I am new here! In fact, I have been diagnosed with asthma last year, and I am so unexperienced about it, that's why I have a few questions. I'll be grateful if some of you could answer to them!
So here's my little story:
I have been diagnosed with asthma last year and for the first three months it was mild and well controlled. I still could do sport as much as I wanted and my life went on. We thought my asthma was due to pollen.
Suddenly I started having "stronger" asthma, several times everyday for ~ four months. In fact, I had new triggers. It took me four months to identify them and eliminate them from my daily life. During that time period, I was suffering from important fatigue and chronic dyspnea, which means my breath never felt "normal", even when I wasn't having an asthma attack. Obviously I completely stopped doing sport.
The thing is, now I had identify the new triggers and I was avoiding them, I thought I was about to heal and I thought I could get back to my "normal life". Spirometry was good!
But I quickly realized that I still had a big problem with my breathing pattern: I was still breathless and veryyyy tired from a very little effort . Sometimes I have pain in my chest and even in my back. My doctor told me it wasn't asthma but hyperventilation syndrome.
Great, but here are my questions: asthma makes me feel very tired, it gives me dyspnea, I can't talk when I have a crisis and I have palpitations. I still got those sensations everyday (it nevers leaves me alone) and now I am being told that it's not asthma anymore? It get worse with effort...
I am scared that the doc made a mistake, I'm scared of still having uncontrolled asthma, which could cause my chronic symptoms, and I am scared of havig developped some fixed asthma or something. I practically feel the same as those tremendous four months. Anyone here knows that situation and could share his/her experience? Anyone also feels tired because of chronic hyperventilation syndrome?
Thank you very very much, and the most important, take care!
Written by
Ilis
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Breathing pattern disorder (BPD)/dysfunctional breathing/hyperventilation syndrome (interchangeable names for essentially the same thing). It is very common and can exist alone or alongside things like asthma. It's known as an asthma mimic because the symptoms are very similar to asthma and, for that reason, it's very often missed as a diagnosis, or ignored, in favour of an asthma label (by both patients and doctors). The problem with this is that BPD type conditions do not respond to asthma meds (however many are thrown at it) so fixating on (or only on) asthma is never going to be the answer. (Sorry, bit of a soap box moment there!) BPD/hyperventilation syndrome does respond well to respiratory physio as it's a mechanical thing and requires the body to re-learn how to breathe properly.
Emma explains about it here in her post about asthma mimics:
As is explained in the links, it's very common alongside asthma (particularly after a period of struggling with that) or, with or without asthma, after a virus of some kind (and much of the post covid breathing issues are exactly this, though of course many more illnesses are also available!) It can also be triggered by all sorts of other things.
Has your GP or anyone referred you to physio? This is by far the best way to tackle it - physios I've seen in the past have been brilliant and the exercises really do work. They're not particularly time consuming but do require repetition and use over time (and for people to stop the fixation on it being asthma or only asthma 😅 - not you but definitely other people!)
It's in my link above but the BLF have some exercises which are really good (in case you want something to look at now): blf.org.uk/support-for-you/...
BPD issues can be just as debilitating as asthma (moreso actually as many people's asthma is controlled so actually not particularly debilitating!) and it's just as real. It can absolutely cause fatigue and constant issues and constant shortness of breath. The fatigue comes from the body not breathing properly so the gas exchange of oxygen and carbon dioxide is messed up.
Last bit (!): Unless you've been told otherwise by your GP, don't stop your asthma meds! I wasn't sure if you meant they're saying it's all BPD or asthma alongside BPD - but unless they've categorically decided it's not asthma, it might be both so don't stop those for now!
mylungshateme has come out the other side of physio for BPD and might be able to help.
Thank you a lot for answering me, I am kind of released now that you told me that BPD can cause fatigue. I associated that symptom with asthma only...
I will give an attentive look to the links you sent me!!
As you said, BPD is debilitating (just like asthma), and I think that's the most difficult part for me. I was used to do ~ 15 hours sports / week and for the last 365 days I couldn't move anymore.
Yes, sorry, I have asthma for sure and BPD. As you said, I am not stopping my meds for asthma!!
Again, I want to thank you for your time and for your precious answer, I am so worried about this situation I'm in, so thank you A LOT for your explanations!
I forgot to mention : yes, my doc reffered me to a physio, and it's been months I have been following everything he taught me to improve my symptoms, but it hasn't solved anything yet, my breath is still as bad as before. Maybe I need more time
Big smiley hello 😁💫 things sound desperate for you sadly I know that feeling all to well. But honestly you can and will get better. BPD is an illness, it's not "in your head" its seriously debilitating with very serious symptoms BUT we can reverse it 100% with engaging, patience and determination to do the respiratory physiotherapy exercises.
I will try find the link, if not @twinkly29 could you please? (The one that the respiratory physiotherapy once gave you and it remembers where you are next time you log in) Also lils if you look at my previous posts you will see a lot of the questions and answers probably that's going around in your head. You can message me any time. 🙂
Thank you for reading my previous post (I have to admit that it was a long one).
I am sorry to learn you know that feeling too, which means you also suffer a lot from it...
A big thank you for answering, and most important, thank you for your support and for being avalaible if I have any doubt, I appreciate a lot!!
I'll read your posts, I'm sure it will give me lots of answers and informations!
Again, thank you and take care!!
Hi Ilis. Welcome to this friendly group.
I’m a lifelong asthmatic & as a result developed dysfunctional breathing, decades ago. I’m following the Breathing Freely course now and finding it really helpful, although I know it’ll take some time to reverse so many years of poor breathing!
I’m sure you’ll get the hang of it very quickly though x
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