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Esad profile image
Esad
46 Replies

Hello, I'm new here, and feel a bit of a fraud as I havent actually been diagnosed. I've been having some symptoms, and research on the Internet suggests asthma might be a possible cause of my symptoms.

My symptoms include waking in the night feeling out of breath, coughing during the day that I can't stop, a tight feeling in my chest.

I've been to the GP and had some tests, but they've been inconclusive, and they think I'm experiencing anxiety.

I know this is quite vague, but I'm just wondering if I should go back to my GP, or if it does sound like anxiety.

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Esad
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46 Replies
Chip_y2kuk profile image
Chip_y2kuk

First thing is welcome to the group... the next thing is: until it's proven either way it's "something" and until you know what "something" is .... you can't work on fixing/managing it

I spent 8 years backwards and forwards and unfortunately for me a bit like you they said as It couldn't be proven I had asthma (diagnosed at 9 months old) it must be anxiety .... I kept getting breathless and really high heart rates (somewhere along the line I started getting frequent chest infections) ... after 8 years they found it; i'm asthmatic but I also have another airway condition, that normally comes with another condition COPD or asthma and I don't have COPD.... so the theory for the last 2 years is that I have an odd subtype of asthma that produces lots of mucus... mixed with this other condition isn't good (but makes a lot of sense) ... who knew there where literally hundreds of types of asthma (most we don't know much about)

So I would go back to your gp and ask for more testing or a referral... and to my knowledge anxiety wouldn't wake you of a night breathless... you can't be anxious in your sleep ... but I may be wrong on that.

Hope that helps

Chip

Esad profile image
Esad in reply to Chip_y2kuk

Thank you for your reply. I didn't know there were different types of asthma, in fact I know very little except through researching my symptoms.

I will try get another appointment with the gp and try and get some answers.

Chip_y2kuk profile image
Chip_y2kuk in reply to Esad

Neither did I until 18-24 months ago ... when one of the doctors wrote it in the letter to my GP (I get a copy) and I asked them about it on my next visit.

it also helps to rubbish the "no wheeze not asthma" doctors you will no doubt encounter on your travels (I very rarely wheeze) ... as not all "asthma" presents the same (it can't when there are hundreds of different types)

Good luck.

Esad profile image
Esad in reply to Chip_y2kuk

Yes, that was mentioned on one of the visits, actually. They said my oxygen levels were fine and I wasn't wheezing so my lungs were working fine. It was after another visit a few weeks later before they sent me to the nurse for some breathing tests.

peege profile image
peege in reply to Chip_y2kuk

Hi Chip, Bronchiectasis causes plenty of mucus, most people with it need to do physio to get it up n out. Just a thought. P

Chip_y2kuk profile image
Chip_y2kuk in reply to peege

I have a respiratory physio and I do mucus clearance (actually on a nebuliser sucking saline now) .. I don't have bronchiectasis however.

Mandevilla profile image
Mandevilla

It doesn't matter what is causing it, if it's waking you up in the night and causing you pain or discomfort, it needs diagnosing and fixing, whether it's asthma, anxiety or something else! So don't let them dismiss you. Keep pushing. Medics are far too prone to dismiss symptoms as anxiety when they are not. I even ended up in A&E several times with what I now know were asthma attacks, only to be told that I was suffering from anxiety.

It might be beneficial for you to call the helpline and talk your symptoms through with them. They can't give you a diagnosis over the phone, obviously, nor prescribe treatment, but they can advise on the best way of approaching your GP and what things you should be asking for to help get you a diagnosis.

Esad profile image
Esad in reply to Mandevilla

Yes you're right, something isn't right. I bet that was scary to be told it was anxiety when you were having an asthma attack! I'm finding it scary now, not knowing for sure.

Oh I saw a number to call but wasn't sure what for. Yes, that might be useful, as long as it doesn't matter that I haven't been diagnosed?

