Dysfunctional breathing: Ok, I was... - Asthma Community ...

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Dysfunctional breathing

In_the_bardo profile image
30 Replies

Ok, I was diagnosed with dysfunctional breathing in early spring after lung function tests showed that my long-uncontrolled asthma was now controlled to the extent that the complex of symptoms I still experience are unlikely to be caused by asthma. Those (daily) symptoms are:

Chest and back pain

Tightness of chest

Air hunger

Sighing

General, shifting discomfort from throat to diaphragm

Constant, looping (maddening) awareness of breathing (fun one, that)

I get the premise of overcoming dysfunctional breathing is fully to accept the diagnosis (given that anxiety about possible causes will only exacerbate the symptoms of DB) and so I have been pretty stoical about said diagnosis and very committed to breath-retraining exercises. Three months of this, however, and there’s been almost zero improvement. Which, at this point, means that the doubts about whether or not diagnosis is correct are inevitably beginning to creep in.

I guess what I’m looking for from posting here is other folk’s experiences, and so the ability to weigh them against my own to see if I should probably just persist in breath retraining and keep the faith in the diagnosis or go back to the doctor for more tests. It’s also that thing at some level of a need for a small sense of community. That other people have also spent nights staring into the dark, aware of every breath they pull into their body, of the strain in the lungs and the ache in the ribs. I’d be grateful for that, too.

30 Replies
Vayu profile image
Vayu

Sounds tough :(. Are you seeing a respiratory physiotherapist for the retraining? If so, how often? I don't have personal experience with this but I agree that, unless the person who prescribed the exercises could reassure me that results are only expected after X months, I would be thinking about reassessing the situation after this much time without results. In the studies that I have read, improvement is sometimes seen already after one month. In one of the largest studies, they start tracking improvement after 3 months.

I hope you find answers and start feeling better soon.

In_the_bardo profile image
In_the_bardo in reply to Vayu

Belated, but thank you for this. The idea of tracking only starting after three months suggests that patient/stoicism is needed. Really useful information.

Mgt8 profile image
Mgt8

Hi,Problems with breathing can be such a pain as it is such a basic need for our bodies.

I have not got the same issue but do have some problems with breathing. One thing that has helped me is concentrating on nose breathing. For years I was not able to do this but with practice as well as using nose sprays, this is improving. I had not realised how important it is to breath through the nose and it has made a big difference to my overall health and fitness. I can get up in the mornings without feeling drowsy and during the day I have more strength to do the things I want to do.

Just thought I'd throw this out there in case it is of any help...

Best wishes,

Mgt

In_the_bardo profile image
In_the_bardo in reply to Mgt8

Solidarity for your own breathing issues, Mgt8, and thanks for the suggestion of nasal breathing. I’ve already been trying to shift my breathing from mouth/chest to nose/diaphragm. Mixed results, but persistence probably key here.

Woopdy profile image
Woopdy

HI..In the same situation.. I have just returned to work part time after 5 mths, and really no better. Almost scared to complain I am breathless when walking, as felt everything was being balmed on me just not breathing properly. It's sonfristrw

In_the_bardo profile image
In_the_bardo in reply to Woopdy

Yeah, I feel that too, that kind of embarrassment about complaining/going back to the doctor. That’s the tension point for me: how much does not complaining/going back to the doctor help me to accept the diagnosis of BD and so make recovery more likely versus how much does not complaining mean that something else is being missed, something else organically going awry. It’s that thing: am I a hypochondriac or am I advocating for myself? I’m not sure where the line is. Anyway, hope you find some relief.

Helloeveryone_ profile image
Helloeveryone_

Hi I would see your gp again and ask to see a respiratory physiotherapist and also further help , I know that sitting up all night and it’s horrible.

What I did to help was played the radio as a distraction and also puzzles anything to take my mind off it.

I saw a respiratory physiotherapist who helped so much and it took a while to really get the exercises right, so I really recommend them, but I had to ask my gp a couple of times before I got an appointment.

