I have been off my feet for nearly three weeks with a bad asthma flare, initially flaring due to cold.
A persistent issue that keeps arising for me is that every time I see a dr during a bad flare, with a very very low peak flow level (as per plan), clear shortness of breath, increased coughing, struggling to talk with breathlessness etc- my oxygen levels still read between 95-99%. Therefore dr's always seem reluctant to either treat me like my asthma is flaring or look at me like I'm crazy. They say I sound clear, with no wheeze. So my presentation doesn't match what they feel should be happening.
Does anyone else experience this? Having all the symptoms of a flare but normal oxygen readings and no wheeze?
Would be great to hear others' experience.
Sonia
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soniaackerman
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Yes, my last flare up my oxygen was at 99% and I had no wheeze, nurse only gave me steroids after I said my chest felt heavy and I was breathless just walking across the room. This was after my third attack in 6 weeks. I rarely get a wheeze, even during a bad episode. I hope you feel better soon.
I had a chest Infection I'd walked around with for two weeks and my o2 level was 97%... really couldn't breathe and I'm only just getting right now 3 months later peak flow has been low and I've felt awful
Goodness, hope you feel better soon! It's not nice at all when breathing isn't right. I'm off work, so hoping to get back as soon as I'm able. But just find because oxygen levels are 'ok', I'm looked at like I'm somehow putting it on. Even though my peakflow which is normally 560 was sitting at 250!
I went back a week after I finished antibiotics with a peak flow of 500 (normal is 550) and my chest was nearly permanently heavy/ tight and generally something wasn't right... I saw a doctor and he said your peak flow is fine and it's not asthma but it could be your heart ... I said no it's not it's asthma and we had an argument in his room he as a locum and said I needed to come back and see another doctor... great service I went back a few days later and saw another doctor and she said yes it certainly could be asthma carry on as you are (8 puffs of fostair ) a week and a half later I was in urgent care and my peak flow was only 420 I saw a cracking emergency doctor who made a change to seretide and suggested I might need tioptropium... I made a lot of noises with my gp and today my peak flow is 610
Sonia, Been in a similar situation over a few weeks, basically your doc sound like he does not understand asthma proper. No whezzing is a worse sign than wheezing, oxegon can still be ok, they best measurement is the peak flow, I know my state from that. If it a flare up a 5 day course of prendisole will sort it out, if it longterm then it's inhalers. Hope that help. I had a change of meds and it helped a lot, but it was a trial and error to find the best. Also keep the lungs exercised, just a 30 min walk at a good pace does wonders. Too much inside or central heating not helpful.
Thankyou! It's good to hear others experience similar circumstance. As your made to feel like your wasting time. Also ended up in a+e, where I was practically chased out the door. Through my annual plan made up by the asthma nurse I see, my peakflow minimum is 420, at the minute it's 300. But over the last few weeks has been 250. On my 2nd course of prednisolone now, 8 every morning again for 7 days, then drop down. Thankyou again for advice, it can be such a frustrating experience alongside the flare.
snap - i have never wheezed once in my entire life. my oxygen remains at 95 or above.
You like me are not a text book case and will have to fight to be treated. more research is needed for people like us.
Your right there, more research definitely needs carried out, hopefully then Dr, nurse or A+E visit will be more pleasant as they'll believe us. It's hardest to fight with them when your unwell, and in the middle of a flare. But it's good to hear others are facing the same thing.
Went for my asthma review not happy as I told her I was having pain and needing my blue inhaler more. Had ECG oxygen levels taken all ok doc sounded my chest and could find nothing wrong, but he gave me Doxycycline. Coughing less but feel rough. So I felt I had wasted people's time but I knew I was not tickety boo 😥
It's so hard when you know there's something going on but because numbers don't show it their attitude can be quite blasé. Hope your feeling better soon!
I have had this problem too. I think when I am bad, I am struggling to breath that much that I probably take in more oxygen than normal! I have found a GP who understands me and refuse to see anyone else. I can also contact my asthma nurse over the phone during normal office hours. It is just weekends that tend to be the problem. I am terrified of A&E at the momentum. I am in touch with asthma UK about this type of issue. We need some lkind of advocacy to address asthma and A&E.
There's Drs I avoid due to their attitudes in the past, and my a+e experience wasn't any better. I tried to ring to speak to my asthma nurse to be told she doesn't take phone calls. Thankfully I had a app a week later to see her for my review. But i just find it hard when my asthma flares like this for weeks, I'm off work, and every time I see a dr I kinda get the 'well your oxygen and things are ok' attitude. Has asthma uk responded? It would be interesting to hear their input.
