Can COPD present itself in different ways in different people ?

[BenHall1]

I was diagnosed with mild COPD in early January 2025. Yes, I have read as much as possible to learn as much as possible about this condition. As a result, I am becoming aware that it seems to be presenting itself in different ways, for me at least.

Following diagnosis my GP prescribed me Easyhaler with Sabutomol and recommend increasing my exercise ..... meanwhile she has referred me for Pulmonary Rehab - but thats just a case of shuffling along a lengthy queue, she also suggested I join a local Pulmoary Exercise Group - which I've done but they are really just static exercises. I try and walk daily and manage to do so 3 to 6 days a week and can manage between a mile and 1.5 miles. I seem to be doing all that I can to help myself at this stage. I plot my walking activities on my Strava App so I can monitor my progress.

So, I'm now coming up to nearly 3 months and I'm wondering if COPD can present itself in/with some people a mental aspect to the condition ? I ask because I feel that some of my mental energy is being diminished or sapped ..... yeah I know I'm 80, but most who meet me put me some 15 years younger and my OH too. That's the way we both are. Just wondering if this might be a side effect of Easyhaler with Sabutomol ?

I look forward to any comments/thoughts anyone may have. Thanks.

John.

[knitter]

hi and welcome .

Was it increasing breathlessness that led to your diagnosis , cough maybe ?

I don’t know if the inhaler would sap mental energy , perhaps contact the ALUK helpline which will be open on Monday by email or phone or a chat .

Congratulations on your keep fit regime .

[Patk1 in reply to knitter]

Helpline mon-fri 915-5pm0300 222 5800

[BenHall1 in reply to knitter]

Hiya knitter,

The breathlessness started mid summer 2024, but, I did not regard it as significant. By November 2024 I had to admit it was a problem. GP organised a Spirometry with Sabutomol lung function test out of which came the diagnosis of mild COPD.

I will talk to ALUK, meanwhile I just keep doin' my walking and exercises. Thanks v much.

[Biker88]

COPD is a generic term which refers to any condition that restricts breathing, primarily Emphysema and Chronic Bronchitis so if you have had a consultant lead diagnosis based on CT scan etc, you should know which one you have. I have several conditions that give a low reading on a lung function test, all of which require different treatment. So it may well be presenting in different ways, I have Emphysema, Aspergillosis, historic lung scaring, leaky heart valve. I was diagnosed during a cancer scare by a respiratory consultant and lots of tests. All these will indicate COPD on a spirometry test, but this test can’t tell which one.

[BenHall1 in reply to Biker88]

Thanks for that info .......... mind you having read your post over and again I've come to the conclusion I'm on a hiding to nothing. Tempted to say ------ bloody typical of the medical profession in Britain - always talking gobbledy gook with forked tongue. Having looked at the print out of my tests and all the numbers and abbreviations -- even bloody Einstein would be battling. Useless !

[Ergendl]

I have COPD with asthma overlap, and sometimes get a bit woolly in the head if I have pushed myself too far and depleted the oxygen in my body faster than it can be replaced. Running a weekly singing for lung health group helps me combat that, as does pacing myself.

As COPD is an umbrella term covering several lung conditions including emphysema and chronic bronchitis, it does affect people in different ways. Some people cough up a lot of phlegm, which I don't do much at all.

[BenHall1 in reply to Ergendl]

As I said to biker88, this whole thing is a bloody nightmare .... bloody Drs and GP's, useless. I learned a long time ago to give GP's the flick into touch in my early days with a HEART ARRYTHMIA. Useless. I then consulted a Nutritionist ...... brilliant ! Arrythmia sorted.

Interestingly, when all my Spirometry test results came through I made an appointment with my GP. Bloody gobbledy gook !! I challenged her diagnosis of COPD, I queried ACOS (Asthma Copd Overlap Syndrome) and it was all abruptly pushed aside. I've never been referred to a Consultant, by the way. Can't be bothered, the waiting times these days make any further diagnosis/ analysis both pointless and irrelevant.

One thing I am suspecting is ageism firmly at work. I'm 80 as I have already mentioned. Been through all this once before when my local NHS Hospital Trust made some not so oblique reference to my age ( and I was much younger then ). I wrote and made a formal complaint to my MP requesting he take it up with the Secretary of State for Health. This was done and was followed over a period of many weeks with much grovelling from all. Sorted. Nothing like kicking ass, and doing it big time.

