I'm having to post this question again as I can't find the original on this forum so here I go again: I'm end stage COPD and I'm having a really bad evening attacks of breathlessness and was wondering if any of my fellow sufferer's have the same problem, it effect's are bad tightness in my lungs and diaphragm and is quite distressing, for information I'm on prescribed Oramorph.
The reason that I'm interested is just to find out whether I'm on my own fighting this one or is this par for the course, thanks for listening, stay safe Ed xx 😅
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I have experience without oramorph for pain management for Lupus,RA etc. I haven't suffered breathlessness when using it for pain but do suffer terrible itching and have to take antihistamines. Not surely if this helps any but thought I would let you know. Wishing you better health. x
Thanks for your reply I was given the Oramorph to a while ago now it does help to alleviate the tightness and opens the alveoli up. Haven't suffered bad itching sounds like a very uncomfortable side effect I hope the antihistamine tablets give you relief. Thanks again, stay safe and well, Ed xxx😃.
Hi Ed I find most evenings are quite uncomfortable. I have problems with my diaphragm spasming and my breathing is often worse towards bedtime. I have taken to getting myself into bed in stages such as getting undressed then sitting down for a while, then cleaning my teeth and sitting down etc. I find this helps no end rather than doing everything in one go. I do wonder if it’s because by the end of the day we’re tired. I don’t think you’re alone in feeling like this. I hope this helps a little. Barbs x
That sounds very close to how I feel, once the evening arrives I'm away it's like someone holding onto my lungs and diaphragm and twisting them for good measure which makes for a really unpleasant evening and I've started to dread the end of the day. The Oramorph I have available does help alleviate the problem but can lead to a thick head, but at least I can breath a bit better. Getting ready for bed gradually sounds like a good strategy I'll give it a try and see how it goes.
It's a comfort to know that I'm not the only one among us that suffers with this problem and will help me to know I'm not alone in dealing with this.
Thanks a lot for your thoughts Barbs, stay safe and keep well xxx 😃.
Your very welcome, in a sense it was good to read your post as now I know I’m not alone. I have definitely found getting ready to go to bed in stages has helped. My doctor did ask if I wanted some Oramorph but I declined as I react to so many medications I try to avoid new ones. If I’m really struggling I take 2 co-codamol which my oxygen nurse says relaxes my lungs. I try not to take them too often though. Take care Barbs x
It's good to know that we both now know that we have gained comfort from sharing our troubles. I'm sorry to hear that you react badly to new medications, that makes it difficult for you having to make decisions against something that may help ease possible symptoms suffered that can make life hard.
I'm glad that you have something that helps with this particular problem as it is'nt a pleasant one to bear. Thanks again keep safe Ed xxx 😃.
Hi Ed I think it’s important to find the thing that works for each of us. I had a really bad evening yesterday and was so pleased when I managed to get into bed. Thankfully I’m back to my usual self this morning. Take care Barbs x
Sorry for delay in replying to you had busy family bits to deal with. Ido agree that finding our own ways of working through symptoms is important but being able to discuss and find out that others are suffering with same problems has also been important for me.
I'm sorry to hear that you had a bad day the other day and I do hope that you have had better days since then. Many thanks for your thoughts during our discussions around this subject they have been helpful. Stay safe and well, love Ed xxx 😌.
Hi I have the same thing, mine starts to get bad around 4 pm every day, it comes on very quick, and my heart rate goes way up. The only thing that helps is prednisone I take 5mg and it takes about 3-4 hours to kick in.
at least I can sleep reasonably well, then in the morning around 6am I take
10 mg for the day. They say pred. Is not good for you but it sure helps.
My problems start around 6pm and can include some mild heart palpitations but I find that the Oramorph helps with all the nasty symptoms which I'm glad for.
I normally sleep okay as I also take diazepam before I go to sleep which allows me to sleep until around 8am which is when I take my morning medication.
I can't say that I've heard of your remedy for relief from this problem but it's definitely on to bear in mind.
One thing I'm learning since posting my problem is that I'm not alone in my suffering with the tight breathing problems. Thanks very much for your response cheers to you Roy, stay safe Ed in U.K
Tiredness does play a big part in my becoming more breathless as evening approaches plus we eat around 6 pm after which I get more uncomfortable. I also recommend getting ready for bed in easy stages. With Emphysema/COPD I have 23% projected lung. Every day can be different but breathlessness at some pint becomes the main focus. Take Care.
Sorry for the delay in my reply been busy with family stuff. I to find that tiredness plays its part during the developments through the evening I have had to change my eating habits now and eat around 1-1.30pm which gives me time to digest a bit more before the evening onslaught. I have also changed the getting ready for bed to doing things a bit at a time, that has helped. My lung function is low to and I have to agree that each day brings a different challenge which means having to adapt to each change, which makes life hard to. Thanks for your reply to my post, Take care too and keep well, regards Ed.
I too suffer from breathlessness but it is all day and I have been given Phyllocontin but it doesn't seem to help. I have been told that my left diaphragm is not working as a result of a CT scan. I don't know how much longer I can go on like this as the only relief I get is when I sit down and do nothing and that is not a life. I am hoping that when I next speak to the consultant he can recommend something else. I too have to do everything in stages and getting ready for bed is difficult and getting up and ready for that matter. I was hoping that someone else might be suffering with this particular problem so that I don't feel so alone.
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