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Hello, am new here :) x

43 Replies

Hello everybody,

am Jess, 19, and been freshly diagnosed with Asthma last Tuesday..

I've had a lot of problems with my breathing, ever since I rememberred, but I cud always blame something else, well, now it seems to defo be my lungs..:(

Especially at night I experience a lot of problems such as waking up at night feeling all weak with massive shortness of breath, pain & a fainting heartbeat..

Also I have a horrible pain/pressure in my chest/lungs, feels like they're exploding..

I look forward to meet new people that understand my feelings.

Thank you very much for listening,

Reb'l Fleur AKA Jess xx

43 Replies

Hi Reblfleur,Welcome to the forum. xxx

Hello and welcome to the forums!

Im Rhys and funnily enough I have just been diagnosed Thursday just gone (1st)

I also had a lot of breathing difficulties and for me it felt like someone was constantly sitting on my chest. I have never really had night problems but at the moment I am also having broken sleep from trouble breathing etc. When I went in thursday I was already on a blue inhaler but it was nearly out and was not doing enough. I was then put on the asthma register and given a steroid inhaler (brown). I am still quite ill as I am still waiting for it to take affect.

You must remember that you are never alone. when I came on here because I had a very difficult diagnosis as i did not have the ""classic symptoms"" and I thought that I was alone but in fact other people on here especially Philomela had almost the same problem as me!

This forum is a great place, very supportive and also if you need to moan there is a thread dedicated to rants and moans!

Once again welcome to the forms!

Rhys

Hi Jess and welcome!

I saw my name mentioned and thought I'd jump in to say welcome. :)

All sounds pretty nasty. I take it you told the dr on Tues about all this? What have they given you in the way of inhalers? Sounds like you need to keep a close eye on things and go back asap if you feel the inhalers aren't working - though if they gave you a steroid one it will take a bit of time to start working.

Asthma-girl profile image
Asthma-girl

Hello and Welcome to the Forum

Thank you all for your lovely welcome! xxx

Thank you all so much for your lovely welcome, that's really lovely!!

It's so good to know there's somebody who really understands you!!!

I am on the blue-ish inhaler (Ventolin) right now, but I feel like I have to use it much more than 4 times a day:/

I already have a heart murmur due to a rheumatic fever in the past..I spent my whole life in damped flats basically:/

Donno if that actually caused it or if it maybe has to do with my heart?

Also I worry I get to less oxygen into my body coz my skin is slightly blue-/violet-ish..?

& my face is pale, esp. my mouth triangle, also my eyes seem to have sunk in:/

Everything exhausts me, also I feel tired all the time:(

But sorry for talking so much, thanks again so much & I wish you all the best!

Hugs, Jess xxx

Think you need to get some help

Hi Jess,

Do you mean your skin is usually like that or that it's like that right now but isn't usually? If it's right now, then you need to call an ambulance or get some help from somewhere - blue skin is not good!

And how much have you used the inhaler today? How much more is 'a lot more than 4 times a day'?' If it's not lasting long and you still feel very breathless even after having a lot of reliever, again you need to be getting help asap!

Even if you often have the blue skin, drs should be aware of it (does the dr who diagnosed you with asthma know?) and you ought to be getting checked out asap. Having heart problems can make you short of breath and tired as well - have you had your heart checked recently, or was the heart murmur detected a while ago? I'd definitely go back asap to your GP anyway, as even if your asthma is causing these symptoms rather than your heart, using the blue inhaler that much suggests it's not controlling things and you need a preventer as well.

Your very welcome!

If you are using the blue inhaler that often you should see a doctor. However because you have just been diagnosed give it a week or 2 but if at any time you are worried or it gets worse call up the doctors or consider A&E if very bad. If you are worried about oxygen levels and if your skin is going blue then this IS SERIOUS! If your skin is going blue then you need to see a doctor immediately or go to hospital. You saying everything exhausts you, I have that when I am ill, normally after a while it sorts itself out. If your symptoms stay the same you need to go see the doctor and ask them about putting you on stage 2 (Brown steroid inhaler) thats what im on.

Remember just take it easy and if you are worried seek medical advice!

