Hello fellow bronchiectasis sufferers

[Kissi]

Does anyone else have 'heavy lungs' I have no infection right now and yet feel like I have weights attached to my lungs! I also still have pain there too which I always thought was because of the infection, confused. Are these normal symptoms of this condition? Thanks in anticipation Kissi x

[mustcarryon]

Hi Kissi

I also have bronchiectasis, and often feel the same as you describe. I'm just as confused as you. Even if I haven't got an infection many things make me cough, so I sometimes think it may bethe strain of coughing. I suppose the BLF nurse would be the best one to ask.

That's the one thing that I can suggest. xxx

[Kissi in reply to mustcarryon]

Thats a good idea, thanks mustcarryon

[LesleyAnne]

Hi Kissi, yes just as you describe! It seems to be a common theme with us all I'm afraid. Even without infection there seems to be no respite. I find the breathlessness a real problem now. I have Costochondritis and have cracked the 3rd and 4th rib with the strength of my cough. Keep well.

L A xx

[Kissi in reply to LesleyAnne]

Oh dear LA, I know someone else with that and so have an idea of how painful it is. It's good to hear of others with the same symptoms as yourself, it doesn't ease the pain but at least I can rest assured that it's all part of the bronchiectasis thanks LA

[123podmore]

good morning i have emphysema and chronic bronchitis,i been to scan and doctor proscribe to me two deference of antibiotics ,i do feel much better, some time i have like cramps in my lung, avoid the cold air lovexx

[Kissi in reply to 123podmore]

Oh dear, poor you, I also get the cramps. And yes avoiding cold air is good advice many thanks. Kissi

[SusanneH]

Hi i have severe emphysema and chronic bronchitis ive been suffering with pain in my right side for months its like a heavy feeling like im dragging a brick around.When i asked the consultant about it he just said its scarring but my GP thinks its muscular pain caused by coughing.Its so frustrating because it stops me from functioning properly.It must be just something that we have to live with.Sorry to moan.

[socalgal in reply to SusanneH]

Don't be sorry......you're in the right place for moaning....a prayer was just launched for you this morning (California time). lovetheuks

[Kissi in reply to SusanneH]

Oh Susanne don't be sorry, you're entitled to have a moan, constant pain is no laughing matter! Keep you're chin up and thanks for responding. Kissi

[thatcham1939]

HI Kissi

i have bronchetaxis and i have felt my lungs are on the floor, i just have to wait for it to pass

jan

[Kissi in reply to thatcham1939]

Huh thatchum it truly is like that isn't it! Thanks for responding I feel less worried about it now. kissi

[Kissi]

Oh blimey Paddy, I've not been that bad! Take care :/

[Hidden in reply to Kissi]

Thank you but I be ok have very good doctor she give me good care good to talk to some one how got bronchiectasis to hear what the known I have this just three year so I am learning all the time.

[Kissi in reply to Hidden]

I think we all are Paddy, we learn from each other. Take care. Kissi x

[helingmic]

Hi Kissi,

I had this feeling when I was first diagnosed with bronchiectasis. I had so may infections too and nasty ones at that! One thing that improves it, funnily enough, is exercises. Please ask your doctor or pulmonary nurse to enrol you on Pulmonary Rehabilitation (PR).

At first, I was really not keen, because I was so short of breath. The good thing about PR is that your abilities are assessed. you can ask questions about your disease, and you get a description of lung problems, inhalers, nebulisers.

You also do in group a set of exercises in a circuit. The sessions last about six weeks, after which they ask you if you want to carry on.

I did this. I didn't feel grand, but I stick to it and stuck to the gym after that. It has freed me, as well as the prescribed drugs.

Have courage. You can improve. Take it gently and you'll get there

[Kissi in reply to helingmic]

Oh Hellingmic, if only I knew about this two years ago after I was diagnosed! It's been a terrible two years with a partial collapsed lung and constant infection, but after 10 days at RBH on IV AB's I now have a re inflated lung and no infection!! I also have a referral for this PR. I was always a fit person so I cannot wait to start this. And thank you so much for the advice, that's so great to hear it works. Feeling very positive for the future now! Thank you and take care. Kissi :))

[helingmic in reply to Kissi]

The power of the mind through fitness is a fantastic asset. Carry on believe in yourself! Of course, you do have to put your trust in your consultant and work with him, but ultimately, You are the person that can make a total difference. Cheers, xx

[stillmovin in reply to helingmic]

Such encouraging words, helingmic. It is nice to hear them. I think pulmonary rehab is a great idea but I had to miss the last week and final assessment as I got ill with some sort of infection/breathing issue which I may have caught there! A few of us were dropping like flies. I agree that exercise is very helpful. At the moment, I haven't been getting sleep for a while and it is knocking the steam out of me so I am too cream-crackered to do any vigorous exercise. Take care xxx stillmovin

[helingmic in reply to stillmovin]

Stillmoving. Of course, you have to deal with your priorities first. I hope you deal with the infection. But I do hope you get some sleep too.