Hope you are feeling better soon.

In_the_bardo profile image
In_the_bardo in reply to Helloeveryone_

It’s weird, but I think your message to me - the sitting up all night solidarity - was the thing that helped most after I posted my first message. I’m sorry for you that you experienced it too, of course, but it really does makes it feel easier when you know other people have been there too; that they have come out the other side of it. Thank you for writing. And yes, I’m going to put myself on the looooong waiting list for a physio.

Helloeveryone_ profile image
Helloeveryone_ in reply to In_the_bardo

Great thanks for getting back to me and it’s nice to know I’ve helped. I hope you get to see a physiotherapist soon, and things get better soon.

four4 profile image
four4

I am sorry if my comments make you unhappy. It was because u mentioned the dysfunctional breathing diagnosis is based on lung function test. Actually a normal LFT do not imply good managed asthma. And it cannot lead to a confirmed diagnosis of DFB.

Is ur asthma medical treatments have already been optimized? Is there any environmental factor could be possible triggers to ur asthma?

Hv u treated ur anxiety problems? Are u having GERD, allergic rhinitis and treat them properly? If all these possibilities are excluded then DFB could be a possible diagnosis, then u can try to work on it and see if there is any improvement.

In_the_bardo profile image
In_the_bardo in reply to four4

Thanks for this four4, and very much not unhappy by your comments. Very grateful, in fact. I’ve been working my way up through these responses replying to folk, and actually my reply to Lysistrata gives much more detail and context on why DB seems like a reasonably logical diagnosis for me. The interesting point here is anxiety. I don’t present as anxious and I don’t identify as a particularly anxious person, but I’ve certainly felt my thinking about my lungs become ruminative and circular. I wonder whether there’s a slight obsessive quality to how I monitor my breath. Perhaps I need to assume to treat both, meditation for looped thinking and breathing exercise for DB. Thanks for pointing it out.

four4 profile image
four4 in reply to In_the_bardo

About anxiety part I admit it is a tricky thing, that many anxiety patients, including myself, not awaring/ feeling oneself having anxiety. But if the disease exists it really affect your body in many ways. Ur breathing, chest discomfort, even increase in cough (some websites mentioned it) and other symptoms could be caused by anxiety. And surely it will make ur asthma symptoms felt worse.

I suggested u can try to focus in three areas to help ur symptoms, i.e. physio for DB, streamline ur asthma treatment plan, and anti-anxiety medications.

After trying one for a period of time if u find no improvement, u can exclude it fr your list.

The final but seemed not possible cause is a mis-dignosis of asthma, but it is not likely in ur case, because inhaled steroid seemed useful to ur symptoms.

Asthma control involve multiple aspects and many conditions co-exist with asthma and make it difficult to manage. DB, anxiety, depression, GERD, allergies, environmental triggers, are all factors affecting asthma control.

Dalton1 profile image
Dalton1

I have the same problem for exactly 3y now..... Everyday chest pain and hunger for air....only thing that keepsnme going is fostair which doctor said it has placebo effect on me... All my lung test are good... I do have asthma but doctor said that in this stage I shouldnt feel everyday problems... I visited psihiatry which tried to get me on antidepresive but i refused since I am young and I dont really feel anxious nor depressed... i work i go to college I love life.... Not sure what else to try.... Please let me know if you find any solution

In_the_bardo profile image
In_the_bardo in reply to Dalton1

Dalton, hello. Have you tried breathing exercises? I think it’s the only medically agreed way of managing symptoms of dysfunctional breathing. I don’t know whether that’s what *you* have, of course, but if your doctor seems satisfied that there’s not anything else going on in your chest, DB seems like a plausible diagnosis. Suggestion of SSRIs would seem to confirm that as your doctor’s diagnosis, too, as anxiety and DB are strongly correlative. Should say, short courses of SSRIs aren’t only for depression; they can also be to help with anxiety and obsessive thinking. I’ve plenty of people in my life who don’t identify as depressed but have - and do - use SSRIs to manage anxiety/OCD, and lead very rich and impressive lives. This isn’t to convince you one way or the other, but is to say that they’re not as dramatic as they might first sound. Anyway, good luck your end. Let me know if you start finding some relief.

