Posted , 7 users are following.
I was diagnosed with bronchiectasis just by chance a couple of months ago – no symptoms – but now I have a cold/cough and the worst of it is extreme lassitude (as the nurse practitioner called it) – I can't stand up for long, I get faint and sick, and basically I just want to sleep. Is that normal?
1 like, 34 replies
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Operalyn sue73
Posted
Sue bronchiectasis makes you tired - obviously when you think about it - your lungs aren't working properly and they are your organs of breath. It's worse when you're ill. Are you coughing up lots of phlegm? Do you know how to clear your lungs properly? Have you been referred to a respiratory department? You need help with breathing exercises and clearing all the rubbish from your lungs. That will help. However when you've got a virus you just need to give in to it - rest, rest, rest and drink lots of fluids. Fresh air helps too but that's not easy at this time of year. Sorry you're feeling so rough. Xx
sue73 Operalyn
Posted
Thank you for your prompt reply, Operalyn. I don't usually have any symptoms – I lead a very active life indeed – so it's hard to come to terms with just a cold making me feel so ill. No, I'm not coughing up any phlegm. I was offered breathing exercises but turned them down because normally I have no symptoms at all. I have my first appt with the respiratory clinic next week and I expect they'll offer me breathing exercises again, but to be honest I find the whole idea so horrible because I think of myself as so fit and healthy.
You're right – rest, rest, rest and lots of fluids, but I'm in denial at the moment!
fantasticjudyan sue73
Posted
That’s just what is happening to me.... see my newbie introduction post!
As I asked before , is this normal?
Operalyn fantasticjudyan
Posted
Yes! For the reasons stated above.
If you've been diagnosed with bronchiectasis it's quite liveable with as long as you accept it and follow a few rules. I have had it since I was a baby and I was rebellious when I was in my teens and twenties - of course this meant I felt really bad and was always picking up infections. Now I am better behaved - do my exercises, use my puffers, do my physio, take antibiotics when I get an infection and my life is far better. I still get tired but that's normal. Good luck both of you and get as much help as you can.
Jockeys sue73
Posted
Jokeys
aitarg35939 sue73
Posted
The lassitude & cyrrent cold suck, but you are very fortunate if you have no symptoms & can be active. After the 4th or 5th time that walking my dog 1-2 miles took me to the ER last year, walking in between 8 rounds of ABs, my pulmo banned me from walking. Just now I am able to do very gentle water exercises. So many on here are in worse shape than me.
If I were you, I'd listen to every tip they give you in that meeting & learn the exercises. Otherwise you might end up like me, spending HOURS daily on nebulizer and lung-pounding, stupud-expensive machines. Much of my circumstance is my fault for not continuing to follow doc's orders from 6 years ago: I knew better. Ha!
Be smarter than I was & do what they tell you to protect what you've got in fitness & lung power.
janet24 aitarg35939
Posted
Oh dear I'm certainly a rebellious one too.
I was diagnosed at the end of 2016 and couldn't believe it.
I don't seem to tick any of the boxes though. I never get a cough or cold but whatever 'bug' I get goes straight to tight breathing and heads down to the lungs and I don't cough either. Since mid October I've had 2 courses of abs for one week and 2 courses for 2 weeks and I'm still not out of the woods as since mid Dec I developed pleurisy to boot.
In my head I want to carry on as normal and push myself until I can't breathe before I have to give in and sit down to rest....sigh.
Maybe because I've a very long history as asthma from childhood and lots of chest infections etc I learned to just carry on.
I'm waiting for a CT scan on 24th January which will be compared to the one I had last year. My respiratory consultant is excellent. I saw her on Thursday and am to see her again next Thursday too. One thing I do know is my aspergillus has flared up again...so I'm back on Itraconazole again for 3 mths. Apparently the aspergillus isn't in my lungs but may aggravate the airways?
The physio has just recommended an acapella....for lung clearance...not sure if that will help as I don't cough but worth a try.
I find the fatigue debilitating too especially when taking long courses of steroids...
All we can do is keep going....
Operalyn janet24
Posted
Sorry you're having such a bad time . I don't cough much but produce tons of sputum every day.
I absolutely think you should be rebellious! Just keep on keeping on - but when your body is shouting I absolutely must rest and have a hot drink then you absolutely must listen. It saves heartache and long spells of illness.
sue73 Operalyn
Posted
Operalyn I don't understand how you can not cough much but produce tons of sputum? I thought sputum was what you cough up? Please explain!
I am also v. worried because at the moment literally every time I stand up to do something I feel sick and faint. And I hate having to give up pleasures – can't manage any of my volunteering, or pilates, or exhibitions, or my recorder ensemble or just about anything apart from sitting at home working.
Operalyn sue73
Posted
I have to stimulate a cough to fetch up the sputum when I do my postural drainage. What I mean is I am not constantly coughing. Not most days anyway. I do have days when I cough more but have no idea why. I have a real wet cough - sound like I an a heavy smoker. I'm not! If I breathe deeply you hear a real rattle from my chest but I don't wheeze much like asthma sufferers do.
My lungs just do produce masses of gunk. I have chronic sinusitis too so the mucous passes down the back of my throat into my lungs. Sorry to be so graphic.
Of course you want to do everything you've always done.. I have always pushed myself to the limit. However you pay by being exhausted or you prioritise what's most important.
