Hello, everybody, and thank you for all the information I've gotten from this forum. Just last week I saw my pulmonologist and told her that I was feeling poorly. I mean, really poorly. She had diagnosed me with emphysema/asthma. She did a breathing test and said I was the same I was in February -- FEV1 of 70 percent, 02 sat 98. She said I was mild and should not be feeling as badly as I'm saying. I need to make this clear, and I don't know that I made it clear enough to her. I'm feeling horrible. Can't sleep, sit on the sofa all day and stare into space. The thought of even driving to a store is almost unimaginable. But she says my numbers don't conform to what I'm saying. So, here it is again, and I don't know how many times I've heard this before: It's all in your head, you suffer from extreme anxiety. I agree that I do have anxiety about my condition, but I know in my heart that most of my suffering is real and physical. What I'm asking is, does or has anyone else who had mild/moderate emphysema/asthma feel almost as if they are dying? I went to rehab today for the first time in a month and I felt that I would pass out while walking on the track. I just don't know what's going on. I'm starting to wonder if it's my heart, although I had a heart cath about a year and a half ago when first diagnosed. Bottom line is my quality of life is about zero. And my lung doc tells me I'm good and send me on my way. Am I just having a hard time accepting the reality of my disease? Does everybody feel sick all the time? Every minute of every day? Thank you all, and God bless anyone else who feels this way.
Adrift in a sea of confusion - Lung Conditions C...
Adrift in a sea of confusion
We're full of different experiences. I have felt scary miserable at times, and then on other weeks contentedly accepting of my discomfort, which is at times a humbling understanding of my limitations, things I took for granted a few years back. Consistency is important in my daily plans/routines. Above all is listening to hope and funny and good and peace in all forms. It is what it is, and it's just my time to not be superman anymore. If I can swallow that and nod when the bad hits for a while, then I share here. I sometimes feel like Scruffy's waste matter, and I log on (OMG) here to share and realize I ain't alone and others are doing the deal and we're all around this spinning globe waking and sleeping and connecting. And that connecting is a gift of our ills, cuz we never would have met the wonderful friends on this life giving site. Not a bad deal for a bunch of us not too young sick and scared folks.
Be well in all ways we can control.
xx
Hi, I know exactly what you mean, it's horrible having anxiety a lot of people just don't understand. I hope you get one of them to listen to you, and you start to feel better soon. Let us know how you are doing and take care of yourself. 😊 Bernadette xx
Hi, diagnosis can be a shock my best FEV1 is similar to yours. Your Doctor can only go on the subjective information given by your test results and if all physical causes of your symptoms have been ruled out then the psychological aspects must be considered. Having suffered from anxiety and depression for many years even before my diagnosis of emphysema I can relate in many ways to how you feel. From experience the mind can play a huge part in how you feel. Many people with chronic illness experience this. Personally I would advise you to accept that part of the problem may be psychological. It may not be all the cause of your symptoms but to improve your well being you should consider all aspects of your health. Nobody likes the idea of having psychological problems but admitting they could be part of a problem may be a beginning.
Hi challny. Try to keep yourself busy with anything that keeps your mind occupied. It is just amazing how breathing problems can melt away whilst you are engrossed mentally. I am puffing and panting all day at work, but rarely notice it, until I stop for a while to "answer natures call", lunchtimes, make a drink etc. There must be an ambition or hobby from your past that you did not have time for back then or to learn new things, but now you do have the time to do it.
2greys, I read your bio and am amazed that you still work. I don't think I could do that. But my COPD did not present itself until I was 64, and by that time I was retired after 38 years in the print news industry here in the U.S.
I was diagnosed just as I was about to start moving towards retiring. After finding that being active was essential to managing the condition decided against retiring. Obviously with being diagnosed at stage 3, I had been working with the condition for many years before that without even knowing, it was not a hard decision to continue.
I am not suggesting that you return to work, just an example of keeping your mind occupied, to stop thinking about your condition, all the time. There must be something that you would enjoy doing and be still capable of.
I've had emphysema for 12yrs. It seemed to worsen quite a lot 5yrs ago when my gp sent me for a heart scan. I was then diagnosed with cardiomyopathy (enlarged heart). I was put on medication and it's now stabilized. But I felt so I'll like you every day. Maybe ask if you could get your heart checked out? Also anxiety about your health can make you feel really bad. I hope you soon feel better x
May I suggest you try singing? It will help you control your breathing and encourages the release of natural feel-good hormones called endorphins. Even if there isn't a singing group near you that you could go to, you could try some of the singing exercises on You Tube to help you breathe from your diaphragm, and then put the radio on or your favourite tracks, and sing away at home. All the best.
My FEV1 is down around 20 last time I checked and my breathing gets rather desperate at times..., but the bottom line is that I keep asking myself "What's the alternative?" and the answer isn't all that encouraging and much more 'final' than what I'm dealing with now. So..., my basic optimism keeps arising so that keeps me on an even keel. I, too, have certain times when I just can't feature myself doing the simplest of tasks but I persevere mostly because to do otherwise would be a useless act.
