Random info re long covid and asthma - bedtime reading if anyone interested, take what you like from it or not 🙂.

[mylungshateme]

Hi guys,

I know some of you are in a bit of a pickle with previous suspected covid last year, and since then having weird symptoms and asthma being a pain.

I too am in that boat I was exposed twice that I know of beginning of last year (before testing + covid was a big thing) since constantly tachycardic, SOB, fatigued to a whole other level, to name a few!

But still dancing around in circles with respiratory cons for diagnosis (been going on since Aug) before then had a diagnosis severe uncontrolled allergic asthma, eosinophilic asthma.

But now trying to say "its anxiety" or "its Bpd" or anything but asthma! I finally had diagnosis of gp last wk of long covid, but yesterday respiratory cons said no! Here we go again!!! So I'm doing my own research now.

Now we know a huge part of long covid is BPD, tachycardia, SOB, but other conditions like asthma can cause some or all of the above too. Here are some links feel free to read or add more, I'm not saying there gospel but it's a start in reading about something so new.

But if your symptoms are not under control please ring your gp or resp team, do pf before and after reliever an follow action plan!! Know when to get help. Sorry for long post!!! 🤣😂

evidence.nihr.ac.uk/themedr...

nhsinform.scot/illnesses-an...

cnbc.com/2020/10/21/long-co...

aaaai.org/conditions-and-tr...

community.aafa.org/blog/how...

nhs.uk/conditions/asthma/

gov.uk/government/publicati... 🙂x

Covid hub content.e.oneyou.nhs.uk/?Hc...

post-covid.org.uk/get-support/

[Glty]

This is really helpful. I wish we weren't in the same boat but there's some comfort in knowing we're not alone and things are being researched and put in place.

My major symptoms are much worsened asthma, sob, chest pain, tachycardia, extreme fatigue and post-exertional malaise.

I've found out today that I've been waiting so long for my 2nd resp referral because the hospital has decided I need to be seen in the post-covid asthma clinic rather than the asthma clinic (they discharged me after my first referral after finding no evidence of lung damage and me doing embarrassingly well on lung function tests). Which just leaves me stuck in limbo, not bad enough for hospital but symptomatic most days and with little my GP can offer but more ventolin and pred, rather frustrating but I do now finally have an appointment to look forward to (in March).

[Hidden in reply to Glty]

I had covid in mid October and have been left with odd symptoms...tight chest, SOB, erratic heart rate, a flutter in my chest and one side of my throat is dry and its drives me mad! My asthma meds were changed to fostair and montelukast. I've got bloods and an ecg booked but I just feel a bit stuck really

[mylungshateme in reply to Hidden]

I feel your pain.

[mylungshateme in reply to Glty]

I know what you mean doing well with tests I did too and no scarring on lungs but my argument is my ct was done 6 + 7 months after possible covid and antibody test 7 months after which was negative but we know not everyone produces antibodies and if they do not always for long.

I'm glad you found it helpful. I've also asked for 2nd opinion with asthma as their trying to deny it so maybe worth doing so also? I went through my gp so I have it with another trust.

[Glty in reply to mylungshateme]

Yes its something i've already discussed with my GP as the doctor I spoke to didn't seem to listen and got hung up on my peak flow being too high 🤦🏻‍♀️ and told me I needed to get it down to the average. I had quite an argument about how statistics work 🤯

[Singinglouder in reply to Glty]

What? WHAT??!!! Too high, so get down to average? Words fail me...

[mylungshateme in reply to Glty]

Wtaf ?? Omg I mean it just sums it up doesn't it really... x

[Lysistrata Administrator Community Ambassador in reply to Glty]

Wtf I can't. I thought I was already cynical enough but what. From a doctor. I have had arguments about the statistics around peak flow too (too many HCPs do not understand that average does NOT mean everyone has to be that). But actually saying you are not average so try to be. 😱😱😱

I did have a triage nurse once inform me that my best PF was impossible because I am not a man. I'm also about 4 inches taller than the average UK woman, but presumably those inches don't really exist. I only wish my larger than average feet were actually the average too - I should just buy size 6s anyway right?