I hope I can do it with starting my cough off ha ha, it seems to happen if I talk a lot and its really awkward on the phone when it won't stop 🫣

Thank you for your message

peege profile image
peege in reply to Esad

It won't matter that youre not diagnosed yet, they're great & will give you guidance on how to get the diagnosis from your medics. 0300 222 5800 uk office hours

Esad profile image
Esad in reply to peege

Thank you

Mandevilla profile image
Mandevilla in reply to Esad

Please don't let your cough put you off calling them - it could even be helpful as they get to hear what the problem is. And don't forget, they are used to people calling them with all kinds of breathing problems - they're used to people struggling to communicate because of breathing issues. And as @peege says, they're not just there for people who are already diagnosed.

Esad profile image
Esad in reply to Mandevilla

Thank you, I find it quite embarrassing so I'm reluctant to put myself in those situations, but you're right, I guess they will be used to it.

Mandevilla profile image
Mandevilla in reply to Esad

I think we all go through the embarrassment at the start - and then you realise just how many people have asthma or some other kind of breathing-related difficulty and that no one is noticing your breathing issues a quarter as much as you are!

When I first got diagnosed, I ended up with a couple of flareups that were worse than they needed to be because I delayed using my blue inhaler until I could be out of sight of everyone else. When I realised that delaying made the flareup worse and longer-lasting, I decided I had to brave everyone's stares and comments and use the inhaler the moment I needed it. And guess what...absolutely no one noticed at all! And in all the months since, I've had one comment from someone nearby who has asthma themselves, who just remarked "Asthma playing up? You ok now?" after.

Anyway, the helpline people are there specifically to help people with lung issues - and it's not like you're going to ever meet them in real life - so don't let embarrassment stand in the way of getting some practical help.

Esad profile image
Esad in reply to Mandevilla

You're right, thank you :-)

Patk1 profile image
Patk1

Hiy.welcome to the forum.anxiety can and does cause some breathing difficulties in some people.do YOU think its anxiety related? IF not,go back until Yr heard x

Esad profile image
Esad in reply to Patk1

Thank you for your message. No personally, I don't feel particularly anxious or anything. I'm otherwise sleeping well etc. Don't get me wrong, I get concerned when I get short of breath for no reason, or cough and can't stop , but that feeling comes after the symptoms have started.

Patk1 profile image
Patk1 in reply to Esad

Understandable.go back and be heard

Scrofulous profile image
Scrofulous

I would go back to your GP. I had asthma for many years before diagnosis. One particularly snippy GP even magnanimously decided to ' give me the benefit of the doubt' after my umpteenth visit with uncontrollable coughing.

Gareth57 profile image
Gareth57 in reply to Scrofulous

Oh I can't stand those patronising smug doctors who seem unwilling to consider variations in symptoms.

Esad profile image
Esad in reply to Gareth57

It sounds quite common then?

Mandevilla profile image
Mandevilla in reply to Esad

Asthma or GPs being dismissive? Both are common, I'm afraid!

My pet favourite was being told I needed to practice mindfulness and then my breathing issues (which were all in my mind, according to the GP) would magically go away!

Esad profile image
Esad in reply to Mandevilla

Sorry, I meant the dismissive GP.Yes I was advised to download some relaxation videos from you tube.

Esad profile image
Esad in reply to Scrofulous

Oh wow, really?! Presumably you responded to medication and proved them wrong? Bet you got no apology?

Scrofulous profile image
Scrofulous in reply to Esad

Yes. Have been on meds for years now.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Hi Esad and welcome! This is definitely a good place to come if you're wondering about whether you have asthma - you're not a fraud. (I sometimes feel like one still though, even with a diagnosis of severe asthma).

