Frustration: It's so irritating when pf... - Asthma Community ...

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Frustration

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It's so irritating when pf doesn't match how you feel. I know this has been said loads of times. I've had so much ventolin I'm shaking but the relief only lasts about 5 minutes. Symptoms aren't severe, I can still walk and talk but my chest just hurts and I'm short of breath sitting down. Yet peak flow is 80%.sorry for the moan, feeling rubbish but on the plus side this is the first time I've been I'll since Easter. Know if I go to the gp prob won't get any pred until I've been like this at least a week, but I always need it after a cold.

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I can sympathise with this spookymilo, my of doesn't always match either, I can go into gp speaking in broken sentences yet SATs are fine and peak flow is in green zone. I too struggle after a cold, nearly always ending up with a chest infection, if I go in before the chest infection starts I never get pred even though it'd probably help steer off the chest infection.

For once my pf seems to be reflecting how I feel, its only 52% when I'm not having asthma symptoms due to my lungs being full of gunk! I'm gonna be sofa surfing today trying to avoid anything that'll set my asthma off, earlier my chest suddenly went tight and I only managed a pf of 230, not good for a pb of 570!

This is the reason I always fantasise about nebs when I'm ill, constant tight chest is horrible.

Yes the only time my pf drops significantly is when my lungs are full of gunk.

Can't say much only I totally agree where you are coming from (hence how happy I was with OOH this week). My asthma nurse smiled when I said I wish my asthma would magically get better or get so that I was showing the classic signs of bad asthma! The annoying thing is that I am actually wheezing now I am up and about more and chests generally better so don't really need to see a doc!

Hoping your cold gets better soon.

Yeah I often wish either it'd miraculously disappear or would behave as 'standard' asthma so I didn't have to fight all the time that yes I appear OK, but actually I'm not.

It is so tiring struggling all of the time isn't it spookymilo, and you know that pred or a neb would sort you out, instead you have to battle on until you're more ill and take longer to recover

I am contemplating going to ooh today as I'm only managing an hour or two between ventolin and pf is all over the place but I know I'll get the usual brush off and really aren't in the mood for arguing with them, plus I'm trying to sort myself out so I can try and get off this singulair, grr

I feel your pain Butterfly. I think considering the drop in your peak flow maybe you should go? You may need antibiotics if the gunk is due to an Infection and think they are more likely to listen with numbers that low. My best is over 100 less than yours but I would be struggling massively at 230.

Been out and walked around slowly for a few minutes before sitting down for lunch, and was starting to get desperate to come home for my spacer. Could still talk in full sentences but really uncomfortable and coughing. Just had 6 puffs ventolin and it's just not touching the tightness at all. I agree Kayla, wish it would just go away or get worse so I could do something.

Hiya,

Butterfly, tbh if I were you, I'd go do something, rather than letting it get any worse!! You can always discuss the singulair at a different time. Get this flare controlled and then do that! I think your GP would probably be more receptive if you were better controlled, and you could always approach it as a ""trial"".

Spookymilo - I get what you're saying about either wanting it to go away (wouldn't that be perfect!!!) or get worse so you don't have to fight your corner! If its any help, I have been in hospital and really struggling when my PF has been above 50%, you shouldn't have to feel as though you are fighting with medics to be taken seriously! Really frustrates me! I am frustrated with the whole asthma thing at the min, finding it difficult to deal with!

I'm struggling with gunky horrible lungs too at the min. But if I went to the GP I'd be told ""your chest is clear"" which is what I was told the day I ended up in hospital with a LRTI. Agh!

Hope you all start to feel better soon!!

Hoping I don't need it but if I get worse I will either see gp on mon or got ooh as it scares me when multiple puffs of ventolin don't help at all, even if symptoms aren't attack bad.

I dislike that other people have this too, but at the same time so glad this forum is here so I know it's not just me going crazy when I get the brush-off! Today is not too bad but the last few weeks have not been great and it's disturbing my sleep. However after a few unsuccessful trips to OOH and one to A&E (I got a neb at OOH which helped for a bit but not long and had to really push for it which made me wonder if I should be; A&E was just pointless and frustrating) I have given up - I'd go if it got bad but I don't even see any point in seeing my GP since although they are used to me and want to help what can they do? I think the pred I got did help but didn't bring me right back to normal.

Asthma nurse at the hospital wasn't really happy with how I sounded and what was up and did not agree with what had happened at A&E/OOH. But seeing cons next week and I expect he'll tell me I overreacted.

Oops sorry I didn't mean to have a rant on your thread Spookymilo! I hope you and everyone else feels better and gets the help you need. I am so frustrated right now because I don't feel like I'm getting anywhere. My cons seems to have a view of me, my asthma and how I react to it which is very different from what I tend these days to get from my GP/the asthma nurse (who doesn't know me well yet but is lovely), and, occasionally, good OOH drs. I have to change GP now as well because of moving which is scary when I have no idea what they'll be like.

