Triggered since Dec 19

[Tired36]

Hi everyone,

In December 19 I got a virus (I wasn't tested as wasn't supposed to be here then, but suspect it was covid) I was incredibly up and down between then and Feb 20.

During the time I was poorly I just felt awful heart racing , dizzy , flu symptoms, brain fog and of course my asthma which has been well controlled for 25 years suddenly played up. When it finally lifted I still couldn't seem to get my ashtma back under control.

I'm still, almost a year after being ill, using my brown inhaler (clenil) 4 times a day (2 pumps) but I feel almost constantly like I'm breathing through cotton wool.

It's worse when moving around but it's bad even when I'm just sitting.

My peak flow is 400-450 normally and at this point it's around 400 so not particularly low at all though performing the test leaves me feeling worse for a few minutes which is nice ( with sarcasm)

I just don't know what to do. I'm not having attacks I'm just uncomfortable all the time with this high respiratory dry feeling like I'm irritated. Does anyone have any suggestions please?

Tia

[twinkly29]

Have you spoken to a GP about your symptoms? Also is your clenil inhaler prescribed to be 4 times a day? It's usually twice a day but if that's not improving your symptoms then maybe you could do with a change in inhaler?

Having said that, if you're symptomatic do you take ventolin and does it help? If you do, it might be an idea to do your peak flow before, then use the ventolin and then redo your peak flow 15 mins later. That should help to show if it's asthma symptoms you're feeling or possibly "post maybe covid" symptoms. Some people find their peak flow doesn't drop much with asthma but does increase with ventolin.

The Asthma UK post covid hub might be another avenue for you. The nurses will, I'm sure, have spoken to many in your situation who quite possibly had covid but aren't sure and might be able to help? Post COVID hub - 0300 2225942

[Tired36 in reply to twinkly29]

Hi thanks for the reply. I haven't been able to get an appointment since September. I haven't been having attacks so haven't wanted to push for an emergency appointment as I imagine living in Essex they have their hands full. My asthma care plan states to up dose to four lots of two pumps a day when struggling but it isn't supposed to be a long term solution. I use the ventolin when I'm feeling bad and it helps but the irritation is just so uncomfortable.

It's more a constant feeling like I'm trying to breath through cotton wool. It's been so well controlled since I was 15 I can't even remember what it was like to have attacks thankfully. Normally only virus or hayfever triggers breathing difficulties but this is just constant.

It's getting me down

[twinkly29 in reply to Tired36]

They most likely won't give you a face to face appointment but should do phone ones - which can actually be more useful anyway (discussion of symptoms and the impact of ventolin on both symptoms and peak flow would be key parts of this)

But the post covid hub is definitely worth a go - sounds like you could do with talking to someone and maybe that would be easier at the moment? If you need a change to your inhaler for example, that won't happen unless you do. If you speak to AUK, you could always use that to get a phone appointment, eg I've spoken to AUK who say I need to speak to a GP...

[Tired36 in reply to twinkly29]

Thank you I've just called my Dr surgery and asked for a telephone appointment again. They can fit me in on the 22nd so at least I have an app now. I'll definitely be asking to look at meds.Thanks so much for replying just feels like someone is listening

[twinkly29 in reply to Tired36]

Oh good well done (sorry that sounds really patronising! It's so easy to feel they have better things to do but they do want to hear about stuff like this.)

It might be worth mentioning the possible post covid thing because if it is that that's causing your issues then asthma meds may not help. But of course that's not to say you shouldn't try any because it might be a mixture of things anyway. I know others on here with probable post covid symptoms have found a combi inhaler to really help (one that combines the steroid from the brown with a long-acting version of the blue) so maybe your GP will suggest something like that.

And no worries re listening - that can make a huge difference and I've been there too as have many others on here 🙂

[478breath in reply to Tired36]

Hi there sorry to ask but is it possible to update post Drs appointment please? I’ve been the same since March, asthma first time in 15 years etc not needed any inhalers now on Fostair and Blue. Did feel improvement but now struggling again. Can’t walk far etc so interested in what your Doctor advises. However totally respect you may wish to keep it private. Good luck.

[Tired36 in reply to 478breath]

Nah I'm happy to share info. I've spoken to lots of people who have had similar issues. My sister has been given a med as well as inhalers. It starts with an M but can't remember the name. She has had improvement but still not better. Just wondering what the hell this has done to my lungs

I'll shout after my app.

