I wanted to ask other suffers about their symptoms. I was diagnosed with asthma when I was really young I'm now 24 and up until last year it never bothered me much. Last year at this sort of time I went to my doctors to get a dose of steroids as I sometimes did when my asthma had been bad. I'd been struggling when exercising and a bit breathless. I went back on the brown inhaler and got a dose of steroids but it continued to get worse. A week later I was off work as I work in a contact centre and I was so breathless talking all day was impossible. I was off for 4 weeks, had chest X-rays, a few visits to a and e, etc. since then I've been put on forstair, montelukast a spacer and regular anti histamines and a nose spray for the tightness in my throat. When bad I'm using my blue inhaler though my spacer 10+ times a day.
All along I very rarely wheeze and this has confused many doctors. My question is do you have to wheeze to have asthma? My main problem is breathlessness and its really affecting my life. This time of year it's really bad and if its windy outside it gets much much worse. The latest doctor has said as there's no wheeze he isn't convinced its asthma. He's not changed my medication but referred me to a specialist. I'm really fed up as I'm off work again and still a year later no answers! Does anyone else have similar problems where they are breathless but don't wheeze? My doctor said when he listened to my chest it sounded fine and the air goes in and out nicely. I understand this as it feels like it does but only to a point. I can't breathe deeply so when talking I run out of air very quickly and it's very tiring. If I try to fill my lungs I get a really uncomfortable feeling like you do when you've been winded. I'm so confused?
Any help advice or experiences would be much appreciated
I can't really offer too much in the way of advice, but I can empathise!
I am a severe asthmatic, yet vary rarely wheeze either!! I have also lost control over my asthma over a relatively short period of time! I also see a Resp consultant. Don't panic about seeing them, they shouldn't dismiss you, they shouldn't question your asthma diagnosis and should try to put things in place to help you manage your asthma better. It common practice for GPs to refer at step 4 or 5, sounds as though you're currently step 4 as you haven't mentioned maintenance oral steroids? Hopefully this is your GP being proactive and helping you to try and achieve more control before ending up on long term pred?
This probably doesn't help much, just trying to let you know you're not on your own!
Laura
Hi Laura,
Thankyou for that it makes me feel less nuts that someone else doesn't always squeak. I saw the specialist previously and he just said ""your a bit overweight, loose weight"". I refused to go back to him as I'd gone to say I was struggling to lose weight as I couldn't excercise, he just kept saying ""lose weight"". I'd like to lose weight but i refuse to crash diet as ill end up ill, I've been having sessions with a personal trainer and I've lost half a stone but its all had the breaks slammed on again :(. I'm seeing a different specialist this time and im determined they will actually listen as I'm not leaving till someone suggests something. Do you usually find it bad this time of year? Did your doctor do an action plan? Have you tried anything not medical for yours?
Lisa
Hi Lisa and welcome!
I can definitely empathise too. I have rather odd asthma ad I very rarely wheeze so I've heard the 'but your chest sounds clear' a lot when I'm struggling! I definitely don't present typically so have been dismissed in the past and told it's not asthma (and now I know it is). That is so very unhelpful of the consultant to just tell you to lose weight without even bothering to look into why you can't! Even if you could it's not necessarily a quick fix, but I think sometimes they just say it when they can't think of anything else - I was told to lose weight once to help a shoulder problem, and I wasn't really even overweight at the time either (I have been but wasn't then, and even if `I had he said only a little - and for my shoulder?!) I really hope that the new consultant is more helpful; i did get to see a helpful one in the end with the lungs.
My asthma is generally moderate persistent but hard to control, but my lungs have been having a bit of a strop over the last month or so and now been admitted twice and had a few adventures with OOH and ambos. I used to rarely wheeze and have 'clear' otherwise; now when I am bad my chest tends to go quiet! It confused the ambulance people when they got called out as they were very much in 'wheeze' mode but actually although drs can get fixated on wheezes as well I've been lucky as the ones I've seen during this period have recognised that lack of air movement is also a problem and have assessed me (eg whether nebulisers are working) by checking air movement. My GP pointed out that a wheeze does require some air to be moving! But before all this I didn't even have the chest going quiet thing so understand your frustration at the way you feel not matching up with what drs are hearing.
Basically asthma is a lot more variable than some medical professionals recognise, though some are v good with it (I had a really good one in A&E last week who was prepared to think outside the box and work with my actual history rather than some idealised asthma patient who ticks all the boxes). If you hang around this forum you will find others like you asthma-wise - I have and it's been really good to know I'm not alone and not imagining stuff as there are others with the same issues!
When is your appt with the new consultant?
Hi and welome from another non-wheezer and non-standard asthma sufferer. Drs rarely hear anything even when I'm really struggling, the best I've had is 'restricted air flow' but I had a chest infection at the time. My peak flow is much better than predicted and my spirometry results don't suggest asthma, however I respond to asthma medications and steroids.