[Glty in reply to Lysistrata]

I know! I was really upset after that and their insistence I was over medicated. Thankfully my GP agreed that reducing my meds was only a good idea if I was stable and had a good period of stability so I didn't. Still the consultant discharged me and then within 2 weeks I was back on pred 🤦🏻‍♀️. The fact I'm really short but have a high peak flow just confuses them more.

[Lysistrata Administrator Community Ambassador in reply to Glty]

Ugh! Glad you had a good GP. I've had similar from consultants but even with all the zingers I've heard, yours is jaw-dropping!

I am not short but my best is still well over predicted plus doesn't drop neatly (can have dodgy ABGs and still be over 50% predicted), so I confuse them and then they just don't want to know. Variability doesn't seem to be well understood.

I really hope you get somewhere as it sounds awful and I have been there!

[mylungshateme in reply to Lysistrata]

Well that's another for our unicorn club!! 🤣😂 x

[Lysistrata Administrator Community Ambassador in reply to mylungshateme]

Check out my avatar 😂😂🦄🦄

Don't think I have had COVID, but my weirdness started 11 years ago after swine flu (on a background of mild childhood asthma and a lot of family history). Post viral stuff can be really odd and I have had similar experiences. We're now more onto 'you have asthma but it's weird and I can't deal with that so let's say it isn't responsible for anything you experience'.

[mylungshateme in reply to Glty]

I dont even know why I'm shocked really. I mean do we ever leave the consultants feeling happy.. more often than not were left feeling traumatised for weeks or months after because of their lovely words to us. I thought I'd had a bad experience but yours 😱. X

[Nmstoday]

Thanks for posting that info - on week 5 post-covid and feeling breathless and now on pred but I didn't have breathing issues in the acute phase so I now don't know if it is asthma or covid as I have atypical symptoms normally - it has encouraged me to go back to my gp if I don't start feeling better soon!

[mylungshateme in reply to Nmstoday]

Glad its helped. This is what I've found over the past 11 months I'm banging my head against a brick wall an no one is listening to me! But I decided to do my own research into it and I'm glad its helping and it is weirdly nice to know I'm not the only one which means I'm not going mad! 🤣😂

[LeiLey]

Thank you for these, very good reads! 👍

[mylungshateme in reply to LeiLey]

Your welcome 😁😷💪

[lovedisney]

Hey mylungshateme,

I can absolutely feel your frustration. I have asthma. I also have ME. ME is so so similar to long covid. I am convinced there is a connection. I developed ME after having a virus in 2013. Since then I have struggled with fatigue. Body aches. Brain fog. Nausea. Stomach issues. I was referred to a cardiologist at one point due to my heart rate. They told me I had persistent tachycardia. It’s so similar. I get literally no help from anywhere re the ME. If I m really struggling I speak to my gp. But all they really do at that point is sign me off work. I can only work part time. Prior to all this I was full on energy and worked full time. It can be a lonely place. I don’t say any of this for sympathy I say it because I understand how frustrating it is. I would recommend you check out action for me. It has loads of advice abs info and they also have a really helpful forum.

I truly hope you feel better and get more help.

C xx

[mylungshateme in reply to lovedisney]

Hi lovedisney, thank you so much for this I actually did say to my friend I feel like I have ME I'm not trying to belittle ME or anything but that sheer exhaustion is never right.

