COPD - a mystery

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Hello

I am new to this & have a bit of a problem.

Last year, I went to doctor because I was increasingly breathless on exertion. I was given a spirometry? test which was a bit suspect as I noticed the machine was calibrated for 2001 although this was 2009. I queried this but nurse said it made no difference :?

Anyway doctor said I had COPD & was given spiriva & another inhaler.

Second inhaler gave me severe palpitations ( I thought I was dying).

Nine months on, I am even more breathless, get severe pain & have no energy.

Do not know what is normal for this condition. I did not expect that in nine months I would go from being a bit breathless to being useless.

My lifestyle means that I have to walk a lot but now each step is an effort.

Again, is this normal?

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  • Posted

    Hi sheep-ali,

    While breathlessness / weakness is normal if COPD is relatively severe, serious pain is not, so I would suggest you re visit your Doc to discuss this. Symptoms of COPD and heart disease are similar, and so if you or your Doc are unsure of the COPD diagnosis, this too should be checked for.

    With COPD, depending on the stage the disease is at, you may have an x ray or scan to check your heart health anyway, as the two can go hand in hand. If at the moderate / severe stage your GP should, anyway, be making an appointment for you to see a respiratory or thoracic consultant to check all this out as a matter of course.

    You should have (and if not, then politely but firmly ask for) the results of your spirometry test. You need to know your FEV1 which should be given to you as a percentage eg. fev1 52% or fev1 40% etc. The lower the figure, the more severe the disease. Also, you can then see if you are classified as mild / moderate / severe / very severe. Most of us tend to be moderate/severe at diagnosis .Don't go into a panic at this point, there are things you can do to improve both your health and your long term outlook.

    Let us know when / if you have your fev1 number, we were all in the same position a year or so ago, and most had never even heard of it before. We will all be here for you.

    As regards the reaction to your inhaler, this can be down to one of a number of reasons, the main 3 being, in order of likelihood;

    1. if the inhaled contents of the inhaler hits the back of the throat instead

    of being inhaled into the lungs, it causes palpitations, hot flush, tremors etc as it goes direct into the bloodstream. This is unpleasant but harmless and will within five or ten minutes or so, and means you will not get any benefit from the med as it needs to go directly to your lungs. This is a common mishap when first getting the knack of using it properly.

    2. Occasionally, someone may have a kind of 'allergic' type reaction, which is unfortunate, but simply means trying other alternatives, as with any medication.

    3. IF -and I repeat - IF- you have a heart condition, you usually have to forgo the inhalers - they have the opposite effect to heart medication and effectively cancel it out- However, Spiriva is safe even for those with heart probs so do keep up with that.

    i suggest you leave off the second inhaler until you have satisfied yourself about your COPD /heart etc with the GP/ consultant.

    Likewise, once you have reconciled the pain issue etc you can look at doing more exercise or pulmonary rehab to see if that can help.

    Do keep in touch - remember to 'bookmark' us too - we can be hard to find again otherwise! :roll: and make that appointment with the GP - think of all the queries you have as well as the pain etc and write them down to ask. Also make sure you have pen & pad to jot down your fev1 and any other info you might otherwise later forget.

    Will be thinking of you and waiting to hear back soon, love Vanessa x

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  • Posted

    Today I have received an appointment for a myocardial perfusion scan & I am terrified.

    Also, saw a different doctor today who told me that he reckoned my lungs were useless but that the rest was psychological - I have severe pain in my rib area which has started relatively recently.

    Basically I feel I am wasting everybody's time.

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  • Posted

    Hi sheepali, I have just read your post and I think vanessalee gave you some very good advice. I would add that your GPs seem less then helpful. To be told your lungs are useless is very, very wrong.......you are still breathing aren't you? Then they are working, even if not as well as they used to. Neither should they dismiss your pain as psychological, there are still tests to be completed (myocardial perfusion scan for instance) that may give an alternative reason for any pain you feel. No wonder you feel terrified. I have COPD and, when I have a chest infection or have had a bad bout of coughing, I also get some pain in my rib area. I also sometimes get extremely severe chest pain when I have a pneumothorax, which is a collapsed lung and which I have suffered on and off since childhood. Like you, I had a rapid deterioration in my shortness of breath over a short period of time. However, the cause is likely to have been that I still visited places where cigarettes were smoked and I was not taking sufficient exercise. My breathing has since improved again.

    From your description of your state of health I would guess that you are likely to have COPD, and you may have another condition which is causing some pain. Let them check things out and then you can deal with what you know, not what you fear. Try not to feel overwhelmed as this can indeed cause you to feel pain/other symptoms. Please, take a deep breath (well, as deep as you can!!) and try to bring things into perspective. Concentrate on the positives: you are still here and still breathing; they are checking out your symptoms to rule out other serious illnesses; you can take control by informing yourself about your condition because knowledge is power and allows you to monitor the service you are given and ask about things which may not have been offered; you have friends on this site who will listen, sympathise, advise and support you. I remember how I felt when I was first diagnosed. It is scary but please don't feel terrified. You are not facing this alone and you are definitely NOT wasting anyone's time. Do bookmark this page and do keep in touch.