Unfortunately, I have a hard time been heard, and getting the treatment I need so I can truly sympathise ! I often leave the gp empty handed when I know I need steroids or sometimes even a neb, just because my peak flow is 300 so isn't that bad (despite it being only 53% of my personal best, and I can be symptomatic at 450), and because my cheat sounds clear. It is very worrying to know you're struggling to breathe but no one will help you.
As for loosing weight, I know they use it as an excuse for everything, and sometime it can help, however I lost 3.5 stone and down to a BMI of 23 and my asthma got worse! So its not always the answer.
I understand entirely the symptoms you describe, when struggling I can't read the kids a story without getting really short of breath,and taking a big breath in takes a lot of effort and time. The heat has really affected me today and I'm finding myself taking lots of shallow breaths because it much less of a struggle. My chest gets really tight too, as though someone is hugging me too tight, and I have to force air out of my lungs otherwise they overinflate. Sometimes I start coughing too, which makes breathing even more difficult.
Currently I'm on seretide (steroid and laba) montelukast and antihistamine.
There are many more people on the forum who don't wheeze, so you're not alone. I hope your new consultant is more understanding and more helpful
Hi
I can't add much more I'm afraid but your asthma does sound a lot like mine (diagnosed young and then up and down in terms of treatment). Like others have said, asthma can present itself in the strangest of ways and not everyone wheezes. Strangely, the only time drs have heard a wheeze has been when I have had only had minor symptoms! Yes it can be frustrasting and lead to you doubting yourself but there are medics who understand this. I found an open minded GP and I always see him now, evenif it is a longer wait as I know he won't dismiss me. For me diagnosis was confirmed by the specialist due to the range of lung function tests they do and also with the fact that I do respon very well to steroids. I now have an action plan from my GP which states that I don't wheeze but have x and y symptoms. With this, I got treated very quickly at OOH where I usually get dismissed.
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Hi Strangely, the only time drs have heard a wheeze has been when I have had only had minor symptoms!
Me too. I think most times people have heard wheezes I'm actually breathing reasonably well - i.e. 85% or 90% of personal best. Though when i was in A&E in April a French doctor made me do a forced exhale as if I were doing a PFT and heard a wheeze at the end of it. On the basis of that wheeze he readmitted me A&E. Unfortunately, his report was lost or never written up so I became the asthma with no wheeze when I went up to the ward. Sigh.
• in reply to
Though when i was in A&E in April a French doctor made me do a forced exhale as if I were doing a PFT and heard a wheeze at the end of it.
I very often hear myself wheeze when doing peak flow, but have never been asked to do this when they're listening to my chest, in fact my GP doesn't usually listen as I exhale.
• in reply to
Hi Strangely, the only time drs have heard a wheeze has been when I have had only had minor symptoms!
Me too. I think most times people have heard wheezes I'm actually breathing reasonably well - i.e. 85% or 90% of personal best. Though when i was in A&E in April a French doctor made me do a forced exhale as if I were doing a PFT and heard a wheeze at the end of it. On the basis of that wheeze he readmitted me A&E. Unfortunately, his report was lost or never written up so I became the asthma with no wheeze when I went up to the ward. Sigh.
ooh interesting Beth! Though v frustrating for you. I have just remembered that the first time I was admitted a month ago the consultant did pretty much that exact manoeuvre with me. I don't know what he heard, but after that he started saying things about staying overnight (said at first up to me, then I kind of froze and said I didn't know so decided on the basis of me having got worse over a few days).
I don't know how that influenced his decision-making, though I did have a bit of a sense of them using wheeze as a measure after that. Not a good idea IMO, since n the Sat at OOH I had a wheeze and on the Sunday I had none - it's not reliable with me, air movement is much better as a marker!
Thankyou!!!
You have no idea how helpful this is! After going to the doctors yesterday and all the trips I've had to hosp and things before I was starting to think I was nuts. Doctors and nurses kept dismissing me saying I was having a panic attack. I've had panic attacks before and these weren't the same. They told me to stop ""over breathing"". Everytime the nebuliser fixed it. Sometimes they refused it though and sent me home feeling awfull and like I didn't know my own body.
I'm so glad I'm not the only one who doesn't wheeze. I personally have always agreed it was asthma, it was the original diagnosis and the medication controls it most of the time. Have you found anything that works well? I'm worried about time off work and things so any suggestions on how you manage things yourselves would be great. I've been working really hard on my fitness and I wanted to try a 5 or 10k next year. I feel so much more positive now!!!
Thank you x
Hi Lisa
welcome to the forum! I am another non wheezer, I only very occasionaly wheeze and my chest is usually lovely and clear even when I am feeling really poorly, I have been to my doctors many times and been told I am fine because there is no wheeze.I also have normal lung function tests and my peak flow only gets really low when i am having a really bad attack. But I do respond well to asthma medication so my consultant has decided that it is asthma. My main symptoms are non stop coughing and shortness of breath, But I am often made to feel like a fraud because i dont always wheeze.
