Just thought I'd give this a try and see if anyone can help. I have had concerns about small airways disease, like the bronchiolitis's. Has anyone out there had any of these symptoms and gotten a diagnosis? Does this sound like anything you've heard of. My docs have no clue. They just say maybe a small airways disease, but won't help other than that. They've tried to give me asthma meds for ages and they do nothing. My spirometry has been decent, nothing major, but some hints at small airways disease so they just throw asthma meds at me or tell me I am crazy.
I have shortness of breath that is worse with exertion.
1. difficulty swallow spit and or like the back of your throat is swollen
2. post nasal drip all the time
3. feel like you're breathing up mucus, but your cough is usually dry
4. bubbling or popping feeling in ribs and back
5. a yearning to yawn to try and get a deep breath, but it doesn't help
6. benefit with 1 good breath after getting out of a chair or certain body positions, but then bad again after that
7. feel good before getting out of bed in the morning, but as soon as you get up, breathing is bad all day
I can't thank you enough for any replies! Nobody has been able to help me figure this out so I figured perhaps the world might have someone with similar symptoms!
Best,
Mike
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MikeJM
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There’s a lot there Mike that’s subjective and not specific to anything. I have small airways disease and I feel it’s an underestimated entity within the pulmonary world. Currently the jury is out on the value of the MEF25-75 anyway. The FEV1 tells all apparently.
Symptoms you describe I relate to are SOB, dry cough and various sensations in the lungs over the years.
There are however tests that are helpful in a diagnosis of SAD, Oscillometry, Nitrogen Washout and a specific CT Scan where you exhale rather than inhale.
There are new meds formulated to reach the small airways specifically Fostair. Other drugs found to be helpful are Singulair, NAC and biologics.
How do you feel you have arrived at this point? What were your exposures, do you have any rheumatoid type things going on or previous asthma or gerd? All relevant in the world of SAD…
Hi Mike and welcome to the site. Sorry I cant help you but am sure there will be a few here who can guide you. I was treated for asthma for years and none of the meds worked, it turned out I dont have asthma but bronchiectasis which was diagnosed after a ct scan. Keep investigating and asking questions eventually you will get some answers x
Hi, I do have Small Airways disease diagnosed in 2013 by CT scan at St George's SW18. Also asthma .My inhaler for 3 years has been Fostair, it's small particle and I have to say its changed my life a 100 fold (along with a move away from the pollution of London in 2015).
My FEV1 has remained unchanged over the past year. It was 102% a year ago. Recently I was tested and it was 110%. So it’s not shown any signs of dropping.
I was exposed to sodium hydroxide. It is a chemical that is used to remove stain off decks. It is widely available here in the U.S. It is in every hardware store in the nation. I had no noticeable reaction to it at the time. My shortness of breath didn’t start until 7 months after the exposure.
I did have very bad Gerd. This was fixed with a nissen fundoplication about 12 weeks ago.
Last fall I started feeling chesty. It felt wet and gross like I was breathing g stuff up. I ignored it and figured it was likely a cold or something. I had severe chest pain one day in December. It felt like my chest was being run over by a car. Then about a day or two later the shortness of breath happened. I went to the ER. I couldn’t breathe even sitting. It was terrible. It led to panic which made matters worse. But after 10 days I improved. There was no explanation for why I improved other than prednisone and inhalers. I thought it was asthma because I got better. I still felt chesty. But sob was better. There were some days where the sob would come on just ever so slightly, but then it would go away again.
After 4 weeks of feeling better, the SOB came back. Now it’s been so long I can’t remember the last time I could breathe.
It’s definitely an exertion issue. I believe it’s why lying in bed makes me feel good. There have been better and worse days for sure. There have been occasional days over the past year where I felt a little better. Never back to normal. Just breathing easier at rest some days than others. Bit it’s always bad with exertion no matter
Despite that I’ve been able to exercise. It’s just pretty miserable when I do so. I can jog. I just cannot get a deep breath when I do. It takes about 5 minutes after the jog before I can get a deep breath again.
My pulm thinks small airways disease due to a low normal FVC/FEV1 ratio. Usually between 69-71. Residual volume was 151% a year again, but recent test showed 99%. My spirometry has been of little help IMO. The high FEV1 and DLCO have led docs to say it’s unlikely any lung disease would be causing me any symptoms. However, from the research I’ve done, I disagree.
Id love to believe it’s asthma but I’m not sure why it’s so persistent all day and then better before getting out of bed. The lack of any medicine working seems strange as well. The post nasal drip and swallowing trouble is a mystery. I’ve had a lot of strange symptoms over the past year. At one point my joints hurt so bad I was test for RA. It turned up nothing. Now my joints feel great.
The sensations in my ribs are unexplained. It’s also bizarre that I feel better some mornings and terrible other mornings. When I say better I don’t mean good. Just a little better.
I have lot of joint pain also, to the point I have walked with a limp. Today I have knee pain, a year or two ago intermittent hip pain. Next week it will likely be my other knee!
Also tested negative for RA. As one Pulmo said to me these things are self limiting and/or take decades to play out, not what you want to hear under the circumstances.
In the face of mild disease sometimes there are no answers, this is especially true in the case of the small airways, also called the “silent part of the lung”. The small airways also don’t show up on a CT as problematic until they are well and truly obliterated.
