Hello all, my name is Bobby and I am writing from Australia.I am perplexed with my symptoms and tired of reading hundreds of medical articles and seeing academic non sufferers (doctors)about this abhorent disease. I smoked from age 9 (Mia Culpa) (My Fault) at primary school and can still remember lighting a smoke with a magnifying glass at the rear of the school during play recess. I probably smoked a pack a day of twenties from age 15. I managed to quit at age 49. I just turned 57.Interestingly I also suffered with generalised anxiety most of my life which saw me worrying about my health and running to doctors and lung specialists, thinking I had developed lung cancer every other year. Unfortunately I ended up having too many ct scans and other tests and never realised how much radiation I was exposing myself to. I have also had around 8 lung function tests over the last twenty years and have been seeing the same lung specialist as needed.The good news for you newly diagnosed with mild copd by spirometry, is that I have been stable for over twenty years and I continued smoking for 12 of them. I had no real symptoms except for chronically clearing my chest. Hmmmm Hmm clearing noise (Not Coughing). So mild copd can remain stable for years. I have to add that I always excercised and have jogged regularly since age 15. I remember getting chest infections every other year until , in 2001 when I had my first flu vaccine. For the next 8 years I had the jab and did not have another infection .I was working for a Council for that time and was exposed to infection from others in an office environment, but managed not to get it . However I left that job, missed a flu jab last year and guess what. I came back from a cruise went for a lung function test the day after returning ,that had been booked in and the day after that got a ripper of an infection which lasted for months with the cough etc. Fast forward a bronchoscopy in January to follow up symptoms this year and a gastrointestinal endoscopy recently and another low dose ct scan as well as another lung function test and a ear nose and throats endoscopy.And the result is the same as always. Mild Obsructive deficit. Well nothing I read or no test or no doctor can give me a reason for this burning lung discomfort I have. It is coming from my lungs as I can simulate it when running or breathing out hard. I have two lung specialists perplexed.It is a very similar burning sensation that you get with an infection. Does anybody else have this symptom?It is not my heart or my easophagus or my throat, they have all been looked at tested and I have tried all the drugs. I am starting to think that my running and fitness level is so good that it has masked the damage from 40 years of smoking.Perhaps the exercise is inducing the burning or I have a pocket of inflammation in the lung somewhere from that infection. I just seem to burn chronically since that last chest infection and crackling that I can hear especially when lying down.Burning doesn't seem to be mentioned much as a symptom from most people when I read the posts. Breathlessness and cough seem to be the major symptoms along with mucus and recurring infections.Is my burning a symptom of worsening disease ? My spirometry results say no? Also I am having a lot of clear mucus daily after another virus recently. Be aware fellow British friends, we have just had a very bad flu season here and it is about to come your way. Make sure you get your fluvax please, it has been rampant here. Any help on similar symptoms with the lung burning would be great. I will take the word of a fellow sufferer over an article everyday. I know my anxiety is an unwanted co morbid condition making things worse. Happy to chat about anything. That pic is me two years ago on a Pacific Island cruise from Sydney.
Regards Bobby xxx
On Spiriva and Alvesco and use Ventilon as needed. Also use prednisone and antibiotics as needed when infected. Also active surveillance for prostate cancer since 2012, no treatment just monitoring.
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Hi Bobby. I have posted of this weird sensation in the past. Medical professionals do not have a clue of what or why it is all about. My description of it is that it is like being a dragon who's flame has gone out, only being able to blow out hot ashes and cinders that you can feel coming out of your throat, does that description match your experience too? All I can say is that after 3 1/2 years of it I have got used to it, as long as I don't think about it.
Cheers,that sums it up nicely. I am guessing it is inflammation . It only started a few months ago with the crackling on inhalation. Very annoying symptom. I gargle and suck on lozenges etc to get temporary relief. Otherwise like you I am distracted at times and don't notice it. I still have good fev1 and fev1 / fvc ratio is at 70percent but I have symptoms that would indicate otherwise. Anyhow thanks for the response how are you doing?
