New here looking for some help!

[Gonewiththewindddddd]

Hi all. I’ve just found this forum as I’ve been lokkkng for help for quite some time. I’ve had the weirdest thing happen……

Bit of a back story first…..I never had asthma my entire life. Until I got COVID for the first time in August 2021. I was considered high risk as it was as I also have rheumatoid arthritis and 10 other auto immune diseases. So my body generally loves to hate me. On day 8 of having COVID my husband had to call 999 as I couldn’t breathe. Paramedics came and my O2 was at 78. I was hospitalised for a week and ALMOST put on a ventilator. Dr told me I have COVID lungs and was now an asthmatic.

So I’ve had a few more asthma related issues. Every time I get COVID it goes straight to my lungs. I ALWAYS get a chest infection. I struggle sometimes for no reason. Get wheezy etc. But the latest thing……is CRAZY!

I went to a gig. In a very small venue in Lincoln. I saw one of my favourite bands, Echobelly. It was an intimate setting……with a fog machine. It was blowing so much fog that the band was suffering. As soon as it started spilling into the audience (I was front and center) I started coughing. Not lots. But enough. Tried to wave it past my face but it was THICK. Smelled funny and tasted funny too. Finally on the last song the lead singer asked for them to turn it off. I was still coughing periodically after it stopped. But nothing to write home about. By the time I got home…..I was wheezing so bad. I thought….Hmmmm that’s strange. Must be a fluke and went to bed. Woke up, coughing, wheezing, voice sounding weird. All of it. Started my inhalers and nebuliser. I was flying to the US in a few days so called the GP for some antibiotics just in case it turned into a chest infection. Which it didn’t. Once I got to the US it got soooooo much worse. I ended uk with tonsillitis so used the antibiotics I’d gotten from the GP. This amount of coughing and tonsillitis was not fun by any means. Got over the tonsillitis in a couple of days. Cough remained. I got back from the US in a complete mess. Can’t breathe, ribs hurting, coughing like mad. I flew in on a Tuesday and went to GP on Wednesday morning. I told them the story of the fog machine everything. GP said I’m having an asthma attack (severe) from an infection. Like chest infection Which I don’t think I had. So it’s been a month now. And here I sit. Coughing, wheezing. Any ideas? Any help? Thanks in advance!

[shadyshaderton]

Hi

I've been triggered by smoke machines esp when performing on stage and it's piling out. This is despite the fact it's dry ice and supposedly 'safe' and shouldn't. But I also have a condition called ILO (induced laryngeal obstruction) where these sort of irritants change the usual air you breath can trigger and if I don't do the breathing exercises I now have to reopen my upper airway then it can turn into a full blown asthma exacerbation.

I would say talk to the asthma UK helpline for advice as you've had more than just the theatre incident causing your asthma to worsen. A long flight to US and back with air changes and the like prob not helped. (Have you flown distances like that before and been ok?)

When you get something new on top of other conditions things are never that straightforward to separate out what's going on unfortunately. Good luck with getting some answers and plan in place to help get you more symptom free

[Gonewiththewindddddd in reply to shadyshaderton]

wow so crazy! Yes I travel back and forth quite often as I’m an American living in the UK. I’ve never had a problem…..but on my flights back home it really set me back once I got back in the UK. I’m just not sure what to do? Like I said I’ve been to the GP currently in steroids….day 3, with little change. She said it could last another 3-4 weeks!!!!!! Ugh. I’m just at a loss as I’ve never ever had this happen before!

[Whizzymaz]

Hi, Yes, after suffering from asthma since I was a child which was controlled, I was diagnosed with severe, difficult to treat asthma and I'm now on Fasenra injections and yes during the two concerts I've attended in the last 12 months I have an asthma exacerbation on both occasions. The second time I took a mask with me and we fortunately found some empty seats towards the back of the theatre, both of which helped.

[Gonewiththewindddddd in reply to Whizzymaz]

Wow. In a way it’s good to know I’m not alone…..or indeed going crazy! But it’s awful that it comes to this? I mean if it happens again I’ll have to leave? Seems like there should be some kind of effort made on the venues part?????

