Bronchiectasis and Fatigue
Posted , 6 users are following.
Hello,
I am a 62 year old male and have had a diagnosis of B for over 20 years. I am sure that I have shared many similar experiences to you all. Biggest low - pneumonia and 2 weeks of IV antibiotics but that was 8 years ago.
More recently I have had infections that appear to be antibiotic resistant and have gone on for some time. The real change is 'fatigue' which had never happened before seemingly being a part of the infection. A few years ago this went on for sometime until a bronchoscopy was completed and the bugs in my lungs targted with Doxycycllne. This sorted the infection and fatigue - but not for too long. Last year I had an infection that lasted 4 months (none of the usual AB's worked) and fatigue. I was referred to a consultant but the referral took so long it had burned itself out by the time I saw him. 5 months later another infection. I have fatigue again. just finished my 3rd course of AB's.
My question is - has anyone else been dealing with fatigue as a part of this condition?
The fatigue is debilitating - any type of exercise or even just a busy day will result in feeling unwell sometimes to the point of bed being the ony answer. It's frustrating for many reasons not least that any form of exercise to support good health is ruled out while this goes on.
I would appreciate to know about any of your exoeriences.
Thank you
John
2 likes, 8 replies
janet01076 johnboy1954
Posted
Compared with you and others I am a novice with Bronchiectasis. I was diagnosed last year, but was having continual infections (with blood). Last year I was put on regular antibiotics - twice a week. It was wonderful until Christmas and then despite these I had infections, after infections. Then the Consultant suggested a nebulizer with Colomycin which I began in July for 3 months. This seems to have killed the pseudomona but I shall be very pleased to come off the Colomycin because of the side effects. Your point about tiredness is the experience I have had most of the time because of infections and breathlessness - I am 64. As you say exercise is healthy, I have always been used to a lot, but now if I do some housework for a few hours I find getting the mucus is easier however have to rest the next day. Walking is much the same, except now I am trying to do a couple of days - only short walks but 3 a day. The chest physio (coughing) I find particularly tiring. Personally I think the bronchiectasis has crept up on me as for 2-3 years prior to diagnoses I was finding I had to cut down walking, especially hills. The coughing up blood was my turning point to the GP doing further investigations and very quickly. So I am thankful for that and also for discovering this site where people are helpful, even if I only read their experiences.
I understand that pacing yourself is a way to cope with the fatigue and tiredness, but I do not find this very easy to do. As you say John a busy day just happens despite ones planning. My name is down for a rehab course where I am told tips for pacing oneself can be picked up.
Another thing I find makes my fatigue/tiredness worse is antibiotics which have so many side effects with me not least both sites for thrush. I use probiotics, natural yogurt and try and cut sugary foods, drinks down to a minimum. but still have it and have to take more medication. Thrush interfers with my eating as it goes into my throat etc so this makes me eat or drink things that slide down or just drink. This makes me verry tired.
Hope this helps John. How you and others have managed for many years is somthing I find admirable.
J
johnboy1954 janet01076
Posted
Hello Janet,
Thank you for taking the time to reply to me. It's clear that everyone has a different experiece with this issue.
I was interested to know whether the medics have said that fatigiue is definitely connected with this condition? My personal experience is that I thought that maybe they thought it was something different. The few replies that I haver had may affect my thinking.
I sometimes find the fatigue harder than the infection - even though ~I know they may be one and the same thing - it's very pervasive and inhibits your normal life style. I also get to moan a lot.
My infections seem to be resistent to the AB's given - just been referred to a consultant again.
Good luck with everything - I wish you well.
John
janet01076 johnboy1954
Posted
Hello John
Yes I agree, we are all different in the way bronchiectasis affects us.
Fatigue is a recognized symptom of our problem. I have discovered information both here, throught the 'medics' and online. Of course I have sifted through some which is either incorrect or I haven't experienced it. Online I have found www.bronchiectasishelp.org.uk/ helpful and someone on the forum recommended www.chss.org.uk Scottish based, but offers some wonderful tips.
As I said my experience is very short in comparison with yours and others so I hope this helps. Also that you receive the antibiotic which kills your infections' bug.
Best wishes
Janet
lordlopp johnboy1954
Posted
Hi John, the fatigue is a large part of my Bronchiectasis. With infection I can sleep 18hrs get up and 2hrs later be exhausted and have to return to the bed......and nd the cycle begins again. It's been like this for 5 years now and has ruined my life from being normal. But happy days live on.
johnboy1954 lordlopp
Posted
Hello - thank you for your reply.
Do the medics definitely connect your infections to the fatigue? Sorry if this sounds like a silly question.
How often do you get infections and what are they treated with?
What do the medics do about the fatigue? Treatment plan?
I'd be interested to now.
You sound as if you manage somehow to stay positive.
Good luck.
Stay well.
John
lordlopp johnboy1954
Posted
Hi John, some consultants connect the fatigue with the disease and others don't recognise it at all which is quite worrying. The only treatment plan they have for the fatigue is sleeping what life I have left away it seems. And as for antibiotics they just use penicillin and derivatives of penicillin. Also I use Symbicort 200/6 inhaler to reduce inflammation in the pipes. I have had this since I was 37 but not diagnosed until a year later. Clashes of opinion with doctors and consultants
Russell27NOLA johnboy1954
Posted
Before I started on Azithromycin over six months ago I was having almost constant infections (twelve in a ten month period) and they were all accomaned by fatigue.
Since starting the AZ I have had only one infection, which corrolated to a one week period that I did not take the medication while transfering to a lower dose.
So the AZ has been a big help for me and others on our site. My exercise level has been near normal. Three days a week on my staionary bike for 20 minutes. Streching and weights.
But I have been experiecing more fatigue for the week. I go to bed around 11 or 12 and wakeup at 7 or 8 and stay in bed until 10 or 11.
I had not had sputum production for a few week period until several days ago, but had chalked it up to haven taken Bactrim for an infection from my dog scatching me.
I hope you and your doctors are able to figure out something out for your self
I hope this helps,
Please keep my posted on your progress.
Best
Russ
johnboy1954 Russell27NOLA
Posted
Thank you for your reply. Some more questions please. Hope this is ok.
Is taking AZ common?
Do you expereience any side effects?
Is the long term plan to carry on with AZ?
I have a consultant referral sometime soon ish and would be good to have some questions.
Thanks
John