Also call an asthma UK asthma nurse tomorrow on 0800 121 62 44. They will answer virtually anything to do with asthma! Good luck and let us know how you get on. PM me if you wish :)

How are you?

Hi Jess.

Noticed you're still on here - how are you feeling? Really hoping you're getting some help, previous post was a bit worrying. I know you weren't after urgent medical advice (asking for it is against the T&C) but really think you could do with getting some - better safe than sorry! They would rather you ask for help you didn't need, I'm sure, than wait for things to get worse.

I hate doctors-.-

Heya x

Well, been for an emergency appt today, unfortunately no asthma nurse in today, so I got an appt w/ a doc - UNFORTUNATELY!

I hate them more each time I get there (which I avoid as much as possible)..

I jus got concerns I might not use my blue inhaler correctly coz sometimes I feel like it's not giving me enough of a relief, but I feel it helps me, like right now when I was walking up the hill that usually almost kills me..

But the doc didn't even really listen to me, only listened to my chest, but as usual as soon when you're @ the docs, it's clear..

What a waste of time!!! He even questioned my asthma suddenly..I had breathing difficulties all my life, was in hospital as lil girl once coz I almost died from a cough & lived in damped flats all my life!!!

Do you have to be fat, old or a chain smoker before ppl take you seriously with heart/lung problems?

I wish I wasn't ill!!! Don't they understand it's not funny being tired all the time and being too exhausted for the simplest things in your everyday life?

Have to go to a spirometry test next week Friday now..

I just want this suffering to end, do I have to actually start smoking in order for that to happen?!

And oh yes, the pain in my lungs is just my muscles probably. I think I can well tell the difference between muscle pain or an actual pain in the lungs!!!

I hope y'all are doing better today!

Either way, feel hugged!

Jess x

Hi Jess,

Thanks for update, but sorry to hear not great experience! Obviously you don't get much choice with an emergency appt, but I wouldn't go back to that one again if you can help it - drs who don't listen are a menace. Did he say ANYTHING about the blue skin (even if you didn't have it in the appt they should have followed up on that asap) or the heart thing?

I'm glad you got help but from what you've said on here I think they are being rubbish and irresponsible not listening properly and not taking your medical history into account (my mum had rheumatic fever back when it was more common and even though she had no heart problems afterwards drs were, rightly, very careful about certain things). Still think (and ok I'm not a medic) that they ought to be checking your heart out again given recent symptoms - they checked mine even though no reason to think there was a particular problem there.

Have you seen all the drs there? Are any of them any good at all? If you think there's one better than another then maybe book in an appt right now to see them as soon as you can and raise your concerns, or try to get an appt with the asthma nurse. If you find all the drs there are like that and don't listen properly, would changing surgery be an option?

Crossed fingers you find someone who listens properly. Drives me nuts when they're so dismissive!

Hello and welcome too,

You will find plenty of information here. There are people with all levels of asthma and different experiences.

However, can I please remind you to read the terms and conditions agreed to when you signed up as your posts have worried others?

TJ (moderator)

Late

Sorry, haven't been on here for a while so missed you're post. A belated welcome :)

I am very new to the forum and asthma myself, reading how you experience it is almost exactly the same as what I get, its rubbish ain't it!

I am on the blue inhaler too and take it quite a bit (sometimes more than I think I should be lol) as my chest gets wheezy and tight a lot atm.

For me also nights do seem worse for some reason, but hopefully once your medication is sorted and spot on then you will start to feel better.

In the meantime take care and hope you are feeling better now.

Steve

Apology for breaking the rules!

Hello everybody!:)

Have been off for quite a while, but that's me back!:)

First I wanna say sorry if I broke the rules, I didn't mean to give even more ppl worries !!!

Once again, sorry with all my heart, I hope yous forgive me! x

In the meantime I've been to the docs twice, once been unlucky, doc meant my massive 'lung pain' mite be muscular problems jus coz he coudn't hear anything in my chest..and that even tho I was told I cud see the asthma nurse the next day, phoned early in the morning to learn that no nuse was in today!!

Well, then he referred me to the asthma nurse, but the spirometry didn't show a lot of a difference after I had the inhaler coz I got too tired during the test..

