Shortness of breath and wheezing: UPDATE: lung... - LUPUS UK

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Shortness of breath and wheezing

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UPDATE: lung function tests normal. Had an ABG (arterial blood gases), results are all over the place, specialist has no idea what’s going on! I have extremely high O2, low CO2, low bicarbonate, low sodium and alkaline pH. Booked in for cardiologist and stress test next week, followed by cardiopulmonary exercise test. Living in lockdown, disabled by this breathlessness. Can anyone relate?

I’ve had severe trouble breathing for the past month with wheezing and chest tightness. It started the same day as a mild cold: sneezing, runny nose, fever, headache, nausea. No cough or phlegm. The cold went away after 2 days but the shortness of breath did not. I’ve been into hospital because the chest tightness got worse. All tests came back normal: bloods, troponin, d-dimer (clots), even pregnancy. Chest xray was clear, ECGs normal, O2 saturation normal, heart ultrasound normal. I was discharged and my doctor ordered an urgent CTPA, which also came back normal. COVID-19 and all other viral tests normal. My doc has now ordered a lung function test, which will not happen until next week. I’ve tried antibiotics and ventolin, plus over-the-counter pain relief, without success.

This has never happened to me before. I’ve had pericarditis before, but this feels vastly different. I’ve never smoked, have no history of TB or lung disease or heart disease, and as a singer, my breath control is normally excellent. I’ve been previously diagnosed with lupus and positive anticardiolipin antibodies. I have small-vessel vasculitis, which is currently well managed with hydroxy.

The bit that really freaks me out is while at the hospital last week, the breathlessness suddenly spiked to the point of suffocation. It happened after I walked up the corridor and back. It backed off after about 30min, but it was scary to know that can happen anytime. The breathlessness gets worse on exertion, including talking, which means I am unable to work indefinitely (I have a talking job) - until they find a cause and I get better. I also cannot sing, which sucks on both a personal level and also because I’m part of the music team at my local church. I’ve also pulled out of that indefinitely. Because of the danger of breathlessness and suffocation, I’m restricting my travel to very local services, and only for short periods, eg. seeing my doctor (who is blessedly only 5min away) and visiting the pharmacy. I’m virtually housebound. It’s like being in lockdown all over again.

So here are my questions: any clues as to what this could be? Anyone experienced anything similar? I asked my rheumy if this could be lupus-related, and he said probably not, because lupus normally causes things that tests can see, like clots or plural effusion. My GP, who is excellent, is baffled. Any help appreciated, and of course, your support is appreciated too!

41 Replies

Hi. Sounds to me like you may have developed a dysfunctional breathing pattern that's leading to a feeling of air hunger. Ive had breathing issues for 8 years which have lead to hospital admissions on 7 occasions (the last one was Nov) and alot of prednisone.i done both pulmonary rehab and respiratory physio as well as breathing techniques with SALT. Ive seen an asthma specialist who ruled out nasal drip,reflux and excess mucus by larynxoscopy, a pulmonary specialist and a professor of respiratory who thinks it's auto immune. My chest specialist thinks it's pleurisy / pneumonia related to Lupus and it often comes out of the blue with no obvious trigger like a cold.i have no asthma and I've not had covid but I have had effusion and right base atelectasis ( lung collapse) .Over the years I've been taught that breathlessness whilst scary is safe and once you believe that and learn to control it it's not that scary.Breathing is a reflex... stressing about it and tensing up will only make it worse so you need to relax and use breathing exercises.you may need some respiratory physio to retrain your breathing...I start some again on 26th of this month.

What breathing techniques do you use?

In through the nose out slowly through pursed lips

Sniff the flower blow out the candle x6

Bukeyko controlled pauses

They all take concentration and practise but they do work.i often find myself doing the first 2 while walking the dog.

My admission in Nov was the first since starting the Lupus meds in 2018.i needed 10 bags of prednisone over 4 days. My Rheumatologist has since increased my mmf from 2 gms a day to 3 gms to help with the steroid reduction.

In the past it has taken 3 months so chill ,be patient and go with the flow it will settle . SML x

Trying not to focus on the bit about 3 months (I’ll lose my job!!) and just chill as you say. I have excellent breathing; as I say, I’m a singer and have lots of techniques for deepening and controlling my breath. I’m also a psychologist so I know a bunch of techniques which I teach to others!

I’m seeing a respiratory doctor soon, hopefully this week, so might get some direction there. Thanks for sharing your experience of breathlessness; it’s interesting to hear other experiences of how AI stuff can affect the lungs. I appreciate your story!