When you have an FEV1 over 100% as in your case you will be discounted as someone whose more affected mentally than physically. To be honest here an exposure showing symptoms 7 months later seems like a long, long time, were / are you a smoker? What does your Pulmo say about the delayed response? Could be something else.
I've always thought that was a long time to have a delayed symptom onset as well. The only thing that I could relate it to is that some military vets have had symptoms after serving in Iraq and Afghanistan from exposure to sand storms and burn pits. All their testing was normal. PFTs, CTs, CPETs. Nothing that explained why they were short of breath. They had to have biopsy, which confirmed constrictive bronchiolitis.
Yeah, according to NJH, “BO usually causes dry cough and shortness of breath, 2-8 weeks after chemical exposure.” My SOB was 6-7 months later. Dry cough started way before that though.
I read an article where people were getting answers. Although one would need a biopsy for such an answer, I sometimes feel the benefit of knowing what is or is not going on would far outweigh the risks. I think biopsy, although it has risks, is not that risky if done in the right hands and by the right docs.
Decades to play out sounds a lot better than 5 years to live as google likes to indicate.
I too have the same symptoms as yourself, so can sympathise with you. After having whooping cough in Dec.1982 (lasting 3 months) and after thereafter having a cold, it was always followed with a lingering cough, for which over the years I would be prescribed steroids or puffers. Fast forward to Dec.2019 a Locum at the surgery felt I should be referred to a Respiratory Consultant. I told my GP that I felt I was wasting their time but attended many stringent tests including a chest xray. At the Consultation follow-up, I was told all tests were borderline normal and would be signed off BUT that my case would be discussed to see if anything had been missed. My GP and I received a letter confirming sign-off. I had phone-call from Consultant to say after discussing with colleagues, I was to have a CT scan (as xrays are not always 100% accurate!). Then Covid lockdown happened. By May 2020 my GP looked at online hospital records to view report which said Mild Bronchiectasis (as a result of whooping cough in 1982). You say you were diagnosed with Bronchiolitis, which I thought was a virus in infant babies. The Chest Clinic showed me breathing exercises and have rescue packs of antibiotics to take in the event of a flare-up, no ongoing meds. I've had 2 flare-ups this year and taken a/b to prevent chest infections. By the sounds of what your symptoms are you need good management for sure. The breathing techniques help hugely (search Internet), along with having a daily walk. Good Luck.
My FEV1 was first recorded at 102% last December 2020. My last FEV1 test was July 2021 of this year. It was 110%. So it actually increased. I have seen some dips in DLCO over the year. It started at 126%, then went to 114%, now at 111%. I saw a pulm at Mayo Clinic. He told me if there is truly something progressive going on with my small airways, my FEV1 will eventually start to decline. That wasn't exactly comforting, but it does give me something to look at over time to see what the heck is going on. I have yet to hear a time frame as to when that would start to take place if it were to decline. As of now, I imagine my FEV1 would still be around 110%. That means there will have been no decline in about a year. Has anyone seen their FEV1 or DLCO decrease over time? Did anyone start out with normal #'s and then they declined?
My FEV1 started out at 4.77L (104%) back in 2004, it stayed constant to 2015 where the % increased to 112%. Now it’s @ 3.9L (96%). I did manage to get it to 4.4 (108%) with Albuterol. So there’s a case there for asthma at least.
From 2014 to a few months back I wasn’t on inhalers.I’m now back on the inhalers but nothing changes the way I feel. Still can’t get deep breaths. Wake up wheezy and breathless. Dry cough, very little sputum, ever. Waiting for a Pulmo appointment currently.
Just wondering as I am currently breathless on exertion and have had a low peak flow for months. I have COPD, bronchiectasis and asthma but usually am better than I am now.
Recent chest x rays have shown nothing of concern - no sign of infection, inflammation or fluid in the lungs. And yet, I am wheezing, rattling, coughing (often dry) and struggling to get my breath at times.
My GP is going down the heart failure route now and has referred me to cardiology.
Just thinking, could your heart be causing your symptoms?
Last time I was told, my COPD was considered to be 'moderate'. I do clear the mucous but some days it's harder to do than others. I take carbosisteine which helps.
Yesterday, I spoke with my GP and now she's going back down the lung route! This is following results of my blood test that showed there were not any heart issues. However, she's not pleased with cardiology as all they have done is fit me with a monitor a couple of weeks ago. It should have been a 7 day one, but they couldn't find one that was working so I got a 48hr one instead. GP wasn't told about the test and hasn't been given any results. Also, I had spirometry that she knew nothing about. She is chasing the results of both but is frustrated that everything is taking so long. She said, 'I cannot treat you when I don't know what is wrong.' She was very sympathetic but unable to properly diagnose without all the information. Meanwhile, while I wait for test results, I remain on a diuretic which is, at least, helping to stop the build up of fluid in my legs.
Happy days! I'll just carry on puffing and wheezing for a bit longer! Lol! xx Moy
I have had the heart checked. I had an echo and stress test and everything looked good there. I’ve also had a CPET and my heart is healthy. Sorry you’re dealing with all that.
My issues are certainly pulmonary. They’re just undiagnosed.
Just thought it was worth me mentioning it in case it wasn't being followed up for you. I spoke to my GP yesterday and she is now swinging back towards lung problems as heart tests are not showing any issues so far. xx Moy
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