My nice doc who gave me the inhaler in the 1st place is on her hols now for 2 weeks,

the asthma nurse said she mite refer me to the hospital for 'further tests'..:(

Hope y'all are much better!

Hugs & kisses,

Jess

Hi again Jess,

Good to hear back from you - but rubbish that you're still not getting anywhere. I'm still concerned that they're not taking this 'turning blue' thing seriously, or the heart. I hope the asthma nurse does refer you.

My spirometry can be odd too and not show any difference - last time I could have told them it was going to happen as all they gave me was 2 puffs of blue - not going to do anything! If your airways are inflamed and you don't have preventer to keep them under control then quite often the blue doesn't do that much - mine didn't work at all until I started on some preventers, and tbh it still isn't that great; I suspect the reliever would be much better if I were more controlled in general.

Hope you get somewhere soon. Unfortunately it seems you need to be persistent sometimes which isn't always the easiest when you feel rubbish. Keep us posted though!

yaf_user681_27480 profile image
yaf_user681_27480

Hi Jess

Welcome to the forum, hope you're getting on ok with your asthma.

Asthma UK nurses are helpful if you feel you need advice, may be worth a thought if your GP surgery asthma nurse is not available.

Hope your pain is easing with your new meds.

Take care

Hey x

@islandmedic thank you very much! x

@Philomena

Aww I am sorry that you had to make similar experience to me:(

It is rly annoying esp since yesterday I came up with a huge fever & now have a stomach bug it seems, my night was hell..headache like crazy, I hate having fevers..torture, didn't have a stomach bug in 2 yrs (exactly march two yrs ago, threw up lost 10 pounds in a week..never seen myself that skinny!) Shudn't have said 'I never catch stomach bugs' last week..ha ha to prove me wrong-.-

At least I seem to have been able to prevent another attack @ night by using my Ventolin straight before going to sleep..only a short 'heart stopping' this time..I hope it's not going to happen tonight either coz it's horribly scary..

The doctors don't seem alarmed bout that nightly episode neither bout my heart/the blue-ish skin @ all..:/

Jess xx

angievere profile image
angievere

Hi Jess and a belatedly welcome. Hope you get sorted out! Keep going back to the GP if you are worried.

Asthma-girl profile image
Asthma-girl

Hi Jess,

Welcome to the forum

Hi Jess,

:( re stomach bug - horrible! Hope you feel better soon. Taking Ventolin before bed is probably a good idea to stop the waking caused by asthma - I find taking my reliever really helps with sleeping!

I'd agree you should ring the asthma nurses as they can be really helpful - have helped me a lot.

Re the heart and turning blue: not saying there is anything going on - it may be nothing to worry about but I think the doctors should take it a bit more seriously with your history and check things out properly. I'd ask the AUK nurse, if you ring the adviceline, about the turning blue etc and that the dr hasn't looked into it as they might be able to help you with what to say to the GP - it could also be connected to the asthma so worth asking.

I realise this is way easier to say than do, but maybe you should get assertive and say, politely of course, that while it may be nothing, with your history you're a bit worried about your heart given the symptoms and would they mind just checking it? They might act like you're being a hypochondriac (you're not) but would have thought if you're insistent they should do it. I'm really not impressed that they seem to be so reluctant given they keep on checking my heart every time even with no history or suggestion there's anything wrong with mine! I guess they're not used to rheumatic fever as so few people these days get it but still, they ought to at least rule out any heart issues - an ECG, echo etc surely isn't going to break the bank, or they could just listen to it in the appt (haven't they done that yet?)

EDIT: just saw the 'heart stopping' thing again - if it happens again maybe you ought to take yourself off to A&E and get it checked out there and then.

Thanks for your reply again, hope you're well!!!

OmG am sorry btw, I wrote your name wrong, jus realized that..sorry!!

Yes this bug is evil, but since my tonsils are out, my immune system suxx..I usually only get infections concerning the respiratory system tho:/ hope the next bug ain't comin in a looong time after this..:((

Am afraid of going to sleep @ night coz this nightly episodes I keep having are rly not nice experiences, I jus hope I'll have that all controlled properly soon..rn it jus seems completely messy, also my pf varies between 250--350 ever since I had the reliever inhaler it got better tho which am rly thankful for!