I've got from working 14.5 hr shifts to unable to even carry my toddler some days. Not been able to work since Aug my hospital admission. It has felt lonely actually your right, this forum has literally saved me from going Insane and helping me to fight for my health and treatment giving me confidence. Thanks you again I will check it out. X🙂💪

[twinkly29 in reply to lovedisney]

This is one area where I hope there will be more understanding after all this. However the cynic in me suspects that if people have had Covid it will be allowed as a thing, but for those who had it (ME) before and those who suffer from chronic fatigue as part of chronic conditions, I suspect it'll still be as dismissed/forgotten about VAs always. I really hope not of course but 🤷‍♀️

[twinkly29]

I really think that there needs to be some post-covid specialists becoming a thing. Ok they won't have all the answers right now and it'll be a bit like a joint learning curve for patient and consultant, but people need doctors who have the interest in the post covid issues (both more immediate like a few weeks after and especially the many months/long covid issues). Not just the breathing issues but the whole picture. There will be some respiratory specialists who will be great, will really look at the differences between say asthma and post covid and be objective. But there will, I suspect, be many who are more blinkered and who already do the immediate "you don't fit asthma/what's in my head as being asthma so it's not, goodbye...." so will probably do the same for post covid, particularly as it's bound to be very varied as a thing. Then of course even good respiratory consultants have got to liaise with other specialists too with post covid - so people with an interest in the whole picture would be much more useful!

Ok that's unlikely to happen but you know.....😆

[mylungshateme in reply to twinkly29]

I know I mean they can't even agree that asthma is variable for people like not every asthmatic has a wheeze and asthma been around for how long?😂🤣

And covid is new... that's why I thought let's try an help ourselves! And its difficult to tell where the asthma line is and post covid starts like most things symptoms overlap.

But it's the frustration whether asthma, post covid not being listened to and taking into account ALL symptoms just the ones they want to as they follow their tick box grrr. 🤣😂🤣😂x

[Hidden in reply to mylungshateme]

I'm with you on this. I've had my meds changed to fostair and montelukast and it really seemed to be working but my peak flow has dropped and my chest feels tight. But its hard to know if its covid or my asthma! My asthma is always worse in winter/heat. I know some symptoms are definitely covid - dry on one side (feels like sawdust) and a weird flutter in my chest. I'm going to keep an eye on things and get back onto the doctors / asthma nurse

[mylungshateme in reply to Hidden]

It's so hard isn't it? I think we know when were not right especially chest wise so always always inform gp resp team as it could be asthma so treatable and we know cant delay with asthma. 🙂 x

[twinkly29]

Also to add to mylungshateme's link above for the post covid hub (post-covid.org.uk/) this is the phone number linked to it for the Asthma UK nurses for post-covid issues: 0300 2225942. I assume, like with their asthma helpline, it's Monday to Friday, 9am to 5pm.

[Glty in reply to twinkly29]

Yes, they've been fantastic for all round care and helping my GP and me to put plans together. I'd recommend anyone struggling with covid complications to give them a call.

[Ellie6868]

Hi just to let you know because you say suspected COVID .. antibody tests are available now privately in most pharmacies. I had mine done last year I’m in the northwest so you can know if you had it not for piece of mind

[twinkly29 in reply to Ellie6868]

They are only useful if they show positive antibodies. If it's a long time after likely infection they may well not (which doesn't mean someone didn't have it, just that it's too long since). Also I know of several people who had confirmed Covid in the spring but then negative antibody tests last year (they're health care so we're able to have them in June ish when they came out). One, a doctor friend of a friend, had 2 positives for his covid (same infection but 2 positive tests for it) and still had a negative antibody test.

That's not to say people should have one of course but a negative antibody test doesn't necessarily mean they've not had covid.

[Bmco]

This is great - thanks. I fear I am going to be in this never ending cycle of “is it isn’t it” too. Will take a look at all this, take care

[mylungshateme in reply to Bmco]

Together we'll make the cycle more "fun" were all in it together as opposed to feeling alone. 😆😁🤪

[Zeeprod]

I’ve had breathing issues, similar to some here. Last March when covid came I had breathing problems for about 5 weeks before ambulance had to come and give prednisolone, felt like I couldn’t breathe and they said oxygen levels are high. Pred helped and was better for a few months then in November, got really dry mouth and waking up with night sweats etc, had antibiotics but didn’t help much. Been improving since nov but feels like the same thing that happened in March

[mylungshateme in reply to Zeeprod]

I didn't even connect the dry mouth thing and feeling like a strange sore throat but not a normal one I cant really explain it but happens at night then goes an not all the time. And pins and needles I did have jelly legs in that it felt like when I had c-section and had build up of fluid from all the IV's prior but that seems to have gone. Although legs can feel strange almost stiff or heavy sometimes if walking I fell down stairs few weeks ago thank god wasnt holding my toddler. Legs just gave way 😂🤣.