I would defo agree 100% with the 'if it won't go away please can it be classic?' thing.

Wouldn't it be great if we were all asthma free or at least showed some textbook symptoms (or perhaps I should say textbook symptom-wheeze).It really annoys me when they think you have to wheeze, sometimes I just want to shout ""I cough""! I have a good wheeze and crackles atm but often I go through a cycle of low pfs/lots of symptoms at night and much better during the day and if I start my pred and go for checkup and top up prescription of pred it's ""your chest sounds clear"" grrr. I wish none of us had to go through the ""no wheeze/chest clear"" thing, but again I'm glad to have all you lovely people on the forum to make me feel alittle less alone with it. Hope you're all feeling better soon, or lungs make some good noises and you can get the treatment needed.

Thanks for the sympathy everyone.

Why are they so reluctant to give nebs? The times I have had one it helped loads, so I feel like it shouldn't be that hard to get one if your symptoms are causing you distress, even if you're not having a severe attack.

Philomela I have also had an ooh doc tell me there was nothing wrong and send me away with codeine! Because my sats were fine. I had had two lots of 10 puffs of ventolin and was still short of breath with chest pain hence the painkillers! A neb and pred would have sorted me out perfectly.

Feeling more annoyed as if I still feel like this tomorrow it will be a definite no to work on mon, and I'm really looking forward to what I have planned. Going to neighbours for a takeaway this evening but have no appetite and talking makes me sob - oh joy! Sorry in a very moany mood today!

That is fair enough, so annoying when that happens so hope you do get sorted! My worst period was early in the week my dissertation was due (not stress as the most stressful period was the END of the week when it was better) and that was just argghh as worried it would mess things up.

And yep - I only get chest pain when lungs acting up, so treating it with painkillers makes no sense really as I also find it will go away when lungs better.

I've been told twice now that nebs will not help and I should just carry on as before. I don't really buy this - they did help, and my PF measurements at home showed this. On a previous occasion I also found there was a pretty close correlation with me feeling better after a couple of them and the dr hearing my chest being a lot more open - it was after a couple when it finally kicked in which was a relief, and when he listened again he said yep, opened right up now (not for long but still, they clearly helped).

At the same time I'm finding that at the point I end up in OOH, they don't help for long! And sometimes feel like I need more than one but they don't always give it.

I seem to wake up worse every morning ;( was up in the night coughing every 4 hours last night but at least got sleep in between. Feel generally yucky, chest is tight and the cough is nasty. Work not looking too likely. Not helped by the fact that our neighbour chain smoked all evening either just outside the door or inside, and oh kept us there a lot longer than I was really up to. They kept trying to force me to eat more, but I really couldn't as I couldn't breathe. Also told me to stop coughing a couple of times - helpful! Peak flow has dropped below 75% which almost never happens and after 6 puffs of ventolin I feel shaky, still tight and have a delightful wheeze.

Spookynilo, I think you can be looking forward to at least a few days off work! Really doesn't sound good if things are getting worse. At least if you're now wheezing and your pf has dropped, maybe ooh or your gp might be more receptive to helping you?

Sorry you're feeling worse spookymilo. Maybe it's time to get some help/pred.

Unfortunately I think you're right ;( Really bad timing. Unfortunately wheeze is intermittent, it's gone again now. I'm thinking gp in the morning unless I get worse today. Still tight but ventolin has calmed the coughing down. Haven't been this bad for a long time, it's really shocked me. When I had a cold at Easter had two days off but breathing wasn't this bad.

Hoping you feel better. I'm with Lou: wheeze or not it seems to me that (a) you need to get well (b) you need to at least give your doctor a chance to help. He/she may not give you what you need, but then it's guaranteed he/she won't if you keep slogging it out at home.

Perhaps when you talk to him/her you could point out your track record of always/usually needing pred a week late anyway and suggest a step up in treatment as a prophylactic measure to shorten the total number of sick days you need to get over this? Or have you already tried that?

Thanks Beth. Definitely not going to work tomorrow so going to try to see gp my head hurts every time I cough now. I'm so bad at being ill!

Woke up feeling bit better but now got nasty deep chesty cough, wheezy again and can't take a deep breath without coughing.

Hope you manage to see the gp this afternoon, and you can get some antibiotics and pred that you obviously need.

Sorry to hear you are having a bad time with your asthma.

Does sound like you are brewing an infection so I hope you have been/going to GP and he gives you the meds you need.

Take care x

Think it's prob cold not infection but most likely need pred to sort out my chest. I do get infection type symptoms with asthma flare ups but often go with just pred and not antibiotics. Haven't had a temp so think more likely just bad cold. Hoping app will be later towards 6 so I have more symptoms as middle of the day is good for me.