About the doctors..they only ever check my lungs, only during the medical I had to do (which was mainly coz of my heart), she said abt my murmur, but that was it..it was only in January tho.

It's true, I wish ppl would still understand more about rheumatic fever - or @ least believe you..

xx

hehe no worries, not like it's my real name!

So, you have a murmur, and you've had rheumatic fever...and they don't believe you might possibly need your heart checking?! Has it been the same dr you've seen every time - can you try a different one? You could point out that since the dr in Jan found a murmur (was that at the GP's or a separate thing? and did they do any heart tests?) and now you're having these symptoms you're worried and would like them to check it out asap.

Or, like I said maybe don't wait - if you have another night-time episode - and they sound scary esp if every night - call OOH drs and they could at least do an ECG while you're having the problem? Or get an emergency appt at GP? If it gets really bad you need to call an ambulance or go to A&E without waiting. Obviously not diagnosing, it just sounds like you need to get the dr to stop faffing around.

The murmur's been diagnosed long ago, I had an echo last year which didn't show 'anything major' how the nurse called it..

The doc in jan jus confirmed that she can hear it too, but said as there was no major thing last year 'we know that's nothing to worry about'

xx

Ah ok. Still, with current symptoms and past history they should probably check again. If nothing else night time symptoms sound nasty, though maybe would settle down if asthma gets sorted properly.

I'd defo ring nurses on here and get some advice for what to say to GP etc.

hello, just a little note, have you had your bloods done also, i was told im asthmatic but also found i was anaemic too and that was also causing breathlessness, also i had allergy test done and they found im allergic to dust, i was worse at night but since they started me on medication i have been fine x

Hey, it's me back again! x

@Pam46 yes I had blood tests coz of the exhaustion I suffer from and my biology teacher always said I look like a typical anemia patient, but that seems to be not the case.

Hope y'all have a happy easter??

My easter weekend started horrific..had a stressful day Thursday, noticed my inhaler wasn't as strong anymore.

My friends & me walked into Nandos for dinner, I went to the toilets, washed my inhaler out as I thought maybe it's jus blocked again, but no. It was empty. And already late afternoon. So after we finished eating, we rushed back to the medical practice which was almost closed as it was short before 6. I asked if they could organise an inhaler before the long weekend but they said I'd have to call NHS24.

As we had to head over to Glasgow as my friend took her lil sis to her first concert, I thought I'd try to manage without an inhaler, but I started to get rly breathless (already felt that in Nandos) and tight-chested, it was horrible, I was rly struggling, so I decided to call them once we arrived.

I already felt dizzy aswell now & in a lot of pain, my whole upperbody seemed to be wrapped up tightly, I got thru the line the first trial and the nurse was so worried and without even mentioning my heart she said it might be my heart, but could also 'just' be my asthma, but rly sounds more like heart-related and she wanted to send me an ambulance. I said I didn't want to spoil the concert and rather wait and then we got cut off. She later left me a voice mail saying she rly wants me to go to A+E..

We headed off to the SECC, I waited outside and read my Rihanna-Book, still in pain & struggling to breathe plus the letters in front of me turned blurry a few times, so when they came back we decided my friend would drive her sister home and then take me to hospital..

Short before midnight we then arrived @ the A+E and I actually didn't even have to wait that long, a nurse measured my saturations and then told an out-of-hours gp to have a look at me, the nurse ran out of inhalers, I am sooo lucky..well, the out-of-hours doc gave me one and said it does rly sound like I need proper treatment urgently..

Well, it was a horrible night, but my hope is that it might speed things up now, my next doctor's appt is Thursday..

Hi and welcome back Jess! Sounds like a horrible experience but like you say hopefully will get things moving. The GP should have an email from OOH etc and it should make them take things a bit more seriously but even if that doesn't, think you can tell them what the OOH dr said and ask the GP to get on with it.

Thursday seems quite a way away though given what they said at OOH about needing urgent treatment - can you wait till then? I think any sign of a repeat of what happened and you should be off to A&E. Hope you do feel better soon.

Aww thank you Philomela!