I can't add much to the great replies from other people - as they've said, it is unfortunately very common for asthma to be dismissed as anxiety. And you've already said you don't feel anxious BEFORE the symptoms. You're very welcome to post here even if you aren't sure if you have asthma - and I definitely also recommend, as others have, calling the helpline to speak to the nurses. I agree that coughing and having difficulty breathing while you speak to them can only be a helpful thing -I've rung them while struggling before and they can tell and it's actually very useful. We aren't here to diagnose and neither are they but I will say that waking at night and coughing are common with asthma so it's certainly a possibility that should be investigated properly. You may find this page from the website useful if you haven't already seen it: asthmaandlung.org.uk/condit...

Asthma is a variable condition and that always seems to be the thing that gets forgotten - so not only can you be having asthma symptoms or an asthma flare but not wheezing, but you could also be wheezing at other times, and feeling fine when you see the GP so no wheeze, normal breathing tests.

You absolutely also do NOT need to have reduced saturations on the finger monitor to have asthma (that's what they'll be talking about when they say your oxygen levels are fine). But along with the wheeze, this is unfortunately another common myth among healthcare professionals. I'm sharing this post not because I think you'll be doing this but to show the official view on using oxygen saturation levels and monitoring in asthma - this was written by the ALUK nurses and medical advisor: healthunlocked.com/asthmalu...

From this post:

According to UK and US Asthma guidelines there is NO PLACE for routine oxygen monitoring in people with asthma. In the rare cases where it is useful, it will be on the advice of a hospital consultant who is specialist in asthma.

When someone is having an increase in asthma symptoms or starting an asthma attack there are lots of things that change in the body before oxygen levels drop. In fact, your body breathes faster and your heart pumps faster to help keep your oxygen levels within normal limits.

This other post is long and not all of it may be relevant to you right now, but it could give you an idea about the differences between asthma and anxiety so you feel more confident with the GP or nurse: healthunlocked.com/asthmauk...

I hope this helps! We are here to support so please ask away when you have questions.

Esad profile image
Esad in reply to Lysistrata

Thank you for your reply, I haven't had a chance to read through the links yet, but I will do that later tonight. I may have more questions, sorry!I tried the helpline but was engaged, so I will have to try later. I only get my break to ring.

I have made a GP appointment for 3 weeks time, so have a deadline to arm myself with questions etc.

In the meantime (and I know you can't give medical advice) but is there anything I can do to help. The middle of the night is a lonely time to feel short of breath! I also get a tight pressure type feeling, perhaps deep heat or something may help? Don't worry if you can't answer this.

Mandevilla profile image
Mandevilla in reply to Esad

You could try adjusting your sleeping position to see if it helps - try raising the head of your bed or propping yourself up on pillows to see if a more upright sleeping position helps. I find the worse my asthma is, the more upright I have to sleep!

Two things I find I do instinctively when I get that tight feeling - one is to rub my breastbone in a circular motion and the other is to hold something warm (mug of tea, hot water bottle etc) against it. I don't think it actually helps remove the pain, more that by sending a load of other sensory signals from the same area, the brain doesn't 'hear' the pain signals so clearly.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Mandevilla

I was going to suggest the same thing re sleeping position. Though I always slide down and then end up at square 1! I'm a side sleeper who can end up on my back, but the side can sometimes be ok - I also can find that putting pillows behind my back to keep me on my side can help. Esad , the feeling of pressure you describe is one I get with asthma, though I obviously can't say if yours is the same. My solution is unfortunately not very helpful (take my reliever) but it's worth sitting up and trying Mandevilla's suggestions.

 Also, while it's not necessarily anything in your bedroom causing these issues, since if you do have asthma it's typically worse at night anyway, it may be worth looking at your bedroom meanwhile and seeing if there are any easy changes you can make. While you probably don't want to make any radical changes or spend money without being sure whether you have asthma, you could look at things like whether you sleep with the window open (pollen or a colder room can be an asthma trigger) and whether there's a lot of dust that you could remove - dust can be an irritant even if you're not allergic to dust mites. (Be careful with this if you do it yourself as a faceful of dust while you clean under the bed probably won't help). If you were already planning to get a new pillow or are due for a new one, try one that's hypoallergenic. That kind of thing.

