Hi all. Does anyone else have symptoms that just pass them by?
I've just had my first (phone) consultation with a new hospital clinic. Dr asked about my asthma symptoms, and I couldn't really answer - and realised afterwards that's probably because I've never been very good at noticing when I have symptoms. Cough - just don't register it; shortness of breath - just assume I'm unfit (tho I think you'd have to be pretty unfit to get SOB from emptying the washing machine as I did yesterday 😂). I think I'm most oblivious to wheezing - one friend (a physio) used to tell me on the phone she could hear me wheezing from the other side of the country, and could I please use my ventolin. Think my record, tho, is the time I heard a distressed kitten mewing plaintively outside my bedroom window, and got as far as looking in the garden before realising it was me...
Anyone else?
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Singinglouder
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Yup. I have had people point out to me that I was struggling before I did. Poor perception of symptoms actually an acknowledged issue some asthmatics have. I really struggle to explain my symptoms as I rarely notice them unless they are really bad or have completely cleared up 😅
For me I was told that as my PF is reliable to use that as an indicator to get the right treatment, as well as listen to people (like when they tell me I’m not talking normally etc 😅)
I think some of us just get used to a certain level of issue so our brains learn to ignore them... 😅
Glad it's not just me! Felt a bit daft when I was on the phone. I should know, really - before now, I've been to the dr about something else entirely, and had stethoscope and sats thingy on me before I could even mention the reason for my visit 😊.
Unfortunately, my PF isn't always a good indicator, and I'm a bit strange, in that I tend to poddle along about 70 -80% of best, but very rarely dip below that. When I was diagnosed, they had to stop the histamine challenge after the first, minute dose because I reacted so severely, and the consultant said it was a mystery to him how I hadn't ever ended up in A&E - and I still haven't (I was sent to him because they thought I might have TB, not because anyone suspected asthma 😂😂).
Yes, me as well. I have a track record of getting quite ill with asthma as I simply didn’t either notice, thought it would be whimpish not to just ignore or that it was me that is unfit. These days I have made a point of both actively becoming more aware, and taking others’ comments seriously. I have a friend, a doctor, who read me the riot act once.
A suggestion: if you have an activity you enjoy, then use that as a gage. For me it became snorkelling. I imagine myself doing it, and can then feel if it feels right, or if it seems too hard that day.
Mind you, that said, I still don’t trust myself. And I am particularly bad at using Ventolin even when it would be a good idea.
I gave up snorkelling, cos it was too much like hard work...
Yes, I'm bad at using my ventolin, too - I think, oh, it'll take me over the 3-4 times a week, which isn't quite the idea! It hasn't helped that the asthma nurse at my new surgery (I moved fairly recently) isn't sure I really have asthma, because my reversibility wasn't up to scratch; GP has referred me to hospital clinic, and I had full lung function tests and bloods done just before lockdown, and the technician was also unimpressed by my reversibility, which has made me feel - what's the point (even tho it does make a difference to my PF when I use it at home - I know, I'm daft). I'm hoping that now the consultant, who has seen all the test results, is of the opinion that I have an unusual presentation, but definitely still asthma, I might actually get back into better habits.
I’m like this too Wheezycat when it comes to salbutamol use. I stop and think “I’m I bad enough?” I recently decided that if I have a wheeze, I need it.
I am bracing myself for winter, a bad time of year for me. So one resolution is to ALWAYS take a puff before attempting to go for a walk etc. Not now at all, but when the cold comes.
Yes. I can and do Bury my head in the sand when it comes to symptoms. I also find it very hard to describe my symptoms to medical professionals. I think as Emma said because some are very low level (think background noise) I've learned to live with it and then because that has become my new 'normal' I can't always put my finger on it when asked. As the others have said those around you who know you well may be able to draw your attention to issues.
I also have the very bad habit of saying 'I'll see how I am in half an hour' but then don't take action. Very bad I know I'm trying to get better at realising that sometimes I need help and that's OK.
My mum is also very good at putting her foot down, putting me in the car and taking me to hospital. Usually with me in the passenger seat going 'I'm fine,'
I appreciate this didn't add anything that the others hadn't already said but I hope it makes you feel that your not on your own.
Thanks. 'People around me' is a bit of a problem at the moment. I've had to take ill health retirement (multiple health conditions, not really the asthma!), and as I was in a tied house I've also had to move, and I don't really know people here that well yet - I live alone and my immediate family live abroad - I've moved to be closer to uncles, but since I moved they've both had a serious downturn in their health. Sorry, this is sounding like a pity party, but basically it means I've got to decide for myself when I need help.