Sometimes, I take some Kalm to induce sleep, but only once in a while.

However, i do wake up at around 4 ot 5 am. I find it difficult, but not impossible to induce sleep through a "sleep CD". You have to find what works for you, even in a temporary measure. Mic

[stillmovin in reply to helingmic]

Hi again Mic. I do have some good CDs to listen to in bed before I drop off. One is sort of hypnotic but I find that although I drop off to sleep when it is playing, as it comes to an end, it awakens me and sounds very creepy as well!!!! The hours between 2 - 5 am are the wake-up hours for me and that can be due to anything I have had as my last meal (I have GORD) and/or long-term worry about certain things which have not been resolved in my life and additionally, having to cough up phlegm or go to the loo! xxx

[helingmic in reply to stillmovin]

Stillmoving, Don’t listen to horror creepy things in the night! Perhaps you ought to find something more restful that doesn’t end abruptly. (But it’s true, it’s not easy finding the right CD.) I listen to Classic FM with a 20 minutes timer which switches the radio off. Sometimes, I like the music so much that I want to carry on listening!

Deep breating and concentrating on the breath and what it does to the body may work. I read a book called Catastrophe living by Jon Kabat Zinn, it’s about mindfulness and pretty good although a thick book. But don’t buy any of his CDs they are boooooooooooring! Although his idea of body sectioning is not bad. There’s something called Yoga Nidra which is also an exploration of the body with regards to the bed. One CD says, concentrate on the space between your back and the bed! Concentrate on the space between your eyelids and back to the space between the body and the bed!

I found (a nurse actually put my bed head rest at 90 degree! I asked the physiotherapist if she could provide a back rest) that lying on a back rest allows me to sleep better wihout the mucus coming up.

Worries, I know all about worries! That’s why I am listening to John Selby “have a good night sleep”. I downloaded the MP3 and then copied it on a CD. His voice is soothing and friendly.

Hope this gives you some ideas. Mic

[Wisteria123]

Hi all I. Have been diagnosed with bronchiectasis about 2 years ago have had a few bad times with it,but I am now

Having a pain in my back seem,s like the bottom of my lungs

It is worse when I,m walking or if I stand to long I,m wondering

If any you sufferer,s get this by the way it is very good to be

Able to talk to folk,s with the same condition.

[Kissi in reply to Wisteria123]

Hi wisteria, sounds just like my pain it comforting in many ways that this is what everyone gets with this condition! X

[tomc]

Hi, I was initially diagnosed with asthma 15 years ago, after 10 years and a stay in hospital, the hospital consultant said " I don't think you ever had asthma, it`s Bronchiectasis and scarred lung.

A few year ago at review they said oh! you have asthma! Bronchiectasis and scarred lung, haha, Hat trick...............then for good measure they threw in COPD.

All the time I was seeing my GP I kept telling him I had sore back, chest and pain in my left arm with tingling in my fingers.

He too said it was muscular pain and damage to the soft tissue of my left shoulder after an accident at work.

Reading the posts here from other members it would seem that all these symptoms are unilaterally part of the disease, and I for one am happy to see that, (although not happy that anyone has to endure it).

I don't at the moment have an infection, but I constantly feel like I am having an asthma attack and always tired heavy sluggish and puffing like a steam engine( not as spritely as a train though).

I guess it is something we just have to live with and live our lives to the fullest fitness for as long as is possible.

Hopefully that will be in to my Nineties, so I can get my money back in pension I paid this evil minded government who don't seem to like the sick, disabled or elderly.

Positive thoughts and goals make a huge contribution to your well being.

PR is something that has never been mentioned to me, I have only read other members description of it, however, I see my GP Monday 10th February and I will be asking him about a referral as I think it could be another tool in our arsenal.

We have to help ourselves as much as we can, and the site members certainly give valuable information towards that goal.

Keep well.

Tom.

[Kissi in reply to tomc]

Wow! They took their time diagnosing you Tom! I agree with you we need to get on top of things ourselves as it's my experience that GP's know very little about specific diseases, Jack of all trades, master of none! I fought for every referral from day one. My doctor would still be treating me with pain killers and depression if I hadn't stuck up for myself! This site if great it's given me so much information. Good luck with the 10 th February. Hope all goes well. Many thanks for your response. Kissi

[tomc in reply to Kissi]

Thank`s Kissi

I hope you manage to get things sorted out satisfactorily also.

It is pretty distressing to think your GPs diagnosis is way off track.

Keep well.

Tom.