Again, these umbrella terms are just gobbledy gook and of no use to anyone. Must say, not into singing at all - but love walking, I set myself targets, nothing stressful and try for them. At the moment I aim for at least 1 mile per walk and I guess "woolly headed" describes how I feel at the end of it. Yesterday managed 1.5 miles. One of the issues I'm struggling with is how to breathe properly when I'm out walking, i.e walking and breathing correctly simultaneously !! Probably something on YouTube. Yeah, I produce phlegm too but cannot out clear it out by coughing. Can't bring it up at all, like you say.

'Ave a nice day and thank you.

John

[anng1814 in reply to BenHall1]

Hi BenHall,

My husband had exactly the same problem - ageism - incorrect diagnosis based on his age, not tests. He's given up with them and feels a lot healthier for it!

[BenHall1 in reply to anng1814]

So sorry to read that ............ TBH, this whole bloody health service is like playing Russian Roulette. My nature is that I do not suffer fools gladly - and I say things as I see them .......... so I don't need anyone to tell me it probably works against me !! But there are 2 ways of doing things ..... my way and the wrong way. 😀

I'm happy to continue with my walking ( good for my heart too ), and I have trackers which help me monitor my progress. Download it to a spreadsheet and always take the said spreadsheet when I visit a medical unprofessional, all ready to put them in their place. Nothing like taking the wind out of their sails with cold hard facts.

Good luck to you both on the journey.

John

[Patk1 in reply to BenHall1]

Take a look at aluk website " pursed lips controlled breathing technique " practise and practise so it's familiar to use whn needed.if u walk at a pace that accommodates ths breathing technique , it should benefit you - even if u have to slow down a little,u may go further.its also gd for stairs,steps etc

[BenHall1 in reply to Patk1]

Patk1,

Thanks for that. Indeed, I'm doing this particular exercise currently with my weekly breathing session group ( along with a wide range of other breathing exercises etc. etc. ). I'll have a chat to the group leaders later this week. Unfortunately, this breathing exercise group only do static exercises, not walking/ mobile ones.

Thank you.

John

[Patk1 in reply to BenHall1]

It's really useful & whn Yr familiar with it u automatically slip into it whn needed.i find its a gd way to expand lungs too. And whn I've had severe airway collapses,asthma etc it's been my life saver, literally. It allows u to focus when eg exercise/ walking, and to slow breathing down,while maintaining gd airflow.using ths and adjusting pace to accommodate it shld help u

[Izb1]

Could it be that you are shallow breathing and not getting enough oxygen , I find myself doing this most of the day and have to remind myself to take a long breath in. If you feel it might be the inhaler speak with your nurse/gp and see if a different one helps, if not you can always go back. I found that salbutamol didn't work well and went back to Ventolin. It sounds like you are doing well walking 3-6 miles a week, I don't do enough. Let us know how you get on x

[BenHall1 in reply to Izb1]

Hiya Izb1,

Yes, I'm coming to the conclusion that my breathing, especially when out on a walk, leaves alot to be desired. I don't seem to be able to coordinate my walking pace with my breathing, so my walks are not producing best results. That said, I'm not sure my current Salbutomol inhaler is any good either. When this lot runs out I'll talk to my GP or Surgery Pharmacist about options like Ventolin.

All that said, I'm waiting to start my Pulmonary Rehab Course in the next few weeks ( sometime ). Meanwhile I just plod along with my local exercise group and my walks. Looks like a good weather week coming up, so I'll be out and about ..... crackin' on. 😀

John

[Ergendl in reply to BenHall1]

That'w why a singing for lung health group can help. If you're not into singing, try playing a wind instrument like a flute, trumpet, recorder or mouth organ. If you don't want to make much noise, blow bubbles through a 3/4 filled glass of water.

To learn how to use the diaphragm for breathing, lie down with a large book on your stomach (on your bed or a sofa is fine). Then try to raise and lower the book just by breathing in and out. Once you have learnt where those muscles are, you can consciously start to use them when you walk and do other strenuous activities.