If there's anything that isn't hard to change and won't cause problems to do, then it might be worth a try. I would avoid anything like inhaling steam or using Vicks at home or other 'home remedies' you may see, even if it seems harmless and is advised for a cough. If you do have asthma, those things can be an asthma trigger for some people, even just plain steam - though others with asthma are fine with them.

If you find you're really struggling to breathe, please don't hesitate to call an ambulance/go to A&E. Advice on whether you may be about to have an asthma attack and what to do if so is here, and includes advice for when you haven't got a reliever inhaler. asthmaandlung.org.uk/condit...

If you're struggling to talk, eat or sleep because you can't breathe then get help asap - even if it isn't asthma it needs attention, as breathing is pretty important!

And please feel free to ask as many questions as you want! :)

Esad profile image
Esad in reply to Lysistrata

I shall give the sleeping position a go, I do often end up on my back, and I'm told I breathe noisy in my sleep! Some good ideas of things to look at in my room too, i do sleep with the window open, and (embarrassingly) it's more dusty than it ought to be (where does it all come from?!)

I will avoid any of the remedies, I had thought of vicks or cough medicine, but I'll skip that for now.

I appreciate the advice on what to do if things get worse too. I will have a good read.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Esad

I admit I do sleep with the window open and a fan when it's really warm, but in the current temperatures I wouldn't. I seem to have an internal thermostat where lungs decide it's too cold and they don't like it and will act up all night. I see a lot of stuff online about how a cold bedroom is good for you and you don't need the heating on at night in winter - that's definitely not always the case for lung problems, though challenging with recent energy issues!

I know what you mean about the dust! Never ending 😅

If your cough is asthma related then the cough syrup won't do much for it anyway - I don't know if it actually does work for other things.

It may be worth starting to note down when you feel the symptoms eg time of day etc, at work/home/out and about/if the weather affects them, and what seems to make them worse or better. If you're a woman and have periods, note whether symptoms change over the month with your cycle, or if you're menopausal, tell them that too.

All this information will be something you can present to the GP when you see them and will be useful whatever it turns out to be. It may be useful to know that stress actually can be an asthma trigger for some people - not as in the symptoms mimic asthma, but as in stress literally can cause asthma symptoms.

They should also ask you about family history of asthma and hayfever/eczema - they're often linked, and asthma can run in families though doesn't always, and so do other things. If you're not sure and your parents etc are there to ask, it's worth asking them before you see the GP.

I realise I'm probably dumping a lot of information on you, sorry! I realise it's all asthma focused and you don't want to focus on just one diagnosis, but thought I would share the bits I know about that they should really ask if asthma is being considered - and it should be at least considered.

Esad profile image
Esad in reply to Lysistrata

I've read through the links and found them all really useful, especially the differential diagnosis symptoms one. The description/location of the tightness I could relate to, as I've not found that information elsewhere. I've been writing a symptoms log/diary since the GP told me it was anxiety about 3 weeks ago, actually. It's been interesting even over those three weeks as until you write it down, you don't see patterns or increased frequency.

Yes, I did some research, there's no familial asthma, but there is eczema and hay fever.

Not dumping info at all, I really appreciate it, the more information the better. And I understand it could not be asthma at this stage but as someone said previously, it is something.

