It’s always a fun conundrum isn’t it. You get told asthma will improve with exercise, but you know if you’re uncontrolled the exercise will trigger off the asthma, and the lay person stuggles to understand this!
I spent a few years really unstable and uncontrolled, not able to reliably walk the 500m to uni each day without running the risk of landing either in an unfit state to study or back in hospital. This came after years of being a high performance sports person, where I was flipping and flying through the air. It was (and still can be now) upsetting to be constantly told exercise would help, when it really wasn’t an option at the time.
In the long term I feel like all the sport has increased by PF best score, which does mean I have further to fall until I’m in really dire straits, but also comes with the issue of being way above predicted so often have to argue with docs that 300 is not a good/ok number for me post meds cause it’s below by 50% despite being 68% my predicted (it has often meant either under treatment, or time in being a lot longer). And I think it’s also falsely makes people think I’m improving when I’m not... ie an increase of 100L in predicted is 22% so decent, however for my best it’s only 14% so not as good. This means I then drop back a lot more I think (this is all my opinion but so often people tell me I have ‘great reversibility so am fine’ which then only lasts an hour etc, so kind of makes sense)
However, more positively, I AM now a lot more stable. It took 3 years, 3 biologics and lots of trial and error but I’m now able to start back doing exercises. Some days I’m fine, other days there are issues but so far not to hosp level 😅. I exercise because I finally can, and because I hope to loose some of my pred tummy (cause that’s the kicker isn’t it, exercise = attack = pred = weight gain = ‘exercise more’), and I’m hoping to be off the pred soon
I’m currently part of the ‘we are undefeatable’ campaign for those with long term health conditions. I can appreciate that some days you can and some days you can’t, and when your as uncontrolled as I was exercise was an impossible dream. I wish there was more advice out there for severe/difficult/uncontrolled asthmatics other than ‘don’t do if uncontrolled/speak to your doctor’, which was particularly useless... they’re the ones telling you to exercise sometimes, but have no advice on how to not end up in hosp due to it except ‘don’t do’ 🙄. However, those who can should (if only for the other health benefits and the endorphin rush 😉😂), and those who can’t/really struggle, I hope you find a semblance of control soon, and can manage to do something, whatever it is.
Where are you on the spectrum? What do you find that you can and can’t do now? What do you enjoy doing or what do you hope to be getting back into?
( facebook.com/40952091012/po... - I think I was too cheerful on the resus pic for them to use it... here is what I think is my best and worse 😂😂)
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EmmaF91
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I'm so glad that you have found a treatment that helps.
I am unable to exercise, have been like this for years. What complicated things for me was being seen 15 years ago at the Royal Brompton difficult asthma clinic who diagnosed me with silent reflux (aka reflux cough disease) and said because I didn't have eosophills I didn't have asthma. I had an operation to treat the silent reflux which stopped the sudden attacks. I was taken off my preventer medication and was fairly ok for about 6 years but still unable to run etc. I didn't have any attacks that landed me up in hospital. I know that the understanding of asthma has changed since then thankfully. I now look at silent reflux as being an asthma trigger rather than an alternative to an asthma diagnosis. I've always responded to nebs and steroids.
Roll on to now, over the last few years my asthma has got worse, my PF isn't a reliable guide to how well I actually am. My personal best pf is 570 yet on my last hospital admission my pf was 460 but my ABG was 90. So I rely more on my symptoms, tight chest, wheeze, before wheeze the sighing sound when I breathe out etc. Some days I can walk with little problem, other days it's impossible. I compensate really well until I crash, I've got so used to having symptoms that they become my normal I'm ok which isn't good, so I'm having to take more notice of how I'm feeling and be honest with myself.
I have an appointment at Barts at the end of the month, so hopefully they will be able to help me find a treatment that helps. I'm currently on Fostair, Montelucast, Fexofenadine and Dymista nasal spray. I want to be able to walk especially up mountains like those in the Lake District. I also want to be able to swim without any problems.
I'd also like to be able to play my saxophone again, before I used to get short of breath. Not sure if playing a wind instrument can be classed as exercise though. 😂
It increased my best PF (oboe)! But then I have the same issues as Emma with the whole best much higher than predicted and getting told I'm fine when I'm not as they canuse the wrong yardstick. Plus I can maintain peak flow above 50% predicted even in a bad attack with bad ABGs. So not the best measure.
Btw I also have non-eosinophilic asthma with atypical presentation and had years of admissions but clinic saying I was fine or just mild - A and E could mostly handle it as they saw me bad but even alleged asthma specialists could be useless as I was too odd for them - not allergic or eosinophilic.
