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!
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!