[478breath in reply to Tired36]

I know, again I feel your concern. I worry about my lungs so much, my peak flow hasn’t improved above 250 since March and you described how I feel...breathing through cotton wool!!!!😟 While I was never gym fit, I walked two hours a day, cannot walk 200m at a decent pace now... thanks for ‘listening’ and again good luck at the Drs. Stay safe

[Tired36 in reply to twinkly29]

So Ive just had my appointment on the phone. She has basically said that my peak flow doesn't appear to be affected and it previously got better when we upped my dose of clinile so she isn't convinced it's my asthma 😡 I asked what else it could be and she said I don't know, maybe worth a gp appointment and/or chest x-ray. She has changed my life long asthma meds to something called fostair ? She said will call back in a month to see how it is but despite this i felt really fobbed off like she thinks it's all in my head.

I was really upset and explained that while I don't feel like I'm going to die I also am so uncomfortable most of the time and she said well I don't know 😭😭😭 fed up.

I don't have a mucusy cough so don't really see the point of an x-ray ? Someone please tell me something that will make me feel better about being no closer to an answer.

[twinkly29 in reply to Tired36]

She won't be thinking it's in your head but I totally get that feeling because I always feel exactly the same. The GP may be able to help more with other thoughts (more than the nurse I mean).

Does your peak flow improve if you take it when symptomatic and then again 15 mins after ventolin? That could be a useful indicator.

This post explains some of the similarities and differences of asthma, anxiety and breathing pattern disorders in case that's any help.... breathing pattern disorders can be very common alongside asthma (both with/ immediately after an acute episode and particularly when issues are more ongoing) and I suspect are a massive part of post covid issues. The symptoms can be identical to asthma in many respects but peak flow and responses to asthma meds are different to those with asthma. But it's definitely a real thing and not in people's heads.

healthunlocked.com/asthmauk...

The post covid hub that Asthma UK have might also be useful - especially as they'll have the asthma knowledge as well as (I imagine by now) a wealth of knowledge of people's varying experiences of post covid symptoms (confirmed and suspected).

[Tired36 in reply to twinkly29]

Hey thanks again. I've only just started using a PF at home but when I've tested while the feeling is particularly bad it doesn't seem to be any different maybe a drop of around 20-30 at the very worse. I did consider anxiety caused by life and covid but the more I consider that the cause, the more I'm not convinced. When it's really bad I'm not sitting anxious or concerned feeling like oh no I cannot breath. Im not even concerned that i cannot handle it as such, its just a constant irritation. It goes on for days like when you have an irritant (cleaning product etc) and it triggers almost a throat narrowing feeling but lower down.

I would have thought that if it was anxiety I would feel some form of panic ? I might be wrong.

The only thing that I'm now worried about is that this annoying feeling is caused by something else entirely and I won't be able to get it sorted due to covid 🤣

[twinkly29 in reply to Tired36]

I was thinking more the breathing pattern side of things than anxiety itself - I know exactly what you mean though about not feeling anxious etc. Yeah the covid situation is a pain generally - although hopefully if people are possibly post covid then they will get support to find out stuff. So maybe use that possible route to access advice?

[Capybara21 in reply to Tired36]

So sorry that they sounded unsympathetic, but a step up from Clenil to Fostair would be the recommended treatment if they do believe you. The Fostair still contains the same medicine as your usual Clenil (the steroid beclometasone) but with an added extra (formoterol) that's like a longer-acting version of Ventolin. I got moved up from Clenil to Fostair after the cough that went around last November (a month of hacking coughing fits and gasping to draw breath in between, and still using ventolin most days a month later) and it made a big difference- I could step outside on a cold morning without automatically reaching for my reliever! Of course different people respond to meds differently and it doesn't work for everyone, so it's good that you've got a follow up in a month, but hopefully it's worth a try.

[Tired36 in reply to Capybara21]

Thank you I'm hoping it makes a difference just so I know once and for all it asthma. I had a good morning but having been out for a walk in the cold I feel a little tight again. Fingers crossed for an improvement.

