Bronchiectasis and fatigue

[Gamum]

Hi

I’m was diagnosed a year ago. I’m under a great team at Papworth. Is it normal to suddenly feel completely exhausted, and ache all over with an onset of an infection. Came on yesterday hit me like a train. took to my bed and felt a lot better today , even managed a run. I have started my rescue pack and sent off a sample. I have noticed that last week my nose has been very productive, what I’m wondering is, was that the first sign of an infection ? And should I have started my antibiotics then ? Thanks for all your advise

[Hidden]

Sounds like an infection may be brewing. I start my antibiotics when the sputum turns green. I usually get the tiredness when my oxygen level is low. If you have an infection it is probably better to rest up for a few days.

[Dellboy1]

I'm 68 got Bronchiectasis when I was 2 years old so I've had it all my life chest clinics every six months as a child now it's sometimes 12 months got pseudomonas in lungs about 10 years ago but I do feel exhausted at times but what I'm trying to say life go's on you have to make the most of it. You just get to know when to take your SOS packs of antibiotics i personal know by taste.

[WheezyAnne in reply to Dellboy1]

I was interested in your comment about taste, could you explain a bit more please? I seem to always have a funny taste in my mouth, puts me off eating.

[Hidden in reply to WheezyAnne]

Hi wheezyAnne, it sounds as though you have a bug in your lungs which needs the right antibiotic. Unfortunately many of us bronchs tend to ‘just get on with it’ and walk around with a modicum of infection, only doing something about it when it lays us low.

There are several of us who have been living with this all of our lives and we are almost better than the labs at knowing what is in there. Funnily enough, the dear friend pseudomonus which many of us live with is nowhere near as bad in taste as Haemphyllus influenzae or strep which, although easier to treat taste absolutely vile when they decide to have an opportunistic party.

I would suggest getting some sputum tested and doubling your efforts to clear your lungs. I hope that helped.

[Hidden]

Hi gamum. Yes bronchiectasis is very tiring but as Dellvoy1 says, life goes on. We learn to recognise a brewing exacerbation, take the abs, double the chest clearing efforts, be kind to ourselves for a couple of days and carry on. It sounds to me that you have some kind of virus, hence the productive nose. As you feel better today, it may pass off without having to take your abs. You have done right in getting the sputum tested but at this stage it may come back negative. Far more important to keep an eye on it. If it goes a different colour, thicker, more of it, nasty taste. If you have a fever and feel horrible this can be the virus but the other signs together with it are an indication to start the abs. Knowledge comes with time and your growing experience of your own condition. Hope you feel better soon.

[Tinker26]

I have the haemophilus bug at the moment and like you was floored overnight with body aches and vile taste in sputum,make sure you get it sorted as I am now on my 3rd lot of antibiotics .We all seem to know when we’re coming down with something.Good luck

[Outspan]

Hi Gamum, just popping into show my support. Posters above have pretty much said it all.... take care of yourself, get rest and then 'carry on'. I'm another lifer of bronch, I wasn't diagnosed until my 20's but looking back at history it seems it's been likely progressive since I got whooping cough as an infant. I find at times even when I don't have a chest infection I can feel pretty floored.... but you do right to start the SOS pack and get a sputum pot in.

Take Care

xx

[Suesal46]

The way I know I need to start on my rescue pack is if I too feel all those aches and pain and am totally worn out plus my phlegm is a green colour and dirty and tastes awfull can’t seem to get it right sometimes but glad you have sent a sample off to good luck get well soon xxxx

[JayKew]

Im recently feeling the effects . I recently started feeling the "fatigue and tiredness " effects and sometimes return to bed minutes after I get up, just so worn out. I just feel so tired at that time of a morning. Its a struggle to stay awake after dinner and its starting to control my life way too much.I like to go to my local 4/5 nights a week for one maybe two pints but more to see friends after being alone all day but Im normally fast asleep ! Or more just lying on the bed exhausted. I dont seem to have added on infections as my phlegm is always pure white. I just have to ride it out. Two weeks ago I couldnt as I was so breathless I went the docs and he ordered an ambulance to hospital as my breathlessnes was very concerning.After four hours waiting on a no show so my daughter drove me. Cue loads of test including the dreaded blood gases and the Consultant informed me I had no infections so no treatment was available and discharged me ! Sometimes its not worth the hassle.

John