enough'. I'm making an effort by doing physio etc, but at times it feels like they (except my GP) are not.
in reply to
I agree, but I think I might find this easier if I thought that my doctors were doing everything possible to make the gap smaller! Currently, this is not the case; I realise they have many other things to do and more severe patients but I've never been happy with 'good enough'. I'm making an effort by doing physio etc, but at times it feels like they (except my GP) are not.
I can identify: it is a problem I'm currently struggling with. There have been times when i think my doctor has just given up on fixing certain problems. There are times when I think my doctor doesn't fully appreciate how much of a difference asthma medications make because for a long while he was only seeing me when there were problems and not in between when things were good. Since he didn't have a good feel for my personal best, it was hard for me to trust his judgements when he would recommend reducing medications. It is a problem we are working on, and hopefully improving on through better communication.
But to raise a possibly painful question: what is the price of that next step of improvement, assuming it is possible? Is is really a price you want to pay? Apart from whatever communication problems and biases your cons or GP has, is it possible that (a) your cons is actually worried that part of your asthma just isn't that fixable or (b) isn't fixable without introducing other more serious problems, e.g. long term side effects of pred? If your only step up is a maintenance dose of pred, your cons doesn't really have a lot of options left. Martial arts with fragile bones would be a lot more difficult than martial arts training that has to get cut short from time to time because your asthma is behaving badly. Fragile bones would be a show stopper. Asthma would simply mean you learn each technique more slowly because your training is in fits and starts.
in reply to
But to raise a possibly painful question: what is the price of that next step of improvement, assuming it is possible? Is is really a price you want to pay? Apart from whatever communication problems and biases your cons or GP has, is it possible that (a) your cons is actually worried that part of your asthma just isn't that fixable or (b) isn't fixable without introducing other more serious problems, e.g. long term side effects of pred? If your only step up is a maintenance dose of pred, your cons doesn't really have a lot of options left. Martial arts with fragile bones would be a lot more difficult than martial arts training that has to get cut short from time to time because your asthma is behaving badly. Fragile bones would be a show stopper. Asthma would simply mean you learn each technique more slowly because your training is in fits and starts.
This is a good point. It was worrying me during the flare-up; it still does at times because I definitely do not want to go there should it come to it. And since it isn't a question of 'multiple life-threatening attacks and hospital visits vs not this', it is perhaps a harder decision even though it's certainly better not to have to deal with the attacks in the first place.
However, this seems remote at the moment, because of those communication difficulties - ie I have no idea what my consultant thinks. Essentially:
a) my consultant on the one hand appears to say my latest flare-up was not asthma and that pred will never be necessary. However, he then says that I should 'expect flare-ups in winter'. He says that it's due to a laryngeal problem which I am aware is there but hasn't been explained in detail and I was told was mild (so I have difficulty seeing, without further input or explanation, how it could be causing the majority of my problems and certainly anything like this last flare).
b) He said 'nothing more I can do but keep on with physio' (having read some of your other posts about your experiences, I suspect his slightly aggressive manner and seeming to push the blame onto me for apparently not trying hard enough with exercises may be because HE really has no idea where to go next and doesn't like the fact he doesn't have a solution). Then he says (having said in Nov that I am doing 'really well and everyone agrees') that I have made 'very little progress with physio' (physio and I think not perfect but better than he says). Physio says not the improvement they were hoping for and no further sessions at this time - but thinks laryngeal issue is NOT causing symptoms.
So really, it seems to be stalemate. I get the impression he doesn't think the asthma is the problem, but his explanation for this is confusing and not consistent with what's been happening, with what other drs have suggested and even with what's been said before by him and colleagues. And he doesn't seem to have another explanation that makes sense or has any kind of solution, nor does he seem to be looking for one anymore. I realise however curious I might be I can't sensibly pursue EVERY angle just in case (and this low PF thing may be a red herring - though usually they are so hung up on PF!). And also that I've had a lot of tests, and would prefer not to have any more if I can avoid it - I can see that there is no point doing endless tests or repeating them.
However, some sense that they're not just thinking it's too hard to tackle and not really important anyway would be nice. At this level, it's not brilliant but manageable. At the level of my last flare, if that were to happen again, it would make things rather difficult.
I really feel for you with this whole peak flow thing. Having had a similar problem, I was so relieved when the consultant I was seeing in my 30's said it was ok to stop doing it and to just go by my symptoms. I now go by my ventolin use and that gives me a very clear picture and no stress.
Just separately too, as I know we are both a bit 'odd' asthma wise. When the consultant wasn't sure what to do with me next, he gave me a nebuliser to use 4 times a day for 2 weeks and then PRN, I was very skepical that it would help long term as I think of ventolin as treating the symptoms and not the underlying cause but over time and very slowly things have improved and I guess it has helped me to improve my fitness which has helped and for the meds I am on to do their stuff. I haven't used the neb since February and was only needing it monthly since last April. I wonder if something like this would help you, although I know ventolin doesn't work as well for you always.
I do think because we have both had this flare up for a very long time it will take much longer for our airways to calm down completely and we just have to wait.
