Why am I so breathless all the time and for so long?

Can someone help me, please. I have been breathless since July, 2015. Things got bad at Christmas and I was admitted to hospital for 6 days with suspected heart failure. My blood pressure was very high and I had badly swollen ankles, legs, hands and tummy. However, the cardiologist said my heart was not too bad for my age of 74 years, maybe I should lose some weight. Since then, I have been diagnosed with sleep apnea and atrial fibrillation, but whilst waiting for the CPAP machine, my doctor has put me on night oxygen as I was unable to sleep soundly, as I kept waking up with panic feelings. He suspected I was low on oxygen at night. My question is, as I am breathless, all the time, even talking on the phone makes me breathless, have I a lung disease? I am waiting for pulmonary testing, as the hospital doctor looking after me left and my file got forgotten. The breathlessness is incessant, drains me of energy and leaves me very depressed. I can't climb stairs no longer or walk unaided more than a few steps as the breathlessness is horrendous. Any help would be so appreciated. Thank you.

29 Replies

  • I have recommended this puffer to many people who have difficulty breathing, it did help me so much I couldnt push a grocery cart or walk to the bathroom, even had to have help getting off the potty no energy to lift up myself. You can ask for BREO you use it once again along with your regular puffers if your doctor agrees. I hope it helps you and gives you some relief. Its so hard when your dr leaves and you start to feel like a ping pong ball til you find the right fit again. Goodluck

  • Hi bandit2. I shall follow up on your advice. The puffer sounds a helpful tool to have. I find the most difficult task to do is washing and dressing myself. My husband helps me, but I still get very breathless. Some days, I just stay in my night clothes, as I feel too bad to do anything. If I go out, I spend half of the time out, recovering from the ordeal of getting myself dressed. It takes another day to recover from going out the day before. It's no quality of life. Quite funny in a way and I have to laugh at myself, which I do most days otherwise I would be in floods of tears,lol. I will make enquiries about the puffer. Many thanks.

  • I hope it helps you as it did for me, I was shocked how once a day helped me. I didnt give a hoot what I looked like when I went out, I wore garfield paw printed pants (also used for jammies) and my garfield top or depending on weather when it was cold I wore my bunny top and bottom. I had no energy to pull on tight anything top or bottom, even a bra was sometimes optional lol. I was using my cane everywhere, handicap parking and in the store I would use the scooters they supply because just walking from the car to the store entrance I was exhausted.

    I noticed a difference in my able to breathe almost right away but it took me over a month to be able to get myself off the potty or out of the bathtub, that was the hardest thing for me to do. Let me know how it works for you please. I hope its available where you live Spiriva is another but not as good.

  • Hello Caprice.

    I am sorry to hear about your breathlessness. I don't have answers as to what is going on but you're getting it checked out hopefully soon. It must be very frustrating and a little scary to be in your position.

    I sincerely hope something can be done to help you very soon.

    All my very best wishes,

    Cas xx

  • Thank you, Caspiana, for your support.x

  • Hi Caprice, I am sorry that you are having such a rotten time. I now that when you are breathless it is very difficult tobe proactive but do suggest that you chivvy them along. Go to your GP and let them see how bad your sob has become. Get them to chase up the pulmonary tests and to make an appointment with a chest consultant. AF and sleep apnoeia can make you breathless and can lead to other things. So your Gp should looking for answers. Good luck, I hope that you get some answers and some help.

  • Hi SS63. Thank you for your inspiring response. My doctor has seen me at my worse, in surgery, though I found that being on diuretics has helped enormously. If the fluid retention increases I find my breathlessness is worse. I take biosopol, a high dose, to control the atrial fibrillation and blood pressure. I can't take ACE inhibitors for the heart as it stops me peeing. I take another heart tablet, instead. So everything seems to point to the heart being in trouble, though one senior cardiologist has a different view, saying my heart is in not too bad a condition for my age. I, personally, think he is wrong. Instead, he appeared rather overworked. It could be that the sleep apnea, which I now recognise I might have had for years, has had a bad effect on my health. All so confusing. Could be this, could be that. I just wish I could have an answer. I have a headache thinking about it.lol.

  • I'm no expert, but do know that some heart conditions or being overweight can cause breathlessness, so you may not have lung disease.

  • Along with other things so can a b12 deficiency. So many possibilities until you get a true diagnosis.