My GP was on hols, but I rather wait for her then go to anybody else as she seems to be the only one who understands me a little and I got so upset as I was told I had 'muscle cramps' by another GP at my last emergency appt, after having many sleepless nights..

I rly do hope I get taken more seriously now as I find that my reliever is not as 'relieving' as it was anymore. It used to prevent those horrible attacks at night, but tonight I had the worst out of probably all of them..I wish Thursday would hurry (actually I wish Wednesday wud since my friend & me will be watching 'Battleship'*___*), I can't seem to get rid off my tight chest anymore and if it's just 10 stairs am going up, it gets even more horrible.

Hope you & everybody else is doing well and has a nice easter xx

Fair enough, I've done that too - you do get more out of it with a GP who listens! But please do get help again pronto if you have another bad attack like last night, especially if the reliever's not working.

Hoep you enjoy Battleships. I really want to go and see Pirates, should be a laugh.

'Pirates in an adventure with scientists'? - Was hilarious, watched it on Friday!:D

Thank you very much xxx

I am rly hard to get into hospital, my jaws been shakin on Thursday night coz I have such a hospitalphobia..

angievere profile image
angievere

Hi Jess, Sorry to hear about your bad evening. Hope you are feeling better now. See if GP will give you a prescription for 2 inhalers - my GP does.

Hi Jess,

Agree with others. Go see your GP asap. With the A&E visit the other night, any GP should listen to you and take you seriously. Do you know that you can ask pharmacist to issue a prescription on your behalf for inhalers. I ran out week or two back. Panic! before husband reminded me I could ask pharmacists. No problems. Prescription printed for me to sign and inhaler given out.

Best wishes, take care.

GM xox

Hi Jess,

Sorry to hear you've had such a tough time and hoping you can soon get treatment which helps. Co-incidentally I borrowed a book from our library recently which I wanted to recommend to anyone new to asthma (as we are - it's my daughter with it, no-one in my family has had it before so we are novices in asthma terms.) The book is called ""Living with Asthma"" by Dr Robert Youngson, and I think it's a must-have for anyone with asthma. Only a slim paperback, (it says £7 99 on the back, but obviously it's free at the library!) and it is a comprehensive history, explanation of the disease, causes, treatment, explains the various sorts of drugs & their functions, & how important it is for everyone to understand asthma & monitor their own health with a peak-flow meter, to warn of possible decrease in lung function before an acute attack starts. I've been reading bits out at mealtimes to the rest of the family, whether they want to hear it or not ;-) You could do a lot worse than get hold of a copy asap. It will help to explain all the things your Dr or nurse may not have time to explain, or think they've already told you, or just forget to mention in their busy schedule.

Thank you all so much for the many replies! xx

I soak all information up like a sponge now as it's still all so new to me & things @ the gp happen so slowly, unfortunately due to the lack of time they have during an appt..

Still I hope she got the mails from the NHS & the OOH-doc already, so it will speed things up for me finally like most of you say x

I ordered the 'Be in control'-pack today & will have a look for that book in the local library, thank you loads for the tip! :)

Love, Jess xx

Hi Jess,

Try not to worry too much about what you have described. When you are awoken at night like you described notice that you breathing is elevated. Well try to control it and reduce you breathing level, this will reduce your symptoms and you should fall back to sleep.

Is there any reason at present why you would be waking up during the night at present. It could well be stress related or possible something different you are eating. Try not to eat too late at night.

Become more aware of your breathing even when you are not asthmatic and you will notice you overbreating/hyperventalating when you are having an attack. If you reduce this level of breathing your asthma will reduce.

Feel free to get in touch

Keep well

William

So, now I have to share my experience @ the GP today before the forum shuts down for a few days..*boohooo*..:))

First, @William, thank you very much for your tips! No, my eating habit is the same, I always have something to worry about, but not really 'stress' right now, I found I cud prevent or at least ease those episodes @ night w/ my reliever, but didn't work so well recently..

Well, today I've seen my GP, she was rly nice. First said my spirometry wudn't have showed that much of a difference without and later with the inhaler, but when she took a look at my peak-flow recordings she said 'well I think from them we can officially diagnose asthma!' ..sounds stupid, but I am relieved, since I finally received the brown steroid inhaler today and I have my 1st asthma clinic appt on May 1st..