(Although, I am very excited cos I haven't used any ventolin for 4 days now and I have reduced my Symbicort down to 2 puffs twice a day, could this be it finally calming down after 3 years?!)
Jac xx
(Although, I am very excited cos I haven't used any ventolin for 4 days now and I have reduced my Symbicort down to 2 puffs a day, could this be it finally calming down after 3 years?!)
That is massively exciting! 4 days wow! Crossing fingers that this is a longer term thing and you can keep on the reduced dose.
I'm reluctant re the idea of a nebuliser as I'd feel it made things more 'serious' (and yes, I know it is a little crazy to want to be taken seriously but not have things 'serious'). On the other hand, I would happily do it if it would help. Sadly I don't think my consultant would ever suggest this as he is so sure that either it's not asthma or I can just 'put up with it when I get problems in the winter' (which I do find an odd attitude; I understand that pred should not be used lightly but also had understood that asthma flares should be controlled where possible, yet he is fixated on reducing my medication and me not having pred rather than on tinkering with things - not even increasing necessarily which I don't want either really - to stop those flare-ups which he does think are asthma. If he thinks I have well-controlled asthma, does that not mean I shouldn't be getting regular flares, rather than getting them and basically ignoring them?
(I have discovered that his speciality may be more in the laryngeal stuff than straightforward resp things or specifically asthma though. Complex as I'm sure there are overlaps with VCD etc looking like asthma, but he seems to have a rather conventional approach for someone working in a difficult asthma clinic with people whose lungs etc don't play by the rules!)
I was resistant to having the nebuliser at first but it has made a huge difference for me when I am needing seemingly 'endless' puffs through my spacer and except for when I was ill in February this year it does work everytime (sometimes after 10 minutes.) I guess for me and my consultant it did confirm it is asthma too whcih has helped me be more relaxed when going for appts and more confident about it being odd.
I just wish you could get to the point where you at least have some normality with your breathing as I know you can forget what that feels like and how effortless it is. If I was you I would be seriously thinking about going back to that other consultant/professor too. xx
Philomela, I'm not sure that any of this is going to make sense, or be of any help at all, but I'll give it a go.
I kind of see living with asthma as a bit of a balancing act - I ignore it where possible, pay due attention where I need to and try hard to look at the things that I can't do any more as the price I'm paying for the control that keeps me out of A&E. It doesn't always work, of course. I can bitch, whine and moan like a champion, and I absolutely have to learn the same lesson on a regular basis because it's not how I want things to be. And it doesn't get any easier, whether it's the first time of the twenty first. And, like you, I've tried so hard to make sense of it all. I've come to the conclusion that if it does make any sense it's too complicated for my small brain to handle and that the only way I can deal with it is to accept that it is what it is - but that doesn't mean I have to like it!
Your reference to a 'new normal' struck a big chord with me as I tend to get exactly this revelation every time I have a major flare up and realise that, for example, I now need to avoid the Body Shop or the steam room at the gym. Every time it happens it takes me by surprise so I do a bit of outraged foot stamping and try my best to prove to myself that I can get back to my original 'normal'. I inevitably realise that resistance is futile and adapt until I get to the stage where I no longer think about the things I used to do but can't do now and where avoiding the things that now set me off is automatic. Surprisingly, I often find that the 'off limits' activities creep back into everyday life, just a little at a time and not immediately - I'm almost two years away from my last big flare up now and my lungs are still touchy about humidity and perfume, but they behaved very well about the very cold weather, which has been a trigger for me for ages. Swings and roundabouts, I suppose.
Overall, I think I'm very lucky that I don't have constant A&E visits like may people here - I don't even have a consultant (just a useless GP who ignores me when I go in and whine at him) and I have gone 10 years between major flare ups, giving my lungs a good chance to settle down nicely. The downside is that I get complacent and find it difficult to believe that what I'm treating as a minor irritation is the start of something more serious.
As a coping mechanism it's not perfect but it mostly works for me and I have to admit that I'm finding it a whole lot easier since I stopped trying to behave as if I didn't have a problem and, for example, going with a friend to the Body Shop to buy a gift and then having to sneak off to use my inhaler. And yes, I'd love to climb that hill and look at the view but I'll stay here and drink tea and read my kindle and breathe easily.
Anyway, if you can pick anything useful out of these confused ramblings you deserve a medal!
Thanks Annista! I think it does make sense. Sadly, in my head I'm still a healthy person 'with a blip'. If asked by people like opticians 'how is your general health?' I will struggle and say something like 'ummmm......ok, I guess'. I am still half convinced that it's all going to go away soon.
I'm definitely lucky not to have the constant A&E visits but am still in the stage where what I can't do is sitting awkwardly - because to me, there's too much of it! I'm hoping, if I am annoyingly persistent enough, to get to the point where the things I can't do are almost all 'little' things, or things I don't really do anyway - it's not as though I am an ultra-sporty type and a good thing too as I'd be going CRAZY right now if I were, but I am impatient and a fast walker so that matters a lot more to me - I seriously hate lagging behind people and hate even more having to explain why.