Esad profile image
Esad in reply to Mandevilla

Thank you, this is useful. Once I've woken up, I do tend to sit up more as this seems to help me, but I haven't tried actually sleeping more sat up, so will give it a go. I like the hot water bottle idea too, I will dig one out to have to hand :-)

Poobah profile image
Poobah in reply to Esad

Seeing as you're having to wait 3 weeks for an appointment, you may want to try breathing exercises to see if they help with your symptoms. This video shows a Buteyko breathing exercise used to calm dysfunctional breathing that can occur during asthma or if anxious (and it's difficult not to feel anxious if experiencing asthma symptoms). The exercise helps to build up nitric oxide in the nasal cavity and this is really helpful as nitric oxide is excellent for improving gas exchange in the lungs. We only deliver nitric oxide to the lungs when we breath through our nose; the nasal cavity is designed to make nitric oxide. If we breath through the mouth, we miss out on this important component. All the breaths in the exercise involves nasal breathing.

youtu.be/OlxPRdL0mig?si=lgM...

NB, my respiratory physiotherapist recommended the Buteyko method to me and I still practice it daily and during the night, when necessary.

Esad profile image
Esad in reply to Poobah

Thank you, this is interesting, definitely something I'll give a go.

ChrissieMons profile image
ChrissieMons

Just saying, it is possible to be anxious without realising it. Have a longish chat with a good friend and see if anything underlying comes up. It might not, so you can be more sure it's a physical, not a psychological thing.

Esad profile image
Esad in reply to ChrissieMons

Thank you for your suggestion, and there's nothing to lose :-)

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to ChrissieMons

I agree with considering all angles, but also wanted to add that both could be true at the same time - a physical issue, and an emotional/mental one that either interacts with the physical issue, or doesn't. I find some healthcare professionals can be rather binary about these things - if you have a hint of stress or anxiety then you can't possibly have a physical issue! Not all of them, but I and others have encountered that often enough that we feel like it can be tricky to even acknowledge we have emotions.

And stress/anxiety doesn't have the same physical impact on everyone, which they can also miss. It's a big asthma trigger for some people but my asthma is actually BETTER when I'm stressed - and I feel anxiety in my stomach and occasionally throat, not my breathing.

Esad, if you haven't already, it may be worth thinking about where you tend to feel anxiety and how it affects your body when you do. Not everyone will acknowledge that information, but you can always point it out that yes, you know anxiety can have a physical side and xyz is how that usually feels for you.

Mandevilla profile image
Mandevilla in reply to Lysistrata

Also, different types of anxiety can impact in different ways - I find that a sudden shock or upset that comes out of nowhere (e.g. car accident, phone call with bad news, an irate customer suddenly starts screaming at me) will trigger my asthma, but a more long-term anxiety won't (e.g. build up to an exam, medical appointment or anything else I'm nervous about doing)

Esad profile image
Esad in reply to Lysistrata

Yes I can relate to the feeling in the stomach when nervous or anxious, and it feels internal, like right in my core. The tightness/pressure feeling is more like a squeezing corset around my chest.

But interesting that stress/anxiety can cause an actual physical response, aswell as feeling that might mirror asthma.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Esad

The corset is exactly what I feel! Or like a boa constrictor (I named him Steve lol). I do sometimes get a weird breathing pattern when I'm anxious but I know it's not asthma - it feels completely different and is much less distracting. I tend to feel sick and get stomach cramps when I'm anxious - it can be a tell for me that I'm more bothered than I realised. If I had Crohn's or something instead of asthma it would probably be very confusing

I don't like to talk about the physical sensations of anxiety with medical people as I find they aren't always receptive to the idea that it feels different with asthma Vs anxiety, and that I do know the difference. I find they can sometimes be quick to jump to the mind-body link to explain everything away. That link is absolutely there, but it's more subtle and complex than is always acknowledged.