Am so thankful, she's the only GP that rly helped me & that means so much to me!!!

She didn't seem to have received a mail from NHS24 and/or the OOH-doc tho..maybe they sent it to the wrong GP in the health centre..

Right now my lungs are very sore, but I hope it goes away..

Also thanks to Asthma UK, I received the 'Be in control'-pack today & find it VERY helpful, will take it to my appt w/ the asthma nurse!!:)))

Hope y'all are well, feel hugged

xxx

yay so glad you have a GP who listens and has taken you seriously! I know what you mean about being relieved it's asthma, better to have it confirmed than have symptoms and them saying 'oh I'm not sure...'. Crossed fingers the brown inhaler works for you (will probably have to give it a few weeks).

Did the GP say anything about the possible heart issues? Might just be asthma messing with it (this is what they think is going on with me now after they got all excited because I had a high resting HR), but with your history still think it's good for them to be aware. Though the OOH report should say something about that...not sure where it's gone. When I went to my GP yesterday practically the first thing he said was 'ah, you went to casualty on 18th March?' (I hadn't, had rung OOH for advice but not gone in but was showing up).

Good luck with the asthma clinic as well! They'll probably go a bit more in depth about all the issues, and hopefully you'll have some idea by then if the brown inhaler's doing anything.

Aww thank you very much!! xx

I hope you're ok then?!!

Well, my resting heart rate is often really high, when I jus do normal daily activities, therefore when I have one of those night episodes, it slows down so much, my friend's been worried the last time so she tried to feel my chest coz usually it's bumping in there like it's about to explode, but it was nowhere to be felt..

My GP didn't say anything since we've only been talking bout my asthma recently (I've only seen her 3 times anyway so far), only when I had my medical she was listening to my chest and confirmed the murmur I have..

Well, I'll just hope those things don't happen again since the last time I actually got really worried too for the 1st time coz I've been literally gasping for air..

Thinkin' positive!:))

xx

yeah am ok thanks, having a good patch now but a few weeks ago it was getting annoying and reliever not working so I rang OOH for advice. Can't say it was very helpful as he asked me what I thought I should do (umm, if I knew that, wouldn't be ringing them!)

Hopefully the chest clinic will look more into it - actually I should think once they hear the murmur they'll want to know more and will probably do some heart tests as well. The first time I went to the chest clinic they did heart stuff just to be sure (even with no particular heart symptoms), and I ended up having an echo and 24-hr ECG (which they might want to do with you actually so they can try and catch one of these episodes).

Aww I hope you're much better now then!!!:((( xx

I hate when they do that, wrong job maybe if you have to ask your patient what to do?!!

So does that mean the asthma nurse is gonna listen to my chest? I hate those ecgs, they're horrible..>_>

The first UK-GP who heard the murmur (not the good one I've been seeing today) kinda panicked, but then did a 10 sec-ecg and since that didn't show anything obvious apart from my extremely racing heart she seemed a bit relieved..O.o

Thank you for all your replies btw, means a lot to me!!! xxx

Lovely evening everybody..x

ah wait...I'm confused now! I thought you meant asthma clinic at hospital, or is that someone else? Sorry if I've got you mixed up! Asthma nurse at surgery is unlikely to listen to your chest, asthma clinic definitely will.

10-sec resting ECG won't necessarily show anything - you might just not have anything there, but a longer one would show what was going on if you have an episode at night.

Aww sorry, I didn't mean to confuse anybody!!!

I meant the asthma nurse, the asthma clinic at the surgery..

Well I suppose I have to hope my heart settles with the use of the preventer!

X

Ah right...ok forget what I said about all the heart stuff, that was me thinking you were going to the hospital for some reason! Think someone else is and I got you mixed up, sorry!

Hope it goes well with asthma nurse - she can check inhaler technique etc. Maybe you could also ask about a spacer, as can help to get more into the lungs and don't have to worry about coordinating esp. when you're really breathless.

Peldypix profile image
Peldypix

Welcome to the forum.One of the best things you could have done;it really is a great support.

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