Breathless and really worried............ is this what to expect at moderate stage or should I have inhalors upped

I was diagnosed with COPD 10 days ago after having spirometry test by Nurse at GP surgery. Reading was FEV1 73. I was given inhalors Salbutamol 100mcg 2 puffs 4 times a day and Beclometasone 100mcg 2 pufs twice a day. I will go back and discuss as I was so in shock that I could not think of questions to ask. After reading posts on this great site, it helps me to now know what to ask and be better prepared. Thank you all for that.

If I am honest, I noticed over past 3 years that I was breathless on long walks etc. March 2013 I had chest infection and they gave me 5 day course of prednisone and I could breath normally again.............. only breathless on exercise. Xray came back clear.

Then I got breathless 2 weeks ago and now on above inhalors. Now I feel breathless whilst sitting down and wonder will my breathing return to how it was and just get breathless on exertion?

I have been paranoid since being told this as I work with homeless and have done for 12 years. My husband has told me to quit job now for fear of being more open to infections etc. I am 59.

How long do you stay in a stage? I know how long is a piece of string I suppose and it all depends on how well you take care of yourself? I stopped smoking in March with help of ecig but now stopped that and just have nicotine mouth spray twice a day.

I am sitting here at 4pm and dreading it getting dark. I tried going to bed but get panicky feeling and end up coming downstairs. Feel I cant breath. Please help.

27 Replies

  • Hi Twinks. First things first. Don't panic! Breathe in for a count of two. Hold it for a second or so then breathe out for a count of four. When you breathe out purse your lips together. This increases the amount of oxygen in your bloodstream. Panicking just increases the amount of oxygen you need so try to stay calm and relaxed. And take your inhalers as instructed. If you are still having problems on Monday call the BLF helpline on 03000 030 555. I hope this helps.

    Bobby xx

  • Snap, Bobby ! :) xx

  • Twinks, the more you get anxious, the worse it will be breathing wise. Try to relax your shoulders firstly - they get all tense and that effects how you breathe too. Take a deep breath in through your nose for a count of 4 and exhale for 8 through the mouth or through pursed together lips (as if you were whistling). Repeat four times. This releases trapped bad air and allows you take in more good air. I can't advise about your condition - only your G.P or respiratory nurse can do that - I would suggest another appointment armed with all your questions would be a good idea. Take care in the meantime and try and relax :) xx

  • Hi twinks1954,

    Welcome to the forum. We here all understand that the initial diagnosis of COPD or Emphysema or Chronic Bronchitis comes as a bit of a shock. Some see it as a death sentence. It is something that you will carry to the end of your life, but that will probably be twenty or thirty years away yet.

    So now you know you have it, what do you do? Live healthier. You've stopped smoking. Stay as fit as you can. Learn to recognise infections when they arise, and don't ignore them, hoping they will just go away, sometimes they just don't. As your COPD progresses through the years, you will get infections, and to treat these you will be given antibiotics and steroids. These are necessary for you to fight the infections, but eventually they do affect your immune system. The reason not ignore infections is that each time you get one, there is a possibility that it will cause a little more damage to your lungs, and so reduce their effectiveness and capacity.

    Your drugs. Salbutamol. This is a very safe drug that most people start with as yourself in an inhaler. The only side effect I've heard of is that when given large doses (equivalent to 50 puffs from your inhaler) it can make the heart beat faster. This drug acts on certain receptors in the airways in the lungs, making the airways relax and open up. Salbutamol usually is effective for 4 to 6 hours, hence you are to take it four times daily.

    Beclometasone. This is steroid drug to reduce inflammation in the airways. This helps to counteract any irritants that might be in the air you breathe, and reduces the effect of any continuing infection you may have. This is also a very safe drug that many patients start on.

    Hope this helps to start with. If you have any questions about anything, just ask. Someone will help. Just remember that the only stupid question is the one you did NOT ask.

    breathe easy


  • Thank you for quick reply - much appreciated. I re-read my post and panic was jumping from the page. I'm still trying to get my head round it and letting fear over ride things. I will see GP next week armed with questions and also ask if I can access Pulmonary Rehab Group. I seem to find breathing in 5 and breathing out 10 seems comfortable for me right now.

    Can I ask members when were you diagnosed?

    Not sure if it is the inhalers but now have a feeling like something stuck in my throat and keep clearing it. At Team Meeting last week I kept doing it and they kept looking at me as if I was clearing my throat to speak. * smiles *

  • Hi Twinks,

    I was diagnosed 5 years ago with mild to moderate, gave up smoking just before I was diagnosed.