I'm not the man I used to be but..., when I was that man, I wasn't the man I was years before that; everything for me is on a sliding scale and one that takes change into consideration. I once learned, "..the only constant is change.." and it's one of the truest phrases around; not good for much else but it IS true.
Buck up, me boy, and take a bit of what is all around you, enjoy the goodness in yourself, others and life.
Your symptoms seem more like anxiety/depression than the sort of symptoms you would expect from emphysema/asthma. From my own experience, symptoms of anxiety/depression are definitely not "all in the mind", and are very real and physical. I was unable to do anything yesterday, but feel a bit better today and will attempt something not too strenuous; it's important to do something, however little, but not to overdo it or feel guilty about not doing things - most things can wait! Try mindfulness or CPD, or even some mild over-the-counter sedatives. The problem is that most consultants are too specialised to take a whole-body approach to medicine, so they only deal with their specialism and send you on your way - they should really refer you to someone with expertise in other issues, but generally leave you to fend for yourself.
Hope you find something/someone to help.
Hi, Superzob. Funny, but yesterday was a complete bust for me, too, and already this morning I seem to feel a little better. Like you, I really try to accomplish SOMETHING each day. My PCP, whom I really like, thinks my anxiety is through the roof. And while I don't disagree, I find it hard to accept that that it causes such physical symptoms. He prescribed antidepressant, and I was more than willing to try them. But the side effects for me were terrible. Then he gave me Xanax, and I like them very much. Only problem is I know they are addictive and he not going to want to continue giving them to me. So, that's a new anxiety problem! No anxiety meds. Kind of laughable (not).
Looks like we can learn from each other on this. I, too, can't get on with antidepressants, but Xanax is an anxiolytic, so I might get on better with that rather than the propranolol I've been on for 40 years and is really inappropriate for my late-onset asthma. Thanks for the heads-up and hope it continues to work for you.
are you on any other kinds of medications........medications have side effects like blood pressure pills.... I feel tired all the time some one who dosn't have this dosn't understand how tired you can become.. I don't sleep well.... Plus depression of diagnose it all adds up........ If your not getting out vitD3 you need lack of sun light causes depression I live in a snow belt so many people I know have SAD... When I"m in cuba I feel great when I"m at home I don't.during the winter months..... I just found out I have high blood pressure went on med the headaces came and tireness got worse..... Look at every thing that is going on meds diet what your lacking in vit.... Plus most people are depress dealing with this... If I'm coughing my brain goes into over drive sending singnals out heart rate goes up then the anxiety comes.. . ..Hope you figure things out.......
Hi, Clamdigger, hope you're feeling well. Yes, I too deal with fatigue. I don't sleep well at all. These Xanax help me fall asleep, but they don't last long, so I'm usually awake by 3 or 4 a.m. and can't get back to sleep. I am on BP meds. Sometimes even on the meds my BP is high but other times it's good. I'm pretty sure that COPD inhalers can raise your BP. I doubt I have a vit. D deficiency because I live on the U.S. Gulf Coast where the sun is glaring much of the time, and I usually get outside at least some every day. The problem here is the extreme heat and humidity. But you must experience that in Cuba. Do you go there to vacation?
When I go to Cuba it is in Feb and I"m along the ocean either that I just drink more and don't notice....
I have had lung issues for as long as I remember but while I was able I did what I could when I could. However when you are given a diagnosis that sounds so grave it will make your anxiety levels go up. I have found mindfullness is a great help and their are plenty of things on the internet that can help with this.
I have also had GP and Consultant look at my AT REST sats and said I am not to bad at all? It took a lot of stubborness on my part to get them to look deeper. Once they realised that after waiting and then sttting with then for a bit my sats were not to bad, but once I did anything they dropped like a stone! I also have heart conditions and High PH diagnosed and confirmed. I am sorry to say that they are sometimes just taking the easy option? However now all is confirmed they are dealing with them in a good way.
I wish you well and hope you get into some PMA?
Be well
Hi challny .
I am going to put my hand up and say numbers do not always and cannot always reflect our condition totally. I was ecstatic when I found that my last spirometry test results were more or less the same as last year's. However, I know for certain, it is harder for me to breathe and I notice that I am not doing so well in certain tasks that I had not much problem with a year ago. I am lucky that my doctors take into consideration how I feel as well as the test scores. So, no it is not all in your head.
Sending warm wishes,
Cas xx 🎶
Oh, Caspiana, that's EXACTLY as it is with me. Numbers the same, condition not.
Caspiana, I just read your profile and saw that you are up for a transplant. I'm probably not near that (yet) but want to tell you a story that might encourage you. The only person I know who has a lung illness is a neighbor of mine. I don't know him that well, just a chat while we both walk our dogs. He used to walk his little dog while dragging his 02 tank behind him. Then one day, I saw him without it. I asked him what the deal was. He told me that he'd had a lung transplant and no longer needed 02 to walk his dog. He looked great and sounded good. He also told me that his pulmonologist here in our city had arranged the whole procedure for him. He loved her. It was at that moment that I decided to change over to her, and I did. Wishing all the best for you.
I so hope everything turns out great for you, Caspiana. I could probably use a brain transplant, but they could never find one small enough to match.
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