I just wanted to share my story in the hope that some of you might have experienced something similar. Sorry for the long post!
I’m a 43 year old Australian male and had been living in Paris for about 8 years when my health started to decline. Well, it started around 6 years ago with a persistent dry cough. Over time, the cough got worse and worse but I’d never had it checked out. Last year, I noticed that I got unusually short of breath during a few weight training sessions but still didn’t see anyone about it.
Then in January this year I noticed that I wasn’t able to fall asleep on my back anymore - I kept waking up just after starting to doze. This then started happening in any position I slept in by March. I realised that I couldn’t exhale as much as I used to - my exhalation would just stop at a point where before I was able to keep exhaling. This point of blocked exhalation has been moving, coming up sooner and sooner.
I realised that something progressive and insidious was happening to my body and decided to leave Paris and come back to Australia. My health was just getting worse. I began to have chest tightness, which has gradually worsened too.
In April, I had some pft’s and the % of my FEV1 and FVC were in the high 90s. CT scan basically normal. FEV1/FVC = 0.8. I was told everything was normal (even though I knew it wasn’t) Meanwhile, my condition has gradually deteriorated.
Now, it’s September and the % of my FEV1 and FVC are in the mid 80s - a reduction of 15% and consistent with what I’ve been feeling. But FEV1/FVC still at 0.8. New CT scan showed mild air trapping and mild thickening of proximal airways. They also did a bronchoscopy and found an increased number of lymphocytes. Oh, and I apparently under performed in my exercise test.
But still the doctors are telling me it’s nothing when I know it’s not due to how my body is feeling and behaving, and how things keep deteriorating.
For the record, I’ve never smoked and have always been extremely fit (swum and worked out regularly for the last 25 years). But now struggle even when I go for a short bike ride. I’m 1m98 (6ft6în) tall. I read that reference values for extremely tall people may not be accurate?
I’m extremely frustrated and depressed by this situation and feel that I have to wait till things are severe before I’m taken seriously.
Anyone else been in a similar situation?
Thanks for reading
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Lorry75
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I was wondering at first if you had developed an allergic reaction to something, but you say you felt no difference when you went back to Australia .....have you had any allergy tests though? Food allergies?
Have you been given a reversibility test to see if you have an element of asthma?
You may be over breathing without noticing ....have a look at Buteyko Breathing on you tube. Have you tried gentle , gentle relaxed relaxed breathing, nose breathing .Try putting one hand on your upper chest and one on your lower, the lower should move out more.
Anxiety and feelings of breathlessness can feed off each other....I find relaxation exercises and meditation help me.....I learned at first with a mentor.
Thanks very much! They didn’t think there was any reversibility in the previous pft’s although the last one showed 10%. It’s been insinuated that I’m exaggerating symptoms and that I’m probably just anxious, which I’m not. I’m the sort of person who puts off going to the doctor rather than the opposite. I know my body... What I’m feeling is real and is starting to show on the results, yet it’s still not being taken seriously. I’ve come to terms with the fact that I’ll have to wait another 6 months before heads will start turning.
Oh dear it's awful not being able to get a firm diagnosis. I wonder if you have had any heart tests as maybe this is the reason for your breathlessness. Have you had an ecg? I hope you get a diagnosis soon. x
It is incredibly frustrating not to know what's going on. A bit different scenario wise, but ten years ago when I started experiencing random pain, I was told it was a mental issue as my bloods showed nothing remarkable. It took six months for them to diagnose me with Rheumatoid Arthritis and that was when I was in so much pain I literally crawled to A and E. It was Rheumatoid Arthritis that caused my lung disease five years later. So yes, I well understand your dilemma.
All I can really say is don't stop advocating for yourself. Get a second or third opinion. At least get a specialist who is willing to listen and work with you for the long haul. And don't let them tell you it's "nothing" when you know your body better than they do.
I don’t want to hijack someone else’s thread but was curious about the relationship between your lung issues and RA as a doctor suggested this past week I may have RA based on some issues I am having with my fingers, so would appreciate if you could explain the relationship.
I'm sorry to read about your suspected RA diagnosis. As you know Rheumatoid Arthritis is an autoimmune disease. People who have RA sometimes get a secondary autoimmune disease like Sjogren's syndrome, I have that too. The hallmark of autoimmune disease (in our case RA) , is that our immune system, so vital in attacking foreign objects, infections and wounds, starts to attack our healthy joints. I suppose it's like it gets confused. 😐 It usually starts in the very small joints . Mine literally started in my pinky toes. And it's usually on both sides in the same joints. Stiffness is very common. As the disease progresses the pain , stiffness and weakness gets more and more aggressive. For some people progression is slow and for others rapid and debilitating.
Autoimmune diseases can go on to cause inflammation and swelling and atrophy of the muscles especially in the hands. Which can cause twisting of the fingers as there is no muscle to support the bone structure. This is in very severe cases.