Thanks for the reply

[478breath in reply to Tired36]

Really disappointed for you....but I am sure, as others have reassured you....they do believe you or they would not have suggested Fostair. Breathing patterns and exercises have helped me tremendously this past couple of weeks...Patrick McKeown - Buteyko Clinic, his videos on YouTube....Coronavirus Breathing Exercises and How to stop asthma attack, panic attack.... Also 4-7-8 Breathing exercise with Andrew Weil MD. Hope you feel better soon

[juneflo53]

You say "I just don't know what to do. I'm not having attacks I'm just uncomfortable all the time with this high respiratory dry feeling like I'm irritated". That's exactly how I am most of the time too.

I have similar experience. I had 3 consecutive "infections" Nov 2019, I am convinced that was COVID. Since then I've been diagnosed asthmatic. Initially on clenil and ventolin but after an asthma attack in Nov 2020, I was hospitalised and changed to Fostair. I agree with everyone else - you need to talk to GP and will probably get a different inhaler. Fostair does help more than clenil did for me. I've had 10 COVID tests since last March, every time it's negative and I think i've got long covid. I'm taking prednisolone now - I asked for this as it's a rescue medication. Ask if you can have that just in case you need it.

My peak flow is only 200-250 at best but i've only been taking it since Nov 2020.

Good luck. It's very worrying, we seem to be diagnosing ourselves at the moment, it does concern me that you have to wait such a long time for an appointment. Maybe you could ask if there is an Asthma nurse who you can have contact to which may be quicker than the GP.

I

[478breath in reply to juneflo53]

Wow, we are all the same???? How many more are looking after their own health? This is quite scary, but selfishly I feel so reassure I am not the only one...sorry to be selfish but I feel better finding this website and forums. Stay safe

[Hidden]

Hi

I just want to chip in. I had covid mid October and have ongoing issues with my asthma which was well controlled. I'm much the same as yourself chest feels tight, peak flow has dropped and a weird dry feeling in my throat. I'm on fostair 100 and montelukast. It really felt like it was working but I've taken a dip the last week but it could be the weather. My asthma is always worse in the cold and heat if that makes sense!

[Tired36]

Thanks for the reply. Going to try the new inhaler and see if that helps x

[CyclingQueen]

Hi there, wishing you well. Do keep us posted. It's such a rollercoaster. I had covid in March and since then have had issues with breathing when I had zero previously. It's very hard to take. I had a CT scan in July which showed small airways inflammation. I was put on Fostair 100 which helped a bit. But in October I had a cold and it has been awful since then. Winter won't have helped! Nothing really works now. I am on Fostair 200, Ventolin and since last week Clenil also. Prednisolone didn't really do much when I took it in November. It is certainly long Covid and very hard to deal with as it is every day. I feel like I breath through a straw or cotton wool as you say. Nothing really relieves it much. I can't do my usual activities. I have yet another appointment with my consultant in a couple of weeks and may have another CT scan to see what on earth has happened as it wasn't as dreadful as it is now. Part of me thinks the meds make it worse or at least the formeterol part of the Fostair. It is getting me very down as I feel like a shadow of my former self. Hoping it improves.

[478breath in reply to CyclingQueen]

I feel the same....a complete shadow of my former self. Laughter was a huge part of my life...now I can’t laugh without coughing...short of breath...breathing through cotton wool etc. Hope you feel better soon

[CyclingQueen in reply to 478breath]

Wishing you well also, it is really tough. Thanks for your reply.

[Tired36]

Ok so I've been using just the fostair for just over a week now and I really feel it's made a difference. The main difference is I'm only using this one not two different inhalers and it doesn't seem to leave that dry feeling in my throatThat may be because I'm only using three times a day and not 2 pumps four times daily 🙄 Hopefully this feeling continues. If you're having similar issues and are using clenil and salbutamol perhaps you could ask to switch too?.

[Casey_87]

I was the same, back in December 2019 until February 2020 I was u well with a virus. Same symptoms I had to drag myself out of bed to go to work, once It passed my asthma became uncontrollable. 9 months down the line and many tests I have been diagnosed with dysfunction breathing, I’m waiting for a respiratory physiotherapist appointment to come through to try and get my breathing back to normal. There no way of telling if we had it back then as I don’t think the tests are too reliable this far along.

[Tired36 in reply to Casey_87]

Yeah I considered paying for the antibodies test but seemed pointless in case it was negative due to being so long ago. I imagine as time goes on more will come to light and they will be able to help. I will say I've seen a marked improvement since changing to fostair