copd ????

Hi I have been having breathing problems with chest and back tightness for the past 4 years

breathless when exercising

plem worse in mornings

bring up half cup full everyday

sleep on 3 pillows to get breath in

unexplainable fatigue everyday even with 8hrs sleep

worse when exposed to smoke perfumes strong odors

worse in extreme hot or cold weather

worse when humid or in smog conditions

tired after eating

feel full very quickly

feel like lungs sit on stomach

xray showed overinflated lungs

all the above and still no diagnosis - had ct scans - mri - breathing tests - bronoscopy - all show nothing and still I am having all the above symptoms - was previous smoker -

has anyone else out there experienced the above and then later been diagnosed with copd or emphsema in early stages???

- of course its the same old story anxiety depression - but what about the pain and fatigue these are not in my head - I take targin and panadeine forte everyday - for the pain in chest and back - any suggestions on any puffer to try or medication to thin out mucus - I would love to hear thanks xx

17 Replies

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  • Hello sbestwick

    I have COPD and Asthma and experience many of you symptoms.

    I am no expert but after all those tests l would have thought the Doctors should have come up with a diagnosis.

    I take amongst other things....Mucodyne Capsules ( Carbocisteine 375mg )

    2 capsules twice a day...to thin out the mucus.

    It works for some, and luckily it works for me.

    I hope you get sorted out with your symptoms quickly

    Velvet xx

  • DO YOU NEED A SCRIPT FOR THE MUCODYNE CAPSULES? THANKS

  • Hi sbestwick

    Yes l need a prescription for my Carbocisteine capsules.375mg.

    I was started on 2 capsules three times a day for a month and then a maintenance dose of 2 capsules twice a day.

    My COPD was diagnosed by my symptoms and a spirometry test

    Which you say you've had.

    Velvet xx

  • normally with emphysema something would show on ct scan , I think with all the tests you have has there should be something showing up , hopefully some one will be able to help ,take care

  • THANKS I NEED TO KEEP TRYING AS I AM NOT GETTING ANY BETTER WORSE IF ANYTHING AND I WAS ONCE IN PERFECT HEALTH

  • I am sorry that you are having all that to contend with and no diagnosis. I am surprised that all those tests have not revealed anything. But there are some unusual lung conditions that are difficult to diagnose and can hide on scans. Ignore any suggestion that it has a psychological cause. That is a far too easy route for lazy doctors to take. You do not say if you are a man or a woman, but without wishing to sound sexist, my experience is that it is an option that they take more frequently with women.

    I too have had doctors telling me I am anxious, depressed, that it is all in my 'subconscious', whatever that is. And the number of times I have been told to try cognitive behavioural therapy is astronomical. Three counsellors, one physiotherapist, one health trainer and a clinical psychologist have all said that there is no psychological component in my condition. So, keep battling on, clearly, politely, and assertively. You deserve a diagnosis.

    Hyper-inflated lungs definitely need an explanation. Caused by air trapping?

    It is not a million miles away from my situation.

    Let us know how things go

    K xxx

  • THANKS FOR ALL THAT I AM SEEING A NEW LUNG DR SOON WILL LET YOU KNOW HOW I GET ON ITS SOOOO FRUSTRATING NOT FEELING WELL

  • Hyperinflated lungs is a standard symptom of copd sbestwick, as are most of the others you mention. It is possible to be breathless due to anxiety, but NOT to produce half a cup full of mucus. Before i had copd i had asthma all my adult life, and i had most of those symptoms with it. I don't know if that shows up on X-rays, ct scans etc but i think possibly not.

    Take someone with you when you next go to the GP and insist that you need a diagnosis. Presumably you've had blood tests? There are some - ESR and CRP - which measure inflammation in the body. Ask if there's any medication which you could try to see if it helps with the breathlessness. And ask for a referral to a consultant if you haven't already seen one, and a second opinion whether you have or not.

    Let us know how you get on, good luck.

  • THANKS I AM GOING TO SEE A NEW LUNG DR IN THE NEW YEAR - SO SICK OF NOT FEELING RIGHT AND SO TIRED ALL THE TIME

    WILL KEEP IN TOUCH

  • (guesss from the xs)Female? Age? How long did you smoke? When did you stop? Before CT scan you have had a spirometery ? What were the numbers? FEV1 FVC? Any history of asthma?

  • I AM AGED 51 FEMALE - SMOKED FOR ABOUT 15 YEARS - 10 PER DAY

    STOPPED ABOUT 9 YEARS AGO

    SPIRO WAS GOOD THEY SAID

    NO HISTORY OF ASTHMA

    THE MUCUS AND TIRDNESS ARE NOT NORMAL I KNOW THATS ITS SOMETHING TO DO WITH LUNGS

    GOINMG TO SEE LUNG SPECIALIST SOON WILL KEEP IN TOUCH

    ANY ADVICE YOU CAN GIVE WOULD BE GOOD

    THANKS

  • It must be so frustrating not being given a diagnosis after all those tests, but you've had lots of good advice here. You could also try ringing the BLF helpline (03000 030 555). They might have some answers for you, and would also be able to help you with what to say to your doctor to try and speed up a diagnosis or visit to a respiratory consultant.

    Good luck with getting your diagnosis. Let us know how you get on. Jan :-)

  • I've learnt many things from the kind people on this site and one thing that everybody seems to agree with, is ALWAYS ask for a2nd opinion if you're not happy. You know your body. On one occasion when my doctor was obviously not very interested in me, I said I wanted another doctor to come in now for his opinion or else I wasn't moving! It worked and I was correct in my self diagnosis!!! Good luck.

  • YES I SEEM TO GO ROUND IN CIRCLES HAVE BEEN TO SEE 3 LUNG SPECIALISTS SO FAR - GOING BACK TO ONE IN THE NEW YEAR AND SEE IF ANYTHING HAS CHANGED HOPEFULLY YES AND I CAN GET DIAGNOSED PROPERLY - YES I DO KNOW MY BODY JUST LIKE YOU

    THANKS WILL KEEP IN TOUCH

  • thanks very much I will

  • Hi I have same symptoms and have been diagnnosed with copd and poorly controled asthma I am on7.5predniselone steroids a day stero id inhailer sabutamol inhailer unphilin tablets the list goes on tablets for bones because of constant steroids calcium and vitamin d tablets also I swear I rattle when I walk

  • HI THANKS FOR THAT HOW DID THEY DIAGNOSE THE COPD ??

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