Dalton1 profile image
Dalton1 in reply to In_the_bardo

Nope I didnt try breathing exercises but I probably should.... And also start to train some sport would be good..

Lysistrata profile image
LysistrataAdministrator

Hi, that sounds tough! Have you seen a respiratory physio at all since they prescribed the breathing exercises? Who actually prescribed the exercises? Like asthma, breathing dysfunction is not one size fits all, and it may be the exercises you're doing aren't quite right for you, or you weren't shown them in a way that works for you. I've found that some drs are less knowledgeable in this area than they may think they are. Being a respiratory specialist doesn't mean they know everything, and this is really the domain of physios. Ideally, even if a physio did initially show you, you would have follow up sessions to see how things are going and discuss the exercises.

As four4 said, a single good lung function test in itself isn't really enough to prove that your asthma is controlled and all symptoms are due to dysfunctional breathing. It's a snapshot. Asthma is a variable condition, even within a single day, and control is really more assessed over a period of time - the control questionnaires look at how you've been over say 1-4 weeks and ask questions other than just spirometry. Asthma and dysfunctional breathing can set each other off, it's not an either-or binary thing - so if your asthma isn't as controlled as you've been told, it may make it harder to get on top of the dysfunctional breathing symptoms.

This post may help with the differences - of course anxiety can overlap with dysfunctional breathing and asthma and set off both for some people, but it is not the same thing! healthunlocked.com/asthmalu...

In_the_bardo profile image
In_the_bardo in reply to Lysistrata

I always like reading your posts. Super engaged and informative. So, diagnosis. I had classic uncontrolled-asthma aetiology for a couple of years (lockdown, should have done something about it sooner, didn't), which involved variable and restricted peak flows, wheezing, responsiveness to salbutamol, (minor, fortunately) asthma attacks. I finally went to a specialist and had a lung-function test last September, which was fine outside of a FeNo result around 50, which is significant inflammation. I was out on Relvar 184/22 and within a month, had lost the wheeze, was able to exercise again and had a peak flow settle at 700 (and I don’t think it’s meaningfully moved since). The symptoms I now experience (above) are qualitatively different from my asthma symptoms and, crucially, don’t really respond to salbutamol. Second lung function test in February had FeNo levels down to around 25, which is on the high side of normal range. That’s the more nuanced report of how my specialist arrived at diagnosis of dysfunctional breathing (deductive reasoning, I guess), which, most days, feels fairly rational to me.

He was pretty useless with the treatment side of the diagnosis though. He told me to Google it, and that was about it. I’ve religiously stuck to pretty much the first set of exercises I found, but your post encourages me to go back and review other exercise and, actually, there’s a lot of different approaches, and the approach I use seems pretty aggressive. (Breath holding, fairly deep intakes etc, which might explain why I get diaphragmatic pain quite so often). I wonder if some of the gentler exercise might be a better place for me to start. I’ll try. Thank you.

Lysistrata profile image
LysistrataAdministrator in reply to In_the_bardo

Thanks!

Yes, that makes sense with the symptoms. From your original post it looked like at least some symptoms weren't really asthma, but it was hard to tell if you might have ongoing asthma as well setting the dysfunctional breathing off

The good spirometry on its own isn't enough to show asthma control - and nor is FENO on its own! But from the other things you say it does make sense that the asthma seems reasonably settled.

Shame you didn't get to see a respiratory physio though. It does feel like some drs just think breathing pattern disorder is oh not asthma, not my problem, not life-threatening, leave the patient to sort it as it doesn't really matter. Which, as you've found, is not the case!! It's helpful to have someone expert to assess and treat you for the breathing pattern issues specifically, but I think some doctors in reality don't really know that much about it, and don't value physios and what they do. I've had one consultant who outright told me they weren't at all helpful, and one who talked the talk about how great they are and then dismissed anything they said that she didn't agree with.