I hope your consultant is helpful.
lejaya
I sympathise with the panic attack thing. One (not so helpful) nurse at my surgery was always telling me I was having a panic attack (I also have a past history with them) although I was saying they feel totally different. I try not to see her for asthma now as even with a diagnosis from the hospital, she is still adamant that I panic when coughing so my asthma attacks are infact panic attacks (she is the only one who believes this).
Hopefully, you will see your consultant too. If you respond well to treatment, they will probably listen to your symptoms and do lung function tests. Don't worry about them not hearing anything as I was having a good day at my first appointment but the cons was more interested in what I had to say. If it is confirmed as asthma, there are lots of other treatments you can try. If you are taking a brown inhaler (sorry I can't remember what you said you were on) they would probably try a combination inhaler and then there are other tablets. They will also probably look into what is causing your asthma (mine is allergic but at the moment they are seeing if there is any possibility of reflux too) which will help you to treat the underlying cause. What I am trying to say is that once a diagnosis is confirmed, the cons has a lot of other treatments they can try to help you get more control - therefore making work easier and helping you to complete your running goals (I also run 10ks when well enough).
Do you record your symtpms, peak flow etc? I found this very useful to help me understand my triggers better but also to shown my GP and cons how much it impacts my life.
I am a non-wheezer and have had problems in the past. (Diagnosed 26 years ago.) Appointments are much easier now, as I feel more confident to say I have non-classic asthma - normal peak flow, no wheeze. Fortunately, I saw a consultant in my 30's (now 50) who told me to go by my symptoms and not the peak flow and it was the best advice ever.
My diagnosis of asthma was confirmed because I do respond to steroids and nebuliser so well. My asthma is quick to go out of control and slow to calm down but I have had very calm periods too.
I just wanted to add too, as said on someone's previous post, find a GP who understands that your asthma may be a bit different. I don't have a lot of luck with asthma nurses unless they are extremely experienced or I assume more qualified as I don't fit in with the norm.
Definitely agree with finding a good GP, esp as you can feed back to them and discuss things if you aren't sure re the cons appt. Mine likes to know what's going on and says 'come back and tell me how it was'.
I forgot to say that I also have good PF (predicted best 470 actual best 600) and on the face of it, normal spirometry. BUT if you look more closely at the spiro as one cons did, it's more complex as I respond to reliever but one time, it pushed up the FVC to well over predicted whereas the FEV1 was at 90% of predicted; I believe the ratio is important too. Another cons only looked at the raw numbers and compared to predicted best which doesn't work well for me.
I also -though I didn't at first - respond moderately well to medication. Had this weird thing where I didn't respond to steroids (so they thought not asthma - can see why though it was frustrating) then I did and not I can't get off the things as my lungs create! (Trying tapering again, crossed fingers). I do respond well to nebulisers (especially when they have atrovent in them as well) and last time a very nice out of the box thinking dr tried magnesium which I also responded to.
I have been there with the 'over breathing' etc too though. I do/did actually have a breathing pattern issue as well but physio said it was caused by the asthma, wasn't anxiety and I really think I've got somewhere with that though will still have to bear it in mind. It's not been mentioned recently though despite the misbehaving lungs and a GP who's not seen me for a while commented on the improvement. So yeah, you might not be breathing in the most optimal way but it doesn't mean you haven't got asthma as that hardly encourages good breathing!
Just wanted to add that your asthma shouldn't stop you running 5k, 10k or marathons, you just need to listen to your body, run when you're well controlled, rest when its not. Make sure you warm up well beforehand, and take your reliever. I ran plenty of 5&10ks the other year, unfortunately I don't have enough control to run for the bus at the minute which is a bit frustrating. I used to find taking 2 puffs,the 2 puffs 5 minutes later and 10 minutes before exercise was my 'special formula'!
Absolutely staggered that doctors appear to be diagnosing asthma on the basis of whether you wheeze or not! My understanding is that all cases present different symptoms but also that all have one thing in common: the effect is reversible and lung function can be improved by a Beta-2 agonist (like salbutamol). I have never wheezed and I also have fixed small airways obstruction, but I have still been diagnosed with late-onset asthma because I get a 17% improvement in lung function with Ventolin. This is important because I can increase my lung function using inhalers from 50-60% and thereby reduce chest tightness. Without that diagnosis, I would never have been given the chance!
I know how you feel, i am working with my GP at the moment ruling out any other conditions that may be causing my breathlessness.
One of which is vocal cord dysfunction as I too used to work in a call centre after 7 years I had to change jobs as I kept getting Laryngitis and having speech problems. Now every time my asthma plays up my voice is the first to go.
I was reading this article on asthma research into inflammation.
It is now understood that all asthmatics have some degree of chronic (it’s always there) underlying airway inflammation. While it was once thought to be all the same, researchers now understand there are 4 types of airway inflammation in asthma.
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