I seem to doing okay thanks, although my lungs are a little worse than yours, all in my profile, click on my avatar to read about. By the way I am another Antipodean, NZ although I reside in the UK.
No problem with having a little whinge after all it is a lot to put up with for anyone, knowing there is no cure. I get fed up with it all, at times, but like you it is a case of Mia Culpa and have no option than to just keep going.
I’m not sure whether it’s the same but I’m pretty certain my chest soreness is down to indigestion and acid reflux. I can either wake up with it or it will build up during the day. Either way I always go to bed with a sore chest. Kind of got used to it. I have stage 4 COPD with 20% lung function. I am 68 and so you should have nothing to worry about too much. Good luck
I was offered to go on the list at 63 but said no because there are many younger people in need of new lungs. Also in my mind if the transplant fails then that’s the end. As proved by keeping away from infections I have stayed alive albeit with very limited capabilities. Thank you for your interest
Bobby I dont get that problem but you mentioned cruise ships and i have found their air conditioning to be a problem on one ship . Some are old and have been sold and done up as "new " ships but have problems still relating to air conditioning. First trip "new " boat many problems but mainly respiratory for a number of passengers , not me. Enough for everybody to be given a large discount off another cruise. I was not on lower deck as i was about 5 years later on same ship for a longer trip when i spent a week in cabin with an exacerbation on antibiotics.The next year was already booked on this ship so cancelled it , and complained about air quality. So was transfered to their other ship on top deck, cabin with opening door to balcony, at no extra cost . No quibble at all. They must be aware of the problem. That ship is now being sold on.
Dust settles down, we were on lowest deck and i am sure that was the problem as when the heating went on there was a strong smell of burning The smell that comes if you use an electric fire that has dust on the elements.
This is not answering your burning problem but you should be aware of this being a potential hazard on some cruise ships if you plan to cruise again.
Thanks, my biggest fear is going on a cruise and having an exacerbation. My anxiety of being at sea sick and not able to get off if I was unwell is like a bad dream.Im glad you got through it and went back on another one. I always get a balcony cabin for that reason. Unfortunately Australia to anywhere is usually a few days at sea. So if you had an emergency medical condition you may be in strife.Im guessing the onboard medical doctors come across our issues a lot and hopefully equipped to assist.
Hi Red Sox, thanks for the response and keep up the very informative posts. People rely on our interest in what's going on with this condition and the knowledge people like you and the others on this forum have to help them understand their issues. I love a bit of humour thrown in as well. Just remember many a true word is said in jest especially when it comes to the average non suffering academic. Thank God for the Internet and the good people on it.
Yes unfortunately Helicopters can only travel so far before running out of fuel and the ship may need to divert for hours to meet the helicopter. It happened on a cruise I was on . Poor fellow slipped in kiddies pool area and had a serious head injury. Started at 9am but didn’t get the Helicopter till 5 pm as we had to divert to try and meet it.
I have acid reflux which causes a burning not only in the centre of my chest but across from side to side and also across my upper back at times as well.
Hi yes thanks for the response. I have had that acid reflux reason-extensively addressed with scopes and medication. Not the issue for me but the good news is for you medication like becoming can control that for you.
I am on Vanoprazan for reflux and nasty heartburn due to IPF. This is a fabulous drug prepared by a compound chemist via your GP (who won’t have heard about it). My gastroenterologist prescribed it not my lung specialist. I’ve been in it for 3 months and it has given me quality of life.
Hi Bobby from across the ditch, before I got to this age/stage I do remember when I could still run in my later years for the bus, that my chest used to burn like hell, put it down to not getting enough exercise as I worked in an office x
Hi yes that is very common with running especially if the air is cold. Professional runners get it as well . Mine is happening when doing nothing. I guess it is a symptom of lung damage specific to my lungs that I will have to adjust to .Regards Bobby
How are you during these hideous times. I’m in Melbourne! Have you been checked for pulmonary fibrosis? Your symptoms sound familiar as I have had PF since 2012 plus organising pneumonia which kicked in December 2017. In February 2018 I was written off by my first pulmonary specialist and nearly died in May. I have found that pulmonary specialists are wildly different in their prognosis as I’m on my 4th in 3 years. In my case I am being expertly managed by a brilliant gastroenterologist in Sydney for IBD and my health is now reasonably stable.