Yeah its typical you get appointments during the best part of the day, let's hope a later appointment let's the doctor see what things are really like for you. Fingers crossed, keep us posted

in reply to

Yeah its typical you get appointments during the best part of the day, let's hope a later appointment let's the doctor see what things are really like for you. Fingers crossed, keep us posted

That's no accident or white-coat reaction - its well documented that there is a diurnal rhythm to peak flow - lowest in the early morning hours, rising throughout the morning, highest in the mid afternoon or early evening - which is exactly the time for appointments.

The irony is that non-asthmatics do NOT have a marked diurnal rhythm - the very fact that one does have such a rhythm is a sign of dysfunction and it is also the very thing that confuses doctors, makes us look like we're well, and makes life hard on us.

Hoping your appointment goes well, Spookymilo.

Well can't get through at all at the moment. I'm a priority for same day appointments so hopefully they may slot me in at the end.

Thats interesting, I knew its common for PF to be higher in the afternoons but didnt know its not the same for non-asthmatics. I said to my cons a few weeks ago that she always sees me at the best time of the day, she laughed and said running an asthma clinic first thing on a Monday morning would be the fastest way to give herself a nervous breakdown!

Managed to get in at end of surgery, hadn't had any ventolin for a while so was actually symptomatic at the time. Pf was low, was coughing and she could hear I was out of breath so gave me pred and antibiotics. Have said will go into work tomorrow although still bit unsure tbh.

You'll recover quicker if you take it easy, why don't you give it at least a day for the pred & antibiotics to kick in before going back to work? Think, if you go in tomorrow, will you really be that productive?

Sorry lecture over! Glad you got sorted anyway.

I had been going to ignore gp's advice and go in anyway but had a really bad night, couldn't get to sleep until after 12 then woke up with a massive coughing fit that needed 10 puffs to settle down so that kind of settled it for me. Now tired and not looking forward to the effect pred has on my sleep.

in reply to

I had been going to ignore gp's advice and go in anyway but had a really bad night, couldn't get to sleep until after 12 then woke up with a massive coughing fit that needed 10 puffs to settle down so that kind of settled it for me. Now tired and not looking forward to the effect pred has on my sleep.

That sounds rough! Hoping the antibiotics and pred do their thing quickly so you can feel better soon.

Thanks. I'm so surprised to suddenly be this bad. Still really breathless, having 2 puffs ventolin every hour. Know it's naughty but other than the cough and breathlessness symptoms not severe. Promise I will go back if still this bad once tablets have had a chance to kick in.

Does anyone else have delayed reactions to things? I've just been out to sit in a cafe and wait for oh to see how I coped with it, was sob walking in, not too bad walking out but now feeling really shaky and heart thumping. Breathing not too bad but due more ventolin at 5. Is it just because I've been sofa surfing for so long?

Trying going into work tomorrow as have a quiet day and can come home if necessary without causing a problem.

Tired so hopefully get a better night tonight. Goodness knows how many puffs of ventolin I've had today but it seems to have done the trick as I'm no longer coughing whilst sitting still.

Glad to hear that you are feeling better and hoping for even better for you in the morning.

Just cried all over my boss, the second she saw me she told me I looked like death and put me straight back in the car to come home. Probably best tbh as my chest was getting really tight and I'm still wheezy and breathless. Don't realistically think I'll be teaching this week. Oh well, another sofa surfing day for me, need to think of something new to do.

So sorrry to hear that today didn't work out for you. Hoping you feel better soon..

Re: too much sofa time and getting winded: I imagine that's the asthma+cold?

Still I think it never hurts to get at least some mild exercise if you can manage it. I make a point of trying to get out and walk about every day even when I'm not feeling great (reliever in purse of course). I figure I don't need to add deconditioning on top of everything else. I don't always do it, but often do. It helps that the shops I need to go to for errands are in walking distance. (Live one block off of high street).

I do agree about exercise but it's tricky to get the balance. All I did today was a short drive, ate breakfast then drove home and it set me right off coughing etc when I had thought the cough was better. This is the worst I've felt in the middle of the day since Saturday. Similarly on Monday going to doctors then to get prescription caused a really bad night. Think I need the asthma to settle down a bit more before I try anything much.

Still can't believe how constantly breathless and wheezy I am, considering I am normally a non-wheezer with main symptom tightness. Think the lack of tightness has lulled me into a false sense of security. Going to go back to gp tomorrow as getting bit concerned about how much ventolin I'm using and still feeling wheezy.