[Glty in reply to mylungshateme]

Yes to the dry mouth and throat, weird pins and needles mostly on my face 😱 when I've overdone it. Thankfully my legs are ok, but my arms are rubbish. I quite often need help getting jumpers off at the end of the day 🤣🤣🤣. The thing is, I don't realise until I'm stuck half in and half out 🤷🏻‍♀️

[mylungshateme in reply to Glty]

Oh my god all these strange things I've been saying to respiratory consultant for 11 months and get told it must be because I'm hyperventilating or they just ignore it. So I've learnt to kind of ignore these strange things if that makes sense? But the breathlessness, tachycardia and fatigue I really struggle with.

I had a good 3-4 weeks nov, (by no means perfect or back to old self but huge step forward enough to give me hope it can improve to some point) so started walking more an doing more around house but think over did it completely, as came crashing down dec not quite as bad as previous but certainly on the same scale enough to scare me I'd end up back in hospital. Although what was interesting my partner and children had stinking cold for over a wk i didn't get it but got chest infection in this flare. So thought that was odd..

I'm learning my new limitations now but its literally taken nearly a yr I would go for a walk an get stuck where I physically couldn't breathe or move an this was only around the corner an have to ring partner to get me. Think part of it was denial that I just couldn't do these simple things I took for granted before.

[Shazgrav17]

I feel i no your pain ive been ill what seems like for ever ive had hah fever nope it was t nasel polyps removed also got ulcerstive colitis anyways toom me five years to get moved from one county to anotha to see countless experts blood tests bronce x rays ct mri s hyper esonphillic syndrome which i no have injections for i still need my nebulizer too much and meds uniphyllin tablets twoce a day to manage day to day but get admitted twice a year too ave iv amonphyllin too ease inflamation my consultant is now considering changin my biological ( injection for asthma ) see if they can finally get it controled .

[Thescript2020]

Hi 👋 I think I had covid-19 last year and now suffering constantly, I'm now on my 16th set of antibiotics and steriods had constant chest infections last year , I'm came off work ill on the Monday and recieved my shielding letter a few days after , went back to work in August and now still at work , however I'm having to wear a mask for 12hrs and it is messing with my chest , this week is extremely bad I now have bacteria pluresay so back on antibiotics and steriods and painkillers and increase in asthma meds 2 years ago I was never out of ICU everytime I took a asthma attack, so I ended up with pancreas being damaged to the amount of steriods I was on and now I'm a steriod induced type 2 diabetic. You seem to be researching a lot of stuff and wondering where to start as I am sick of getting handed antibiotics and steriods instead of my left lung being investigated, I only found out 2 years ago my left lung is damaged but no treatment. Hope you feel better soon . Also I'm back at work and struggling wearing the mask for 12hrs last week was horrendous constantly feeling i could not breathe and taking my inhalers loads. I'm also tachacard but they have put it down to my asthma meds? Sorry for the long reply

[twinkly29 in reply to Thescript2020]

That sounds a rough ride.

When you have these episodes, do they take samples of your sputum? If possible it would be good if they would do that because it's possible that some of them might be viral infections but, even those that are bacterial, they can then use the right antibiotics for the bacteria.

I think I would say to GP that enough is enough and you would like referring to a chest consultant - it does sound like you need investigations to find out exactly what is going on. It could well be a mix of asthma, long covid and infections - but you need to know and, without the investigations, all they're doing is papering overing the cracks, not dealing with anything underlying.

The tachycardia could be asthma meds but it is also linked to long covid.

Breathing pattern disorders are a big part of post and long covid and maybe you need some respiratory physio to deal with that side of things. Again, that's something a consultant would need to instigate I think.