I also increased tolerance for symptoms - only when I have a good patch (eg after admission when they did a good job and got me well for a bit) do I realise it wasn't normal to be that symptomatic.
I hope they find something that will help you so more (even if it doesn’t make you perfect). If it helps in 2017 I was told I didn’t have severe asthma based on the fact that the spec hosp hadn’t seen me bad (even tho lots of evidence from local hosp and spiros to attest to it)... this was at the same hosp. They stopped basically all my meds, I then went home and had really bad issues for 2 months until they saw me again 😒 (low and behold eosinophil iv and atopic severe asthma 🙄). It’s the biologics that have helped get me stable, and I know they aren’t available for everyone unfortunately
I'm sorry to hear that the hospital did that. When I spoke to the asthma UK helpline they were horrified. I must admit the experience has eroded my trust in doctor's who don't keep up to date with the latest information available about asthma. Asthma UK nurses seem to know a lot more than general respiratory consultants!!
It’s great that you can exercise again and shows such strength of spirit! It took you a while but you kept on fighting. At times fighting is so hard and tiring. Your terrified too. The medical appointments where you tell the same story over and over again. I took my dad along to tell the story when I was really ill and I’d fill in the gaps. I think I’m just looking forward to being me again. Not so fearful of an attack all the time like at the start of the year. I’d like to be able to use my favourite hand cream again without a wheeze, it smells so good. Be able to use a nice smelling cleaner too! I miss that fresh odour. There just little things but would make me happier.
It’s a constant cycle. I can appreciate they see lots of people but if you’re a frequent flyer, always with the same issue, you’d think you’d eventually get stuck in their heads 😅😂 (this worked at my old GP). Resp Cons I have more sympathy for (as all they see are people with dodgy lungs and often a lot less often)... but again if you’re a frequent flyer to the hosp...
💁♀️😂 (I could tell you that I held it long enough for the photo... but really I used the burst function on my camera and had a few goes til I got a good photo 😂😂)
Yes, I wish not just there was more advice, but also more ideas of what you could do. I am no severe, but I do struggle when it is cold and also for other reasons. I am also not athletic, nor a sporty person, but I do like to be active. Into that mix need also be put that I am 70, so my body is not as good as it once was. Firstly I really wish there was more about older people with asthma, as we, too, have to cope with it, and it seems not to be viewed quite in the same way as with people, say, under 60. In the last few years, it has certainly reduced what I can do. I need enjoyable exercise I can do inside in winter, anything that helps. I do do circle dancing (when I can), yoga for crumblies, but feel I need more. I need ideas! Gym does not work for me as I find it painfully boring, and though I like swimming, I need to be able to swim in a circle, not lanes. Also not sure about the chlorine.
I can feel my frustration about all this as I write this. Sorry, it got longer than I intended.
Pilates, martial arts (you don’t have to spar/fight if you don’t want to), a group exercise class of some description (aerobics etc). Walking/rambling if you like those sorts of things. Fencing. A different type of dancing. Find something you like the sound of, and maybe a friend to take with you so you’re not on your own. Most clubs will be able to adjust of issues (physical/age/illness related) or you’re incharge of how hard you push yourself so you just need to know when to stop 😅.
I hope you find something you can join and enjoy. I agree and think there needs to be more info available not focused on children, or controlled adults (whatever the age!)... and not just about exercise!
You are quite right, of course. I suppose my frustration is largely finding it so hard to go for proper, but not necessarily long, walks in winter. I already pay for two activities, and don’t want to pay more. But I could put together a kind of programme for myself -;then it is ‘just’ sticking to it!
As someone who hasn’t really understood why people stand on their hands when they have perfectly good feet, well, sort of, I have to say I am truly impressed by your handstand however long it took to get the photo!
I'm a Severve Eosinophilic Asthmatic and now clinically obese (thanks Prednisolone) but summer 2018 I was much lighter, hiking and mountaineering. This year I've had 4 hospital admissions and bronchitis which I've not been able to recover from. I'm on 18 different medications and the chest pain has been constantly with me for the last 7 months. I get breathless just walking to the bathroom, so tackling a summit is way out of the question right now.
However, I start pulmonary rehab in a few days time which I'm very excitied about as it's a step towards getting my fitness back and my weight to a healthier level. The rehab is in the hospital gym and run by the physiotherapists, so if I get an asthma attack I'll have staff on hand to help me recover.
Thanks for speaking about this Emma <3 good luck with your exercises Power to you!
Thanks for the link Lysistrata . Great read, wow Go EmmaF91 , impressive hand stand! For me, I would like to be able to do long walks/brisk walks/stairs 😉
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