Well, shielding has been more of a challenge than I anticipated, but I'm used to living alone, and my family's been abroad a long time (mother retired abroad, then my brother and his family went to join her). Thank goodness for the phone! And also for groups like this - my family don't share most of my medical conditions, I seem to have copped the lot, so being able to talk to others in the same situation really helps 😊.
I’m rubbish at recognising my symptoms. I usually go into denial until work force me into AE !! Shielding has helped in a way as my husband can hear my cough change and I receive an instruction to use inhaler ... usually in a tone of voice I know not to ignore .. 😂 it’s helping me recognise a change in myself . Saying that, I’ve had an episode this week and still up and down at the moment , and have felt so unfit and SOB a lot more this summer .. but my consultant said last week it’s probably because I’m not fighting it and working through it like usual .. she said your probably looking after yourself a bit more 😂!!! She is also finally going to refer me to difficult asthma clinic at Addenbrookes... 😁🥳...
it’s nice to know we all ignore our bodies and indicators we are heading for a fall 😂😂it’s an unusual club to be in !!!!
Absolutely the same - unless I use my peak flow daily and record the results I can drift downwards without noticing - my target was 450 a few years ago and I had a desk based job - often found myself at 240-260 without realising! I don’t have a pronounced wheeze and my family have always been aware that the danger sign is me being quiet and choosing to do a jigsaw or read in my room! Everyone is different. My mother often comments that I sound a bit ‘off’ when I phone her as my spoken manner can be altered - deeper breath and pauses. When I check I see my PF is lower than it should be - annoying!,
I agree, when you live with asthma it’s so easy to almost get used to this way of living and what’s normal. I have been there myself. It may be good to mindfully start thinking of your symptoms and making a mental note and that way you can get right medication to live more optimal.
Make a simple diary for two weeks of your peak flow am/pm maybe and pay attention to if any food, pollen, dust mite, exercise, change in temperature sets you off?
Hi, before lockdown, I thought my asthma was quite well controlled. After a few weeks I realised I had been kidding myself on. You just get in the habit of reaching for your inhaler and then it builds up bit by bit. After a while you find you're just doing it out of habit and not realising what your body's going through. As I said, after a few weeks I realised how much I was using my inhaler. After phoning my doctor several times they started to get a bit concerned, until I explained it was down to me being able to monitor myself.
Hi I’m new to this but completely recognise myself letting symptoms pass by. Lost count of how many times I’ve laid in bed at night waiting for wheezing, coughing tightness to go away but in last 3 weeks have had to use reliever 10 times and hope it eases symptoms and last night worse than ever, seems to be happening more often hence waiting for call from go as just finished yet another course AB and feel no better. Most days I just ignore it and wait to feel bit better but getting fed up now as more bad days than good. Hubby usually states you’re wheezing again but I’m so used to it I ignore it. Oh well good luck I’m enjoying finding how many people are exactly same as me and just live with it
Seems we are all the same! I just assumed I was ‘someone who coughed’ until I had to share a bed on holiday with my adult daughter who couldn’t sleep because I coughed all night! Agree I always justify breathlessness as being unfit- and as I felt SOB just unpacking the shopping this week I really should take notice. And my friend on the phone noticed me puffing and a bit wheezy. Exactly your story. ( But no mewing cats!!) A gentle go at yoga last weekend triggered an acute attack which took me to A and E. Take care - we must listen to our bodies. Perhaps you need more medication? I’m back on high dose oral steroids and an additional steroid inhaler which I hope will work. Even though my PF is only just below 80% this doesn’t reflect my symptoms. Good luck with the new doctor.
Seems I’m definitely not alone 😊. Medication is why I’ve been referred - we just can’t find an inhaler that improves things (mostly I just get bad side effects, so overall things are worse - and yes, I’ve tried dry powder, and they’re even worse than mdi). Now waiting for a CT scan and more bloods. I’m managing on Montelukast, salbutamol and a packet of emergency pred (which of course I haven’t touched, I never think I’m bad enough). Hope you improve soon, too.
I get a bad reaction to the sabutomol inhaler too. I have been given the powder reliever to try as I can’t use the other one as it makes me worse. I then don’t use it when I need to because the effects are so bad.