I did email my GP saying 'ok, here's what I find confusing/contradictory about my clinic appt and the letter' and he's replied saying 'I'm a slow typist, come and see me and we'll discuss'. So I'm hoping he might have some helpful thoughts/ideas about where I could go from here.
I enjoyed your 'ramble' Annista. I think I am between you and Philomela. I am ok with how things are now as long as I can see my symptoms improving(albeit always slow with me.) I really miss walking if I can't do it so can never accept limitations with that.
I am like you and have had many years at a time with little or no symptoms and as my airways calm down my triggers reduce. My last trigger to improve or disappear is grass pollen from May to July. This is the worst and longest flare up I have ever had though so realise I have to be even more patient.
Philomela, I totally get your point about hating to lag behind other people. I don't like it either, but I have managed to get over the thing about not wanting to say why. I kind of think that it's because I no longer see myself and the asthma as a package, but as two separate entities. I'm still the same as I've ever been. I don't feel ill (most of the time) and I don't see myself as anything other than a healthy person who is being followed about by this inconvenience called Asthma, which I thik of as a fairly badly trained dog which runs round me jumping up, barking and generally being a nuisance. Sometimes it is enough of a nuisance that I have to take the time to calm it down in the hope that it will go away and annoy someone else. Other times it seems to be having a bit of a snooze and I can do whatever I like as long as I keep an eye on it so that I don't wake it up. Sometimes it disgraces itself in a shop or on a bus and I have to take it outside and give it a good telling off. But it's always the asthma, not me., which somehow makes it easier to say that I think it's better if I don't climb a mountain, enter a dance marathon or whatever, because the asthma is behaving well now and I don't want to set it off. I know it's a very fine distinction, but it works for me and I find that the more often I do it the easier it gets. I've found that for me the key is to be up front about the whole thing. Yes, when I've got a flare up I cough horribly for hours and yes, my lungs produce enough mucus to float a fairly sizeable boat on (yuck - nasty! Sorry) and yes, I use my inhaler wherever I am and no longer worry in case other people find it disturbing - they'd be a lot more disturbed if I didn't use it! But the good thing is that if everybody knows how rotten it is then they can help me laugh at it and make it less unpleasant while it's happening and helps me get my head where I need it to be.
JF, it's so nice to know that I'm not the only person to go for yaers without major symptoms. I have in the past felt a bit frudulent for dragging my inhaler about with me when there are no symptoms evident but common sense says that even though everything is ok today the asthma is a cunning beast that creeps up on the unwary. Good luck with the patience!
Ha, I see my lungs as delinquent children who are constantly in trouble (but not yet young offenders). I guess I have to believe that reform is possible.
I have to admit I pretty much ignored them when they were good - at university and afterwards I didn't have an up to date inhaler or even carry one because I thought 'oh well, I've grown out of it, don't need that anymore'. Actually, in hindsight, the lungs were just biding their time and there were a couple of incidents I perhaps should have paid a bit more attention to.
Today they have decided they can do really good peak flows ie up near my best and pretty much on it. Finally! I can't say I feel a huge difference in the way they're performing, but even I was beginning to be sceptical that my epic PB peak flow was real or that I'd ever do it more than once, and I don't think it had been captured on any kind of record (my cons appears to be using the best PF he can lay his hands on). Now there it is, so I can say 'look, I really can do 600, so 420 and never going above about 480 is not really 'fine''.
I do still seem to get some resistance though even though they know my best is much better than predicted - it's like they think if I can blow above my predicted, I must be ok even though it's still surely meant to be comparative. I'm sure I'd have a different response if I were a bloke with a predicted best of 600 who was blowing low 400s (I say this not to imply they're being sexist but because judging from the charts, no woman will ever have a predicted best of 600 for my type of meter. As it is any man my age who does have predicted best of 600 will be quite a bit shorter than me - but that clearly doesn't mean that a man can't possibly have asthma because when he's having problems his peak flow is the same as the best possible that a woman of a similar age and size can do!
I also sometimes find myself thinking that my personal best was some sort of imaginary number when my peak flow gets stuck below best for a long period of time. Yet another reason to remember to track peak flow from time to time even when one is symptom free. It helps to look back at my notes and see that I really didn't imagine being able to hit a higher number.
Glad to hear things are getting back to where they were.
Thanks Beth!
Well, went to see my GP. I rambled at him but he listened, think he felt quite frustrated as he has NO idea what to do and neither do I so I wasn't offering anything useful!
He said his convo with RBH was very much 'I have no idea what to do, your move now' from the cons. So as I felt not much is happening now and apart from the physio helping not much has ever happened at appts (cons tells me I'm fine, or at least lungs are, whatever the numbers and my symptoms and they have varied quite a bit), only thing I could think of was being referred back to St M where I was before, crossing fingers I get to see the same prof and at the very least they shouldn't need to start from the very beginning.
No idea if it will help but was really getting a little fed up with the unpredictability etc. If I were generally doing better I'd just discharge myself and leave it at that but I'm not quite confident it's really sorted yet and am trying to avoid a repeat of the last flare-up.
I do feel like rather a drain on the system but certainly I don't want to have to see all these consultants - would much prefer to have stuck with one or never seen any, given the general hideousness of appts.
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