I recently saw my specialist and was told I manage my complaint well - this means doing postural drainage once or twice a day, using my steroid puffer and drinking lots of water. I exercise to a point but do keep active. I go to bed when I'm tired no matter how early. I worked from the age of 16 to the age of 66 (part time for the last few years) and have done most things I wanted to. My only big sacrifice was children. I was advised not to.
There are other treatments available - like nebulizing . I can't do that because when I tried it tightened up my chest and I couldn't breathe. Also taking the antibiotic Azithromycin three times a week helps many people. Unfortunately it gave me constant stomach cramps and diahorrhea.
Life may seem bleak and I have my off days when I feel very sorry for myself but I have had bronchiectasis since 1949. I don't remember life without it. I hope you find a way forward that works for you.
Operalyn sue73
Posted
I think it's so much harder when you are diagnosed as an adult or the condition arrives when you're an adult. I've been doing breathing exercises and postural drainage all my life so it's second nature but I always worked (although some employers were not understanding about time off) , had a fun time in my young days - parties, concerts, late nights, festivals and all. I was never sporty but I walked miles. What stops me now is a spinal problem not breathing. I've been a reformed character in later years and always do what I'm told by the doctors. I am not good at resting but you have to give in. Fighting just prolongs the problem. So keep your spirits up if you can - rest when you feel tired, get fresh air and breathe it in, get as much exercise as you can tolerate but don't push, some days will be better than others, learn to live with it - it's a permanent condition. Your lungs are damaged but you're still you.
fantasticjudyan sue73
Posted
Hi All
Thank you for your replies and helpful comments😊
I also have chronic back pain as well as the B.
My pain consultant says I should take plenty of excercise together with my painkillers
I went for a 4 mile walk last week while on holiday with my husband.
It took me four days to recover I felt so bad!
I used to walk a lot before the pain set in , so it’s difficult to do what both my consultants tell me to do.
How do I keep active and yet not overdo it? I am planning to return to my Yoga and Pilates next week. Both last an hour.
I will see how that affects me.
My teachers are aware of the pain problem but not the B as the diagnosis was very recent.
I am feeling very aggrieved that I now have another condition that looks set to rule my life but I guess I have to keep positive.
Operalyn fantasticjudyan
Posted
Four miles is a LOT for a bronchiectasis patient. And you should walk for as far as you can manage, then stop. Keep at it gradually increasing over time until you get to your limit. There is a limit but it's different for everyone. Your back specialist will be glad if you walk at all! So many people don't.. Don't panic, make gradual changes and don't compare with how you were. I have got serious hip and back pain now which is new to me - I am in the middle of a learning curve too.
sue73
Posted
Thank you so much for all your lovely replies. It's brilliant to know I'm not alone and that there's a lot of rebelliousness out there! I just can't get my head around this stuff. I must ride out this current infection or whatever it is, and go to the consultation on thursday and DO WHAT I'M TOLD!!! What I am finding particularly difficult is admitting it to friends and colleagues. I keep having to cancel things I'd planned because I just can't stand up for long, and I find that so embarrassing. I don't want to make a fuss! I'm English, I don't do fuss and I don't want to look pathetic. This is all so new to me.
aitarg35939 sue73
Posted
You'll tell people as & when you're comfortable, even if it's just "i've got a little trouble with my lungs lately, not cancer or anything, but that's why I'm not getting out much. Nothing for you to be concerned about."
It is an adjustment. I had a very bad fall 30 years ago, messed up all cervical and lumbar vertebra, along with a few other parts. It still rules my life tho now it shares that crown with BX.
To both you & Judyan I would say this: It isn't enough to have the energy to get there; we also need the energy to get back. Your lungs will now be much more sensitive to everything in the air -- pollution, pollen, cold, intense heat, perfume/aftershave, nail polish & remover, hair products, candles, and the stupid household stink bombs to which 90% of my fellow Americans are addicted. That's another adjustment in addition to the energy part, and since those things affect your lungs they also impact your energy.
sue73 aitarg35939
Posted
Last year as usual I went on a couple of walking holidays and did four miles daily without any problem. Didn't even think about it. My lung function measured by one of those machines is over 100% of predicted (I'm 72. My lungs are apparently 60!). And yet I have this life-changing lung disease? I just can't get my head around it.
fantasticjudyan aitarg35939
Posted
After my 4 mile walk of ten days ago, I decided to do a very short flat walk in the park today.
It wasn’t more than about 3/4 mile.
came back and felt fine.
That experience tells me that it might be preferable to do these short walks on a regular basis rather than the very occasional long yomp.
So I am going to practice doing this and see how I go.
It is reassuring to hear from others that BX isn’t their only problem.
As well as chronic back pain that I mentioned before, I also have osteoarthritis in my big toe joints that my consultant keeps surgery at bay by giving me steroid injections into the joint from time to time.
I also had a knee replacement 2 years ago because I developed oseonecrosis. I then developed the same thing in the other knee but so far that is surviving ok without the need for another replacement.
I also experienced Bile Salt Diarrhoea for 20 years after having my gall bladder out.
i read about a Sechat scan a couple of years ago and when I had it done it showed positive. They had diagnosed IBS previously and gave me Imodium which didn’t work and I hardly left the house.
Now, with the proper diagnosis, I take Colesevalem which is a very expensive drug, rarely prescribed and I now have that part of my life back.
I often wonder what I could have done in a previous life to deserve all this.
Who knows, but the title of a well known Jane Fonda film springs to mind.......They Shoot HorsesDont They?
Discussion for another time perhaps!