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In denile or not?

bryan45735 profile image
8 Replies

Hello everyone it's me again yes the one that's got mental health issues not by choice but that's a different topic, I joined this group in 2019 scared just like most people my own jorney could well be more health anxiety than lung disease I've had a lot of reassurance from the medical profession from my own doctors of whom I've stuck with and my pulmonary nurse im constantly thinking of my breathing and I have constantly googled the symptoms of copd, the symptoms that I've noticed are weezing but I only weeze if I huff out deliberately (you may ask why I do that ) as my pulmonary nurse said to me im looking for problems BUT I SAID THATS A SYMPTOM OF COPD ISN'T IT. I've been having breathing symptoms when at rest like I hold my breath, I sigh, I get blouted and so on now this is all the symptoms of what my doctor said dysfunctional breathing pattern OHH and guess what it coexist with copd I SAID THATS SYMPTOMS OF COPD ISNT IT and my doctor told me that I would not call it copd with me . In sep19 my fev1/fvc 68% and a fev of 91% I gave up smoking there and then 5 months later just before the very first lock down my fev 1 was 93% so that was then, im my own worse enemy when it comes to thinking I've been on different meds for my anxiety ect but will I feel like I can't breath normally again? I've spoke to loads of blf nurses and my own doctors many of times and all they say is you are one of the lucky ones to dodge the bullet ect I'm confused as my nurse says it's copd others don't now I made the stupid thing of buying a peakflow with built in fev1 probably one of the stupidest things I've ever done and I was blowing anything from 3.20l to 3.40l I was blowing 3.70l when I had my lung function test Feb 2021 that's worried me sick I have explained that to my pulmonary nurse just recently and she said chuck that away it may not be accurate but what she did say to me was WE DONT GIVE SPIROMETRY TESTS TO PEOPLE THATS ALREADY BEEN DIAGNOSED AS THERE READING FLUXUATE BUT I CAN TELL YOU NOW YOU WOULDN'T OF CHANGED OR DECLINED SINCE I LAST SAW YOU (and that was her words ) my question to anyone out there is when the doctor ect asks well how do you feel I explain that I only weeze if I led down and they say its because im pressing on my lungs I don't weeze if I'm standing up and it's not a weeze if I talk I deliberately make my self do it ask me why its because im looking for problems as I've been told, I have a very severe anxiety issues my breathing hasn't felt right for 2 years I've explained how it feels to the doctors and they have said its dysfunctional breathing I've never had a chest infection, I don't cough I'm quite active but I'm told it's all anxiety everything cant be anxiety I get told no one with bad copd would be able to do the things you do, im waiting to here from my doctors regarding changing meds to sertraline for anxiety, I don't no what to think especially now I've been told no SPIROMETRY any more because they only do them for people getting a diagnosis.

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8 Replies
Badbessie profile image
Badbessie

Anxiety is horrendous I know from bitter experience. Sadly there are no easy answers. From my own experience spirometry can be worry as my figures go up and then down but never seem to go anywhere in the long term. I thought they were more worry than reassurance. Please keep away fro Dr Google it can cause more worry than it's worth and the research is often contradictory. I think you know anxiety is part of your problem. Sadly logic and anxiety are not good partners and anxiety can become overwhelming. I am on sertraline and it did help. I also in the past received CBT and whilst not the perfect answer helped me to control my worries. As I said there are no easy answers but acceptance that anxiety could be part of the problem is a start. Reading your post I could have wrote exactly the same four years ago. My advice is to speak with your doctor, break your problems down and deal with them individually. It is a long process.

ck101 profile image
ck101

Yes Bryan they are correct about the pulmonary function testing, little will change in such a short timeframe. I don’t know what the schedule is for retesting but I haven’t had one since ‘04 which is a bit extreme but like you I have only mild disease. Doesn’t feel like it though. I also have a handheld spirometer and it’s shown a drop but not by much and I know my Pulmo will pass it off as natural ageing.

On the anxiety front and your dysfunctional breathing. These are intertwined and the sense all is not well with your breathing prompts a deep breath at the wrong time which is not satisfied triggering an alarm in your brain starting the cycle off once more. It’s a tough one to overcome but rigorous excercise, the setraline and breathing training should get you back on track.

Lastly be careful when switching to Setraline (also known as Lustral & Zoloft) things get worse before better. In that phase you can expect your anxiety to increase, do stick with it as it only lasts about 6 weeks, after this you will feel more like yourself and hopefully won’t be thinking as much about your breathing. Stay well and positive.

bryan45735 profile image
bryan45735 in reply tock101

Hi ck101 does our lungs age the same as someone that hasn't smoked l, also what I want to no is once you give up smoking you have haulted the progression of the disease, but you havant have you because our lungs age ? And what about car fumes, dusk, and stay away from people that have colds that hard if you have a 4 year old lol so all them factors will damage your lungs more but according to my nurse I've haulted the progression but if you are around car fumes dust day to day life really you going to damage your lungs more of course you are so whats my nurse on about I've haulted nothing

ck101 profile image
ck101 in reply tobryan45735

Past thinking on this is that the lungs decline at more or less the same rate as non smokers. Recent studies suggest the decline in FEV1 is 5% more in ex smokers than lifelong non smokers. There’s lots of factors to consider in individual cases, like exposures to pollution, amount of chest infections etc. One interesting aspect of a recent report I read is that the decline in ex smokers levels off to that of non smokers after 30 years. The rate of decline over time diminishes so after 10 or 15 years its likely so close its marginal. In your case your FEV1 is high so you have caught this early, you should get your flu shots and do your best to stay healthy to preserve that function.

Eastend555 profile image
Eastend555

Yeah i have had copd for years had some tests here and there no point in worrying my friend I hope you come to terms with it and also your mental health issues

Maricopa profile image
Maricopa

It does sound like you are your own worst enemy. It would be my opinion you need to address your anxiety issues. There are several different methods. I chose medication.

Patk1 profile image
Patk1

Perhaps address yr anxiety,get than under control and see how u feel then.perhaps worth looking on HU to see if anxiety support.also,worth contacting mindsmatter- its nhs and free,various support + help available if u want to help yourself

Ergendl profile image
Ergendl

To address your dysfunctional breathing, try a singing group or video that teaches diaphragm breathing. There are singing for lung health groups all over the UK: the BFL website has a page where you can find your nearest one. Singing is also good for the emotions as it releases the natural feel good endorphines which will make you feel better mentally too.

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