    Panic set in for the first 2 weeks, it gets better. My medication is Salbutamol twice a day, Clenil Modulite, twice a day and Spiriva, once a day, my readings have not changed for the last 3 years, so it is stable at present, I go to the gym 3 times a week, walk on other days, every thing is just done a bit slower than before. Was able to retire early in September 2012, I'm 60. It will get easier, try not to read too much stuff on the internet, it will frighten the life out of you.

    Take care


  • Hi Twinks, I am back again. I was diagnosed 11 years ago as stage 3. I was moved to stage 4 moderate/severe last year. Five years ago my Fev1 was 33%. It is now 31%. So you can see it progresses quite slowly. As the others have said, keep fit, eat properly and keep coming on here to find friends and get information.

    Bobby xx

  • Hi again twinks, diagnosed four years ago and was FEV35% went down rapidly due to stress mostly to 21% but back up to 28% and feel better than I did when first diagnosed. I have relaxed with the whole thing now and find I just do things very slowly instead of full on as I used to do. It doesn't define who I am (chocoholic, resident idiot, and owner of a vile cat) I just get on and deal with it. :) xx

  • The chocoholic and the idiot we can cope with but that bliddy cat.........

    Bobby xxx

  • The heat has quietened him down a bit - all my scratches and gouges have healed - I use bio oil for the scars :) xx

  • You should have used a shotgun on that cat!

    Bobby xxxx

  • Have you tried a fan blowing on your face and also to circulate the air, I find this helps me.

    Lib x

  • I've had some horrid SOBs during this hot weather. As other has said panicking during SOB is a vicious cycle, try and focus on something to take your mind off of your breathing - yeah, I know, easier said than done!

    Just now I'm keeping cook with a bowl of ice sitting in front of a fan, and that very cool breeze is so welcome. As Lib says, a fan on the face also helps with our breathing. Take care and keep cool :)

    Sandra x x x

  • My matron prescribed Oramorph, it's quick acting and provides relief it's the first thing Ann reaches for when we can see its gonna be bad.

    Also get yourself a flutter, seems they're on prescription these days.

    Wouldn't be without mine.

    Chris xx

  • I was diagnosed just over 2 years ago with very severe emphysema Stage 4. I too was taken aback but after joining here I soon managed to control my breathing. Ask your doctor if you can have a hospital appointment with a pulmonary consultant as they will give you more in depth tests and give you the correct medicines. I have found that exercise is one of the best things for me. I still do the part-time job I had before I was diagnosed as, lucky enough, it involves some sitting and some walking, the best of both worlds. It's also outdoors in the fresh air, which I enjoy. I try and do most things I did before being diagnosed but it can take longer as I have to either plan it or rest a lot more often. Apart from that, I'm fine ! :)

  • Hi Twinks, this hot weather has been affecting my breathing very badly the last few days, I'm in the end stage category with 20% lung function. Just trying to sit it out at the moment, moving as little as possible. Can you sleep downstairs when you are more breathless? Depends if you have a downstairs loo really. Anxiety is our worst enemy as the adrenalin kicks in and makes us breath faster, as others have said make sure you try and breath out for longer than you breath in. Try and move around slower than usual to conserve use of oxygen and always set off on long slow breath out. Do you have a spacer to use with your salbutamol? They make the taking of the drug more more effective, you can get them on prescription or they don't cost much to buy. When I was in hospital recently I was quite shocked to see the amount of people who were using their inhaler incorrectly so make sure you read the use instructions thoroughly (you probably have, but just in case!), you need to inhale in and hold your breath for as long as is comfortable before breathing out. With the aerochamber you just breath normally. Here's a link:-

    Hope you are feeling better soo. Libby x

  • My shoulders have just gone down 6 inches !!!! I can see now where the panic was making it worse. Thank you all so much.

    Johnwr..... taking time to give me a better insight into inhalers and re grounding me that it's not a death sentence. I sure would love to see some grandchildren as don't have any yet.

    Phillips1 and Scrobbity with breathing. See I think what happens to me is. Because always been used to breathing and not thinking about it............ now that I have to focus on it, my mind wanders off and that's when I panic and lose the momento.

    Libbygood and Nowheeze............. I would never have thought of a fan. Chris has just brought one down from loft and it does help.