Oh poor you, what a horrible way to feel. Take care of yourself and do whatever feels best for now. Hope it begins to improve soon x

Managed to get another gp appointment for later this morning as need certificate for work because will be 6 days off now. Felt a bit better last night and managed to sleep through for 8 hours :) soon as I move or speak feel breathless again and this morning I do feel tight as well, and it just increases unless I sit still. Going to see how I am on 2 puffs ventolin 4 hrly, which I'm suspecting will be not good - would love it to be enough but don't think so from way things are going. Want to ask gp what I should do if not properly better when steroids finish on Saturday as I really can't be doing with a long flare up like I had a couple of years ago.

Glad to hear you had a good night, and just as glad youre going back to the gp. When I had pneumonia a couple of years ago I left it a few days after finishing pred and got well and truely told off! Having that gap meant I effectively went back to square one and probably ended up with more overall than if Id had the courses running on without the gap.

Got the certificate and gp said to come back Monday if still feeling bad on Sunday. Pf was lower than last time despite 3 lots of pred which worries me slightly. O2 sats 97 - would anyone naturally vary between 96 and 99 or is a reading lower than 99 a sign that something's going on?

When I was last in hospital, the nurses said that anything above 92 was OK. It was normal to vary from one minute to the next.

They only got concerned when it went below 92%

James.

Ok. Gp seemed a bit concerned when mine was down to 94, but she tried another finger and it was 97. Just wondering whether it's a sign of worse asthma to be 97 rather than 99, or could that happen in a healthy person? Just curious really, don't think I've had anything below 98 before.

Most of the time mine varies between 96-99% so personally, I wouldn't worry too much.

I vaguely remember the asthma nurse putting the monitor on herself and it varied a bit as well.

Thanks, not really worried, just curious.

My evening peak flows are creeping up which is good but mornings are still very low for me. Just got to wait and see whether the last two days of steroids sort things out. Not sure what gp intends to do if they don't - extend the course? If I'm still not well enough for work can't just leave things. Only just realising how unwell I've been - still can't get my head round much at all, found myself singing and dancing a little to music earlier and was surprised at myself.

Hoping GP visit went well and more importantly that you start feeling better soon.

Managed to sleep through again and think antibs might be clearing up infection now. Fingers crossed. Asthma still a pain, tight, breathless and wheezy after coming downstairs and getting a glass of water. Still quite unsure will be better after finishing steroids as they've usually had a more pronounced effect by now.

Gp was lovely and gave me strict instructions to return on Monday if not better, she understands that my chest usually sounds fine but is happy to go by how I look and what I tell her.

Feeling really frustrated, still so breathless and tight. Heart thumping after last lot of ventolin. Feel a bit more with it in myself but really haven't done anything except walk around the house and I'm completely puffed out. Last lot of pred tomorrow, really worried it won't be enough and won't be fit for work on Monday.

Sorry for repeated moans, was feeling a bit sorry for myself. Managed a short outing today, feeling it a little bit this evening but coping with regular ventolin. Shattered so going to bed early.

Thanks to anyone who has been replying this week, it really helps just to keep track of what is going on and have some sympathy/good advice.

Sorry to hear its taking so long to resolve, hope you have a good sleep and feel better tomorrow x

Last day of pred today, can tell infection is resolving but not convinced about asthma. Peak flow is still very variable for me and have switched from being wheezy back to constant tightness and heavy chest. Think will probably have to go back to gp on Monday but being on pred for longer worries me as never had more than the 5 days before.

spooky- sorry you're still struggling. It sometimes takes a bit more pred to get lungs happy again. It's better to lengthen your course for a few days than try to struggle through and end up poorly for a long time.

Thanks, emotional effects of pred not helping at the moment, the thought of not being ready for work on Monday is making me quite tearful, hate missing things :( think I know sensible choice really but not wanting to accept it.

in reply to

Sorry to hear that lungs are still giving you trouble.

Thanks, emotional effects of pred not helping at the moment, the thought of not being ready for work on Monday is making me quite tearful, hate missing things :( think I know sensible choice really but not wanting to accept it.

Could be the pred, but maybe it's also just that it is hard being sick longer than you expect? It gets in the way of so much. We wouldn't plan activities if we didn't want and enjoy or need them. Sometimes with asthma I feel like I'm playing my own parent. There is the sensible adult me that knows what I ""should"" do and the cranky adolescent that says ""DON'T WANNA"". The adult usually wins, but that doesn't mean there isn't an inner battle.

Hoping you feel better soon.

Beth youre so right. I find myself tearful and stroppy far more often when my asthma is playing up, it feels like its in control of my life not the other way round and I hate it. I also get what you mean about the inner adult and teenager - Id even say toddler on occasion! My enthusiasm for life hasnt changed, sometimes I'll hear a track that I used for teaching aerobics and start moving to it, yet I know I cant risk even 5mins messing about most days. I think its something drs should be more aware of too.

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