[risabel59]

Smoke machines are a really bad trigger for me as well. I've had to leave performances but sometimes it depends on what kind of smoke machine, not all of them are dry ice, some are some sort of oil base. Once you flare up, its easy to get an infection, or at least I find that.

Cheers

R

[Gonewiththewindddddd in reply to risabel59]

Wow! So crazy. And also…..a bit scary? I go to sooooooo many gigs! I’m hoping that it never happens again. Can I ask how long it lasted? I’m seriously a month in. And I just am SICK of it!

[risabel59]

Its really difficult to know, for me it depends a little bit on how my lungs were before being abused. If I am really well then I get over a little attack really quickly. If wasn't all that well (In asthma terms) then it can take a few weeks. So an example for me would be, that I am only just getting back to normal numbers after I was unwell at easter. If I encountered a smoke machine today, I might be alright if I wasn't too close to it. About 6 weeks ago I would have had to have left the venue if they started using smoke. If you are going to a theatre performance you can always ring the theatre beforehand and ask if you think smoke might be on the agenda. Normally they are very helpful. Its harder for music gigs, but you can always trying asking the venue. I would say avoid putting yourself in this situation unless you are really well (in terms of asthma)

Cheers R

[Gonewiththewindddddd in reply to risabel59]

Thanks for that! I was completely fine before the gig. Nothing. No problems. I king EVER get asthma before from covid so this one has really thrown me. I just feel so awful. I have no voice. Coughing day and night. It’s probably time for another call to the GP. My doctor surgery is cited the second worse in the UK so getting a hold of them is quite difficult! Tomorrow is day 4 of steroids and I really haven’t noticed a difference. And I don’t know if that’s normal or not either! It’s all new to me! Thank you!

[Ern007 in reply to Gonewiththewindddddd]

Hi Gonewiththewindddddd - Reading you nenver got Asthma before Covid.- Just lateral thinking he, It could be covid that given you these problems. I had asthma and still do to a degree. lots of thinks kick mt off like scents from air freshioners, I went worse when I cot COPD as my asthma was under control - Smoke machince would get me going and would a lot more.

Reading what you have said ignoring the smoke, I think being this has been sinse covid -You I think need testing for your asthma-like symptoms .

You need answers I think,

Good Luck.

[Gonewiththewindddddd in reply to Ern007]

I agree…..answers would be great! My husband is calling the venue today to see WHAT they used in that smoke machine! Maybe something will lead somewhere!

[johnmu]

I suffer similarly with Smokey atmospheres. Log burning stoves and diesel fumes are a particular bugbear. I find that wearing a good face mask of FP2 or 3 standard which seals well around the nose and mouth really helps. I always carry one when I go out. Not a good look but very effective for me.

[Gonewiththewindddddd in reply to johnmu]

Thank you for this!

[Evie3]

I have also had back to back chest infections….asthma was mentioned. I had Covid once but I am not having another jab. Take care

[Gonewiththewindddddd in reply to Evie3]

Bless you! Yes I won’t do the jabs either!

[Patk1]

Sounds like covid left u withsensitive Airways.ru protecting yrself frm viral infections on plane,at airport,gigs etc? U really should as common vold,flu,covid etc can all set asthma off and lead to infections/ exacerbations/flareups.I carry handgel + masks everywhere + use vicks rescue nosespray+ coldzyme throat spray - both neutralise viral particles

U need to avoid people with viral infections+ atmospheres that trigger yr asthma.perhaps choose seat furthest away frm smoke,nr door + use salbutamol beforehand.

Hope u soon feel better.perhaps using salbutamol inhaler more often may help? Pollens v high in uk at present - maybe worth trying otc antihistamin to see if helps

[Gonewiththewindddddd in reply to Patk1]

Thanks so much for this! I do protect myself as best as I can. Especially since I take injections of chemo to combat the rheumatoid arthritis. So I don’t have much of an immune system as it is! But because I was feeling completely fine……and the smoke machine was the only difference I didn’t think it would be a big deal at all! What is salbutamol?

