Fatigue related to Bronchiectasis
Posted , 10 users are following.
Hello All,
I may have asked this before but....
I have had B for years and been through varying phases with it. Currently no infection for 3 months..a miracle.
In the last 4/5 years of the condition I have experienced varying degrees of fatigue when infections take hold. The episodes go from debilitating where I have little or no energy, constant nausea and any kind of physical activity brings on a consequence to low level fatigue whereby you know its there but can generally get on.
I have dealt with my consultant across a couple of years who has essentially given up and was about to press the long term antibiotics button. I have a referral for The Royal Brompton in London. The appointments take about 4 months and I suspect that I may be well by the time it arrives.
My question is to all of you.
If you experience fatigue to whatever degree
a) is it recognised by medics as a apart of your condition? Or ignored
b) has anyone one been offered any treatment /advice on mamagement or been referred to a specialist?
Last year with constant infections and fatigue I became realy mentally low with it all - a round of counselling helped but I would like to know about your specific experiences with this issue. I definitly notice the fatigue in correlation to my B health.
Thank you in advance to anyone that is able to reply.
Johnboy
1 like, 12 replies
steve62514 johnboy1954
Posted
Recurring theme - eg see a relatively recent topic https://patient.info/forums/discuss/fatigue--600464.
Search back through the bronchiectasis questions - I recall there was another discussion on this to which I contributed maybe 3 to 6 months ago.
From reading the forum over a couple of years this is a regular part of bronch X for many (most?) sufferers. I have never seen any silver bulllet treatments or drugs but many people have their own ways of coping. My fatigue is infrequent and not long lasting so I may be of no help myself but I find that the following help me:
* doing deep breathing exercises to force more oxygen into the lungs - for me it stops most shallow fatigues (i.e. more than tirednesses) in their tracks, but will not always rescue a deeply set one if I haven't jumped on it with the breathing in the early stages
* getting up and going for a walk or some exercise - takes a lot of willpower, but the worst thing I can do is sit around and think about how rubbish I'm feeling.
I'm lucky that my fatigues never last long (typically averaging half an hour and never longer than a couple of hours, so my suggestions may not work for you.
Good luck Steve1951!
johnboy1954 steve62514
Posted
Thank you Steve - for your reply and the practical advice.
I think you are very right about finding the will power to get up and do something - it's really about a balance. When I feel less fatigued I want to do more because that makes me feel normal however I have to be careful or the result of the activity will be a a debilitating dose of fatigue.
I feel that I actually don't want to accept that this is a potentially permanent condition. I find it hard to admit what's going on or to ask for help. I think that potentially touching base with a counsellor or independent person to reflect on how you are feeling may be really useful.
Good luck and stay well.
Johnboy
telescape johnboy1954
Posted
Hi Johnboy...Sorry to hear about your health concerns. I have had BX all my life and have always experienced intense tiredness when an infection occured. However when infection cleared up, I was pretty much back to normal. "Normal" for me however, was never the same as for other members of my family who did not have chest problems. I would not say that I was greatly inconvenienced in the past but within this last year (age65), I have noticed a lot more fatigue. I find late nights almost intolerable and even find conversation with those other than family, very tiring. Anxiety and depression are recognised as common features of this disease and I have periods of these from time to time. I have no doubt that fretting about constant infections/medications and long term prognosis are all contributing factors. In addition, I worry about how my condition affects other family members. Healthy people have such a wonderful appetite for life and I worry that my daily routine of Nebulising and huff coughing etc might have a negative effect on their lives. For the last 4/5 months I have taken a one and half hour siesta every day. In addition I feel the need to go to bed around 10.00pm at the latest. Don't know if this helps at all. But you are not alone, Johnboy. Good luck and stay well!!
johnboy1954 telescape
Posted
Thank you for your very honest reply. I recognise elements of all that you say. I am also conscious of how the fatigue, cycle of infections etc affect my mood and the impact that being unwell in this way has upon relationships. I was given a period of counselling this year which I did find helpful in reflecting on how I was behaving and why. It's an important aspect of the illness that we should be made aware of.