Poobah has given some helpful advice below - I agree it might be worth seeing if you can ask for a referral or, if you can afford it, finding someone private.

Poobah profile image
Poobah

I read somewhere it takes a minimum of 12 weeks to see any improvement from regular breathing exercises. I'm pleased to say that when sitting etc I'm good and have mastered the right method and that really helps my lung health.

I find it hardest when I'm moving, walking, going upstairs to stick to the correct method of breathing, and I've been doing exercises for about 4 years. I have to concentrate otherwise I will inhale through my mouth when walking and understanding why that's bad for one's lungs goes along way to helping me persevere.

Nose breathing slows down the speed of inhalation, warms the breath, mixes it with nitric oxide and this improves the lungs ability to absorb oxygen as well as enables the whole lung to function, not just the upper half - nitric oxide is key in lung function. And whole lung function strengthens the diaphragm. We're less likely to have chest infections as the process of nose breathing tackles inhaled germs because of its filtration system. That's one thing I've really noticed, a definite reduction in infections in the respiratory tract.

Persevere and practice while doing a variety of activities - start with walking, sedentary exercises alone aren't enough in my experience. And rather than mouth breathing if you feel short of breath, stop walking and nose breath until you feel ready to walk again.

In_the_bardo profile image
In_the_bardo in reply to Poobah

Poobah, this is a much appreciated reply. I didn’t know the information about a rough 12-week threshold; that’s helped settle my commitment to the exercises for a while yet. I hear you on the nasal breathing: I’ve a deviated septum, which doesn’t help, but I’m definitely improving the time spent breath through my nose. It’s also good to read of your progress. Slow but steady. Gives me a little hope, for which thank you.

Tugun profile image
Tugun

Hi,

I don't know anything about dysfunctional breathing but the comment from Poobah about the Nitric Oxide was very interesting. I can only comment from my own experiences.

Tightness of Chest - two things.

a) Silent asthma - where you are not wheezing but it's still asthma and quite constrictive.

b) After a severe chest infection - lots of coughing and asthma, I needed to go to my chiropractor who was able to work on my rib muscles and my diaphragm. They were out and not working properly. He did both osteopathic work (Mostly muscles and ligaments) as well as chiropractic so I would recommend visiting an osteopath - just to see if it helps.

Are you still taking your asthma medication?

In_the_bardo profile image
In_the_bardo in reply to Tugun

Thanks, Tugun. I am taking medication, Relvar 184/22. Before I moved on to this I had classic asthmatic symptoms, a very variable peak flow and a FeNo up in the 50s. Since starting this medication (last September), my peak flow has stabilised, classic asthma symptoms (wheeze) have stopped and a recent FeNo had me in (just) the normal range. That’s why I suspect it’s not silent asthma. Osteopathy’s an interesting suggestion: I get a lot of rib pain.

Tugun profile image
Tugun in reply to In_the_bardo

Wishing you all the best In_the_bardo. Let us know how you are going and what helped. There are quite a lot of excellent suggestions in the replies.

Poobah profile image
Poobah

I noticed that you haven't been referred to a specialist respiratory physiotherapist. Unfortunate, as I found my referral really useful and they encouraged me to explore Buteyko, which pretty much reflected the exercises I was given by the physio.

Just had my asthma review this week and my asthma nurse sent me this (you may find useful) : 159.203.137.105/physiothera...

AN also sent me links for: Videos - Buteyko Breathing Association

Buteyko Breathing Asthma Help - Buteyko Breathing Association

buteykobreathing.org/

I've used physio for non-asthma stuff with great success and a couple of private sessions probably cost £150 in total, but money well spent as I was in pain and taking ibuprofen is not possible for me while waiting 12 weeks for a NHS appointment. There are also some very useful physio vids of YouTube (just check they're physiotherapists or physical therapists rather than enthusiastic amateurs!).