[Digni1907]

Try to do more deep diaphragm breathing and research into using Nordic walking poles when you are out walking, group walks available. Improve quality of walks not only distance to aid breathing, strength, mobility.

[NieceByMarriage in reply to Digni1907]

Nordic poles is a really good idea. I have a book by Noah Greenspan (Ultimate Pulmonary Wellness, or something like that) and it is well worth reading. He is a pulmonary physiotherapist and knows masses about what exercise works and why. Holding on to something when walking or running can be a game-changer! (It's the difference between a closed chain and an open chain exercise for anyone who might be interested in fitness gobbledegook)

[BenHall1 in reply to NieceByMarriage]

Thank you NiecebyMarriage,

My breathing issues are now starting to open up a whole new world. Time to do research at a whole new level. Thanks for the tips.

[Saika_8Freya in reply to NieceByMarriage]

Hello NBM,This is a funny old forum for me.I always have a quick looksee after i have received my email alert for Healthunlocked and Lung uk and occasionally it produces gold.I have just ordered Ultimate Pulmonary Wellness after having read the reviews which were incredibly positive.Panicking when breathless and how to cope definately caught my eye and a few others bete noires.I think the Nordic Poles might be a stretch too far as i'm a bit far gone with Emphy,10metres is my limit!But you can always improve with exercise no matter how bad you are.I have high hopes for some tips.Fingers crossed.Thank you NBM x

[BenHall1 in reply to Digni1907]

Thank you for that info. Looks like I'm about to start a whole new journey. 😀😀.

Hadn't thought about Nordic walking ! 😱

[Timberman]

COPDS or Chronic Obstructive Pulmonary Disease can be one of or even more of several diseases. I have stage 4 COPD with emphysema and bronchiectasis. You need to know what you havce to ensure the right treatment. Your GP is a 'Generalist' so I would suggest you seek an specialist opinion and accurate diagnosis. There is an extensive support system you can tap into.

[BenHall1 in reply to Timberman]

Thank you. I have an inherant distrust of 'umbrella' terminology in medicine .... reeks of "being all things to all people", and not necessarily for the benefit of the patient.

I have been referred for Pulmonary Rehab and when I get there I'll try and pick a few brains - then decide on the direction of travel. Currently, inhaler and exercise isn't making me any worse even though I don't have any noticeable benefit from the inhaler.

A total shambles !

[Timberman in reply to BenHall1]

Oh dear. Well you see if diseases require very similar treatment it makes sense to group them together. It also means hat clinical expertise can be shared more equally across the disciplines. So the days of being 'ONLY' an Asthma specialist or 'emphysema' specialist etc are long gone. Maybe your local set up is not as good as that I have experienced first in Norfolk and now in Essex.

By the way, If you are going on a Pulmoary Rehabilitation Course I wish you well - I have done 12 in total but my recovery rate now at severe stage 4 is too low to continue - sadly. I found the sessions very useful and I hope (although not strongly in your case) that the information offered will be of use to you.

[BenHall1 in reply to Timberman]

Hi Timberman,

Your opening paragraph makes sense ... thanks. My local set up is appalling, down the pointy end of Cornwall where we have 3 'cottage hospital' facilities and only one major hospital for the whole County ....... and the bloody tourist season is about to get underway !! so that one major hospital will soon get filled up with idiots injuring themselves while fooling around on holiday. Or they come down on holiday thinking they will get better/quicker attention for their ailments than they would in their home town. Queue jumping !

I too have experienced better healthcare than that on offer down here, namely east Surrey, both at GP level and hospital level. But I suppose you'd expect it in wealthy Surrey compared to the poverty in Cornwall with its 5 month a year seasonal tourist economy.

Thank you again for your advice and I wish you well on your journey.

John

[Saika_8Freya]

Hi Ben,I could be wrong but i have always understood that salbutamol and ventolin are the same.Same medicine just different name.Maybe manufacturer?Hopefully you will soon have found your way out of the m isleading COPD minefield,

[BenHall1]

Hiya Saika_8Freya,

Thanks, I did look it up and you are quite correct - this is the comment .............. "Salbutamol inhalers - Brand names: Ventolin, Airomir, Asmalal, Easyhaler, Pulvinal, Salamol, Easi-Breathe, Salbulin".