This site was recommended to me by a respiratory physiotherapist and is very good (free to sign up and it remembers where you are), easy to do etc. So if you wanted something to have a go at now that might be worth a look.

lifeguidehealth.org/player/...

But I do think you need a referral - there might be a wait but better to be on a list than where you are now.

[mylungshateme in reply to Thescript2020]

Hi. I really feel your pain, I really do. I just couldn't physically do my shifts anymore wearing the masks for my 12hr shifts, reduced my shifts to 10hrs and did every other day so had a recovery day but still was impossible. I couldn't complete the shifts and like you was just being thrown abx and pred. Then maintenance pred 40mg which in itself messed me up.

I haven't been able to return to work since my hospital admission August b/h due to symptoms and shielding but even without shielding still not med fit. I have had to push for each an every test, Referral.

That's when I started doing my own research as no one was listening to me. Never felt so frustrated in all my life and alone at times.

And with pred-insomnia I thought turn it into a positive and start researching try find answers 🤣😂.

I first started researching different types of asthma and symptoms and seeing were I fit.

Then covid symptoms but not government symptoms the actual symptoms In medical journals which they keep pushing to be added to list.

Then researched long covid syndrome and how it interacts with asthma.

The biggest things were BPD twinkly has given you the website highly recommend I'm currently doing it.

Heart issues - tachycardia, Diabetes, fatigue, ME, and fibromyalgia.

It's really difficult to get the long covid diagnosis and people think they have it after just a few months but no that's post viral fatigue which you can get with most viruses.

Long covid is different and no we don't know how long it goes on for... for some its learning to live with the new condition and limitations it brings, for others 100% recovery.

Also I think far too many people are getting a new diagnosis of asthma post covid which may not actually be asthma but again post viral and or BPD.

But for example my gp had never heard of BPD as in breathing pattern disorder only BPD as in borderline personality disorder... so with professionals not able to distinguish the 2 (which is complex) people will be prescribed asthma meds but it won't have an effect on them at best side effects.

So much research needs to be done into this new complex syndrome. Sorry for long reply theres just so much to it and your going through a really tough time. If you want to p.m me that's fine. Good luck. X

[itselenax]

It's so nice (but also sad) that there are other people in the same boat as me. I had confirmed Covid in December and have been struggling ever since - and my asthma was doing really well beforehand FINALLY! I had an appointment with my AN recently and she said she's worried my asthma could have developed into COPD or brittle asthma and organised an x-ray but has basically ignored the fact that it's most likely long-Covid annoyingly. So I should get the results from my XR back today/tomorrow and will go from there I guess. I'm just sick of the SOB even just from walking, plus the cold exacerbates it more than ever as well.

[Thescript2020]

Hi yeah I had asthma as a child but 5years ago in the nursing home I was working in all the residents had chest infections and we lost a few but doctor for home said it was viral and one night came home from work and had a full blown asthma attack and had another 2 on way in was in resus for hrs then admitted to ICU where they said I had a chest infection that was not viral and attacked my lungs I was in for 5 days then released on to HDU then ward then out with all my asthma meds back in place and fostair and spirivia and monteluast etc, but it has been stable for about 2yrs since starting my new job but starting regularly a chest infection and respiratory infections but cleared up, I'm going to phone respiratory tomorrow and doctors and ask for chest investigations, can't take anymore sick of it. Only found out by accident I have chronic lung condition and that everytime I have xray the bottom of my left lung does not show up on xray but never investigations into it. Thanks to all xxx

[mylungshateme in reply to Thescript2020]

That must have been so flippin scary 😱😱. I'm surprised they're not taking things more seriously given your history. But I guess the simple reason being is they are still learning and don't really know a lot of the answers we want them to 😆. Some medics are more open minded to it than others. Yes for sure I would call your resp team sounds like you need spirometry, lung function, chest xray basically anything there willing to do. Also I would ask if you can be referred to long covid clinic - it's a bit hit an miss though... also BPD clinic. Let us know how you get on. X