In_the_bardo profile image
In_the_bardo in reply to Poobah

Thanks, Poobah. Good to hear that physio has really helped you. I have a suspicion that, although committed to breathing exercises, I’m not actually doing them properly, the mechanics of them somehow wrong. I get a lot of pain in my diaphragm, which suggests I’m breathing *too* deeply. Anyway, appreciate your engagement.

Scottldn profile image
Scottldn

Hi there,

I was diagnosed with breathing pattern disorder around a year and a half ago, after around a year of non stop troubles and worries.

Always good to cross out other potential medical issues it could be, but does get very difficult at times. I know mine was probably due to repeat lung infections over many years, and my lungs weren't in a great state in my opinion, even coughed up blood once. Bronchoscopy, CT scan and more seemed to confirm nothing in terms of tangible lung troubles.

It is though very tough when it seems to be confused with medical anxiety, when it is the air hunger that leads to anxiety, and seemingly not the other way round. However, there is a connection and less worrying certainly ended up helping eventually.

Simon Spire and his free essay online for air hunger was probably the turning point for me. Reading and learning about the Alexander technique is useful, but takes a long time to get one's head around. The simple "Constructive rest" which you can google was an absolute game changer for me. If you find some improvement with the lying up as you suggested, I think this could really help.

Simon also runs a course- although I was had already had my main improvement by the time it was published online, I've still signed up to it and found it of huge value.

I found breathing retraining useful with the nhs, but not as much as what I'd already learnt from Simon Spire, Missy Vineyard and Jessica Wolf. If sending over some of the reading I did would be of interest, please feel free to let me know.

It took me a good year and a half for things to improve, but it is a new lease of life and a huge appreciation of simple every day life now that things are better, albeit not fully back to my standard breathing rhythm from years before.

I also found some help with black seed oil after some months, and sea moss definitely helped me (again after a few months). Vitamin D, b12 were I believe also of some use possibly.

Wishing you all the best, I know how life changing it can be to struggle for breath.

Scott

In_the_bardo profile image
In_the_bardo in reply to Scottldn

Really appreciate this, Scott. I think the maddening thing is the disparity between diagnosis (BD seems such a trivial thing) and just how hard and disruptive the symptoms can be. It’s a daily thing in my life now, the cycle of breathlessness, rib pain, throat tightness, chest feeling stretched out like a balloon, always the impossible to ignore doomthinking of “but what if it’s more serious”…and so anxiously repeat cycle. So hard to imagine finding me way back out of this. Anyway, thanks for engaging and giving me hope that there is a patient, structured way to being able to relegate breathing to being a happy, unconscious process again and yes, I’d love to take you up on your offer of some suggested reading. Thank you.

hilary39 profile image
hilary39

This is a really helpful thread--thank you everyone!

I need to get in to see a respiratory therapist, I never have actually in spite of having asthma for 30+ years and severe asthma for a decade.

I do pursed lip, diaphragmatic, and Butekyo breathing here and there but never consistently. This is a good reminder that I should try to do them daily and especially as I'm coming out of a miserable almost month-long flare.

JulieVictoria profile image
JulieVictoria

Are you seeing a physiotherapist for the retraining? I did the retraining with four weekly physio sessions. I started laid on a bed. Then sat up with hands on head with elbows out to side (hard to describe). And now I can just sit and do it. But on days when my asthma is less well controlled. The symptoms are there and that tells me it is the asthma. On days when symptoms aren’t there it tells me my physio is working. Who is doing the retraining with you?

Babyboy12 profile image
Babyboy12

Good morning bardo I went to my doctors at the hospital as I am still getting pain in my chest and allways having chest infections even when I walk up and down the stairs I get out of breath and my chest hurts. I have asthma and mild bronchiectasis. I received a letter from the hospital say this been going on since 2009 and now she thinks it's could be because i have dysfunctional breathing and they want me to have a CPET test and to go and see someone for chest physiotherapists. Could some of you explain want this is please thanks

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