We don't always practice what we preach do we ! When I say 3 months it's improving over that time .I can't work now so it maybe doesn't impact on me quite the same x

Hi Spanielmadlady, thanks for letting me know the 3 months was a gradual improvement! I certainly could not take that much time off work. I truly don’t think this is a matter of ‘practising what I preach’ - I am not struggling with keeping my breath even, I am struggling to breathe without wheezing. Also cannot take a deep breath due to chest tightness. And it’s every single breath, for more than a week now. It happened suddenly. There’s a different issue at play here. It’s as though something is narrowed or inflamed, and it’s constricting my airways and restricting how much air I can take in. I’m seeing my doctor today, so we’ll see what arises from that. Thanks again!

Your sats at 95% are normal and there is no cause for concern until below 90% . mine are around 96% what is your pulse ? I'm often tachycardia with a pulse around 90-100 .you say you are sleeping without any problem when my breathing is poor I don't sleep well and have to sleep propped up and my breathing flares come on within a couple of hours.you may just need a course of pred to settle any inflammation down .I assume someone has listened to your chest for crackles and rales and haven't heard any x

Thanks for the reassurance around the sats, although they did drop to 92% earlier today. GP advised me to monitor it. My heartrate is usually around 75-80bpm and today was hanging around the 90bpm mark. No crackles or rattles in the chest, just the wheezing, which I can now hear with the naked ear. I’m also developing a mild, dry cough and slight hoarseness in the voice. GP is consulting and arranging a lung function test for tomorrow. Hopefully the solution is as simple as prednisone!

Pleased your gp is helping....my lung function tests are normal.alot of your signs are fine so fingers crossed the lung function will be too. X

Thank you ☺️

Hi Spanielmadlady. Please can I just ask you do you still have a effusion? I have had one for years and the consultant said there was no point in draining it as it would just happen again. Thanks

Hi.No I don't I was given water tablets and it hasn't returned .I am permanently on pred to keep the inflammation in my lungs under control .the pleural effusion was at the start before my lupus diagnosis and since I've been on lupus meds I've had fewer issues x

Thanks. I’ll discuss with my consultant at my next appt.

It was furosemide i was given after pleurisy in both lungs resulted in pleural effusion x

Thank you!

I can't claim to know what's going on, but I'm sorry, it sounds both uncomfortable and scary.

It does sound like post viral pneumonitis. That would correlate with your negative tests for everything else and the prodrome of viral symptoms. Alot of pts the last few months have come to ED with it, and sadly we offer reassurance, and over the next two weeks or so should vastly improve. I really hope you get back to singing in your church soon as well.

BW

Lottie

Thanks Lottie, that’s very reassuring xx

Let us know how you get on this next week x

I will 💛

From your description of breathlessness on exertion I would suggest thst you ask your respiratory consultant to order a myositis screen for all the myositis antibodies not just anti-Jo.

Thanks Insti, I’ve never heard of myositis before. I am not sure if it’s myositis, as I’m not feeling muscular pain, more shortness of breath and wheezing. But I’m seeing my doctor today so we’ll see how that goes. Thanks x

Hi Krazykat, thanks for contributing! I appreciate what you’re saying about relaxation, although I am not having any trouble sleeping—I pass out immediately, sleep for 8-9 hours, and awake utterly exhausted. I feel like I need to lie down most of the time. I feel quite weak and heavy, and constantly ‘wiped out’. Last night my symptoms spiked again: fever, shaking, weakness, O2 dropped to 95% briefly. I spent most of the evening recovering.

While this situation is stressful, yes, I truly do not feel there is any anxiety at play here. I am already practising many breathing techniques (as both a singer and a psychologist, I know a few!) and I know exactly how to bring my breath back to a slow and even pace. I am also using a pulse oximiter for a bit of biofeedback too. As for humming…I appreciate the suggestion but, well, you still need air to do that!

I am doing lots of relaxation but honestly, I just need some relief from the chest tightness and wheezing so that I can get back to normal breathing, instead of panting halfway through every sentence. Rest is the only thing that helps. Any amount of exertion—showering, stretching, even eating—is draining. We’ll see what this week brings, with the doctor today and more tests…

I had pneumonitis a few years ago, it sounds like that, I was fine if I didn’t move but even a trip to the loo was scary as I could not breathe, a few steps set me off. I was in hospital for 4 days then sent home with them saying it was pneumonia and was given antibiotics. I was taken back to hospital in an ambulance, I thought I was having a heart attack. This time I was kept in for a week, it was only when I was given a high resolution CT scan they found what was wrong. It’s basically inflammation in the lungs, steroids were the only thing that brought it back to normal. If I had a shower I had to leave the door open as the steam also made it worse. I hope they find out what’s wrong as it’s very scary not being able to breathe.