Have you had detailed conversations with medics about this aspect at all?
My conversations led me to have a hope that the 'fatigue' part might have a 'curable' cause though I am beginning to realise that this may not be the case. What I was never told was that fatigue happens as a direct consequence of the BX and why.
Have you been offered any advice on the management of the fatigue?
Thank you again for taking the time to reply - I do appreciate it.
Johnboy
telescape johnboy1954
Posted
Hi johnboy, I'm afraid the answer to your questions is no. In relation to "fatigue", medics just seem to smile knowingly. As far as I am concerned, they have given me no advice or help. I just poddle on taking as many naps as I feel I need. It is very anti social going to bed at 10.00pm every night.......but at that stage I am just too tired to do anything else. Sorry I couldn't be of more help. Good luck!
Russell27NOLA johnboy1954
Posted
There are some meds for chronuc fatigue that I have thought about trying but I know that the fatigue is there because I need to rest to let my body heal. I have been making trips to test out my abilty to keep well and did well for two trips and then began to get sick again. But at least I know better how pace myself I think.
Ive been on Azithromycin for about 12 months and have only two exacerbations where as I was sick about every six weeks before. I am looking to the Infectious Disease doctors at one of our big pulmonary hospitals here in The States to see if I am using the AZ tinthe best manner possible.
Hope this helps on the fatigue part of it. It is depressing for sure but I remind myself that I still have life and that is really something to have even if I am chronically ill.
Meditation helps me also along if my meds and my church group and all my friends.
Best of luck
Keep me posted on how you are doing.
Russ
johnboy1954 Russell27NOLA
Posted
Thanks for taking the time Russell.
I feel that I need to accept the reality that the two (fatigue and Bx) can go hand in hand for some but also that I would like the doctors to be able to acknowledge that more and offer support if there is any.
Your positive attitude will go along way - I do find it hard to be positive after a long long spell of infections and fatigue - I notice myself slipping 'down'.
Good luck
John
Nygirl johnboy1954
Posted
I hope you feel better. I understand what you are going through I dealt with this for 5 yr from 8 months of a full blown bronchial attack where I couldnt do anything to constant fatigue and tireness. When ever I got attacks. In recent years it got worst where i had to be on steriods and anitbotics constantly and this year I had 2 option surgery or 6 months of rotating antibotics. What you are feelimg is normal. You might have great energy for some time then back to square one where you have no energy. I used to take emergercy C to give me a boost in my energy level it helped me. You can try that to see if it help you. Good luck with your consult.
Eram
johnboy1954 Nygirl
Posted
Thank you for taking the time to reply.
I am beginning to understand more that Fatigue is a part of the condition.
It's hard to mentally adjust too the fact.
I will keep on searching for strategies to support the condition.
I'll try the ~Vit C.
Take care
Johnny
VRW johnboy1954
Posted
Hi Johnboy all the best with RB I was a patient there... Inpatient on 2 occasions.
Like you I have extreme tiredness that I put down to BX and also medication. I also have to cope with a tracheotomy. That's life!
I went for over 4 years of being in hospital with BX nearly ever other month. But with new medication have managed to stay away for over a year. The important thing is to keep up with your nebulisers and chest clearance.
All the best.
johnboy1954 VRW
Posted
Hello. Thank you for taking the time to reply.
What meds do you have now? Good to hear you are relatively well at the moment.
I went to my RB appt. I have been clear for a while so the consultant didn't have a lot to go on. The interesting bit was that he wasn't convinced that the fatigue, which I now have at some level all the time, is a result of the BX. Said he thought fatigue would happen when you have an infection but not when not? Took blood. Another appt in December. We'll see.
Stay well. Johnboy
Guest johnboy1954
Posted
a) is this recognised by medics? Sadly but all most can suggest is to rest....
b) Not been referred, again only advice is to rest.
I changed by work majorly a couple of years ago in an attempt to find a way through. But after 3 or 4 years have chosen to give up paid employment. Mercifully we can afford this. I seriously don't know what we would have done had i been ten years younger.