    Puffthe magicdragon (love the name) Yes I will ask GP next week about seeing Pulmonary Consultant and get anymore tests and meds/inhalers that would be best for me. So glad you are working and enjoying it and key is to exercise as much as possible. I can see that now.

    Slade, you hit the nail on the head about not looking on internet because that is what I have been doing every chance I get. Feeding my fear and my head has been all over the place. Not a nice place at that.

    I will seriously be giving up work as would be foolish to continue in environment of front line working. Awful last week as everytime someone sneezed, my wee heart flipped.

    Once I have more information about my diagnosis, we will tell our children. Will be in very calm way despite my recent post. Funny isn't it, hold down a stressful job that has impact on peoples lives yet crumble these last few days and feel like a baby.

    I am going to pinch son's exercise bike when I see him and buy a treadmill. Any other exercises you would recommend please?

  • Hi again twinks, I think probably you will benefit from a pulmonary rehabilitation course which will help you understand better how to manage your symptoms, and guide you about exercise and recovery positions for when you get out of breath, your GP can refer you.

    Also when searching on the internet for information to get relatively safe and recognised information by the medical profession, add the words NHS UK after the words you are searching for. NHS Direct, Patient UK, British Thoracic Society and of course the British Lung Foundation's main website have loads of information that may be of help to you, and of course the people in the community here can offer support and chat about their own experiences.

  • Awe Libby sorry to hear that you have been struggling in this heat. Thank you for tips on the spacer. I got one with prescription and use it. For the last week I have tried to sleep in bed but found that I would jump up to breath and so as not to disturb Chris, came downstairs and sit on sofa. Just as I'm starting to nod off or after couple of hours sleep I wake up gasping. Yes thank goodness have a downstairs loo and seem to spend a lot of time in there recently.

    I hope all of you are managing well and love your feedback and support to me as a newbie. Just have to figure out how to use this site and get a pic up.

    I am female 59 years - Scottish from Glasgow and live in Hampshire.

  • Hi twinks , just one thing i have thought of , Do you rinse your mouth out after using your inhalers so that no residue stays in your mouth

    ? :-)

  • Hi Twinks, it's me yet again. Try to get on a pulmonary rehabilitation course if you can. It's usually referred to on here as PR. They teach you how to exercise to give maximum benefit to your lungs and also better breathing techniques. They are well worth attending. Your GP should have a contact number.

    Bobby xx

  • Hi Twinks, if you are finding your breathing is really difficult and if you have a walk in clinic you can go to in your area use that, just so the doc can check you out and advise you further. You could also try and find out the emergency doctor contact for the weekend, if you look on the NHS Direct site. NHS direct also have a number you can call 24/7 for further advice if you are in difficulty through the night and you are unsure what to do.

    Hope you find your breathing easing and you begin to feel calmer soon, if things worsen don't hesitate to call NHS Direct or emergency service.

    This in reply to your original question. Will read your other query shortly.


  • Thanks Bobby I will ask about PR. Does GP have to do referrel or can I call them?

    Thanks Blakey will do. I just want to get back to how I was 2 weeks ago. Only out of puff on exertion and not short of breath sitting. Temperature is ok 98.7f. Must be the panic.

    Oh whilst I was trawling on the internet I saw ad for salt pipe thing and Chris ordered me one. Might help, don't know. Going to cut out carbs as need to lose weight and that will help too. All sounds so easy.............. lose weight

  • Excellent advice and support on the PR course, it even covers healthy eating for your lungs. BLF main website has information on this. Copy paste web address below into your browser to read more:

    Hope you find that helpful

  • Hi Twinks.

    I bought the salt pipe a few weeks ago, started to use it for a couple of weeks, does make you cough a bit to start off with. I then went on holiday and didn't take it, had forgotten about till you just mentioned it, I need to get it out of cupboard and start using it again. I asked BLF about the salt caves, the reply was there is no proof they have any effect, don't waste your money, try the pipe, so that is what I have done.

  • Thanks Zaney........... now the thing is, I didn't know about having to rinse mouth out until a few days ago. Wonder if that is why have lump feeling in throat although see no signs of thrush in mouth. I rinse and gargle now. Basically when I went to GP and had spirometry with Nurse nothing was explained really and I couldn't get out of there quick enough. Nurse mentioned FEV1 was 73 and something about something else being 100+ .

  • Some time ago, I wrote a blog on breathing techniques. It's a bit long, but I beleive it's helped a lot of people. Follow this link to get to it:

    breathe easy


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