Thank you, yes it has freaked me out a little bit! I’m not used to the sensation of suffocating. Pain and fatigue, yes, but this is altogether new. My chest xray, echo and CTPA have all come back perfectly normal. I am thinking it’s maybe some level of inflammation somewhere, like you. Mind you, sounds like your symptoms were much more severe!

GP is also considering a delayed side effect of my booster shot (2 months ago), or possibly a long COVID-19 effect. All my COVID-19 tests have come back negative, so we’re wondering if maybe I had asymptomatic COVID-19 at some point, never got tested coz I had no symptoms, and now have developed long COVID-19, triggered by an innocuous cold. Feels a bit like we’re clutching at straws, but we have to. The obvious answers have not come!

Hi MusicalFurbary, the respiratory consultant will be able to confirm but just to say I was "newly" diagnosed with UTCD last summer and then also started having breathing problems on exertion last year. after doing exercise tests, lung function tests and FeNo as well as chest CT scan, the respiratory consultant concluded in September that I have asthma (all tests were normal except for the FeNo tests which showed very high inflammation on the airway). He also had allergy blood tests done and as suspected I'm sensitive to environmental causes, particularly dustmites and pollen - so when exercising/running outside, it is even worse and also I experienced a night of diffciulty breathing while on holidays and I think this was due to humidity and dust mites. I had no idea I had asthma, this came as a surprise but I'm now on preventative puffers and I think I'm better (although I haven't run for some time as I got myself a knee injury while skiing). However, I am still unsure if there is something else, as I get blue lips all the time, even when not exercising and I think it's brought up by the cold (Pulmonary Raynaud's is a theory from the cardiopulmonary consultant on the latest, I was also diagnosed with a PFO from the CT scan, but they don't think this is the cause of the issue - I've have O2 decreased to low 90s high 80s and the cardiopulmonary doctor wasn't concerned about these stats). Good luck with your appointments and let us know what comes out of it. Do ask for exercise tests though to confirm.

Hi Muguet, thanks so much for sharing your experience. I’m doing lung function tests today and have been referred to a respiratory doctor, so we’ll see what comes of that. What’s a FeNo test, by the way? I haven’t been exercising, but I have noticed even mild exertion can trigger breathlessness, including talking.

It’s interesting to hear you were diagnosed with asthma, without knowing you had it! I have never had asthma—is it possible to develop it later in life, I wonder? I know I’m allergic to dustmites, but this breathlessness came on suddenly about 10 days ago, which I’m assuming was triggered by the cold I had. I wonder if these things usually come on gradually or if onset can be sudden? There’s so much mystery in this issue!

Hi MusicalFurbaby, I hope your lung function tests are going well. I was asked to do the FeNo test together with the lung function tests so you may have these too at same time (if not you can ask your respiratory consultant), it's exhaled nitric oxide and measures if airways are inflamed, it helps diagnose asthma from what I understand. I was diagnosed at 45 so this was very new to me and apparently it's common to be diagnosed late (I even ran my first marathon the year before without knowing I had asthma, but I struggled with breathing and dizziness all the way). My son was also diagnosed with asthma but at 10 following this test along with lung function. Having said that, it's important that they see if there's anything else triggering this. If you're allergice to dustmites, I've noticed for myself and my son we get triggers in particular if change of weather and humidity also when it gets worse. Good luck and I trust your respiratory doctor will help you. Let us know how you go. I also have on the back of my mind that they've missed something for me. I think I also get triggered by cold weather (which explains blue lips notably), but this isn't asthma but from the impact of my raynaud's possibly? xx

Hi Muguet, thanks for sharing! I appreciate the info about FeNo and nitrous oxide. I know there was a change in weather when this breathlessness first started so maybe there’s something to that. At first I thought I had hay fever (I never have hay fever!)

I know what you mean about ‘Are they missing something?’ when everything is so complex. All the best with getting to the bottom of the blue lips and asthma and everything!

Thank you Musical, coincidentally I saw my knee surgeon today (I ruptured my ACL as someone skied into me last month while skiing), well his multi-disciplinary team don't want for me to have the surgery until I've had a right heart catheterisation to investigate my blue lips and rule out pulmonary hypertension so it's back to investigation stage on my part.. I'll update you in coming weeks when I know more, let me know how you're doing too. Best of luck xx

Ugh, I hate those contraindications! Really hope they get to the bottom of things for you. The waiting can be so painful. I’m doing about the same, expecting some blood results today. What a saga! ☺️

Thank you Musical. All the best for your tests too and the waiting. It seems to be never ending.