Management is the key to our health and well-being.
I’m happy to chat to you as I know exactly how you feel.
As Elton sings “I’m still standing after all this time”.
Your assessment of medicos is spot on. You end up needing to research and assess your own condition. Thank God for the internet and the scientists and researchers that publish their work. Apparently my latest HRCT has turned up some emphysematous changes and a couple of nodules which I have been following up on with annual CT’s for the last five years.The other CTs have never commented on any Emphysema?In fact in 2015 ct states no evidence of any emphysema? So Seems Radiologists are no different to Doctors. They all figure differently. Pisses me off that you can't speak to the radiologist about your results or question their findings. For example , was the emphysematous change trace, mild, moderate, severe ? My GP hasn't got the foggiest. I end up instructing them on the disease.My P F Ts have shown a mild obstructive deficit for the last twenty years. I am just getting over a nasty virus again. No there is no fibrosis nor bronchietsas.No I think mine is garden variety Mild Copd from smoking and exposure to dust and things. Plus I remember having a lot of chest infections when I was a little tacker. I am one of eight children of whom most smoked long term and I seem to be the only one with issues. Go figure. I think the symptoms are all similar with lung issues, to varying degrees of disease being cough , mucus, infection , breathlessnes , burning etc etc. I am sorry for your trouble and I am also happy to chat.
I have just joined a community advisory group with the Centre of Excellence for IPF and have made my objections clear about the poor diagnosis and support of lung diseases in Australia. It's very early days but hopefully we can get the message out to the medical community for best practice in all areas of ILD. I technically should be fertilizing a cherry tree at Springvale which I paid for 2 years ago. My ILD physiotherapist told me at the beginning of a 10 week remote (!) clinic recently that I should be dead as IPF has a shelf life of 2 years. What a load of crap. Anyway, I ended up advising and counselling her for the duration of sessions. Really..... We must do better than this. I can imagine how depressed patients get with help like this an to top it off we have COVID-19. I make sure I keep myself busy all the time and fortunately my husband is kicking around the house too for company. He works at the Burnet Institute in fundraising and has been home since March. I am very grateful about this situation.
How are you coping? We need to keep up the fight. My motto has always been - if sounds like crap, it is - don't be put off, it's your life at stake. One of my brothers in London, 63, had enphasema and Covid got him this March. Another who also lives in London gave up smoking at 50 and now at 57 after contracting Covid can't shake it. With IPF and organizing pneumonia I always feel like I've got the flu, so I empathize with you totally. I have never smoked but there was a whole generation in the UK who smoked religiously everywhere and the passive smoke permeated transport, cinemas, shops and homes.
Yes, you're right about lung diseases and their symptoms, they're all the same it appears. Once the lungs are damaged, they react the same way.
I love your attitude and you are obviously very resilient. Yes i can handle the sore knees and hips and prostate cancer(early) and the general wear and tear items. But the lungs are just a bastard when they play up. They have been a lifelong source of anxiety for me and I only have mild disease. I feel for you, but it sounds like your a fighter. And your right, question everything and don't believe anything your told. You know how you feel. You know your body. You can conduct your own research .They told me I would be dead in 5 years from prostate cancer back in 2012 if I didn't remove my prostate. Guess what? Still here and two biopsies later and a recent TURP and no cancer detected. And that death sentence was from a prominent urology professor here in Melb. I shopped around and I say shopped because all I kept hearing was $$$$$ . I ended up at Peter Mac under a very good Specialist who agreed we can do active surveillance and just monitor with digital examinations and psa blood tests. Oh the stories I could tell. My dad was diagnosed with liver cancer and given 6 months. Didn't accept that either. My brother took him to Italy after researching radio frequency tumors ablation and they got him another 10 years. We raised $20,000 toward a machine for the Royal Melb Hospital and they began to adopt the procedure. This was back in the late nineties. Dad died in 99. They named a room after him at the hospital. And I could go on, but I won't. They can do some wonderful things. But like motor mechanics, diagnosing is hit and miss.
