Came across this site whilst sat at home from work yesterday and can't believe how much helpful info I've already found.
I'm 31, not really sure if I've ever had an official diagnosis of asthma but am treated as if i have it. Really healthy and physically fit, never smoked or had any chest infections or breathing problems in my life until pneumonia hit 3 years ago out of the blue. Ended up in A&E, turning blue, only able to get one work out at a time. 4 months off work later and apparently no longer having pneumonia (although still feeling very rubbish) - problems continued with chest pain, shortness of breath, coughing with things like smoke, perfume/aftershave, cleaning chemicals, pollen setting me off.
GP refused to send me for post pneumonia x-ray which radiologist had written to me to ask me to get arranged - said it wasn't necessay as my chest sounded clear. Also said I would have asthma type problems for up to 6 months after pneumonia so not to worry it would all settle down - gave me brown inhaler and a blue one to use. Got fed up after 3 months of using the brown one as did not seem to be working, blue one gave short periods of relief. Went back to a different GP who put me on fostair to try - amazing - worked instantly felt so much better.
Had a review after 2 months where GP told me to come off inhalers as I had rarely needed the blue one and symptoms had decreased and I didn't have asthma. Big mistake - after a week felt rubbish again, tight chested, not sleeping, coughing - went back, GP says ' I think you may have asthma you have excema and hayfever and these things often come together'. So I asked about pneumonia and how this was all linked and he said it was likely I was going to get asthma anyway and the pneumonia just set it off not sure how he knew this as had never been with any chest related problems before!).
So back on the inhalers, managed to get myself back to a reasonable level although still not to pre-pneumonia functioning. 6 months later (had the odd use of blue inhaler between times for triggers like smoke/perfume), woke up with agonising chest pain and shortness of breath, couldn't sit up or lift my arms above my head (just like when I had pneumonia) got someone to drive me to A&E - Dr assessed me, I told him about inhalers I was on and that Dr said he thinks I have asthma, listened to my chest, said it was clear, put me on a nebuliser for 2 hours (which really really helped - was like I'd momentary been given new lungs) then told me it wasn't asthma and that I'd pulled a muscle in my back but sent me home with a prescription of prednisone not being very asthma savvy at this point I didn't really question this and thought it was for the pulled muscle until I read the leaflet). Next day the pain had significantly decreased (not like a pulled muscle which lasts a few days).
Following this, took ages to get things back to a normal level where i could walk up the stairs in my house without getting breathless. Kept going back to the GP who would always say my chest is clear despite coughing up green stuff, and that I have no wheezing (never have wheezed). Got told I needed see the asthma nurse in my surgery who introduced me to peak flow and monitoring things more closely. Kept a diary of symptom and realised that they got worse the 10 days before my period - told the nurse this and she looked at me like I was mad and said she'd never heard of anything like that so it probably wasn't linked (have since read different on here).
So bit of a mixed year so far, 2 chest infections both cleared by upping inhaler use and antibiotics, even though dr's said chest was clear at the appoinment, and a summer or relatively good breathing, a small cold at the beginning of october seems to have spiralled me out of control, coming to a head last thursday. Woke up with the pneumonia feeling again, really painful upper back and chest, coughing lots, lower peak flow (65% of normal), went to Dr's told me to up my inhalers and gave me prednisone again - but this time feeling like rubbish (have no cold remaining) and also unable to lay down in bed which is causing sleepless nights and lots of coughing can feel stuff in my chest but its not coming up. Dr didnt even listen to chest! So sat at home waiting for something to feel a bit better.
A few questions - how often are you supposed to have a review with the asthma nurse - I had 1 and a follow up a few weeks later to look at peak flow readings about 18 months ago but nothing since?
This is all very new to me still and it scares me how breathless and tight chested I feel sometimes but always seem to get fobbed off by Dr's who always tell me to up my preventer until it improves and use extra reliever, that my chest is always clear and that I don't wheeze - they say I should be able to self manage this (i felt like I was wasting their time). Knowing no one with asthma I don't know what to expect or how to know when things are getting serious which is kind of why I'm asking here as you guys seem very knowledgeabe and friendly.
