Diagnosed with suspected Asthma after having Covid

[flangemousses74]

Hi there, please can somebody help me? Both my little girl and I had Covid back in Mar last year. We were so ill & could barely breathe. My daughter had just been given a Salbutamol for her newly diagnosed Asthma but then we both ended up on Steroid & reliever inhalers. It was so scary & still is. Due to Covid, nobody seems to know what damage has been done. I've had 2 chest xrays which came back normal. They put my daughter on Montelukast which seems to be managing her symptoms but she is now prone to chest infections. I am still just as ill as I was then sometimes. I don't understand Asthma at all. I had it as a child but I'm told adult Asthma is different. I don't think anything is managing my symptoms fully. I have such tightness & wheezing/rattling when at my worst. I have to really put effort into getting a deep breath & even force a cough or a yawn. We have both had to really push for an Asthma check & it was a waste of time as due to Covid, they will no longer listen to your chest. I have been left to get on with it & honestly, I'm scared. Feeling like you have to put so much effort into taking every breath is exhausting & as for doing much, I have to sit down after doing most things now. They started me off on Qvar & Salbutamol as needed but I kept getting mouth thrush & also felt it did nothing for me so they changed me to Fostair. So far, I feel like nothing really 100% is helping me. What I genuinely can't understand is it seems to go in cycles. I feel relatively normal & think I may be turning a corner & then not long after, I feel dreadful again. I genuinely don't know what to do anymore. I also have panic attacks when it gets really bad. Especially when trying i sleep.

[twinkly29]

Hi! Sounds like you've been struggling for a long time which must be very frustrating.

Not sure what you mean by the damage that's been done - by the covid? If the chest x-rays are ok then probably none. Although covid can affect the lungs at the time (ie cause symptoms like breathlessness and, in some people, pneumonia) it doesn't always cause respiratory symptoms. Equally it's not a given that long-term symptoms will be breathing related.

Of course in your case you have got ongoing breathing symptoms - these may be asthma but they may also not be. Much of post covid breathing symptoms are not actually asthma - the symptoms kind of appear similar (eg shortness of breath) but they symptoms are actually quite different to asthma. That aouns weird I know, it's hard to explain - when I had covid I just knew from the way it felt that it wasn't asthma symptoms (having constant asthma issues it was maybe easier for me to notice the difference - I think people with more mild/moderate asthma that's usually well controlled and so they don't have issues normally, or indeed those who didn't have it before, would just assume breathing issues = asthma).

The key though is that the covid breathing issues are more linked to the way we breathe (and not inflammation) and do not respond to asthma medications - but they do respond to breathing exercises. I was quite astounded how well this works when they appear (mainly because although good as regular long-term support for my asthma, they do not help when symptomatic; with covid issues they did hugely.)

Like I said, yes it could still be asthma but some of it after all this time will probably also be breathing pattern issues - because that's normal after struggling for so long. Anxiety and and panic attacks are another issue that is completely understandable in your situation but also mimic asthma in terms of symptoms yet also don't respond to asthma meds. If asthma meds have helped to a point, it might be that the asthma side of things has actually settled withe meds, but the remaining symptoms are linked to breathing pattern issues and/or anxiety. From friends struggling with long covid, the coming in waves thing/yo-yo recovery is quite classic for that.

Asthma wise, having your chest listened to isn't really that helpful - many asthmatics don't wheeze anyway and, for those who do, if they're not wheezing literally at the snapshot moment of the "listen" then it doesn't help. So phone appointments should be just as useful - so do keep going back to them if you need to.

It might be worth phoning the Asthma UK nurses to get some advice. Their helpline is 0300 2225800 Mon-Fri, 9am-5pm.

These posts might help too...

A new to asthma post for what should be happening in asthma treatment:

healthunlocked.com/asthmauk...

These next 2 are also linked to in the new to asthma post.

A post about inhalers:

healthunlocked.com/asthmauk...

Peak flow:

healthunlocked.com/asthmauk...