Yes, the Kaching factor ($$$$$) is everywhere these days. Great story about the Royal Melbourne and Peter Mac.
I'll raise a cuppa with you after the lockdown etc etc has ended Bobby. Could be 2021, who knows. One thing's for sure, we'll both be alive to do it!!!
You and your siblings have had a terrible run.Sorry to hear about the passing over of one of your brothers. Yes it seems that the after affects of a bout of Covid are a massive issue for some. Damage to internal organs and nervous system etc.I hope you brother does wel.I love your humour about Springvale Cemetery. My Mum and Dad and several others are out their at their long term holiday rentals. 😊Yes we will raise a cuppa together. I am just in Vermont South
I'm in Coburg, Bobby. Brunetti in Carlton is a favourite haunt for me. Full of activity, eclectic, vibrant and wonderful cakes and coffee. See you there some sunny day.
By the way, have you tried Vanoprozan for your GERD? It is a winner through a Compound Pharmacy. One of your specialists/GP can provide a script. I get my script from the Sydney Compound Chemist who make it up for many patients.
No mines not Gerd, had a gastroscopy and endoscopy of upper respiratory. My burning is from lung inflammation. Same sensation as a chest infection. Tried all the drugs for gerd before the scopes. Yes Brunetti,s sounds good. I used to frequent Lygon st in my younger days. Now you've brought back some memories.Cafe Notturno was a regular haunt and Totos pizza. 35 years ago. SanRemo ballroom I met some lovely ladies. 😊
I was diagnosed with bronchiectasis, once the infections were under control I was managing quite well(fev1 50%). Then suddenly really painful chest, struggling to walk at anywhere near briskly.
I tried to do breathing exercises, any movement that caused deep breathing did two things. 1 made me feel like someone was sitting on my chest (I have siblings, we use to wrestle during play and if no-one watching my sister would sit on me) thia make breathing nearly impossible.
2 horrendous pain, the raw pain of breathing in with bronchitis but instead of down the centre of my chest it was all over.
Doctor and consultant looked at me like I had two heads when I spoke about it.
Suddenly my breathing got worse. I was shopping, my GP happened to be shopping at the same time. No I didn't approach her, she came to me!
Sent me back to the hospital, a high resolution ct scan revealed that I now had bronchiolitis obliterans (a small airways disease) as well as bronchiectasis.
I had another lung function test. (fev1 30%) During it I was in a lot of pain. The lovely lady doing the tests, gave me plenty of breaks. She also listened.
The horrific pain when heavier breathing during exercise?
Air is being trapped behind scar tissue. Scar tissue is inflexible so stop forcing the air, slow down, let the air escape more gently. Do more frequent gentle to moderate exercise. Better to do a lot of gentle exercise and enjoy it than put up with pain and give up.
Well it worked for me.
Of course you may have different reasons for your pain.
BTW most people with bronchiectasis live with the crackles and need to clear their mucus daily. Has your doctor checked for bronchiectasis?
Yes a hrct 4 weeks ago said no bronchiectasis no fibrosis but It did find emphysematous changes in both lungs of the centrilobular type .Didn’t quantify it. I am going to try and find a radiologist who specialises in lungs and get a second opinion. Other CT’s I’ve had have said no evidence of any emphysema including a Spect Ct . I can still jog 20 km if I need to . So the emphysema is very mild if it is their. I suspect it is cause that would fit with the mild obstructive deficit on pulmonary function tests. However the crackling and burning sensation would suggest something is cooking
I wish the radiologists quantified their findings like mild moderate or severe emphysema and wether there was air trapping on the expiration phase of the Ct and all the other trappings that they find.
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