  • Under active thyroid & anaemia to name but 2. X

  • Hi scorpiolass. Thank you for your reply. I have an underactive thyroid for which I take medication and though my blood tests say I have adequate thyroxine, today, I was so fed up with feeling short of air, I took an extra small dose. I'm suspicious that my hypothyroidism has something to do with my condition, but doctors say no, I did see a private endo, who wanted to put me on Armour, but I have not been back as I can't afford to see him at the moment. I shall start taking my vitamin supplements again, though tbh I didn't feel any difference when taking them.

  • Hi lynnekay. It would be nice, yet a little depressing, if it were my weight, as explained on another post, my condition makes it difficult to lose weight, though I could try a 1000 calories a day diet, that might work. I'm sooo confused. Some days I think, oh yes it must be my heart I have AF today, other days it's a lung disease, my lungs are aching and when I'm feeling somewhat better days, oh it's my weight, too fat, I need to lose weight. I can't afford to go private, or I would. Am I strange to want to have an answer even though I know there is no cure?

  • I don't think you're strange at all, because there is some comfort in firstly, knowing what is wrong with you and secondly having the correct treatment.

    I would have thought that the various doctors you see would be able to give you a definite diagnosis. It sounds as though you're going round in circles

    However I am thinking of you and hope you feel better soon

  • Good Morning - I care for my husband who has severe COPD and some of the symptoms you describe sound similar to his but I am not a medic. Perhaps you could ring the BLF helpline - I have copied some info below.

    What questions can we answer?

    You can talk to us about anything - from how to manage your condition, to going on holiday. Or just to say hello.

    Here are some of the things we've spoken to people about recently:

    How to manage your condition

    Information about specific conditions

    Options about medication and treatments

    What diet or exercise might be appropriate

    Helping people to understand and accept their diagnosis

    Learning how to manage flare –ups

    How to arrange oxygen for holidays abroad

    Welfare benefits that can be claimed.

    Call us on 03000 030 555.

    Good luck, lots of love TAD xxx

  • Thank you, TADAW for your supportive comments. So sorry to read of your husbands condition. Must be so uncomfortable for him. Poor thing. My sympathy goes out to him. On occasion, I do have a constant dry cough with the breathlessness, but not wet with mucous, so I'm not sure if I have COPD. I'm so tired and confused of trying to diagnose my own condition. I turned to you all, in desperation and have been comforted by the quick response and very helpful advice, I am grateful and will be staying on the site and will let you know what transpires.

  • Hi, I'm sorry you're suffering. As Tad above suggests it would be a good idea to call the BLF experts. They are very knowledgable indeed (whereas we are patients or carers).

    Are you very overweight? As you probably know this can cause high blood pressure which in turn can cause breathlessness.

    It's great that you've been told your heart isn't too bad and that you're seeing a lung specialist - hope that's soon. I'm surprised they haven't given you a spirometry test (tests your lung function) at your GP practice.

    Many of us use pursed lip breathing for breathlessness , you will find demonstrations on YouTube , it's excellent for getting more oxygen in thereby helping your heart. Practice makes perfect: breath in through the nose slowly and as deeply as you can, then purse your lips and breath out as slowly as possible through your pursed lips. Also helps to alleviate panic.

    You might invest in an oximeter , £20 approximately via Amazon, you'd be able to see for yourself if your sats are low and do some deep diaphragm breathing to get them up.

    Also you could begin some gentle exercise from the chair. Little and often.

    Good luck. Peege

  • Small addition to Peege's excellent reply - if you buy a pulse oximeter, check it against the one your doctor or respiratory nurse will have. They can be up to 3% out but the ones medics have will be calibrated regularly so they are accurate. As long as you know if yours is a little out, you can adjust the figure you get.

    They really are very useful.

  • Thanks O2. Forgot that.

    I could also mention that mine's a Biosync, it reads pulse as well as oxygen saturation. It's sensitive enough to use on babies (or so the blurb says). P

  • I think they usually do show the pulse Peege. You'd think babies' fingers would get lost inside - i think they use a different bit, not the finger, for babies. Someone told me that but i don't remember where. Maybe the big toe?