I’ve just gone back to GP! He said……..I need to go to ENT to get my voice box checked which I think is ridiculous. It’s not my throat! I don’t have a voice from coughing so much!!!!!!! Also since the gig my throat was weird straight after! I got a chest X-ray. And he wants to order a chest CT. I’m not exactly sure???? Why????? He just said that there’s nothing he could really do to help me today. The steroids didn’t seem to work. He said I should keep doing my inhalers. My chest is hurting more today than my lungs? Honestly I feel like a hot mess. I feel just so……poisoned.

[Patk1 in reply to Gonewiththewindddddd]

Salbutamol/ ventolin is blue reliever inhaler .hope u soon feel better

[Gonewiththewindddddd in reply to Patk1]

Oh right gotcha thanks! Yes I have that one. GP told me to use it whenever I feel breathless. Which honestly….is all the time these days!

[Patk1 in reply to Gonewiththewindddddd]

I'd use it regularly til improve,and especially whn coughing

[Evie3 in reply to Patk1]

Goodadvice and thankfully I do all that too whilst trying to enjoy my life 🤗

[Patk1 in reply to Evie3]

Yes it's all we can do.have they not diagnosed asthma yet? Correct treatment would help settle it down.do put a specimen in ig mucous looks infected to get correct antibiotics x

[Gonewiththewindddddd in reply to Patk1]

Yes I’ve been waiting for the appointment for all of that. I’m HOPING it comes soon! They said there’s no point in doing one now? Which doesn’t make a lot of sense because I have the problem NOW! Thank you

[Patk1 in reply to Gonewiththewindddddd]

If u know name of consultant,worth ring their secretary to chase it up.meanwhile use ur salbutamol inhaler when you need it

[Gonewiththewindddddd in reply to Patk1]

Thanks so much!

[Evie3 in reply to Patk1]

Yes I always do sputum at least u get correct antibiotic. I had asthma badly as a child then ‘grew out of it’. As I got older I was told I had well controlled asthma…never having an exacerbation until starting an RA immunosuppressant drug, which helped with my RA pain and gave me my life back. However probably hasnt helped with my chest issues so not going to b on that drug anymore 😭. I have also got the genetic disease Alpha 1 Antitrypsen Deficiency which I really think is responsible. Drs here dont know anything about it. So I plod on. Take care

[Gonewiththewindddddd in reply to Evie3]

Oh wow! Yes I have RA too. I take methotrexate and barcininitib. Methotrexate been on for years without the normal side affects. The barcininitib is new……around the time of the gig………..I’d NEVER thought of that! May I ask what RA drug you weee kn the exasperated your asthma? An FB yes I agree….they know nothing. Do not much either! Thank you again!

[Evie3 in reply to Gonewiththewindddddd]

Rituximab…..last single infusion August….still working well…powerful stuff…..but makes you severely immunosuppressed 🙄

[Gonewiththewindddddd in reply to Evie3]

😪 I’m so sorry!

[Patk1 in reply to Evie3]

You've a lot on.is there not a specialist chest unit with research projects nearby? I'm on biologic( fasenra- benrazilumab) for mu severe eosinophilliac asthma.iy really helps.could it b an option for you? My son has rh arthritis.some treatments are v harsh on body.he tried 1 but made him ill.hes opting for cryotherapy,plus an ice pod at home.i couldn't do either!🥶.he takes some supplements+ has learnt to distress massively,all of which r reducing inflammatory levels..for now.fortunately he doesn't have breathing probs.u need specialist care x

[Evie3 in reply to Patk1]

No…and probably too old…early 70’s. When I started Rituximab in 2019 I was fine. Makes me think that when I caught Covid thats when my chest problems started. Must look through my records🤔

[Gonewiththewindddddd in reply to Evie3]

Yes! I was on the chest front until I got covid. Until the DAY I started feeling sick and tested positive with covid. Was wheezing from the start. Lasted 8 days battling at home for air. When the ambulance came my O2 was 78 and I thought I was going to die. Ever since…..any time k get sick goes straight to my chest! Until the fog machine…….