I can only use the powder preventative as well, the others were giving me asthma symptoms as I took them.
I'm the same - it took my son and daughter to tell me I was breathless and unwell and to go to hospital ( years ago) and I found out I had a serious case of pneumonia - still unaware of my symptoms unless I'm actually coughing my insides up x Anita
Yes, often my husband says "you don't sound good" and I realize I'm coughing / clearing my throat / yawning etc. a lot more than usual. But I'm so used to having symptoms I don't always realize when they're worsening.
I’m the opposite I’m too aware of my symptoms and even the slightest feeling of shortness of breath I think is my asthma playing up. Sometimes mine is anxiety and I mistake it for asthma.
If you have peak flow device at home use that regularly and you will then know if the symptoms are bad or not.
I really struggle with recognising symptoms. I've never really had any more than a slight wheeze I noticed when laying in bed at night when I was first diagnosed. It seems to be more breathlessness and a cough for me. I'd like to think I'm better at catching it than I was 5 months ago but I actually am not sure if I'm just more paranoid. I thought I had relatively well controlled asthma until early this year. Turns out it's probably been worsening for a while and I just hadn't realised until I had an annoying cough I couldn't shake in March and found I couldn't hold a conversation on the 10 minute walk from my work car park because I was so breathless. My workmates had been recognising me coming before they saw me by my constant throat clearing. Since then I've had a big increase in meds and 3 short oral steroid courses. My peak flow has gone from 340-420 to 400-480 so I know there's been an improvement but my now PF doesn't really seem to change much when I'm more symptomatic.
Even now I'm questioning it. Am I breathless because I'm fat and even more unfit after months of shielding and being less active? If I woke up coughing a couple of times last week do I need to contact my GP or just leave it if it hasn't happened again? I'm just back at work and am struggling a little bit, but I'm just back at work with less than sympathetic colleagues and management. So am I ignoring things I shouldn't or am I looking for excuses because I'm finding it hard? The throat clearing has got worse again but I'm not really coughing much. I'm finding I am really breathless on that 10 min walk back to my car at night, beet red, sweating and with a racing pulse. Is it the exorcise, asthma, both? Something else?I know I'm also having anxiety issues so that is confusing things even more. I've spoken to my GP more in the last 4 months than I have in the last 4 years and now I'm hesitating to call again. do I need a Dr, a psychiatrist, a gym, an exorcist, all of the above?
Yup, only in past couple years have I become more aware of when I’m beginning to struggle. Tightness in chest, muscular pain around back and shoulders, tendency to talk fast, barking coughs, fatigue etc
Never had that problem i always recognised the signs may be because family history of asthma also used to be first aid trained plus come from family of nurses and a medic..
Plus consultations over the phone don't help either if you have a peak flow meter and a dairy to record them if not ask either a Dr or your asthma nurse for a peak flow meter and a dairy as well then you'll get to know your highest peakflow and whats your lowest also ask for an action plan which should tell you what to do if your peakflow falls below that level.
Thanks to everyone who replied. I can see I'm definitely not alone - and it's strangely comforting to hear that even people with severe asthma find it difficult to describe their symptoms to the dr - makes me feel less of a wally!
Consultant's obviously taking me seriously, anyway - I've just had an appointment through for a CT scan, and waiting to hear whether she's decided to go with more blood tests, skin prick tests or both.
I'll try to be more mindful of my symptoms (without paying so much attention I start worrying about everything...).
I have just read through all of the replies., and had a laugh at the similarities to myself.
It’s so reassuring to read that I am not alone too. I only recently joined this forum. It’s such a help as I only got diagnosed last year just shy of my 60th birthday.
I recently contacted one of the nurses at AUK who gave me great advice about daily recording my symptoms so that I can use it when contacting my GP. I am recording PF and any symptoms I am experiencing.
I also seem to be oblivious to my symptoms. Pre diagnosis I just thought it was normal 🙄.
Due to Covid all my appointments since March are by telephone. This is also my first”summer” post diagnosis and I am getting more triggers, I never had hayfever before!
I have waited too long before contacting the surgery...... so recently completed my third course of prednisolone. I don’t want to be on them either but I want to just breathe like I used to! I think I am going in the right direction for now.
These posts are also helping my resolve. Take care everyone ❤️
We must be the same age - tho I was diagnosed a long time ago, I’ve just had so much else going on the asthma has been rather sidelined. Hope things keep improving for you.
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