And as many people have pointed out, it is fairly normal to feel anxious when you are having difficulty breathing! I actually don't feel anxious about that, but I think it's a) because I'm used to it and b) because I've trained myself not to be and especially not to appear anxious.

pen5377 profile image
pen5377

My GP first thought I might have asthma one winter about 20 years ago when I struggled with my breathing over the course of several viral infections. the surgery had no testing facilities then, so I was referred to hospital. Come early June, having had 2 weeks in Lanzarote in April, no more infections, back to regular walks/cycling, I had the tests and was told not asthma, I was scoring 150% of predicted values, so probably my breathing issues were caused by anxiety exacerbating common or garden cough. So I continued to always have viral infections that always seemed hard to shake off with lingering coughing. 10 years later, repeat cycle of particularly bad infections, coughing and tight chest, saw GP, had to have course of steroids and one of several talks to come about seeking help out of hours if symptoms wouldn't settle. This time the practice nurse could do tests, she showed me the almost perfect tramlines of tests before ventolin, and half an hour later after inhaling 10 (I think) puffs of ventolin. So yes asthma, and my normal lung function score was (and is) about 150% of predicted values. As you might guess, my main trigger is viral infections and very cold weather, otherwise I'm now fine on my regular Fostair. In retrospect, I should not have felt embarrassed by the polite dismissal of that hospital consultant 20 years ago, I should have gone more often to the GPs and I might have had my asthma stabilised much sooner. So as others have said stick to your guns.

Esad profile image
Esad in reply to pen5377

Wow, so for such a long you just suffered 😟I'm glad you got there in the end and have got better and more controlled.

My breathing test came back normal, (though I wasn't given any medication, just some wierd breathing into a machine. )

pen5377 profile image
pen5377

That’s what happened when I saw the consultant all those years ago - I breathed into the machine, she said my results were 150 % of predicted values for my age/ sex and did no more. It was only when I saw the asthma nurse when I was still poorly after a chest infection 10 years later that she did the before and after tests which showed the difference between my lung capacity before and after my airways were opened up with ventolin. My peak flow measurement was down around 260 on the first measurement. After about 6-8 weeks of treatment it was up at 450, and that was the measurement that matters, not the predicted values as people can vary tremendously above or below. In fairness to the consultant, she was seeing me 4 months after I’d been poorly, and I had got better with a fortnight in a warm dry place, walking and cycling. The point is you can have a not bad looking capacity compared to the predicted values, but without knowing your own best scores it is meaningless. Lesson is to always try and see a doctor or nurse when you are really bad. That asthma nurse (now retired sadly) was a gem as a fellow asthma sufferer she understood the ups and downs and had great sway with the GPs, telling them when she thought strength of meds needed increasing, etc.

Esad profile image
Esad in reply to pen5377

OK, so 'normal' might not be normal for me! I guess normal ranges are only based on distribution curves and statistics, so there'll always be people outside of the ranges.

JazzySalmon profile image
JazzySalmon

Hi Esad. You sound exactly like me four years ago! I was told my asthma was anxiety, repeatedly. It is true that my asthma gets worse with anxiety, but it's still asthma. No wheezing and a lot of coughing for me too. Eventually I saw an asthma nurse outside my region while on holiday and she said this was a "totally normal, expected type of asthma", set me up with some inhalers and I've been mostly ok since.

I managed to get a blue inhaler by basically just begging them to let me try it and see if it would help. Anxiety might be improved by an inhaler through a placebo effect, but it wouldn't affect peak flow readings. Mine did. I gained another 20% lung capacity after using my blue inhaler during an attack! That's huge! No wonder I felt like I couldn't take a full breath!

After that they gave me a steroid inhaler and a LABA too and I've been mostly fine.

If you can see a different doctor at your practice, do try. Frequently one will take you seriously where another won't. It's so distressing when they just won't listen and I'm sorry this is happening to you. Best of luck.

Esad profile image
Esad in reply to JazzySalmon

I'm glad you're in a much better place than you were 4 years ago! It seems it was lucky you saw the other nurse! Though shame you had to practically beg to try medication.

What does it feel like, after the medication. Like you said you'd felt like you couldn't take a full breath, was it like a weight being taken off? Because 20% more capacity is a lot isn't it?! When I'm coughing, of feeling short of breath , I try to imagine getting more air in ... not that it works 🤣 I sometimes kind of sigh, to temporarily stretch my lungs I guess.

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