Worsening breathlessness without infe... - British Lung Foun...

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Worsening breathlessness without infection?!

swimmer
swimmer

hi All

Is anyone else in this position and/or has discovered the cause? I have bronchiectasis but the breathlessness has gotten a lot worse over the past 3 months. I thought it might be the very hot weather, but now it's much cooler and I still feel the same. I do not appear to have an infection - no phlegm or coughing or fever or anything apart from the rubbish breathing.

Any and all advice very gratefully received, as always

Love to you all

swimmer

24 Replies
oldestnewest

Go to your doctor please. I'm not trying to diagnose your problem but here's my experience.

I have bronchiectasis, I had a similar situation, no sign of increased mucus, no obvious symptom of infection. I carried on not making a fuss. A routine lung function test showed a sudden loss of a whole litre of capacity. It transpired that I had bronchiolitis obliterans too.

Again I'm not suggesting you have the same problem but your symptoms do suggest something going on in your lungs.

Good luck xx

swimmer
swimmer in reply to wheezyof

Apologies for the delay but poor health is to blame... Thanks for your help though. I have been to see my GP and he listened to my chest and said he could hear nothing untoward and therefore had no reason to prescribe anything or refer me to anyone. Not sure what to do next (apart from cry into my pillow in frustration....)

Hidden
Hidden

I agree with wheezyof. It could be so many things. For two years I was getting more and more breathless and my doc and consultant were both insisting that I was not handling my bronch properly after 60 years! Eventually my daughter told me to insist that the GP test my heart. I had developed AF and dilated cardiomyopathy! Now nicely controlled with drugs. So you see, any breathlessness that your instinct tells you is not due to your bronch needs to be investigated and sadly in today’s world you will have to insist that it is. Good luck.

swimmer
swimmer in reply to Hidden

Hi, sorry for the tardy delay in responding. My heart was checked about 2 years ago - Echo-cardiogram with no abnormalities and, more recently - September 2017, Electrocardiogram with the same result. I am concerned that I am being a worrywart about the breathlessness and don't want to waste nhs funds/time, but I do feel worse. Maybe it's just the disease progressing and, therefore, to be expected....?

Hidden
Hidden in reply to swimmer

It is never a waste of NHS resources to get something checked out that you know isn’t right. I ‘m glad that your heart may have been ruled out but you really do need to get to the bottom of it so that you can get the proper treatment and be more comfortable. Go back to your doc and insist that he starts looking properly and if you think that it is your lungs insist on a referral. Do let us know how you get on.

swimmer
swimmer in reply to Hidden

Thanks again littlepom

I will try my gp again. He has just recently prescribed Raloxifen for severe osteoporosis and wants to see me to find our if I cope with this new drug. So I will bring the breathing issue up with him again then.

Best wishes

swimmer

Hidden
Hidden in reply to swimmer

Take the name of the bronch specialist with you. If he says that the appointment is only about the Raloxifen leave it with him and tell him that you will call to make sure that the referral has been made. We do have to be assertive. It is our health not theirs and if you do have bronch it needs management sooner than later to prevent further damage to your lungs. Good luck

Hidden
Hidden in reply to Hidden

Sorry I had just responded to someone who thinks that they may have bronchiectasis and confused you with them. The advice from everyone still stands, be assertive and insist on further investigations.

Agree with your friends swimmer. There could be a number of reasons, so you need clarification. Mine has worsened lately but put down to my asthma or it could be due to aspiraton of e coli from SIBO. Difficult to control as I am a weirdo whose body doesn’t want to tolerate a miriad of drugs. Hopefully yours will be more compliant when you get to the bottom of the problem.

Good luck and please let us know how you get on.

Cx

wheezyof
wheezyof in reply to cofdrop-UK

HI cofdrop,

My body hates some drugs too. Steroids leached my bones and ruined my stomach and my immune system. Carbocistine (not sure of spelling) caused projectile vomiting.

I don't take oral steroids at all now, not even in my rescue pack and have to shift the mucus without drugs to loosen it.

I have not taken penicillin for years as I reacted badly as a child. The only over the counter painkiller that does not cause a dry mouth and nausea is ibuprofen.

I don't think we are weirdos. I believe we are normal and everyone else is odd! xxxx

cofdrop-UK
cofdrop-UK in reply to wheezyof

Agree weezyof ‘Thee and me are alreet - not sure about thee tho’!😉

Just wondered if you have tried or had any success with saline, be that isotonic or hypertonic to help you get up the gunk.

Cxx

swimmer
swimmer in reply to cofdrop-UK

Hi cofdrop-uk

Thanks for that info. I guess I will just have to wait till something more serious happens - as it did last September (copious amounts of blood pouring out of my mouth whilst driving on the dual carriageway)....

These comments are very helpful to me as well. I have bronchiectasis which doesn’t seem to be causing problems currently, but I also have obliterative bronchiolitis, atrial fibrillation and pulmonary hypertension. My PFT were better last time I had them in the spring, but breathlessness is worse. My respiratory doctor says it is my heart, cardiologist says my lungs. When I see them in the autumn I am hoping to get a more definite decision. It probably is both, what is to be expected I ask myself, nobody will talk about the next stage.

swimmer
swimmer in reply to Carnival567

Thanks for your comments. I think I also will have to wait till an emergency or a more significant exacerbation of the disease before the nhs will help....

I agree with our friends - check it out. I had similar problem and am now on Frusemide as well as everything else. Having a battery of heart tests. I am not saying this is you, just that something is causing your symptoms.

swimmer
swimmer in reply to Rayswife

My gp and my consultant have not suggested any more investigations at present. So I will just have to put up with things - something I have had to do for years for other health problems. It gets very depressing though....

I have always been like this and no one listened i then actually got to see a specialist who redone my breathing tests in the hospital i was also given a nebuliser and my numbers rose well now they say have ACOS ASTHMA has well has COPD great !!!I still am dubious though x

swimmer
swimmer in reply to shadow4me

Hi. Thanks for your comments. Maybe paying to see a private consultant would be the way forward. I could get rid of my car and then might be able to afford their fees.

Hi swimmer that's spooky it could be me who wrote that same bronchiectasis thought it was the hot weather but still very breathless will be interesting to read your post

Take care

swimmer
swimmer in reply to Dilly2

Hi Dilly2

I guess it could be the stifling weather contributing - perhaps hot air has less oxygen in it. We can blame some of our politicians for that eh...? :)

Will post any solutions here if and when I find some.

Best regards

swimmer

I have been troubled more than usual lately by shortness of breath. I mostly notice it when I have got dinner ready, nothing complicated, even something very simple, by the time I sit down to eat I feel too wacked out to eat it. Yet I can walk down the road and back up a short rise home without stopping for breath. Feel tired out for a while when I get back but I can understand that. Doing less around the house lately too.

swimmer
swimmer in reply to Lyd12

Hi Lyd12

I quite often find that having my arms at, or above, waist height can negatively affect my ability to breathe - e.g. filling the kettle, first thing, to make a cuppa. I think it has something to do with the fact that you are restricting your lung space by lifting your arms at this height... not sure but it sounds logical.

Hope you find a solution.

Best, swimmer

Makes sense, Swimmer. I do find pegging the washing out very tiring, and as for tryng to dust in high places...is hard not to get too discouraged when you remember what you used to be able to do. Just have to remember there are people worse off,. Iris x

Thank you for your reply hope you feel better soon

Hopefully we will get an answer or feel better soon I find it so tiring I expect you do as we have the same problems

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