Bronchectasis no fun at all😣 - British Lung Foun...

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Bronchectasis no fun at all😣

Carkaisabellacolin
Carkaisabellacolin

Hi everyone i wanted to ask. Has anyone else had good cultures but still feeling unwell and tight chested with sore sides.

I know our condition means constsnt discomfort but i half wished to have some thing in the culture to explain the uncomfortable feeling followed by tiredness.

Having bronchectasis is really no fun😣

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With bronch lab tests come back clear so many times when tjere is obvioysly something in there causing the problem. I know that you have had the equivalent drug to cipro before and do think that you need to see your bronch consultant.

Thank you

I will contact him.

I just feel that because the results show nothing its like my symptoms are strange to him. But i do feel rough .

I know he told me bronchectasis is a condition constantly throwing challenges . But my condition has really deteriorated. I never had constant side pain and heavyness in my chest.

My oxygen is usually perfect but i still feel its hard to breath at times.

Maybe its my asthma on top of it all .

So confusing

I'm sorry but I don't think that this consultant knows much about bronch. If you are feeling bad it is because there is a germ in there which is not being hit with the right antibiotic. Too many consultants only know about copd and treat the bronch the same. It is very different. Because you aren't in the UK I can't help you source the right treatment. Whilst you are trying to do this remember to keep getting the mucus out of your lungs. What usn't in there can't breed. I'm sorry that I can't be of more help.

Thank it helps to speak to others every now and then as it is reassuring.

😊

Yes! In the past, I have been on so much medication and still felt tired and breathless. I have bronchiectasis and asthma.

I joined this forum about 6 yrs ago and have learned a lot. And gotten a lot of tips.

The tightness in your chest could be due to asthma, I finally talked to my specialist about the tightness and he started me on an inhaler. Big improvement. (I also use a nebulizer and a percussion vest).

Tips that I have gotten from this forum:

If the meds aren't working, talk to your specialist.

Destress your life. I had a stressful job (I loved my job and would put my job before my health). After I retired my health improved.

Try alternatives to prescribed meds. Certain vitamins and minerals help with inflammation. I take Turmeric w/pepper twice each day for it's anti-inflammatory properties.

Environment. Check your house/apartment for mold and other allergy causing items. I have an air purifier in my bedroom. We also moved to an area of the country that fortunately has better air quality.

Even small changes can make a difference. Example: I bought new bed pillows. After about a week, I started coughing a lot at night. It dawned on me that I had bought pillows filled with goose down. I then replaced them with hypo-allegnic ones and night time coughing stopped.

It may take awhile to find out what is causing your chest tightness, but don't give up, Beth

Thank you

Feeling unwell, tighted chested, sore sides, tiredness could indicate a chest infection or just coming down with some bug /cold/virus even if culture is coming back ok.

On the other hand sore side can indicate lung inflammation or from coughing up a lot the latter would also make you feel very tired.

Hope you are feeling better soon. Take good care.

I think its inflammation but stupid question inflammation does not always mean infection does it?

Inflammation happens when a physical factor triggers an immune reaction. Inflammation does not necessarily mean that there is an infection, but an infection can cause inflammation. medicalnewstoday.com/articl....

But you still need to treat the inflammation - did you try an anti histamine yet to see if that helps?

Anti-inflammatory effects of antihistamines

Although histamine is only one of many effectors of the allergic reaction, it is noteworthy that the H1 antihistamines are highly efficacious in the management of the symptoms o.... onlinelibrary.wiley.com/doi....

Hope things improve for you soon.

Thank you so much

Not always infection.but yes it tends to go with and after infection too.im at the stage where im always in pain and exhausted.but, got to keep on going xx

Thanks

I know we cant give up but the constant pain can really get you down sometimes.

X x

Yes.It does.its VERY hard -ive learnt to accept that taking painkillers is as necessary as all the other medications.i hope u have a better day tomoz x

Thank you

Yes i have started to take a painkiller to relieve pain. To get through the day.

Its tough on my teaching now .

But i will try and be more positive 😊

How are your sinuses? Over a year ago I felt that I was having a Bronch exacerbation, but couldn’t give a good sputum sample. Finally made it to the pulmonologist and found that I had a sinus infection. The sinus mucus was traveling to my lungs and making me cough more than normal. A round of antibiotics did the trick. I tend to blame every ailment on my lungs. Hope you can find the cause of your feeling unwell.

My sinuses are fine i dont think its that.

Thank you for your suggestions

After many years of off-and-on issues, I discovered that sinus problems are a not-uncommon concomitant of Bronchiectasis, so it's still worthwhile making sure that they are kept clean and clear. I've been using the Neil-Med system which someone recommended on here, a while back. Inexpensive to buy, simple to use, and it does seem to be helping me quite a bit. 🤞

Trouble is that Bronchiectasis seems to cover such a wide range of what would appear to be completely unrelated physical effects, which can make it very difficult to figure out exactly what is going on. Good luck!

I would go back and explain this to your gp, the treatment you have received hasnt worked. Bronch sometimes needs investigating and our gp's just dont know enough about it, ask to be referred to a specialist. I suffer with sinus problems and was referred to ent and they helped alot more than anybody else but still waiting for the op x

Frequently

It sounds like there's a bug in there. They don't always show on a first test, clever litlle blighters. I would think you need more testing. Good Luck, Alberta

Thank you

I will keep an eye on this and get tested again soon x x

Thank you

Having spent many years under a bronch specialist, I moved house and there are no specialist in my new area. My health has deteriorated and I am considering moving again. You know your body better than anyone and I certainly know when I have an infection brewing. My bronch specialist told me that sputum tests/blood tests are only indicators of infection, not a diagnostic so having a clear test does not necessarily mean you don't have an infection. Unfortunately my current hospital only treats on the basis of a positive test result, hence why I feel my health has deteriorated because it is very hit and miss as to whether you get a positive result. My specialist told me that any discolouration of the sputum should be treated as infection irrespective of the result. Having been under a specialist previously, I would agree with every other bronchiectasis sufferer on here. You really do need to be under a specialist. Whilst my current consultant who is a general respiratory consultant is doing his best, as are my GP's, I wouldn't have known any difference had I not had that specialist care previously. It is also good to have the services of a specialist respiratory nurse which is another service I don't have anymore. I also have brittle asthma and general nurses are not always taught the difference and I learnt an awful lot about my condition from a specialist nurse. Keep battling on and make a nuisance of yourself if you have to in order to be heard. My previous specialist told me that having bronchiectasis doesn't mean that you have to live constantly poorly if the condition is managed properly and any good specialist will give you a wealth of information to manage your condition effectively.

Thank you so much for sharing this with me. I live in Cyprus so going to a dr involves finding specialists.

I have to admit that they seem to look at me with a bemused face when all comes back negative. But i am still feeling discomfort and i know i am not ok.

They have now decided to put me on an anti inflammatory antibiotic usually given to younger patients syrup 10ml and day everyday. Because with my awful reactions to the previous tablets. We realised i can not take them due to side effects.

Thats why they are struggling to comtrol my inflammation and the condition is getting worse.

And so i feel a bit helpless and lost.

I was going to return to the UK to see a specialist in Birmingham but Covid has prevented that visit.

But i will try my best to work through it.

Thank you x

I hope yr medicine helps.yes do keep topped up on painkillers,its hard enough.xxx

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