    Jacee

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  • Posted

    Hi Jacee & Vanessa,

    Thank you for your words of encouragement.

    My scan is next week & it takes about 4 weeks to get the results so I will wait & see & keep you posted.

    Alison

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  • Posted

    Hi Alison, good luck for your upcoming appointment. But you don't have to wait for the results to have a chat you know!

    Jacee

    xx

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  • Posted

    Hi and welcome Alison. I.m 'old hat' with this illness (some 15 years) and can't add any more than Vanessa and Jaycee they are a wealth of knowledge and very good at expressing it - well done you 2. Carole :lol: smile
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  • Posted

    Hi,

    Just wanted to report a success- managed to get a blue badge!

    This despite the efforts of my GP who said that my problem was \"intermittent\"!

    Fortunately I had had dealings with a very helpful lady from OT at the local council & she had pointed out that the GP was talking rubbish & that you are either short of breath or you are not - it is not intermittent.

    Fortunately council lady agreed after an assessment.

    Now all I need to do is get DLA in order to try & get my life under control again but I am not holding my breath :lol:

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  • Posted

    :bubbly:

    Hi there, Alison. Many congratulations on getting the Blue Badge, I find mine invaluable. Fill in your DLA forms giving a worst case scenario, don't be over-optimistic. Then, if it is refused, appeal the decision as I am told that most applications are dismissed but most appeals go through. I am sure we all know people who get this who are not in as bad as state as we are.

    Do you have your assessment/tests this week? I think you do so good luck.

    Jacee

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  • Posted

    Hi,

    Just to say that I am still awaiting the results from my scan on 8th October. Was told 3-4 weeks, then 6 weeks but we have now passed that & still no word.

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  • Posted

    Hi Alison,

    That must be really frustrating for you - it's bad enough when you have to wait 2-3 weeks! Are you keeping in touch with your GP surgery about it?

    One point I would make - results are usually sent to the GP you are 'officially' under or the GP that requested your test to be done. I once wrongly assumed that as my GP had gone on maternity leave at the time I had the test done, the results would be checked and passed on by someone else - but 3 months later when my patience finally gave out, the surgery looked into it and suddenly 'found' the results floating around - apparently they had had them for a couple of months without realizing.

    I would say check again with your GP and if still not available ask him/ her to contact the hospital for them. There should be records so even if 'lost' they will be able to re send them. Failing that, if you still have your original appointments letter, with department, Doc you are under etc. contact the hospital dept. yourself and explain your dilemma. I would leave that as your last resort though, and first check for GP /Surgery incompetence as the hospitals are usually overstretched.

    Incidentally, I don't know if others do this, but I keep a file containing all past appointments and communication from hospitals, respiratory and oxygen clinics etc. I have done this since my very first spirometry appointment.

    Let us know when you do finally hear something - we will all be hoping it's good news for you and I will keep my fingers crossed!

    All the Best to you Alison, Vanessa

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  • Posted

    Welcome Alison

    You've been given some good advice already. Do ask for a referral to a respiratory consultant if you are not already under one.

    I was 9 months being diagnosed and went from bad to very bad in that short time. People with a lung condition de-condition rapidly if exercise is not kept up regularly and of course when we are unwell, without correct diagnosis and without the proper medicines this situation does tend to happen.

    I can recommend attend a pulmonary rehabilitation course, your doc can refer you.

    Please don't delay seeing the doc whenever you feel unwell, or if you feel your medicine isn't working for you.

    Wishing you all the help you need at this time.

    Take care

    V

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  • Posted

    [quote:d578d0eacd=\"cats and dogs\"]Hi and welcome Alison. I.m 'old hat' with this illness (some 15 years) and can't add any more than Vanessa and Jaycee they are a wealth of knowledge and very good at expressing it - well done you 2. Carole :lol: smile[/quote:d578d0eacd]

    Hi Carole

    Great to see you posting, hope you are feeling much better and have had a good rest.

    Take care

    V

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  • Posted

    [quote/)

    Hi Carole

    Great to see you posting, hope you are feeling much better and have had a good rest.

    Take care

    V[/quote]

    V. You don't seem to have read this very well. Carole's post was 29th Sept. I understand she is not around at present but we are hoping to see her back shortly?

    F

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  • Posted

    [quote:23e91d0ceb=\"Anonymous\"][quote/)

    Hi Carole

    Great to see you posting, hope you are feeling much better and have had a good rest.

    Take care

    V[/quote:23e91d0ceb]

    V. You don't seem to have read this very well. Carole's post was 29th Sept. I understand she is not around at present but we are hoping to see her back shortly?

    F[/quote]

    You are right F. Carole's post was quite old. She is in a hospice just now and we are indeed hoping to hear from her soon.

    Jacee

    xx

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  • Posted

    Hi

    Just to say I eventually got my results - no heart problems :D

    Apparently you do not get told results if everything is all right! Do not know how long you are meant to wait before you know that you are in the clear.

    I am sitting this morning waiting for my lungs to get good enough to allow me to do something physical. It seems to take longer every week.

    Had a test from the nurse last week ( first in a year)- fev1 - 46%. Do not know what this means.

    Pain in my ribs seems to be getting worse, it is constant now. Normal?

    Thanks

    Alison

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