Same experience here. Asthma came back aged 30 after having it as a very small child. It's hard to know what's going on- really recommend calling the asthma UK nurses.
I have this all the time. Whenever they measure peak flow it comes out at 560 and they tell me everything is fine. I tell them that my pro should be 790 and they just say “oh” I then have to explain that it’s a 30% reduction. They look at my O2 and then say, but everything looks fine. The last time I made them put me on a treadmill. I was down at 84% within a 30 steps and had to stop. They had no answers apart from rest. I’m not sure what’s going on.
I came in here to post about something else but saw this and just wanted to say I am another one! My sats don't drop really though sometimes they like to go up and down a lot between 95 and 98 during an attack - I thought this didn't mean anything but a nurse commented on it to another one suggesting it still was 'desaturating' even if not going low.
I also *very* rarely wheeze - my chest going quiet fairly early and in puzzling ways is my thing, or I'll just sound normal! I'd also note that if you are having oxygen-driven nebs that can affect it to some extent. I had a savvy dr say 'were you on O2 when this ABG was done? It's too perfect, I don't believe it!' Sadly many *don't* remember that and also treat the O2 level as king.
Just to add to the fun, my peak flow is really no help at all either. It has been known to have the same value mid-attack as when I've been fine at work all day - which will be not the highest perhaps but still odd. A lot including GPs don't get this - I find it harder when I am heading into an attack than when I'm in the middle of it and they can see I'm not great.
I've finally got a consultant who doesn't make me feel like a hypochondriac, and that makes things easier when I go to the same hospital and they have my notes. However even with that, and before when my cons were completely useless, I put together a piece of paper about how I present ie don't expect a wheeze or low sats, this is my best peak flow, it's not a huge amount of use. It does help and means i don't have to explain myself as much when struggling to talk. It mostly works pretty well, and I use what breath I can to remind them I don't wheeze!!
Emmasue, I'd be really interested to hear what Asthma UK say to you. Advocacy in this kind of situation would be great, including in non-urgent situations where I find it really hard to speak up for myself.
Wow, sitting here awake at 1am because of tightness and pain in my chest that has been going on for over 2 weeks now, since a chest infection. (Was getting more and more short of breath for months in the run up to it) I'm told my lungs are now hypersensitive as a result and the best way to deal with the bronchospasms is rest and breathing calmly, plus avoid using blue inhaler. I also got changed from clenil onto fostair, which did help a bit. Throughout 2 hospital visits, a paramedic and an emergency trip to the doctors my obs were all perfect, including SATs. Just a low peak flow. I rarely wheeze and no doctor has heard it. Honestly feel like a compete time waster half the time but deep down I know it's not right to get pain in my chest after a short conversation. I'm self employed so this is causing a real issue for me too. Another 6 days until a review with my gp and I feel like I'm counting down the days and just getting by.
It's quite scary to read everyone's experiences here as I'm not even properly diagnosed with asthma yet. I really hope something changes for people who don't present as the expected textbook norm.
Goodness, your having a awful time of it as well. I totally understand what your feeling, because with my oxygen levels being ok (even with a crazy low peak flow for me) they look at me like I'm exaggerating or being a hypochondriac. I've been off work for three weeks, and not sure I will fit for a Monday return. But every time I go Drs always say to me I'm sure you will be back on your feet and won't need another sickline which pressures me to feel I should be better. Experiences like this aren't nice at all. Hope your review goes ok, and is a more positive one.
Hope you both feel better soon! Sonia, I think drs etc don't always think before they speak. I suspect it's meant to be encouraging but has the opposite effect on me too and isn't really helpful. Like being reassured when you know something is up.
Cindy, sounds like a nightmare. I had a similar journey where they doubted it was asthma and I doubted myself. I got there in the end in the sense of knowing it *is* asthma which does help! It's really easy when you are not a textbook case to feel doubtful of yourself when they question it. I did find that being on this forum (I used to use it ages ago under another name but my account was lost) helped as I could see other people had similar symptoms/triggers/experiences and I wasn't nuts. Good luck with your review - I hope they are helpful.
Thank you, you're so right, this forum has helped me so much already. I've also tested positive for coeliac disease at the same time, so after last night's struggle I've decided to go gluten free now rather than wait for my full diagnosis. I'm hoping it might help my breathing to reduce overall inflammation.
