This illness is getting harder to deal with please help!!!

Was diagnosed eventually with copd (emphysema) 2011 then few months later asthma, after having many test and changes in meds I still feel like I have not gone forward but keep going backward. Recently was going to b put on a rehab thing but for other reasons can not do that yet. My breathing seems to be worse, I don't get out often due to being worn out just breathing and when I push myself t do things can be worse for days after. When I had my spirometry done at the clinic she said it was normal like last time so why can I not breath properly if these readings are good. Im so confused and depressed with it all. Thanks for listening Lizzy x

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  • Could you have a chest infection Lizzy? Are you coughing up mucus that is greenish?

    When you say you cannot get out much because you are worn out breathing, is your breathing labored even when you are not doing much at home say?

    I personally think that you need to go back to your doctors, as this does not sound right to me that you are so SOB on such small effort

    Make sure you explain that to the doctor, I am sorry I can not be more helpful

    Love Sohara

  • I think your answers are always informative Sohara

  • Oh Lizzy wish I knew. I know that going backward feeling. Are you on any medication? I don't go out much socially as it is too tiring. I'm adopted the keep exercising keep walking, eat well and rest when i'm shattered. I am trying to control my breathing when I get breathless. I am beginning to think all these numbers mean nothing. I have stopped bothering with mine makes me worry and that makes me worse. Hey ho. What will be will be. Take care. Someone with more knowledge on here will be along soon I'm sure.xx

  • Thanks for your replies, yes im on loads of meds and yes I feel yet another infection coming on my white blood cells don't do there job, but my breathing is bad all of the time just worse when I not well. I have been telling docs, nurses and consultants for many months now but they either change my meds or say see u in a few weeks. I don't go out much because I am worn out and breathless just getting ready so I have got to the stage I cant be bothered to put myself through it.

    Many thanks x

  • Hi lizzy,sorry to hear you so down about everything,it's not a nice place.Im sorry I'm not much help!

    The only thing I can think of,is it possible that you are having panic attacks? As that makes it hard to breathe normally,but would explain why your spirometry is ok.It seems a shame you can't do rehab yet,as that would help with the breathing.

    Forgive me if I'm off the mark there! It's just that if that is the case,certain meds.could help that enormously.

    Do go back to the Doctor,as Sahara suggested,& put all your cards on the table,so to speak.

    Good luck with it all,hugs,love Wendells xxx

  • Hello Wendells, I use to get panic attacks before I knew what was happening but now as I sit here today have done nothing other than take my meds, make a dink n eat but I feel I can not take in a proper breath. Maybe its normal and its just my imagination as my spiromtry tests are normal but it been so long now I forgot what normal is.

    Thanks x

  • Afternoon Lizzy.

    I feel your pain. Two years running I've had Pneumonia and from June to December I had loads of AB's and Steroids and still felt terrible. So when I saw my consultant I told him I didn't think the courses of medication were long enough so when they finished the infection came back, and I couldn't stand it any longer so he had to do something and he prescribed Azithromycin an AB three times a week, fingers crossed I've felt brilliant and I'm just doing my PR now. It might be worth mentioning to your doctors.

    Good luck

    Kim xxxx

  • Kimmy ....good to hear you are at last feeling better. You seem to have tried so hard to get well and when things haven't worked you've stayed positive. Cheers Coastal.

  • Hi Lizzie, I feel for you, having been there myself. My GP prescribed Oramorph for me to combat anxiety and it seemed to help. Perhaps you need to see your GP again and tell him exactly how you are feeling right now, All the Best, hope you will soon feel brighter and more able to cope.

  • Hi lizzy,Its a dreadful disease and there are good and bad days..Like you I get really breathless just sitting down.Its horrible not being able to breathe.If you feel unwell see your g.p asap for antibiotics if you think you may have an infection..

    Everything is a big effort,just washing and dressing takes all your energy and I like you don't want to go out and feel exhausted all the time.I am in gold stage Emphysema and its not a nice place to be .Have you been taught breathing exercises by nurses to help with sob?I really feel for you,big hugs Laura

  • Hi lizzie

    So sorry to hear about the difficulties you are having.

    Your symptoms seem really quite severe to say that you have been told that your spirometry readings are normal ! ( have they given you any figures ..as in a % or as a stage eg stage 1...mild , stage 2...moderate , stage 3 ..severe , stage 4 ..very severe.) It sounds as if you have seen a consultant so I assume they have done a CT scan and other tests to rule out other problems.

    I noticed fro a previous post that you are still of working age so seem young to be experiencing symptoms which are affecting your quality of life to such an extent. ( However I know that copd varies so much in how it affects people )

    As mentioned by Kimmy in a previous posts a chest infection which never fully clears may be to blame .

    I really do hope you manage to get things resolved .

    Cheers Coastal.

  • In 1988 I was diagnosed with Emphysema.16years ago. and slowly I have got worse and worse; My GP could not believe the spirometer reading made me take it two more times. Then said to me do you see the nurse ,I said yes; After that nothing more was said but yes breathlessness is extreme. With like an all over internal misery. Its an every day ugliness I live with! I have only been given by the hospital inhalers. My GP prescribes nothing for me, not helpful ! And Lizzy that's the way it is it get slowly worse and inevitability depression follows. Sorry to be of no help Only wish for you comfort that you truly are not alone we share with you this ugliness Hope we all may get a cure one day bless you

  • And by 1988 perhaps you mean 1998? Or were you diagnosed 26 years ago?

  • Sending you lots of virtual hugs lizzie and hoping there is some improvement for you soon.

    love cx

  • I'd check there's nothing in your environment that's setting off your asthma. Mattress covered?, anti allergy pillows?, all can help.