I'm going to be moving house soon and changing GP and I want to make sure I go armed with the right questions and knowledge this time from the outset so any guidance would be much appreciated.
Hi Louise and welcome! I've found this forum to be really helpful and in my case it convinced me that I did have asthma and I should keep persisting with doctors to get answers even when I was getting fobbed off a lot and told it was just hyperventilation as like you I have no wheeze, keep getting told my chest is clear and I also have a very high best PF which is supposed to be a good thing but really doesn't help when you are trying to convince people you have asthma! In the end it turned out I was right though with the help of a very good GP who actually listened to what I was saying.
Meanwhile though I thought I was going crazy and was beginning to wonder if maybe it was just hyperventilation. It was reading about other people's similar symptoms and triggers on here which really persuaded me that I was right about the asthma even if it wasn't classic and it was worth going back - there are quite a few others here who don't wheeze either and have had problems with drs because of it.
I would definitely persist with your new GP; they might be a bit more helpful ( and if they aren't, try others in the practice, not even necessarily the one who says they have an interest in asthma, just the one who listens!) You are supposed to be able to manage asthma at home if it's well controlled and you take your medication, but if it's not well controlled (try looking on here, I think there is a questionnaire you can do which tells you) then you need the drs and asthma nurse to help by changing medication etc, they shouldn't just be telling you to get on with it if you're having problems and you shouldn't feel you're wasting their time. Even if you are well controlled you should be having a review at least once a year (I have heard 6 months but not sure if that's right, I'm struggling to get control so am round there all the time). If you're struggling t get control or haing problems with infections etc you should be going as often as it takes to find something that works.
Have a look around, there is some useful info on here about what to do in an asthma attack. Also if you use the search box for the forum it will bring up previous posts which may be related to any questions you have (or just post a new topic, but sometimes the archive can be very helpful).
Hope some of this is useful, feel free to PM me any time as I know what it's like struggling with asthma and doctors telling you you don't have it!
Hello & welcome Louise,
Sounds like you've had a tough time and less than helpful GP practice. There is plenty of info on this forum and site - have a look along the green bar at the top if you haven't already.
There is a lot of options with medications that can be tried not just the standard brown & blue inhalers.
You're quite correct about the link between asthma & periods, my consultant didn't really listen to this either, grr.
Everyone with asthma should have a review at least yearly and more often if any problems. Also, try to get an action plan agreed so you know what you can do. There is plenty of info under 'all about asthma' & 'publications' that can be posted out to you.
There are people with all levels of asthma on here and from most parts of the UK and abroad. Whereabouts are you moving to? You may well find there is someone who knows the area you are going to.
Hello Louise and welcome. Lots of useful info on here and people who understand what you are going through. The asthma nurses (tel no at the top of page) are also very good.
I hope things improve for you - and good luck with the move.
Hi Louise, and welcome to the forums!
im just repeating what others have said, but:
# try talking it over by ringing the asthma nurses, whose number is in the top left hand of the page. they are very competent, listening, and have lots of info and different solutions to suggest.
# try making an appointment with a different GP. try to get an asthma action plan, wich gives you details specific to you of how and when to up your meds, or when you need more help.
# look at the list of questions you might want to ask your GP or asthma nurse at the next appointment.
# have a general exploration of the site, lots of great info and tips!
i hope you find help here, and that your situation soon improves.
All the best,
Rose
Very nice to meet you all and thanks for all the advice. After a very distressing visit to the Dr's today in which he gave me more steriod tablets, antibiotics and then in the next breath told me to go back to work as I wasn't infectious! (I work with children and have to crawl around on the floor a lot which is not ideal with chest pain and 3 hours sleep a night due to the steroids!) I phoned the lovely helpline and for the first time someone took the time to explain asthma, all my medications, where I had been misadvised and what i should be asking for. I was in floods of tears throughout most of the call but feel so much better now. I'm still feeling a bit rubbish (with asthma) but definitely more positive in mood!
Thanks again for the welcome and I guess i'll chat some more soon
Louise
PS i'm in cornwall and moving to another part of cornwall so hoping the new GP surgery is much better!
welcome
Hello,
I am sure you will gain a lot from this site I have. You take care now.
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