Thank you for thinking of me! I'm much better than I was, I'm back to work, although still not 100%. I still strugggle walking any distance, walking fast, and stairs catch me at times etc. I feel like this episode has left my lungs weak, is the only way I can describe it. My PF is still low sitting between 400-430, with my normal before this all started in October being 540. I've had reviews with both consultant and asthma nurse. But they generally go the same way. Although I did see a lovely respiratory nurse, she wants me to stay on a nasal steroid to help with a post nasal drip and stomach tablets to eliminate silent reflux, and has referred me to a chest physio to ensure my breathing technique is good and effective. She said these things can add to asthma symptoms worsening. That asthma really begins at the nose.
How are you, hope your feeling better? And hope going gluten free has helped you also? X
Sorry, just saw this Sonia. Glad to hear you're back at work and I hope your tired lungs get better soon. I stopped gluten for a few weeks then got a surprise appointment for my endoscopy so had to go back on it for a bit. Off gluten for good now though. Doesn't seem to have helped much with my chest and after improving slowly, I recently had a bug that knocked me out. Had a week in Tenerife at the start of Feb and was much more well, although still with good and bad days. Managed lots of walking in the dry warmth. Straight off the plane home the cold hit me and I was wheezing (I rarely wheeze) and coughing my guts up. Been back a week and have a chest infection so started antibiotics and pred today. Looks like I need to move somewhere hot!
PS almost forgot, just before my holiday I had a mannitol challenge - have you had that one? It was horrible and I couldn't make it through the whole thing. Seeing consultant next week for results and maybe to decide on more tests. But a positive result on this mannitol challenge appears to be a strong indicator for asthma when taken with other symptoms. Well see...
Wow, just read this and it is me. I cannot believe it you are describing me exactly. I rarely present with a wheeze and my peak flow is always my best (sometimes more) and oxygen levels are excellent BUT I can't breathe. My symptoms are usually tight chest, cough and shortness of breath and soreness in my tracheae.
I have been in a flare due to a viral infection for the last two weeks. I went to the GP with wheezing (strangely!) and she said I had a chest infection and gave me antibiotics and a short course of pred. Finished both and did not feel right. I don't think I had an infection in the first place and I also don't think that the dosage of the pred was high enough 30mg for 5 days. Since stopping the pred. my symptoms have got worse. Nightime cough, broken fitful sleep due to feeling strangled, breathlessness and tight chest, no energy, no interest in anything because I have to concentrate on breathing.
Have been back to my G.P. four times this week only to be told stop the pred when I asked if I should continue taking it and then twice to be told your stats are good and you have no wheeze keep on with the inhalers - basically go away. Finally, when I had obviously pestered them too much I was sent to hospital for observation and tests because my GP thought it wasn't asthma! All tests, chest X ray bloods etc were fine consult. I saw said airways were inflamed up the inhalers seretide 250 2 puffs 4 times a day and ventolin when needed.
What do I have to do to get them to take me seriously! I thought the idea of treatment was to avoid bad attacks. I can't breathe I don't want to keep going backwards and forwards to the docs I would rather try and sort it and get on with my life. No wheeze no asthma seems to be the docs thinking. It is beginning to make me feel completely neurotic and a fraud.
Seeing this thread makes me feel better. Like someone else said, there is some relief in knowing you are not alone. I often have exacerbation with good peak flow and oxygen stats. I generally find that my body shows symptoms way before peak flow even gets a clue that something is wrong. My PF only goes down when I am really really bad off. I honestly think that I should go to the emergency room, but my doctor said that i must have a 50% or more reduction and I have yet to clarify if my oxygen has to be below 95 as well or if it is an either-or thing (this is Japan).
I think the only thing that helps is that my PF is completely unstable when I am showing other symptoms--550-600-545 range. That may be the only reason my doctor takes me as seriously as he does, if at all. Last time i talked to him, I got his okay to take my blue inhaler (you guys call it relief/reliever, right?) for any little symptoms I feel. I used to grit through the low-grade stuff, but the last few weeks, have been taking it regularly regardless of my peak flow. Weds is my first visit since this new attack strategy, so we will see what my doc says then. A little nervous.
Still, glad to see I am no the only one with good PF, good oxygen, no wheeze and still seeing symptoms/flaring.
As mentioned before oxygen levels is totally irrelevant as to whether it is asthma or not.
Peak Flow, do a PF on an app that can do a graph you can show. It does the Best PF as a line across. And adjust best PF if you manage higher. Will adjust the red /yellow/green zones accordingly.
An isolated reading is not helpful if you monitor and show visual graph it illustrates stage of asthma you are in
I get this a lot too. Thankfully my gp seems to get it and still treats me seriously. It’s extremely frustrating I know. Are you able to book to see same nurse or doctor so they can get to know what your asthma is like and then they will hopefully see when you are having s flare up
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