[poppyval]

Hi Kissi, I have Pulmonary Fibrosis and Rheumatoid Arthritis as well as bonchiectstatis and have the same problems. Just got over 3rd chest infection in as many months. Been left with a very dry cough since antibiotics finished. This coughing seems to rack all the muscles and cause pain. I too have had the pain at the bottom of my lungs, doc checked it out as this could be infection coming back, but said it wasn't. I have had an awful breathlessness for the last couple of months, and am going to P Rehab next Monday to do the 6 minute walk again to test my lung function, as it looks like I might need oxygen now. Cheryl

[Kissi in reply to poppyval]

Oh boy, Cheryl, poor you! It's a horrible condition we have and obviously yours made worse by all the other conditions ....good luck with PR I hope you get sorted and start feeling better soon. Take care. Kissi

[tigershay1]

Hi Kissi ive just been for second opinion as was diagnosed with asthma some 16 yrs ago following pneumonia. I was fine for years until 2009 when repeated chest infections surfaced this has been my winter since ...this year the worst ever needing 8 lots of antibiotics and steroids which im still on till i have a ct scan. My gp has been fantastic in fact it was the consultant who she referred me to last year who has done nothing just another inhaler and tablet but no tests. So this year ive asked for second opinion and went yesterday ....he organised bloods skin prick and CT scan to follow took all my history and once he has rsults from scsn will start me on a treatment plan. Bronchiactisis has been mentioned and my chest at prsent feels heavy and pain in lower left which is where all my infections end up. I think theres a lot of misdiagnosis as asthma presents othrr similar lung disease ive taken numerous meds over the years that i havent needed. Like you i think you have to be determined as it is us that knows our body best. Take care judith x

[Kissi in reply to tigershay1]

Hi Judith, sounds like you've had a rotten time of it! I do hope this new consultant sorts you out. I think the worst part about any pain is not knowing what it is or why you're getting it. I can deal with my pain better than I deal with the heavy lungs, as although other sufferers get this, the doctors/ specialist don't know why! I'm keeping a diary now to see if food, situations or anything else makes things worse! Good luck with everything and take care. Thank you for responding. Kissi x

[stillmovin in reply to Kissi]

Hi Kissi, when you mention food having an effect on bronchiectasis (or any lung problem) I must agree that I have noticed a connection, particularly when I have a coffee, any milk & cheese. It seems to cause me to be up during the early hours needing to cough up phlegm. Same with chocolate and sugars. All the nice things, eh! However, at the moment I am going through an awful phase of dry coughs and no phlegm shifting at all, which makes me think of it sitting there in those puddles, needing budged! xxxxxxxx

[123podmore]

good morning love, you need to go to see lung specialist ,he give me antibiotic to take one week yes and one week no, to prevent infactions

[Hidden]

Hi Kissi I just wonder if you use a flutter or something similar for your physio as this really helps. I had pain on the right side for two years until I got correctly diagnosed with Bronchiectasis. After that sore nearly all the time, but I now I use the flutter much better, probably pulled muscles unless had chest inf.However, if I let cold wind enter my mouth I certainly know about it. When I queried pain I was told it was just inflammation! Best of luck KatieJJ

[Kissi in reply to Hidden]

Hi Katie yes I use a flutter and find it incredibly helpful! I can relate to everything you say and somehow that is very comforting!! Thank you for responding. Thank you and take care Kissi

[Hidden]

Hi KIssi Gave you an earler reply when I said just had sore chest. Got it wrong have always blamed what ""I call a very heavy old man sitting on my chest". Thought it was acid reflux asit seems to be both sides not just damaged lung side, also similar to my husband's duodenal ulcer acidity,. However, salty sputum and then going down with lung inf. thinks it is what you and everybody else say , almost a permanent symptom. Tom expressed just how I feel, tired, heavy and plodding!! I find it frustrating when there is much to do. Anyway I hope you are feeling much better now. I feel I should give my GP a few lessons on Bronchiectasis KJJ

[Kissi in reply to Hidden]

Haha Katie, yeah you and me both re giving a few lessons to the 'GP' mine knows absolutely nothing about Bronchiectasis! got my inf all cleared up at the RBH but my lung pain in excruciating at times, two nights this week I've had no sleep at all!!!! I guess the pain is just a symptom of the desease although I haven't met a doctor yet that will say so. This site is the only place I get good advice, interesting facts and support! Are you on a daily anti b ? I just started taking doxycycline 100mg daily! Not happy but hey ho . I hope you get your inf cleared and feel better soon. Best wishes Kissi x

[Mike317]

Hi folks, I am new to the site today. I have posted a summary of my on going azthma probs, but stupidly forgot to mention my bronchiectasis. It is the reason I am frequently prescribed streoid pills (Prednisalone), altho' my GP not often keen on giving me them. Been off work 4 weeks now with chest probs, another week of boredom b4 I see my Doc again. I am thinking of trying the salt caves in Edinburgh as they seem to have good results/comments for peeps like us. Any of you have thoughts on this idea? Cheers.