Unfortunately RA can also attack the lungs causing inflammation of the lining of the lungs called plueritis. In more severe cases lung tissue may become scarred. This is lung fibrosis. Fluid sometimes collects too called pleural effusion. All courtesy of our immune system running amock. 😒
RA has the potential to do terrible damage to the lungs but I must stress that not everyone goes on to have all the issues I have had with my lungs. 😁 Many people with RA actually have no issues other than the typical pains of RA.
I hope you can see a Rheumatologist. If indeed you have RA it is important to get the proper treatment and not let it get carried away with itself as it tends to do. Also, it may take time to reach a firm diagnosis because it doesn't often show up in the bloods until it's well on it's merry way. 😈
Other than all this , I hope you are doing okay. I'm sorry if this explanation is not very adequate. I've just been at hospital and am rather in need of coffee ☕. Have a lovely day. xx 🌼🌱🌻
P.S. If you have any questions about RA I don't mind helping you as best as I can with my experience. I can't really give any medical advice of course. 😊
I am glad they are not dismissing you. You know your own body better than they do. If their tests show nothing they must be testing for the wrong thing?
Well, they don't exactly show nothing. All my pft's have gradually been getting worse and now both FEV1 and FVC 15% lower than 6 months ago, plus, the mild air trapping and bronchial thickening. I don't know... just have to hope for a diagnosis soon ^^
Just remember - as Rayswife said - you know your own body. It's alright to go to other specialists or even try alternatives. You mention problems when you sleep. What about an overnight sleep clinic where they check your vitals such as respiratory?
Hello... yeah, I went to another lung guy who's looking at my case now. And yes, I've got a sleepy study booked for December, so they're doing the tests, I guess
Just thinking - the next thing after a CT scan would be an MRI. I looked up some things on Google and found this site - erj.ersjournals.com/content...
It is quite detailed but I thought if you read it something in it might strike a chord. It also mentioned High-Resolution CT Scans which give finer detail than the CT scan and mentioned "the other forms of imaging, in particular the rapidly developing technique of hyperpolarized gas magnetic resonance imaging (MRI) of the lungs".
Also a thought - have you been in contact with mould or some form of pest control or industrial dust over the years?
Hello, thanks for the info I'll get my teeth into it once I get a chance!
I haven't really been in any contact with mould, as far as I know. As far as industrial dust is concerned, just the usual exposure from home improvements etc.
In the meantime, try singing for lung health. That will help you use what oxygen you do manage to breathe in to its best effect. If there's not a singing group near you, you could look for videos about singing technique on You Tube, then play your favourite songs and sing along.
I run singing for lung health groups and found that regular diaphragm singing an hour at a time, four to five days a week, has improved my FEV1 to near normal. I may not have much reserve, but I can make the best use of what I do have.
Have you not been given any medication, just to see the effect? It's odd that GPs often give patients Ventolin in the absence of any test results yet, in your case, you seem to have had numerous inconclusive tests, but no medication. I had no symptoms until my lung function dropped to almost 50%, yet others on this forum had symptoms way before that; you might be in that latter category, though it would be unusual, hence the apparent reluctance of your doctors to diagnose anything wrong.
I would try anything you can get over the counter, including Ventolin and antihistamines, and see what effect (if any) they have. Then report back to your GP/consultant, and go from there. The medical profession sometimes gets too hung up on test results and are unable to "think out of the box"; you might have to encourage them a bit. The figures they use are based on averages and 95 percentile ranges - you could be one of the relatively few people who have symptoms even though you fall within the normal range.
I forgot to mention that the first pulmonary specialist I saw put me on Seretide. It made a little difference and took away some of the chest tightness. Now I've been changed to Symbicort. I think it's worrking a bit better and I don't get the tremors and muscle cramps that I was getting from Seretide!
I think you're right in that my doctors are fixated on the results and the reference values for my age/height. I had read in a reputable paper that spirometry reference values may be inaccurate in extremely tall people and people and people with missing lower limbs. I definitely fall into the first category being 6'6" tall.
I agree with Superzob. What happened when you took Ventolin (Salbutamol)? Did it free up your breathing. Ventolin is termed a reliever medication and one way of testing for asthma is to have a lung function test before taking Ventolin and then again after taking it and see if there is any difference in the results. Did you have this test?
"Ventolin is a short-acting β2 adrenergic receptor agonist which works by causing relaxation of airway smooth muscle. Salbutamol, also known as albuterol and marketed as Ventolin among other brand names is a medication that opens up the medium and large airways in the lungs."
Both Seretide and Symbicort are made up of two different types of medication - a preventer which is usually a type of cortisone. The second ingredient is a long acting reliever (lasts approximately 12 hours but does not immediately give relief). Ventolin is a reliever but is immediate and short acting (approximately 4 hours).
Seretide and Symbicort have different preventers and relievers in their ingredients. They act slightly differently.
All the best in finding relief with your breathing!
To be honest, I haven't found that Ventolin makes much difference, although, when I was given a nebuliser in hospital at the beginning of this journey, I did find a lot of release of chest tightness - it was quite dramatic. I'm pretty sure that the medication in the nebuliser was also Salbutamol.
Out of all the medications so far, the one that has worked the best is Symbicort.
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