just been diagnosed as having copd and only 40

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Hi I have just been diagnosed as having copd i am only 40 and been told i am quite young to have this but my question is this i get chest pains sometimes very bad to the point that if feels as if some very heavy weights have been put on my chest is this normal as i do get upset when i have these thanks for reading

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  • Posted

    Yes it can happen especially if you try to over do things and get out of breath. You need to take long slow deep breaths to try and help yourself, but that's easier said than done.

    if it persists get it checked out with your doctor or respiratory team.

    • Posted

      Not as simple as "long slow deep breaths" if she has COPD, with this condition some coaching from a specialist physio about breathing techniques is essential to avoid exhausting yourself.   
    • Posted

      You are right Jude, long slow deep breaths are not simple or easy, but they are attainable. I am living proof of this.
  • Posted

    Hi Kimberly I'm 39 got diagosed with the same last year. My consultant has just refered me for lung transplant accesment with me being so bad. Hopefully I will be put on the active list on feb March time. If the second 4 day accesent goes ok. They also told me I was very young to have it. My mum and aunt have died from it but they was a lot older than me.
  • Posted

    Thank you for your replies and michelle i wish you all the best i have lost my nana and her 2 sisters died from this but they were also alot older i haven't gone into this as i am a bit scared to i have 9 year old son and some days its hard to play with him as i am really exhausted and to breathless and i feel so guilty where would be the best place to read up on this as my doctor is not much help
    • Posted

      I'm exactly the same Kimberly my youngest son is 10 years old. I can't be a proper mum to him. I've had to sit all 3 of my children down I got 3 kids 18,15.10. It was really telling them that I would need a transplant. We cried a lot of tears but as I told them this is my only hope to be a proper mum to them. The other problem I have the nearest transplant centre is 150 miles a way. So I would be able to see my kids much. There is another forum call health unlocked lung. I'm part of that forum as well there are some really kind people on there as well x
    • Posted

      I'm assuming most people on this forum are in the UK?  I"m in Australia and community health centres here run Lung Rehab Groups - not that we can rehabilitate from COPD, but we can learn heaps about how to manage the condition.

      Try and find one in your area, I can assure you it's well worth it

  • Posted

    Hi Kimberley, I to have COPD, I am 62 and had smoked till very recently. I too had chest pains and have been referred for a heart scan, I've recently been so poorly and so out of breath I couldn't leave the house. My GP was very concerned and gave me a course of Prednisilone, orally. Fantastic change in my breathing. It so happens my husband has COPD again a life long smoker, he is presently in hospital having steroids and antibiotics IV. X

     

  • Posted

    You should tell your GP about this. If nothing else, it could put your mind at rest.
  • Posted

    Hi Kimberley,

    If you are sure that your heart checks out alright, then it is quite normal to feel the symptoms you describe. Since I was born with bad lungs and am now 56, I have grown used to the sensation. One wonderful thing you can do for yourself is to practice breathing techniques as with yoga and meditation. When you exercise, count your breaths in and count out the exhale. Teach yourself to remain calm so that during your worst spells you will retain control, not the disease. Never cry during a spell because it makes it 10 times worse. Body massage helps relax tremendously, even informally when someone can rub your neck, shoulders, head and the long muscles down the back.

    If you have medication to take, do it faithfully. I sure hope the best for you and am sorry you have to suffer so.

    Dawn

    • Posted

      One of the things I learned in a Lung Rehab group (see my post above) was that the type of breathing I'd been doing for years in yoga and meditation is NOT appropriate for people with COPD because all that deep stuff just creates more exhaustion.   

      Go to the experts on this, it's too hard to describe in writing, but basically it's about NOT trying to fill your lungs to full capacity, breathing from the WAIST not the upper chest and focussing on breathing OUT fully rather than how much you breathe in

    • Posted

      Hi jude65855,

      One group teaches one way and another teaches another way. For every expert scientific study there are dozens more experts that say the opposite.

      After living for 56 years with diseased lungs from birth and having never known what it is like to breathe normally due to no fault of my own, I have seen trends come and go.

      The reason why I suggest breathing exercises to others is so they can learn about their lungs and become able to train themselves to keep a regulated breathing pattern during tough times so that they can avoid complete panic. It is one way to take control over the disease instead of it doing all of the controlling. Breath control is so powerful that it can make childbirth go easier without drugs or spirals.

      In those breathing exercises one must do what they can do just like any exercise program. I have not asked anyone to breathe deeper than they can and exhaust themselves. Everyone has a depth of breath that feels comfortable to them and there is nothing wrong with maintaining what good lung function is left. By doing breathing exercises the diaphragm is also being strengthened which must be so in order to breathe out, as completely out as possible which as you know is crucial.

      When I was young I wrote songs and sang at the piano and recorded them at a studio and now they are like a gift because I designed them to exercise my lungs so completely with long notes for exhale, that if I sing along with myself today, I literally breathe better! There are many forms of breathing exercises and keeping the lungs moving.

      For instance, when I take a walk I count my breath in with each step I take, usually to the count of 6, then I hold it for 6 counts and then I count to 12 on my exhale because I naturally have longer exhaling. Everyone else's numbers would of course be different. But it works! The more I train myself within my limitations the easier it becomes to exercise and stay calm and bring myself to calm during bad scary exacerbations.

      Exercise will never undo the lung disease, but it helps the body become accustomed to movement using less oxygen which also creates a sense of calm.

      Breathing exercises are totally beneficial.

      Jude, this is a forum of sharing, caring and supporting each other through one of the scariest sensations on earth; not being able to breathe normally. It is not a place to insult another as you have me.

      Look at my picture. Medically I should be blue and have had more than one specialist marvel that I am not blue or dead. I am not blue because I have fought, researched, had the very best pulmonary specialists the United States has to offer, I have experimented, I have been on every single medication science has to offer for my condition from 1958 till now. As a baby/toddler I was used as a guinea pig for clinical experiments that have developed the excellent lung function study machines that the world still uses to determine if disease is present and to what degree and I have lived about 65% of my life in hospitals as a patient, even recently, and I decided early that this disease would not get the best of me so help me God! And by God my efforts have paid off!

      Jude, I AM an expert in my own right. I would advise you to never ever take the advice of just one expert or group, and to remember the world is full of teachers who teach about something they have never experienced themselves and also, when it comes down to it, there are always exceptions to the rules.

      Sincerely,

      Dawn

    • Posted

      Oh for goodness sake, how is putting an different point of view disagreeing with yours insulting you?   I do hope this forum doesn't have a rule not to disagree with anyone else:  I assumed it was to pass on information, support and our own experiences.   

       I was merely passing on the information I was given by physiotherapists who specialise in COPD, which was that trying to fill the tops of the lungs is tiring and pointless and that emphysema patients would be better to breathe with the diaphragm because there are actually muscles there which can be strengthened, unlike the top of the chest.

       

  • Posted

    Hi Kimberley I am sorry you have been diagnosed with copd and you are having breathing problems.  I agree with the advice given but will add something else.

    You are young to be diagnosed with copd and you need to tell your doctor to check you for Alpha 1.  This is a rare genetic disease and as only 3% of copders have it you probably don't.  But it should be standard to be tested for this because you are young for this diagnosis.   It is only a simple blood test.  Tell your doctor you should have this test. 

    You can also get this done online free but not sure of the site but have a google. x 

  • Posted

    Oh forgot to say a very good site for information is the British Lung Foundation which is mainly British but there are a few members from around the world.  If you are in the UK you can also ring them up for information and they will send you loads of bumph. They also have nurses and benefit experts on call if you have questions.  I am on this site,  x

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