Dysfunctional breathing disorder

[Aliann]

My sister was diagnosed about 3 years with asthma but after a review with a clinician was told she didn't have asthma despite presenting at her own doctors and A&E with episodes of breathlessness. My sister was stunned by the opinion of this clinician as was the respiratory nurses she sees and her own doctor. To cut a ling story short she was under went a number of cardiac and lung function tests and was told she has 'dysfunctional breathing disorder'. It seems hard to find much information about this. Can any one point me in the direction of getting some reliable information about tis condition?

[Hidden]

I found this, err.ersjournals.com/content... but in the address bar it states "not secure" so take care if you decide to view it.

[Lysistrata Administrator Community Ambassador]

Hi, I'm wondering if the consultant provided any further explanation or details on how they arrived at that diagnosis? Dysfunctional breathing can occur without any other problem but it can also be quite common in people who do have asthma or other breathing problems - struggling to breathe from that can give you bad habits! Has the consultant suggested your sister should see a physio or anyone to help?

I have severe asthma which used to be less severe and I got told several times 'oh you just have dysfunctional breathing not asthma'. I was sent to respiratory physios a lot and they found that I had some mild bad habits which they helped me to get under control, but getting those under control, while it stopped me making things any worse, didn't really help the asthma hugely.

In my case I think that when I wasn't so bad, I might be seeing the consultant and doing tests on a day when I was ok - it is possible for asthmatics to have normal spirometry when they are ok, so if your sister did it on a good day there might not be much to see. The testing may also not be done optimally - I have seen on this forum that if someone has a personal best that is higher than predicted and they're supposed to be getting reversibility testing (do lung function, take reliever, do it again), they may never get the reversibility part of the test done if someone doing it decides the first part is 'normal' and nothing more is needed. The initial result may not be normal for them, and anyone who has done a lot of sports or singing/played wind or brass instruments can be asthmatic and still get a really good result on a good day, and/or have what seems good but have more in 'reserve' once they have had the reliever! I also had a challenge test (they challenge you with a substance to provoke the airways and do lung function before and after) which was negative the first time because I wasn't given good instructions about stopping medication. The second time I still wasn't given good instructions (both specialist hospitals too!) but I looked it up myself and the test was strongly positive.

I was also, and still am, not a very typical presentation for asthma (eg no wheeze, maintain oxygen sats in attack, peak flow doesn't behave as expected), and I have to say that this can lead some doctors, especially non-asthma specialists, to conclude that I didn't have it. Even respiratory specialists, if asthma isn't their area of expertise, can be surprisingly ignorant about developments in asthma and may see it as 'only' the textbook, with anything else 'not asthma'. (And I have to admit, in my case some of them were meant to be asthma specialists, but they didn't listen very well.)

The consultant may be right, but given you, your sister and her other doctors/nurses seem to be very surprised by this, it might be worth looking into a second opinion/finding out more about where this diagnosis comes from and what the test results were - do they seem very different from other ones she might have had eg spirometry at the GP surgery? If it is just the dysfunctional breathing then she should still be getting help with that, but if she does have asthma of course she doesn't want to be left to it with no medication - not safe and not much fun for her!

I would suggest that you and/or your sister could call the Asthma UK nurses, as they are very helpful and friendly, and also expert and should be able to discuss it all in detail and walk you/your sister through what the consultant has said.

Hope this helps!

[EmmaF91 Community Ambassador]

Here’s some good info on DBD:

uhs.nhs.uk/Media/Controlled...

However a word to the wise, you can (and most asthmatics do) have both. My local team was treating me for severe asthma, but when I went for my difficult asthma protocol at a different hospital I was asymptomatic, did all the tests and was told it was DB. Got home, got a chest infection and massive asthma attack. Went back to specialist hosp 2 months later to a lot of apologies!

If it is just DB then that’s brilliant cause it’s relatively easy to deal with, however if at anytime things stay to feel wrong, usual protocol - seek help!

Hope that helps and that things start to calm for her soon!

[Tabitha58]

LOL - asthma is dysfunctional breathing