If you find your records let me know!

[Gonewiththewindddddd in reply to Patk1]

Oh bless him. Yes I take lots and lots of supplements. Try to keep my stress down as much as humanly possible! I can’t do the coke as have a disease called raynauds. So no cold for me!

[Dpotter]

the smoke machine would have set me off too. Very common trigger. My lungs don’t like flying either so it was probably a double whammy for you. Asthma is a strange disease…no 2 people react the same. In fact some things that would trigger me one day I may be fine with the next…it’s a bit of a lottery! One thing that is sure to floor you though is any sort of infection…it seems to creep to your lungs eventually. Wishing you well x

[Gonewiththewindddddd in reply to Dpotter]

Thank you so much! Yes I think flying definitely didn’t help! And I flew 14+ hours twice in 10 days. So it was a quick trip…..but I definitely slid back down after flying to the US. And once getting back to the UK.

Question……do you feel like you’ve been…..poisoned after like a smoke machine? I just have this very odd feeling. I can’t even put my finger on it……and since I’m new to the whole asthma scene I can’t say for certain if this is what it’s like???? If that makes sense? I STILL don’t have a voice. It’s been one month and 3 days. I feel like initially it was DEEP in my lungs……and now it’s more chesty? The whole thing is weird! Have you lost your voice from asthma before? The GP seems to think I need an ENT for my voice box issue. But I don’t HAVE a voice box issue. I have a coughing/lung issue! That’s why I don’t have a voice. Sorry to ask so many questions…..I just honestly don’t know what to do? Or who to turn to! Google only gives you so many answers! Ha!

[Dpotter]

I often lose my voice..it’s all the coughing. Though I am prone to getting laryngitis too. Unfortunately once your lungs have been upset they can be super sensitive for months. I have been set off by someone walking past me and changing the air flow before now. It’s also quite common to not be able to use your full lung capacity when you’re having an exacerbation…you end up breathing at the top of your chest and the gunk builds up lower down. I find deep breathing exercises useful as I’m recovering to get the lungs working again and cough up all the c£&#! But you need to be patient with yourself and try not to do to much til you’re feeling better….pottering about is good 🤣 and honey is very soothing for the throat . Take care x

[Gonewiththewindddddd in reply to Dpotter]

Oh wow. In a way it’s good to know I’m not the only one who has lost my voice from coughing like a crazy woman for a month! My throat is sore all the time. Even whispering. Although today…….is the BEST day I’ve had in over a month. I still have a firey feeling when I cough up high in my chest…..but coughing isn’t as bad or as frequent.

I think you’re right about lungs are going to be sensitive. I went to see Sting last night in Sherwood Forest…..we sat on our own away from everyone. But, people were smoking (not near me but I could see them and smell it!) and I would feel a bit tight in the chest. Normally….. I wouldn’t be bothered at all!

And definitely good advice on not trying to do too much. That is me. Like I said today I felt better and my instinct was to go mow the lawn! Hahahaha. My husband stopped me! But I am my worst own enemy at times. I’ll take your advice and just keep relaxing. I seem to want to sleep alllllllllll the time which is very much unlike my normal self. Usually I’m a. Insomniac and now I’ve gone the other way and can’t stay awake! All of this is just so foreign to me. I have rheumatoid arthritis….I know exactly how this pain feels like or that…..but I have never ever felt like this before so I just don’t know what is “normal” and what’s not! Thank you for your help and advice! I truly appreciate everyone taking the time to help me and my sad lungs! Xx

[Dpotter]

it’s very tiring struggling to breath….breathing is definitely underrated 🤣. I’m always very tired after an exacerbation. You’ll soon learn your new normal. And thank goodness your husband stopped you mowing the lawn. Your job is to sit and watch and point out any bits he has missed 🤣🤣

[Gonewiththewindddddd in reply to Dpotter]

Hahahahaha! It IS exhausting for sure!!!! He’ll LOVE me pointing out the bits he missed!!!! Hahahaha xx