A post about asthma mimics like breathing pattern issues and anxiety:

healthunlocked.com/asthmauk...

This site has really good breathing techniques on it (recommended by a respiratory physiotherapist - physio is a key part of what works for post covid breathing issues; the exercises will help long-term with asthma anyway but really help when you get the symptoms at the time linked to covid - whereas ventolin etc tends not to help):

lifeguidehealth.org/player/...

The Breathing Rectangle here I find really good and relieves on the spot symptoms very quickly (when it's not asthma) - scroll to the relevant bit but the whole page is good for a read:

blf.org.uk/support-for-you/...

Sorry that's all so long - hopefully some of it will be useful. It does sound like you have multiple issues going on which need sorting in different ways - if you can sort out any breathing pattern issues then at least that's one thing, and then you might find the asthma side is actually under control.

[Poobah]

I'm so sorry you've had such a horrible time of it. The NHS has recognised the need for more targeted treatment for those who are still suffering from the affects of long covid and new clinics are being organised. Here's a link to one NHS Trust's long covid page southernhealth.nhs.uk/about... sure if you Google your local NHS Trust that there will be similar services. As Twinkly explained, ongoing breathing problems after covid may not be asthma and treating with asthma meds may not help sufficiently well.

Just one example and may not be similar to your experience, but my sister had covid last March & April and ended up with long term breathlessness and fatigue. She now has an overnight breathing machine and oxygen for day use if necessary, which has helped enormously. The hospital had to admit her last September to monitor what was happening and found her oxygen levels were all over the place throughout a 24 hour cycle - no pattern despite monitoring for a week, but they decided that by treating her overnight with oxygen made her day levels less erratic. It appears to have really helped and even though she's not back to normal, she is much improved.

It looks like a GP referral is needed to access the long covid service. Don't hesitate to go back to your GP to explain that the asthma meds aren't working and ask to be referred. All the best.

[twinkly29 in reply to Poobah]

Glad your sister is better than she was. Hopefully it's also not a common thing with long covid (and also I hope at some point your sister won't need what she's on now - and good it was picked up) but it's another example that not all breathing symptoms are asthma.

With any luck all areas will have post covid support/referral systems - if not they need to!

[Bevvy]

Sorry to hear how you are struggling and really concur with suggestions already given . However I also note that you think are getting better and then feel dreadful again. It may well be that in the getting better stage you are trying to do too much hence then feeling very unwell again. You need to learn something called “pacing” a technique which can be taught by an OT or you can get information online. Sounds like you are stuck in a circle and need help to reset everything.As Poohbah has said you really need to access a long Covid clinic. Go back to gp and explain what you have told us and insist on a referral.

[Blouise1504]

Hi!! I understand your pain seriously. I got covid in April 2020 and then flu December which then caused a serious chest infection and I was then only diagnosed with asthma in Feb after my chest x-rays came back clear and sometimes my inhalers would help calm it . How long have you been diagnosed with asthma? If it's not that long honestly it's hard to get treatment right, inhalers don't fit everyone. I used to take 6 medications a day for mine and recently gone down to 4 as they think two weren't helping. I've also tried 3 different steriod inhalers. It's honestly a long road. As others said it might be long covid but it may be asthma unfortunately this is new for doctor's and they don't fully understand it still and as my doctor said they don't fully understand mine just yet due to the covid causing it. Are you taking any other medication with the asthma medication? I had blood pressure tablets which actually made it worst which is why they've completely changed my treatment plan and there are other medications which can? Also steriod inhalers can take a while to work especially in an adult body. My doctor told me it's usually 3-4 weeks to be in full effect. Also are you taking the powder fostair?? I changed from that as it irritated my throat, still fostair but it's a normal inhaler. Don't feel bad as well about constantly ringing the doctors, I ring them about twice a week! But they are lovely about it, asthma needs to be controlled and they should help you as much as they can. Lmk about my questions and anything else just ask. We will get through this!!

[iqibee]

I am in the same boat. Did you get any answers? How are you now?