  • Hi Peege. Thank you for your helpful reply. I really appreciate your advice. Yes, I'm overweight, which has piled on over the last 2 years as I developed a rare neurological condition that leaves me unable to walk, unaided and then with two sticks or a rollator just a very short distance. I use a mobility scooter when I leave the house. I have tried gentle exercise but, unfortunately, this leaves me in extreme pain for weeks. My neurological advised me not to exercise as he said my muscles are wasted. It is the non movement which leaves me overweight as I don't eat a lot and when I do, it is a healthy diet. What with my underactive thyroid I don't have a lot of hope of staying slim. I am a positive person though and keep smiling 😊. I will try the breathing technique you advise, though tbh I have been pursuing my lips, without intention, for the last few months, as I found this more comfortable. I have an oximeter. This is helpful, though sometimes has registered as low as 83. My average is 89/90. I did blow through a tube thing at the doctors, which result I was not told, but the doctor responded by ordering me night oxygen. I'm still waiting for the pulmonary testing appointment from the hospital. My thanks, once again, for the helpful information.

  • This must be horrid for you. Am so sorry. As others have said, it could be caused by a number of things but you need help! Do get in touch with your doctor - and look after yourself. Sue x

  • Thank you Sue.x

  • Hi Caprice,

    I know excatly how you feel - it is very frightening & depressing. Continual mixed messages from everyone medical. You will find lots of support & friendship on this site - I only joined recently but have found a lot of help & suppot.

    The 'breathing' on you tube does help the panic attacks a lot - I have a resp professional coming to see me today so will ask a few extra questions and get back to you.

    Also, insist that your doctor comes to see you at home. Let them see how bad you are and that walking (or trying too!) from room to room is not easy.

    Spirometry should be done immediately - you do have to push them.

    Good luck, we are all here for you.

    Jean x

  • Hi Jean. Thanks for your response and helpful tips. I am just so confused. My own doctor says I have heart failure, though she has reordered the pulmonary testing. The hospital ward cardiologist said my heart was okay for my age, another out patient cardiologist said he thought I had a heart problem and, yes, he discovered I had atrial fibrillation when I wore a 72 hour monitor, though I only wore it for a day as I had a severe plaster allergy. He also ordered the pulmonary testing, which went astray. Another doctor has referred me back to my neurologist, saying the breathing problem might be neurological. In the meantime, I am left with breathlessness, no energy and disorientation. I think you are right about the spirometry, as I still haven't heard anything, despite phoning the hospital and my doctor two weeks ago. I've been waiting since Christmas!! I'll keep persevering and let you know what transpires.

  • Hi caprice sorry you are having so much trouble getting a dx for your breathlessness. My husband had heart failure after having a heart attack and his breathing was worse than mine at times hope you get something sorted out soon x

  • Hi Caprice, it sounds like your breathing problem is quite complex. Your GP certainly should check that your blood pressure, pulse rate (on the 24 hour monitor) and fluid balance are now OK – and arrange a chest X-ray if one hasn't already been done. Also you should if possible avoid beta blocker treatment (e.g. bisoprolol, atenolol) which can make breathlessness much worse.

    It's important to understand that there are basically 2 kinds of breathlessness:

    1) your oxygen level is low

    2) it isn't

    Your oxygen level can easily be checked with a "sat." (= blood oxygen saturation) meter. If yours is low (less than 90% on repeated testing) it means that there is something seriously wrong: lung disease, heart failure or not breathing enough, and you need urgent medical help.

    The great majority of breathless people have a normal (more than 90%) oxygen saturation – if yours is normal, then:

    1) you don't have to panic because it's probably not a major heart or lung problem

    2) you are actually breathing too much, probably because your breathing regulation was disturbed when you were ill last year and hasn't got back to working properly. In this situation you may be able to help considerably by consciously controlling your breathing. If you send me your email address I can send you a leaflet about how to do this.

  • Hi Jonathan, could you send a leaflet to me too please? We got the same problem, sats more than 90, heart has just been checked ( holter monitoring and echocardiogram) said fine.But pulse is high on oxymeter (85-92) most of the time.

  • Hi Mendy, no problem. If you coud send me a private message with your email (best not to post it publicly) I shall send it to you.

    A pulse rate of 85-92 is in the normal range for when you're awake.

  • Hello Caprice,

    I have had sleep apnoea for some years and have a CPAP machine. I find that the mask type is the worst bit to get sorted. For many years I could hardly get any sleep due to ill fitting masks. The one I have found to be the best by far is the Amara View Minimum Contact Mask by Resimed. This one is comfortable and lets you sleep!!

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