Hi MusicalFurbaby,

Exertional breathing difficulty is probably pleurisy. Very common in Lupus & easily treatable with a course of steroids.

lupus.org/resources/how-lup....

No blood test will show it & without fluid buildup it won't necessarily show on CTPA or X- ray.

Unfortunately the same happened to me. I was left suffering for months. I made a complaint so lessons could be learnt. It is as a result of this that I know so much about it.

If you haven't tried a steroid course, speak to your GP. They will need to ensure the dose is tailed off to avoid sending you into flare. I regularly suffer & my treatment is 20 mg of prednisolone for 3 days, then dropping 5 mg every 4th day ( i.e 15 mg for 3 days, 10 mg for 3 days, 5 mg for 3 days then stop).

Sarah x

Hi Sarah, thanks heaps for that x I had assumed pleurisy caused fluid build-up, which has not shown on any of my tests, therefore had been ruled out. It’s interesting to hear that it can happen without the fluid. I’ve been thinking of asking my GP for corticosteroids, partly because I’m thinking this could all just be inflammation, which steroids would likely assist with. I’ll keep it in mind, and I’ll have a read of the article you included too. Thanks again!

Sorry to hear you had such a dreadful time with the vaccine. Not being able to breathe is horrible. I hope you’re doing a lot better now!

There’s still a lot we don’t know about COVID-19 and vaccines, including long-term effects, so it might be hard to know for sure. I know I don’t have DVT, all the clotting markers and scans have come back stunningly normal. I’m supposed to have lung function tests today so we’ll see what arises from that (if anything). Thanks for sharing x

UPDATE: they did spirometry yesterday and found airway obstruction. I’m being referred for further tests next week and to see a respiratory physician. In the meantime, they’ve ruled out asthma. They tested me again for COVID-19, which, predictably, came back negative. They’ve done a fresh round of bloods and a viral panel, so we’ll see what eventuates from those!

We are now looking at two main possibilities: it’s all viral, in which case, it will resolve naturally. The other possibility (let’s give a shout out to AI disease) is sarcoidosis—has anyone ever heard of this? If it is the latter, my doc is happy to prescribe prednisone.

In the meantime, I’m continuing to rest. Even mild exertion is taking it out of me. Planning a quiet Easter weekend, heavily featuring chocolate. Thanks to everyone on here for your support, suggestions and well-wishes. It really means a lot to me. ❤️

Thanks for the update MusicalFurbaby, wishing you all the best with the next tests and hope they find out soon. xx

Have you had a LFT test for covid?

Hi Betty, I’ve had a COVID-19 test, and I’m getting my LFTs checked, but I’m not sure what you mean by an LFT for COVID-19? Can you say a little more about that?

LFT means lateral flow test for covid. You can DIY or have someone put a swab up your nostrils as per instructions. Can be bought from pharmacies or free.

Ah, that sounds like a Rapid Antigen Test or RAT as we call them in Australia. Yes, I’ve now had 4 tests for COVID-19, all of them negative.

In the U.K. your Australian RATs are our LFTs which work on the same principle of testing for covid 19 protein particles (the outside coating of the virus) rather than the more accurate PCRs (polymerase chain reaction tests) which test for the presence of covid RNA.

PCRs are more expensive and are lab based tests in the U.K.

Regards.

Thanks Betty! 😁🌻

UPDATE: lung function tests normal. Had an ABG (arterial blood gases), results are all over the place, pulmonary specialist has no idea what’s going on! I have extremely high O2, low CO2, low bicarbonate, low sodium and alkaline pH. Specialist says the only explanation was that I was hyperventilating at the time (which I absolutely was not). He says if I am physiologically hyperventilating, without consciously overbreathing, there must be something in my body driving it but he doesn’t know what. He says if this is long COVID (I’ve never tested positive, but maybe I’ve had asymptomatic COVID at some point?), he has no idea how to treat this.

I’m booked in for cardiologist and stress test next week, followed by cardiopulmonary exercise test. GP and specialist are starting to wonder if this is cardiac, maybe some form of pericarditis that does not show up on investigative studies? Then again I’ve had pericarditis before, and this does not feel the same at all.

Need some encouragement. I’m basically living in lockdown, disabled by this breathlessness. I’m unable to work for the foreseeable future, on leave without pay indefinitely. Worried about losing my job as I cannot talk for more than a couple of minutes, and I’m a counsellor—my life is talking! I also cannot walk far which would make it hard to walk from the car to my office. Working from home is an option, but not much point at present if I can’t talk. Feeling a mixture of boredom, frustration, worry and depression. Can anyone relate? And does anyone understand ABG tests and/or persistent breathlessness?

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